Oh Christmas Tree

This week I have been doing a lot of evaluating on the life we are giving Malachi, and I decided we needed more “silly” things for him to be excited about. More traditions. We aren’t big holiday people- we don’t even really get into celebrating birthdays. Christmas is proving to be particularly hard for me as I can’t stop flashing back to Levi’s hospital stay last Christmas. On a whim I asked Malachi if he would like to go pick out a Christmas tree and he about fell out of his chair enthusiastically signing YES.

So on Saturday we headed to the store, Malachi wide eyed with excitement as I told him that some trees were soft like a puppy dog and some were sharp, like the teeth of a dinosaur. I told him we would let him feel them both and decide which one he wanted. Little did we know that Americans are crazy about Christmas and by the first week in December nearly every place is out of quality Christmas things. Duly noted for next year. We managed to find a handful of “sharp” Christmas trees left at a local store and Malachi was smitten. We loaded one into the van and when we got it home Malachi couldn’t stop giggling. Then we turned the Christmas lights on and he really lost it with excitement.

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I went down into the basement and dug out a few bins marked “Christmas” that have made the move with us from the cabin to the rental to the new house. I opened them up and got hit with a wave of nausea as I looked inside. I remember buying these decorations pre-Malachi and daydreaming about all of the memories we would have with them. I had envisioned all of the kids helping me unpack these bins and decorate the house, fighting over which favorite ornament they would get to hang on the tree. It was like a time capsule of a life I envisioned I would have.

I talk to you often about the grieving process special needs parents go through. It never really completely ends, and such small and insignificant things can trigger it.

But I thought about that sweet little 5 year old upstairs, tickled by the lights on his real Christmas tree and I hauled those bins up the stairs, verbally dictating each ornament I placed on the tree so I could share some of the magic with him.

He is pretty much obsessed with the tree. We had someone stop by last night and I am confident Malachi thought the only reason he came was to gaze at the tree he picked out. We have put one of his switches by the tree and each morning and night we have Malachi “turn on/off the lights”- one of us hides by the outlet and waits for him to push the switch- timing it so he thinks he is doing it. Mr. Independent.

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Every now and then I get the feeling that an emotional burst is about to take place. The last time this happened I was able to ward it off until the feeling went away. I am currently in one of those battles against fragility but still winning! We will see what this week holds before I do my victory dance.

Levi learned how to sit independently this week! And how to get up from the floor to the sitting position all by himself. Big boy! The pillow is there just in case but he is able to stay like this for over 45 minutes.

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We also discovered this week that Levi is NOT a morning person.

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Malachi and Levi are both in the church Christmas play this year- Malachi is a camel (we think) and Levi is a donkey. Their big debut is a week from today.

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Tuesday’s neurosurgery appointment went well, so well that the doctor agreed to change him to an annual check up instead of bi-annually. Praise the Lord for less appointments! We talked about the MRI chaos from 6 months ago and decided to wait to get baseline imaging for another year, and this time around we will go for a CT.

We loaded up from the hospital and headed back towards home for a very special meeting with the high school class that is going to be working on Malachi’s Christmas toy.  If you weren’t able to read last week’s blog, a local group of students is going to adapt a ride on toy for Malachi to make it remotely controlled. This is a HUGE project and we are so excited to find some brilliant minds willing to tackle it for us.

I was about 20 minutes away when I got a call from the local news station asking if they could do an interview and come to the high school for our meeting. I am all about opportunities for awareness so I told them I wouldn’t mind.

I learned something about Malachi this week- he cannot handle big surprises. I have been keeping this project a secret from him. When we got to the school the class came to greet us and we went back to the classroom to discuss Malachi’s needs. Malachi seemed very overwhelmed by the situation and was acting very tense. Then he started to get emotional, sensing that everyone was looking at him and mommy was talking about him. Sweet little tender heart. He is always up for adventures but this was the first time I didn’t explain in detail where we were going or what we were doing. Lesson learned!

The meeting went so well and the students asked very specific questions that would help them create something special and perfect. When we presented this need we simply asked for someone to make the machine remote controlled. But as these kids processed Malachi’s story they decided to make this even bigger, talking about giving the machine a dinosaur theme and installing speakers for dinosaur noises and music. They had so many ideas- even a sidekick car for Levi to ride in. The thing that struck me the most was their genuine excitement to help. It didn’t feel like they were “doing a favor for us” but rather they genuinely wanted to make this a reality for Malachi. What a special group of students, and I can’t even process being that intelligent!

Here is the news story that aired about the project…I had to video it with my iphone so the quality isn’t the best:

The news reporter followed up with the class on Thursday to see their progress and sent me these photos:

And a link to that follow-up article:

https://newschannel9.com/news/local/cleveland-high-school-students-get-to-work-on-malachis-new-ride

I am so excited to see what they come up with! And we have already started to explain it to Malachi, and he is SUPER excited. We didn’t want him to get overwhelmed when they present it to him. He giggles each time we tell him about how fast he is going to be able to go.

I gave this week a theme: “Embrace the Tube”, hoping to get over my bad attitude about Malachi’s g-tube. Every doctor we spoke to talked about how much easier it would make our lives. How it would save us so much time in our day, as it was a direct way to feed and medicate Malachi. But this tube has instead been such a negative thing. We are constantly battling granulation tissue (so bad that his therapists say it is the worst they have seen), constant oozing so multiple dressing changes each day, stinkiness from all the oozing, and the doozy— Malachi hates it and cries and tells me “no” anytime I try to send food or meds through it.

So with this week’s new theme in mind I started trying to slowly run feeds in through the tube…so slow that hopefully Malachi wouldn’t even feel it. Immediately after the tube feeds ended Malachi seizures increased and he was out of sorts for hours. The amount of intestinal pressure did not chance with the tube feeds like I had hoped it would, as he wouldn’t be bringing in as much air as his oral feeds. I tried for three days then abandoned my theme and went back to feeding him like normal.

Tomorrow I will meet with the GI doc and we are hoping to switch out the style of tube to help with skin irritation and the granulation tissue. I am just so disappointed, but also so grateful that we didn’t proceed with the tube before now.

On Thursday Malachi started his new seizure medication called Epidiolex. I know I recap a whole lot so bear with me- but it is the first FDA approved cannabidiol medication. I went renegade about two years ago and started CBD oil on my own but got a little scared to keep increasing without being under doctor supervision as it can mess with liver function and needs to be monitored closely. But we are seeing the same initial results with this new med and he has slept 7-8 hours a night (with just one short wake up session in the middle) since we started it. His seizures are also slightly less intense, but he is still having about 8 of them a day. He is very sleepy as his body adjusts but we expected that. This Thursday we will double the dose, officially taking him higher than I was ever willing to go so I am excited to see what positive changes will happen.

Just a little humor for you today…this morning I did a lesson with the children at our church about the Last Supper. Last Sunday we had done church wide communion and it seemed like good timing for me to teach them the symbolism of the bread being the body of Christ and the juice being the blood that He shed for us. I explained to them that these were just symbols- things to remind us about the sacrifice Jesus made for us. Then I let them each take a cracker and break it, encouraging them to think about how much Jesus loved them. After the lesson I let them eat their cracker just for “waste not want not” purposes. It was definitely an ambitious lesson for the kids (ages 3-11) but when we got in the car after church I told Jake how well the lesson went!

Tonight I talked to a parent whose 5 year old son was in the room. She said she asked him when they got in the car what he did in children’s church and he replied “I ate Jesus’ skin.” Let’s all collectively cringe and laugh at that comment! Oh dear.

This week I will be tackling physical therapy and feeding therapy for both boys; Malachi also has horse therapy, GI and the dentist, and Levi has Neurology and Pulmonology appointments. Lots of hospital days and busyness!

Devotional thought time. Writing this blog each week is a wonderful challenge for me on so many levels. Emotionally it allows me to dump out everything in my heart and sometimes that action allows me to walk away from those emotions. Physically, I selfishly get to sit and do something I enjoy doing (writing) while Jake takes the kids. Cha-ching. That was a cash register noise if you didn’t get that. Spiritually it challenges me in my prayers to ask God to lay something on my heart. Every time I ask He comes through. That’s one of the many cool things about God.

This week has been a “dark” week for me. I have just felt so discouraged. I laid in bed this week and prayed over Malachi sleeping quietly next time me. As the words came out of my mouth “God heal his brain and stop his seizures…” he went into a two minute long seizure. Talk about discouraging! I try to pray with true faith and belief that God can do the impossible but my endurance lately has been wavering.

Tonight Malachi and I went on a date. This is the second one this week and is a result of the creating traditions challenge I mentioned earlier. Just he and I went to listen to the Christmas cantata at church and they sang a song that he knows very well. He was overjoyed and I encouraged him to sing along. He gathered up a burst of strength and opened his little mouth in anticipation but nothing came out. He tried again and again, each time yielding silence.

As I watch him struggle in a fight between his brain and his body I find my heart hurting deep within my chest. I would trade places with him in a heartbeat if it meant I could take some of the pain from his life. I never want him to think I view his struggles as a sad thing, I only want to encourage him, so I have to fight the urge to cry and tell him what a great job he is doing mouthing the words that he wants to say. I have to help him find beauty in the ashes, even though sometimes it is hard for even me to find.

This week I caught myself wishing I could talk to God about this suffering my son is going through. I started to convince myself that this is a struggle that is totally unique to me. No one else gets it.

And as I camped out on that mindset God started to flood me with story after story from the Bible of other moms who “get it”.

Hagar, the mother of Ishmael. She was exiled into the desert with her son they ran out of water. The boy was crying and she set him under a bush. The Bible then says in Genesis 21:16 “Then she went off and sat down about a bowshot away, for she thought, “I cannot watch the boy die. And as she sat there, she began to sob.”

Moses’ mother, who hid her child as long as she could and in an act of desperation put him in a basket and into the river. The suffering and turmoil that decision must have brought her.

The widow from the story of Elijah. She and her son nearly starved to death. Then later the boy grew very sick and died. Elijah brought him back to life.

The woman in the New Testament who was in a funeral procession to carry her dead son to his grave when Jesus brought him back to life.

Then there is Mary…who watched her sweet and perfect son be brutally crucified, unable to stop his suffering.

As I thought about each of these stories I realized an eerily common thread. In each story the child came close to death or actually died before the Lord intervened. Why? Why in the world does God not see our suffering and ease that burden long before the thought of death is even there? Does God enjoy seeing our suffering, hoping that it will bring us close to Him?

I say this again and again but God is a God of compassion. The Bible tells us about His compassion over and over again in the scriptures…

Jeremiah 29:11 ‘ “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you a hope and a future.” ‘

Trials and tribulations do not come from God. He does not create suffering in our lives to make us grow closer to Him or to test our faith. He is a good God and a loving God. Trials are a tactic the enemy uses to draw attention away from our relationship with God. And in those dark moments, the temptation to not turn to God is a real struggle.

But what I want you all to hear me say tonight is that GOD IS ALWAYS RIGHT NEXT TO YOU. Even in your trials, even in your suffering, even in your misery. He never leaves your side. And He sits close enough to speak life and encouragement into your ears….you just need to listen! He never promised to take away our struggles, but He does offer us a promise of His peace along with a reminder that He has overcome this filthy, evil world that we are passing through.

John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Every single mom I could think of in the Bible that experienced suffering through the lives of her children had their God moment. They had that moment when He glued all of the pieces together and flipped over that puzzle to reveal that all along He had a a beautiful picture already designed from what we saw as chaos.

I think about the story of Joseph, a man who went through trial after trial. And he spoke these words:

Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.”

When I read that verse, I find myself wanting to speak these words to the devil himself in regards to my family. What Satan intends as harm, God intends for good. And my prayer is that even through our trials, God will continue to use the Carroll family to be a lighthouse that can be seen through the storms.

Please keep our family in your prayers this week, particularly health both physically and mentally.

 

 

 

 

 

 

 

The Road Not Taken

Lots of little but good things happened this week:

Levi finished his antibiotic! We are hoping the ear infections stay away. I know that sounds simple and not noteworthy, but the meds seemed to be hyping him up more than normal. Like bedtime at 2am hyper.

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Malachi is officially on top of his pain from foot surgery. We even took off the casts this week for a much needed shower, which he was so excited about- he loves his shower!

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Levi had his one year checkup at the pediatrician’s office. She was pleasantly surprised by how well he is breathing. He really only squeaks when he is sleeping now, which tells us his airway is growing and his vocal cords are widening. His sleeping squeak is still impressively loud but we have grown so used to it that it doesn’t keep us awake. Oddly enough, is actually brings me some peace as I know whether or not he is breathing. We still keep him hooked to his monitors at night, which is also an added stress reliever.

Levi weighed in at 19 pounds 2 ounces (14th percentile) and 29.25 inches long (20th percentile). Considering his rough start and his low birth weight I am thrilled. Just for some perspective, Malachi weighed 12 pounds on his first birthday and was wearing 3-6 month clothes! So in Carroll world, Levi is a giant haha!

And he is so incredibly close to independent sitting. I tried to take a video this week and he made a dive in the process haha.

Here is a photo if you are unable to watch the video:

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Malachi got to go back to school one day this week for a few hours. There is so much sickness floating around our community so the decision to send him is always a struggle for me. But when I asked him if he would like to go back this week he was ecstatic; we waited for a day when the teachers said there was very little classroom sickness and sent him for a few hours. It always takes him some time to re-adjust to the sensory overload school provides but he was a happy little boy getting to see his school friends again.

I know I have said this before, but I will mention it again- our parenting motto is giving Malachi the best quality life we can possibly give him. We don’t care that he may never say his ABCs, read a book, do a math problem…our priority in sending him to school is giving him a chance to be around his peers and have some independence away from mom and dad. The control freak in me hates dropping him off and walking away, but I see how much he enjoys having such a big kid thing to do and I try to respect that.

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As you can probably tell from pictures, Levi got a new walker this week. Even though he is our second child, there are so many “firsts” for us as parents. Watching him learn how to maneuver has been a fascinating process. We have had to teach Malachi how to do everything- how to move his mouth to get milk out of a bottle, how to hold his head up, how to punch things with his fist. Seeing a child just naturally do things is such a different experience. We have laughed so hard this week as we have watched Levi discover how to walk in his walker. He loves to walk as close as he can to Malachi, much to Malachi’s delight.

I took a video of his first time in it, and now he is cruising like a champ. I thought I would share that first time video with you as it gives you a good 45 second glance at Levi’s silly personality. Note how proud he is when Jake compliments him at the beginning and his lovely tooting noise at the end…a noise he has officially mastered at waits for less-than-ideal times to practice…like when mom is on the phone with doctors or right in the middle of the Sunday sermon. Here is the video:

We had several appointments this past week, and have several more this week including Malachi’s bi-annual neurosurgery check up. 6 months ago we went to this checkup and they ordered a rapid MRI to get some baseline images of his shunt. When I took him for that MRI things did not go as planned and I had a legit emotional breakdown and snatched him off the table when they talked about bringing in anesthesia to sedate him. I had some major Levi flashbacks that day and left, a sobbing mess.

To me, there is no reason to be so invasive for baseline imaging but I agree that we do need some images. I suspect that since the surgeon did not get that baseline MRI he will want to order a CT this time around but we will see. Malachi likes CTs because the machine makes cool noises, so we can handle that one.

Malachi will also be starting his new Epidiolex medication this week. This is the first FDA approved cannabidiol medication to help reduce seizures for kids like Malachi with uncontrolled epilepsy. I have heard great things from other moms in my special need online communities, but there is some slight hesitancy as we are entering another “guinea pig” route. There are no long term studies on this medication and that always makes me a bit nervous. But if we can successfully reduce his seizures from his 6-8 a day to less than 3 then it is worth looking into.

Any time we introduce a new anti-convulsant (seizure med) Malachi takes at least a week or two to adjust to it. I am assuming that this one will not be any different, even though this week’s starter dose is .25 mls. That is just a few drops. Next week we will double that amount. I always dread these weeks as we tend to get a very lethargic Malachi- I hate seeing him so lifeless.

I am really excited to share with you all about Malachi’s fun Christmas gift this year! Malachi is such an amazing child, and seeing him smile despite his physical struggles is inspiring. He genuinely has such a sweet heart, and has been giving me the BIGGEST hugs this week when I pick him up and carry him. He squeezes me so tight that his little muscles shake, smiling from ear to ear as I tell him how strong he is. I wish each and every one of you could spend a day with him and see his precious heart.

I have been trying to think of something extra special to give him this year and I finally picked it out, but knew that it was something he wouldn’t be able to work on his own. I reached out on Facebook to see if anyone was able to help adapt it and one of the local high schools mechatronics/robotics classes volunteered to take on the project! I didn’t even know classes like these existed!

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This is a ride on toy called “Wild Thing” made by Power Wheels. It hold up to 100 pounds and unlike other Power Wheels, this one will accommodate his dislocated knees and feet issues. We can also get one of his special seats to attach making it fully supportive and comfortable for him. The only issue is that it is controlled by two joysticks at each hand, which Malachi clearly cannot do. We asked the robotics team if they could make it remotely controlled by us and they think they can accomplish this!

I am so excited to see what they are able to come up with!! Malachi is very into “running” fast these days, and we do the best we can racing him around in his wheelchair. But to know that he could independently go fast will put such a big smile on his face! The device is small enough that it could fit in the back of my car and could even go along with us on hospital appointments and his soccer games so he can play independently. I am so thankful that this group is willing to tackle such a big project for us.

I will drop off the special seat and the Wild Thing this week and I am taking Malachi by so they can get to know him and his needs a bit more. As you know, I am all about awareness so the opportunity to share Malachi’s life with a group of young people who have the potential to better the special needs world with technology later in his life is something I am looking forward to.

Alright, now into the mind of Leah…

Sometimes I despise my ability to remember things so well. Memories can be such beautiful things, but they also hold the potential to rip open freshly healed scars. These memories have been my biggest battle lately as we are now into the “last year at this time…” mode.

This time last year is when we were officially given a diagnosis and prognosis for Levi’s condition: bilateral vocal cord paralysis. It was like a sucker punch to my gut. While Malachi’s untimely birth brought about overwhelming feelings of sadness and hopelessness, Levi’s new diagnosis brought new ones into the mix…anger, bitterness, defeat.

I remember laying in bed and thinking, why us? Why again? And many of you have resonated these same thoughts with us through this journey.

I am a problem solver. Give me a problem and enough time, and my mind comes up with potential solutions. With medical conditions, this skill holds zero value. I am powerless, with no solutions to offer. I am simply a bystander.

But I am overwhelmingly thankful for the many people in the medical community that aren’t powerless, holding the ability and desire to continue creating quality living for kids like mine. Five years ago, my Levi would have a trach right now. But thanks to some problem solving minds and a team of doctors willing to take a chance on us, Levi is trach free. Again, please hear me say that I am not anti-trach. They are wonderful, life saving devices! Some of Malachi’s best friends have trachs and I am so thankful that that technology exists. But I am so thankful for options.

A year ago today, we were facing some huge decisions for our Levi. I think about the poem by Robert Frost that talks about the road not taken…

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
This poem has meant different things to me at different stages in my life. I have always been fascinated by it, even reciting it during my class president speech at my high school graduation. But as I read it today I get teary eyed seeing the significance in the lives of each of my boys.
We had options for each of them. For Malachi, the burden of choice was great…one of the roads ended the life of our son to preserve him from unnecessary suffering. The other road offered was the chance to give him life, even though the quality of that life may be questionable to some.
For Levi one road was the known one, the trach one, the 5 week route. The other road was unknown, unprecedented, unable to be timed.
I think back to each of the times I have stood and stared at two roads in my lifetime. Every bit of me wants to take a few steps down each on before making the commitment to a path, but life doesn’t offer that luxury. You can simply look at each path and make your decision blindly and without looking back. Looking back is such a dangerous game to play. Jake and I never allow ourselves to play the “what if” game. We simply commit to a path and continue to walk it in faith that God will guide our steps. If that means He creates a new path from the one we chose to the one we should have chosen, we trust that he will create that new secret trail in the woods to get us where we need to be.
Looking back to one year ago I think about the big decisions that lurked in front of us. We were told only one road existed, something I refused to believe. I still laugh about that conversation with Jake that night as I told him that I was going to call every single children’s hospital in the country until I found one that had another option for Levi. He nodded at me, knowing that I wasn’t in a god place for logical reasoning. I set my alarm for 8:00 the next morning and gathered the phone numbers to all the big research hospitals, using the tricks I have learned in dealing with medical providers for Malachi to get through the secretaries and to the people that could help my son. While I would love to take credit for those open doors, I have to point to God and His mysterious ways.
And as we stared at that one, single trail that was well worn, we started to notice a tiny little sign of a new trail that branched off of it. Taking that step was one of the hardest decisions I have made as a mother. And while many of Levi’s specialists still feel that we did not make the right decision for him, in my heart I feel peace.
While we did have to take that first step, it is our faith that carried our feet from there. Once again, we found ourselves having to release a situation that was beyond our control over to God, praying that He would give us the wisdom He gave to Solomon.
While my memories can be haunting at times and cause me so much pain, my memories can also brings me unspeakable joy as I can look back and undeniably see how far God has brought our family.
This week I have been flashing back to unpleasant memories more than normal. I have been really hung up on thinking about Levi’s NICU stay and conversations I was having with doctors at the time and I have been getting physically nauseous.
Like he often does, the Holy Spirit stepped in and began to speak through scripture: “Forgetting what is behind, and straining towards what is ahead, I press on…” (Philippians 3:13-14)
While I do think that memories are a good thing, I also see how they can easily become a snare. We sometimes cling to things that weaken us instead of shaking off those strongholds. Memories aren’t in themselves a bad thing, but they are definitely an area of our lives that the devil can and will use to speak his lies. That is when verses like these are vital to remind us to press on. And not only that but STRAIN towards what is ahead. I love the verb here because it paints the picture of the effort it sometimes takes to forget the past…that is not an easy thing to do.
Speaking of memories, let’s talk about a beautiful one. Take a look at this precious picture of Malachi. It was taken 4 years ago today, and we were so excited that day that he was holding up his head for brief periods of time and playing with his toys.

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Please keep all of us in your prayers this week as we continue to navigate our wonderfully crazy life. We continue to pray for and believe in a total healing for each of our sons.

God bless,

Leah

 

 

No Plan B

Another surgery week down in the books! While we have a few more surgeries pending for Levi in the next few months, this was the last scheduled one for Malachi.

Malachi and mommy loaded up late Monday night and made the drive back to Nashville. We stayed in the magically perfect hotel that we stayed at the week before and settled in for the night. There is such a huge difference when taking care of one Carroll kid versus both. And Malachi seemed to really enjoy the one on one mommy time.

Packing for surgery days is so complicated. There is the optimistic side of me that wants to pack for the one day we are told we will spend in the hospital. But then there is the pessimistic side, the “been there done that” side that knows that there is potential for things to go wrong and for us to get stranded at the hospital for an unknown number of days. I can’t even count the number of times we have gone to the hospital expecting to go home the same day and end up there for 4 night, 10 nights, several weeks. The control freak side of me hates to be so unprepared so I always pack for a worst case scenario and leave it in the car. And I always make sure to shower the morning of, knowing it may be the last time my hair gets washed for a very very long time! Oh traditions of the special needs momma.

We were scheduled to check in to the hospital Tuesday morning at 9:45, but at 6am they called to tell me that the case before Malachi’s had been canceled. They asked how quickly we could get there so we hastily packed up the room and headed toward the hospital. We were quickly registered and taken back to the pre-op area to speak with the surgeons and anesthesiologist.

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I have been trying to prepare Malachi for this surgery for several weeks now telling him that he was going to go to sleep and when he woke up he was going to be sad and his legs would hurt. I explained that he would be scared but that mommy would be right there to cuddle him and we would listen to music together. After his last rough recovery I decided to sweeten the deal this go around with a special surprise for him when he woke up. He has been pretty excited about finding out what the surprise would be.

Every time I had this conversation with Malachi about surgery he would smile at me sheepishly so I wasn’t quite sure he was completely understanding what was to come, and during pre-op he was one happy little boy.

The surgeon came by for our last pre-op talk and we discussed some of the big concerns I had. If you haven’t been with us from the beginning, Malachi went through 5 months of serial casting right after we brought him home from the NICU in 2013. Y’all, it was insane. Every Thursday we had to get up at 4am and soak Malachi’s legs in the tub until the casts got soft. Then we would peel them off and take him straight to the hospital for his next set to be put on. For 5 months. Mmmmhmmm. It was a nightmare. I found a slightly questionable way to decrease the tube time with some sheet metal cutters from Lowe’s (don’t worry, not as dangerous as it sounds) but it was a rough beginning for this new momma.

One of the main issues we used to have is that they would put on a set of casts and we would drive an hour home. Then Malachi would cry hysterically and we would find a spot in the cast that was rubbing a hole in his skin so we would have to put him in the car and drive him all the way back to the hospital for them to cut off the ones they had just put on and give him a new set. On Tuesday I asked the surgeon how common this was, explaining that driving him home 4 hours then having to bring him back for sores was going to emotionally and physically bankrupt me. He said that sometimes that happens, then said he was going to try to come up with a way around it.

Malachi has had surgeries (eyes) at Vanderbilt before but they were while he was inpatient while in the Chattanooga NICU so I wasn’t sure what to expect. It was all very similar to Cincinnati with me having to wait in a large waiting area during the procedure. In Chattanooga you wait in a room by yourself, which is so much more conducive to my wavering emotions on surgery days.

They took him back and I was sent out to the waiting area his empty wheelchair in hand…the constant reminder that my son was in surgery and there was nothing I could do to change places with him and take that pain away.  I HATE crying…it isn’t a pride thing…it is an energy thing. Expending that much energy and emotion completely depletes my energy. And I just can’t afford to cry and deplete that tank any more than it already is.

But I really really HATE crying in front of other people. As I wheeled that empty chair out to a giant room full of people I knew I was about to lose it so I hopped on the elevator and went to “my corner”. At every hospital I go to I try to find a space off to the side where no one else goes. It is where I sit and park in between appointments, where I go to cry, where I go to take deep breaths and chill with the kids. I bee-lined down the elevator and made it to my corner before the tears came. The feeling of being powerless can be so suffocating and overwhelming as a parent.

I sat in that corner, praying over my Malachi and allowing myself a few minutes of tears. Then I pushed that empty wheelchair back up to the surgery waiting area and waited anxiously for word on Malachi. After two hours I finally got called back to speak with the surgeon.

He explained that after he physically got to see the insides of Malachi’s feet they got a much better picture of what was going on. In addition to several of the joints in his feet being dislocated, he also said there there were several joints and bones that actually never formed. They are literally not there. He was planning to put pins in to help hold the bones, but since they weren’t physically there he was unable to do that.

Our goal for Malachi’s feet is to make them “brace-able and shoe-able”. We just want them straight enough that he can be in braces, so the braces can hep fight the messages his brain is telling his ligaments. He said that if his feet continue to turn outwards the only option we have left is to surgically place a screw between the main bones in the foot. But we are hoping that this surgery helps relieve some of the pain he has in his feet.

The surgeon explained that based on so many missing pieces in his feet, he is relatively confident that Malachi suffered some brain damage in utero. We aren’t quite sure if this happened in the few days after my placenta abrupted but before we knew (I had unknowingly had internal bleeding for several days prior to his birth). Or if this was early on in the pregnancy due to some genetic birth defects. Either way, his rough birth at 24 weeks with 15 minutes of CPR on his 1 pound 12 ounce body was not the cause for his feet issues.

They made 4 incisions total and loosened several ligaments and tightened several others. The surgeon is AMAZING and after thinking about our conversation about my casting fears, he worked with the casting team for a solution. They ended up making a three-sided cast for his feet that we can take off if it is causing him pain (so far so good). The cast is held on with three velcro bands. He even said that we can take it off for 3-4 hours a day if needed to give him a bath. WOW! We were expecting 6 weeks in casts which tend to get very stinky, so this was a wonderful surprise.

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He also adjusted our post op plans so we don’t have to go back and the four week mark and then again at the two week. By doing the casts this way we are able to eliminate one of those appointments and only go back at 6 weeks post op.

After speaking with the surgeon I had to go back out to the big waiting room for another hour before they called me back to recovery. I always make sure to voice how much I need to be back there for Malachi’s wake up. “I’ve watched my kids code, watched my kids get intubated, watched them nearly die…get me back the second he gets there please! You don’t know how to communicate or read Malachi.”

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He was sleeping soundly when I made it back to see him. After 30 minutes he started to wake up a bit and we listened to music as I promised him. When he was a little more awake he got his special surprise toy, a dinosaur that growls and bites.

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Shockingly Malachi didn’t shed a tear the whole day! This was the first time ever that Malachi has not woken up from surgery hysterically crying. They managed his pain SO WELL for him and seeing him so normal and happy was refreshing.

They had given him some numbing medicine that was going to keep him legs from feeling any pain for about 4 hours so my goal was to get him home before the medicine wore off. The drive took a bit longer with holiday traffic but he handled it all very well.

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Malachi has been handling recovery so well this week, successfully managing his pain with just a few days of tylenol. He has been crying a lot today but when I ask him what hurts he is telling me his tummy and not saying his feet so I don’t know that it is surgery related. We have almost felt like the surgery relieved a lot of pain for him by the way he is acting.

I did end up having to take him to the hospital the day after surgery for his g-tube site. It started to smell a bit and began growing something called granulation tissue. Basically, the hole is trying to heal itself and grows up tissue. It can be very painful, and in Malachi’s case started to bleed. The only way to combat it is to burn it off with silver nitrate which obviously has to be done by a professional. He has grown some more granulation tissue since then so we might have to make another trip this week.

Oh that tube. Deep breath. He is still crying and signing “no” when I try to send his milk in through it and I am torn between wanting to respect his wishes and needing to get the extra calories in him. We are still feeding him by mouth for every feed with the exception of post-op so we could leave the hospital, and a bit this morning when he was so upset he wouldn’t drink.

As you know, Thanksgiving Day was Thursday and since we weren’t sure how Malachi would be feeling we hesitated making any firm plans. He seemed chipper enough for us to venture out so we went to our favorite local restaurant for Thanksgiving lunch. I had to fight some memories throughout the day as I kept flashing back to last year eating a Thanksgiving meal at the Ronald McDonald House. Don’t get me wrong, we were so blessed to have a place to be that was close to the hospital but spending holidays away from home and attached with so much sadness is difficult.

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That afternoon we spent some time with family close by, and this weekend my brother drove up from Atlanta for a visit. Malachi and Levi have been able to see 8 cousins in the last four days and seeing them all interact has been so fun. We let Malachi sit at the kids table and he felt like big stuff.

One of Malachi’s 6 year old cousins told us in his very matter-of-fact voice that “Malachi goes up to heaven and spends time with God, then comes back down to earth.” I figured this was something that he might have heard someone else say but he came up with that all on his own.

Now that Levi is on antibiotics he is finally getting back into a sleep routine, praise the Lord! Y’all, I was at my breaking point!! He is still getting up a handful of times a night to vomit, but is going back to sleep quickly. Surely he is on the tail end of this cold that he just can’t shake. He has lost some significant weight from all of the vomiting these last few weeks but hopefully we can start packing it on again.

Levi loved seeing family this weekend and really enjoyed being the center of attention. I took a video for you:

And the boys are officially in a size range where I can buy them matching clothes. Dinosaur church shirts (Malachi obviously picked these out) for the win today!

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Jake goes back to work in the morning and life goes back into its routine for me and the boys. We have 7 scheduled appointments in just 3 days this week, and possibly more as we deal with Malachi’s tube issues.

I have had a lot of time to think this week while driving and I keep going to a quote from Corrie Ten Boom: “This is what the past is for! Every experience God gives us, every person He puts in our lives is the perfect preparation for the future that only He can see.”

Those words have swirled around in my mind all week as I have thought about the route God has taken my life. My life has never been an “easy” one. And in each season, I have been convinced that I have more on my plate than I can handle.

But when I look back at each of these seasons in life it is so glaringly obvious that God was preparing me for life with these precious, special boys.

One of the things I had to learn very early on in life was the value of a good work ethic. While I had all my basic needs met, I had to work hard at a young age to be able to afford anything above the basic necessities.  In high school I spent my summers working 40 hours a week at the local pool. During the school year I would get up before school started and open up the senior center pool at 5:30 in the morning, working a few hours before I had to be at school at 8. Then go back after school to log in some more hours.

Then it was time for college. Against the opinions of some very important people in my life, I made the decision to go to Lee University, a Christian college in Tennessee. I had settled on a different secular college, but as God does He tugged at my heart and even then I knew the importance of obeying His calling.

But with a Christian college came a hefty bill. I knew going into it that college was going to be my responsibility financially, but I have always firmly believed that if God called me to do something then He would be sure to provide a way to do it.

God provided me with an on-campus job a few days before classes began. I was determined to graduate in four years because I really couldn’t afford to do it any other way. And with good grades came good financial aid so I had to make being a student priority number one. I literally laugh when I look back on some of the stressful times during those four years.

At one point I was working 3 jobs which totaled nearly 60 hours a week; Information Services and Technology as an administrative assistant Monday through Friday, Campus safety dispatcher on Saturdays and Sundays, and the director of a special needs church program on Wednesdays and Sundays.

In addition to those three jobs I had a 21 hour class load- something I had to get special permission to be able to do. Looking back, that is insane. Most of my friends were taking 13 to 15 hours a semester.

I was also actively involved in two service clubs, which sucked any extra time in my calendar. But those memories mean so much to me. They were my outlet.

I really wanted to be a writer. A journalist, to be exact. But in my world I needed to do things that made financial sense. I knew that I could write without a college degree and if I was going to spend thousands of dollars on an education I needed to do something that required a degree. So I settled on being a special education teacher (hello God haha). The special education certification that I took was for K-12 and required all the basic classes plus the next level of classes in EVERY subject matter so you would be prepared to teach all of them.

Mathematics has always been a struggle for me. I remember taking the step up from basic math class and he explained that he only gave 4 tests a semester. Our grade was to be based on those 4 tests alone. I studied for hours for that first test and made a whopping 52. I got nauseous when I saw that grade at the top of the paper, knowing that my financial aid hinged on my GPA.

I had no other choice but to master that math class. I was already starting off with a failing grade and to bring it up to an A would require me to ace the remaining tests. I remember sitting that day at lunch and thinking that this would be impossible, and trying to think of a plan B.

But there was no Plan B.

I spent every extra hour I had conquering that stinking math class. I did EVERY single problem in the book in preparation for tests. I took notes, writing every word that came out of that man’s mouth. It was a miserable semester. But at the end of the semester I walked away with a hard earned A in the class.

And at the end of four years I walked across the stage at graduation with a 3.97 GPA that was earned with sheer determination. School was never easy for me. I am not exceptionally intelligent. But even then God was showing me that He doesn’t call the equipped but rather equips the called.

Interesting side note- after graduating with my degree in special education the federal government came out with an incentive program for special education teachers who worked in low income areas. If you worked for 5 consecutive years the federal government would forgive $17,500 of your student loans. While I am sure that this had something to do with a quality teacher shortage, I am also choosing to see that God had something to do with this! Malachi’s birth happened at the tail end of year five, allowing Jake and I to enter this new phase of life debt free. Thank you God for working in ways I cannot see.

When I look back to those college days, getting 5-6 hours of sleep a night in between all of the studying and jobs I see the hand of God. I remember thinking that *THIS* was the hardest my life would ever be. “If I could just get through these four years.”

And when I look back at those moments now I laugh at how insignificant they are compared to my trials today. But had I not had those difficult years early on, I am confident that this life would have broken me down much more.

God allowed me to become acquainted to suffering, self-denial for a greater goal, and the art of taking life one day at a time. He allowed the waters to rise right under my lips multiple times, and when those feelings come I am no longer panicky.

God prepared me for a life with no plan B. And while I don’t always feel prepared for this unique life, I am so thankful for those trials.

Malachi’s birth wasn’t my first faith tester. God knew exactly what was to come, and with His compassionate heart He allowed me to suffer more trials. And put up with me complaining through each of them.

Thank you God for those trials. And thank you for the things you are helping me overcome now. Who knows what each of these are preparing me for in the future.

There are no coincidences with God. When you start to look at the bad things in your life as part of a bigger plan you get a fresh set of eyes with which to see your world. As much as Satan tries to convince you otherwise, God is good all the time. His plans are FOR US and not against us.

We are simply called to live a life of trust. Sometimes I score a 52 on that test too haha.

My prayer this week is that God allows me to see beauty of “the past.” I pray that He continues to give me snapshots of me in my weakest moments and remind me “I was there, Leah. I saw you. I am El Roi, the God who sees and I have always held you in my hand.”

Suffering brings a strength that nothing else can bring. What is God preparing you for?

Much love,

Leah

 

 

 

 

Under Attack

Good golly Miss Molly. I am absolutely convinced that the devil has amped up his attacks against our family. I don’t know if you have ever sensed that in your lives, but the feeling hit me mid week and I just can’t shake it.

Before we flow into the negatives from the week, let’s focus on a positive! We celebrated Levi’s first birthday on Wednesday! I have some fun pictures to share with you.

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And then there is this video- it makes me smile so big. Levi gets very shy and hides under blankets. He wasn’t quite sure about us singing to him and got very uncomfortable, trying to hide under the blanket tucked behind him. Here is the video:

Okay, now on to our challenging week.

The boys continued to progress in the negative direction with their colds. By Monday I felt that both boys needed to get checked out to make sure their lungs were still clear from infection. Levi doesn’t have much of an airway so any and all drainage that blocked that tiny opening would trigger his gag reflex and he would vomit. I know it sounds like I am exaggerating, but Levi was literally throwing up over 25 times a day, with half of those being at night. This is a very scary situation for multiple reasons…

For you and I, our brain can tell our vocal cords to close and keep the vomit from going to our lungs. Levi’s vocal cords are paralyzed so he is unable to protect his airway. I had to stay within arms reach of him at all times and snatch him up and forward when he started to wretch to keep him from aspirating (taking it to his lungs). There were three nights this week that he was getting up consistently every 45 minutes to vomit due to postnasal drip. My nerves were absolutely shot from the pressure of keeping him from aspirating.

On Sunday night I wasn’t able to get him up in time and he swallowed a bit of vomit. His oxygen saturations dropped and his heart rate started to go up a little too high for my comfort thus prompting the trip to the pediatrician. Thankfully both boys lungs sounded clear enough to avoid even chest x-rays. Malachi is almost completely back to normal and Levi is symptom free but still struggling with phlegm. Today he has thrown up 12 times. With all that vomiting dehydration has been a serious concern all week.

We were making some positive steps in the right direction until last night. Levi went to bed and Jake and I both agreed we thought this would be his best night of sleep all week. Within the hour he turned into a maniac. Either he was bit by a rabid raccoon or something was causing some serious pain, so I got up with him around 12:30 to try to calm him down. And he NEVER went back to sleep…just screamed until he vomited over and over. Then he started running a fever. When sunrise rolled around I made the plan to take him in to an urgent care in the town close to us (30 minutes away) right when they opened and if it wasn’t something simple then I would make the trip to the ER (an hour away).

We were were turned down by 3 urgent care places before I finally found one that would simply check his ears and listen to his lungs. I didn’t feel like whatever was going on was too bad yet as the fevers were low grade and I was feeling confident it was an ear infection….taking him straight to the ER would just expose him to something bigger when he was already weak. But the fourth place agreed to take a look and a listen and sure enough Levi has a nasty ear infection in one ear and he start of one in the other. He is back on antibiotics…we just finished the last round last week so going back on is discouraging, especially leading into a surgery week.

As crazy as it sounds, we proceeded with our Nasvhille pre-op trip. I called beforehand and explained the situation and they said to bring Malachi anyway with the hope he would be good enough by this week to operate. Malachi, Levi, and I loaded up late Monday and made the drive to a hotel just outside of Nashville. I had researched lots of hotels and found one that would suit our needs but I have to tell you I was blown away by how perfect the room was for our situation. It was fully handicap accessible and had a living room area so I could safely get up with one boy while the other slept in the bedroom. There was a full kitchen with a dishwasher, sink, and a fridge, and a bathroom large enough for the stroller to fit in with ease.

I did my usual full room cleaning with clorox wipes before I put anything down. I don’t know that I express to you all how germ conscious we are. I routinely sanitize my debit card, cell phone daily, car keys, seat belt buttons….we are a little over the top but with weeks likes this I feel validated in being weird.

We arrived around 10:00 and I had both boys were asleep by 11:30. I had brought a stack of hand towels from home to catch Levi’s vomit and I cautiously dozed off to sleep. God was seriously looking out for me; for the first time all week, I got 5 straight hours of sleep. When Levi woke up and I saw the clock I almost started crying with thankfulness to God. The crew stayed up the rest of the morning and off to the hospital we went.

First stop was CT to get images of his hips and feet. Then we headed over to the orthopedic surgeon to discuss the images and the plan for surgery. He walked into the room and said “It is a good thing we got a CT scan today as we aren’t going to be able to do the surgery like we planned.” He started to show me the images and Malachi’s hip is severely out of socket. We knew it was out, but didn’t know how bad it was. The other hip is starting to do the same thing but isn’t bad yet.

In this picture you can see that his hip bone is rotated out and is nowhere near the socket like the other hip bone. Ouch.

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The surgeon proceeded to talk about how we needed to change the surgery from a tendon lengthening to a femoral osteotomy. This is where they cut off the head of the femur bone on both hips. This surgery is incredibly painful and Malachi would be in a full body cast from his nipples to his toes for 6 months, casted in a frog leg position. Kids who have this surgery done typically lose around 15 pounds and regress tremendously with all of their physical progress and abilities.

We have discussed this surgery before, but we all agreed to wait to do this until it was absolutely necessary. Kids with full dislocations like Malachi have a 50% chance of developing pain and that is when the surgery becomes a non-negotiable. We definitely don’t want him to be in pain on a daily basis, but also don’t want to put him through the pain of this surgery if he will be on the good end of the 50% statistic (which our family typically is not).

So when the surgeon said we needed to change routes for surgery and do the osteotomy I felt like I had been sucker punched. I caught myself saying “WOAH WOAH WOAH that is not what we talked about!”

We talked at length about the options and by the end of the conversation both the surgeon and myself agreed that Malachi couldn’t handle an operation of that magnitude right now. We will still be going in and surgically lengthening and tightening some ligaments in his feet but we will not be touching his hips this time. This changes our stay to an outpatient procedure, assuming all goes as planned.

Malachi will be casted below the knees for about two months. We will be going back and forth to Vanderbilt quite a bit for follow ups and to get him fitted for braces again. The casts should be officially removed on January 2.

Malachi and I will be making the trip solo as Levi just needs to stay tucked in and comfortable at home. We will be driving up Monday afternoon so we can be there first thing Tuesday morning. His surgery is scheduled to start right around lunchtime but pre-op nonsense will require us to be there pretty early.

After the appointment with the surgeon we headed to the appointment with the PATCH team (anesthesia). By this time Levi had thrown up mucus 8 times and my nerves were shot from discussing the potential of a massive operation. We went through all of the typical anesthesia questions and Malachi’s medical history. After a few minutes the man said “You seem to be handling all of this very well.” To which I simply replied “This is surgery number 35 for me…you aren’t going to say anything I haven’t heard many many times.”

Before we left he smirked and said “So based on that conversation I am going to guess that you have a medical background.” I replied: “Nope, just a mom trying to give her kids the best life they can have.”

We packed up and headed towards home which should have only taken 4 hours but with the pouring down rain and heavy traffic it took us almost 6 hours to get home. And to be honest it was truly a struggle for me. After the first hour my eyes were taking longer to come back open after each blink so I cranked up the A/C in the front half of the car and got some caffeine to fuel me! I am going to try to download some Podcasts for the upcoming trip to help keep me more focused.

The next day we headed to Levi’s eye appointment. To recap, our first appointment a few months ago did not go as I had hoped and the doctor said Levi would need surgery on his eyes. I cried and had an emotional breakdown haha, then scheduled an appointment with another eye doctor for a second opinion. The day before that appointment they called and said that the doctor had decided to go on maternity leave and we would need to reschedule with another one of their eye doctors. That appointment was this past Thursday.

This eye doctor confirmed what the other one had said. Levi’s eye muscles are having a hard time keeping up, and the culprit is his spots of brain damage. This is where it gets really discouraging…surgery is the only way to correct it and there is zero guarantee that it will hold. There is actually a high chance we will have to continue to do these surgeries over and over again as the real problem is his brain and not his eyes. The surgery sounds awful as they peel back the top layer of the eye to get to the muscles, then sew that layer back on. His eyes will be bloody looking for almost a month, and will take 3 months to return to normal. And again, all of this is not guaranteed to work.

The surgery needs to be done before the age of two to prevent depth perception issues. Without the surgery his eyesight will be significantly compromised. Ugh.

My mommy heart knows we have to do this stupid surgery to give Levi a chance at normal later on in life, but each time my kids have to suffer my heart breaks more and more. I am still pretending to be in denial and have asked to speak to another doctor to get a third opinion before we schedule surgery. We will be meeting with her in January.

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On Friday I loaded up the boys again and we made the drive to the children’s hospital for Levi’s first synagis shot. Synagis is a medication that will lessen the severity of RSV should be contract it this winter. He has to get one of these shots every month, but we are so grateful for them! It is difficult to get insurance to approve them so it is almost like a victory in itself that they didn’t fight us on this one. I wish I could be a fly on the wall of the insurance company as they discuss our family haha!

Levi obviously cried his eyes out after the shot; we are told the medication stings as it goes in much worse than any immunization.

Malachi has been in an ornery mood this week. I brought him in from the car and set him in his seat and he had a sly smile on his face. I have seen that smile before and knows it means he is up to no good so I told him “Malachi, DO NOT fling out of that seat!” He smiled again, and I said “Malachi, I am serious!” I went out to get Levi from the car and when I came back in I heard a thump. I ran over to find Malachi had dove head first out of his seat and was essentially doing a headstand with his but still partially in his seat. On the way down he had grabbed his tummy tube and pulled the cap off so he was upsidedown and COVERED in his stomach contents.

Y’all this is where I need some prayer. I am embarrassed to admit this, but I am absolutely disgusted by Malachi’s stomach tube. Now Levi has one too, but Malachi’s is just so different. Malachi’s surgery site is still leaky and gets stinky throughout the day. And his tube is always dangling out from under his shirt and since it is clear you can see his tummy juices in it. I have dealt with so many scars and wounds in the last five years, but this one is proving to be a challenge. I have dry heaved too many times to count this week!

But the biggest issue is that I find myself mourning over Malachi’s normal with this tube. I always want people to be comfortable talking to Malachi and being around him. But with this tube I watch people react as it is the first thing they see. I hate that we did something to Malachi that makes people cringe and look away. He will get this tube switched out in a few weeks, but I can’t stop being sad for him.

In addition to the visual yuckiness, Malachi cries every time we try to run anything through it. You can tell it is a very uncomfortable feeling for him so we are still feeding him by mouth like normal. Maybe time will help with that.

Alright let’s do this…let’s talk about Levi’s birthday…

There are times when I feel like a narcissist talking about myself so much. This is one of those entries. But this is an outlet for me to process my thoughts!

Leading up to Levi’s birth, Jake and I were so excited that God had blessed us with another baby boy. We talked about how much easier this round would be with a typical kid. I laughed about how odd it would feel to only have to go to the pediatrician for wellness checks, and not have specialists and therapies to worry about. It was going to be our chance for some normal.

I was high risk with Levi after the placental abruption I had with Malachi at just 24 weeks. I went to the doctor for monitoring, stress tests, and ultrasounds every Monday, Wednesday, and Friday. Everything on all of those tests and scans looked wonderful. He was measuring small, indicating my placenta was acting up again but he was healthy. Our goal was to make it to 36 weeks!

I dropped Malachi off at school that morning and headed to town to get some food for him. I met my mother for lunch and then it happened…I abrupted again. I drove myself over to the hospital, calling Jake and the doctor on the way, and tried to keep myself from having an emotional breakdown. It was a God thing that Malachi was not with me that day.

There were several concerns that we were focused on. The first was that I had taken blood thinners that morning. Operating while those are in your system is incredibly dangerous. The plan was for me to stop them a week prior to delivery but with this surprise that wasn’t possible. My clotting factors were coming back at dangerous levels.

The second big concern is that I had eaten within the hour. Anytime you do surgery on a full stomach the risk for vomiting and aspiration is high. We tried to delay as long as everyone was comfortable but as the minutes ticked by the doctors grew more and more nervous. We decided to go ahead and head to the Operating Room and put me under general anesthesia.

As we wheeled down the hall I fought hard against flashbacks from the night Malachi was born. This time around we weren’t running, but as those ceiling tiles flashed by over my head I got chills thinking back to that night. I remember when Malachi was born thinking that I needed to pray as we raced down the hall, and the words from Job were the ones that came to mind: “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.”

But this time around as I started those words they just didn’t feel right. I waited for the Holy Spirit to give me the words and I started to pray “The Lord bless you and keep you; the Lord make His face shine on you and be gracious to you; the Lord turn His face toward you and give you peace.” I wanted Levi to be enveloped in God’s peace.

This verse is the one we chose to bury under each of the boys rooms when we laid the foundation of our home. I have always felt that God has allowed His face to shine on Malachi, and I couldn’t think of a more perfect prayer for Levi.

Levi was born just before 6:00 that afternoon. And when 8:00 rolled around and even Jake had yet to lay eyes on him we all grew a little nervous.

We had prepped our hearts for a NICU stay prior to that day; we knew he would be small. He was 4 pounds 8 ounces at birth. The doctor came in to tell me that he needed a little help breathing, which didn’t alarm me as most preemies do. I was a little upset that he had to be put on the ventilator but not shocked. Jake went to meet him and brought me pictures. This was the first picture of Levi that I laid eyes on and I was overwhelmed with love.

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I was terrified of Malachi when he was born- his skin was underdeveloped and translucent. They had prepped me that Malachi might not live through the night. I was so overwhelmingly scared that day.

But this time I felt joy. I felt excitement. He was so sweet.

They explained they would need to take him to the level 4 NICU that Malachi had spent 4 long months in, and as much as it broke my heart I had to watch them wheel Levi away shortly after meeting him.

I got to spend 6 sweet minutes with him before he left; here is a video of the first time I laid hands on him:

Malachi was fascinated by the whole ordeal, but didn’t seem to understand about the baby as he couldn’t hear him. But even with his poor eyesight, he searched for this baby brother everyone was telling him about.

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I spent that night alone in a hospital room, listening to all the new moms around me gushing over their babies. My heart hurt so badly that night. I just wanted this time around to have a tinge of normal, but as the hours went on and my baby was 45 minutes away I felt like that opportunity was slipping away.

A week prior to having Levi I went and visited a friend that had just had a baby. We talked about breastfeeding and all the normal things new moms get to do. As we talked I felt this tenseness in my heart, knowing that I was possibly setting myself up for major disappointment. I tried not to long for normal, but so many times my heart and mind wandered towards that desire.

As the days and weeks went by we learned that this journey with Levi was meant to be anything but normal.

I think back to the unfolding of Levi’s diagnosis and the emotions that came with it. I went back to one particular blog that I wrote and thought I would share those words again with you:

There is an old phrase “Lightning never strikes the same place twice”. While I would like to find comfort in that old myth unfortunately life is showing us that the statement is not an accurate one.

As I looked at articles talking about lightning strikes, one of them said that if you want to see lightning strike the same place twice go look at a nearby tall tower during a storm. Lightning is drawn to tall things and will often strike the towers repeatedly. As I read that statement I couldn’t help but see such spiritual significance.

When lightning struck our family in 2013 with Malachi it strengthened our faith more than I ever thought possible. Malachi’s life has taught us the meaning of reliance on God, as our human hands can only do so much. It was AND IS a struggle, but through it all we have tried to stand tall. So it is surprising that lightning has found us again? Should I be mourning the fact that the devil sees the Carroll family as a threat?

Jake and I have been talking over the last few weeks about the term “righteousness”. So many sets of parents in the Bible have been given that adjective, and we talked about how we hoped that God would be able to use that word for us when we meet Him. Now hear me when I say that righteousness isn’t something that we work to “earn”, but it is a heart condition you develop when you live a life of dependence on God and follow His leading.

As I drove down the road this morning I started thinking about the verse “O death where is your sting?” Think about that phrase. Does your life reflect the truth in this verse? Are we living in such a way that death would not sting, because the impact we had on this earth was so great? As I looked up that verse I continued reading the chapter and got mesmerized by this one:

1 Corinthians 15:58 “Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.”

This is one of those weeks that I am feeling the effects of trying to be that tall tower. I feel the effects of those lightning strikes as the memory of them shakes my soul. I find myself cringing, bracing for the next moment of impact as the devil continues to pursue the loyalties of my family.

Just like he went after Christ in the wilderness, the devil pursues us in our moments of weakness. I am not at all surprised that this week has been such a challenging one seeing as it is leading up to a big surgery and also the anniversary of a scary night. All day long I have been reciting those words in my head “Let nothing move you”.

When the devil tempted Jesus in the desert Christ combated it with scripture. This week I am praying that the Holy Spirit continues to place the words of God on my mind that I need to get through each difficult moment that this week may bring.

Please pray for my strength in doing this. Admittedly, I am very worn down this week. We have been in a cycle of pain and sickness for a month now and it is hard on my mommy heart to see them suffer. This week will be no exception as I have to hand off Malachi again.

Please also pray for safety in traveling and that God props open my eyeballs as I make the drive there and back on very little sleep.

Pray against all infections post op for Malachi and that we are able to control his pain levels well. Also pray that this round of antibiotics puts Levi back on the mend quickly, and that he is able to stop vomiting so frequently.

Thank you for being so dedicated to checking in on my family. It is humbling that you take time to read my ramblings each week and pray for my family.

One final note…God and his special and sneaky ways…

I have been having a difficult time lately with feeling very alone on this journey. Jake has always been one that I feel like “gets it” but this week the weight of their care has been squarely on my shoulders. On Saturday morning we got a package on the front porch that was hand addressed to me. I quizzically looked at the large box, confused as I didn’t recognize the return address or name.

When I opened the box I found a carefully thought out and uplifting box of goodies from a church in Ohio. Inside were kind messages and notes of encouragement, gift certificates for dinners out, lotions, and so much more. It sounds worldly to find so much comfort in a box of material things but the gesture meant more to me than they will ever realize.

There are so many of you that reach out to us in such special ways. Thank you all for taking time to uplift a tired momma’s heart and remind me that I am not alone in this journey- that I, in fact, have a host of prayer warriors that have volunteered to travel this hard road with us.

God bless,

Leah

 

Serving the Lord

I feel like I left you on a cliff hanger last week as Malachi was struggling settling back to normal. Monday was another rough day for him so I broke down and scheduled another visit to the doctor. With his random fevers we were very suspicious of pneumonia. I made the appointment for Monday afternoon when Jake would be able to leave during his planning and watch Levi…the last thing we want to do is expose him to germs unnecessarily.

Malachi’s CBC (complete blood count) came back very average and normal but the doctor did think that she could hear some crackling in his left lung so we packed up and headed out to get a chest x-ray. The radiologist reported that one lung looked a little hazy but without the bad white blood cell count to verify an infection we didn’t proceed with any treatment. I felt better knowing that things weren’t in emergency mode, so I am glad we went.

Tuesday morning I packed up the crew bright and early and headed to the hospital for Malachi’s follow up appointment with the surgeon. I told Malachi on the way there that he was going to have to let the doctor mess with his tummy a bit and he kept signing “no”. So I did what every good mom does…I bribed him with a trip to the zoo. We had another appointment at 2:30 across town so we had some time to kill.

After he knew there would be an adventure after his tone quickly changed. After the hard few weeks he has been through I thought I needed to do something to lift his spirits and when November gives you a 70 degree day you might as well take advantage of it!

Malachi was so brave and stayed very still while the surgeon took out his stitches. All of the incisions have healed up well and while I hate the tube with a passion, I am glad we are over the healing hurdle of that first week. He is still very sensitive and cries a whole lot more than normal but it gets better each day.

The appointment went relatively quickly. The hardest part has been waiting room conversations lately as it is testing my ability to offer grace (not proud of that struggle). There are a lot of people in our world that don’t know the polite way to ask about the boys. I get nice comments like  “Your boys are beautiful!” and then I get these:

“So do they both have the same thing?”

“Does he bite (referring to Malachi)?” Hmmmm.

Anyway…

Off to the zoo we went, and as we checked in with the front desk they handed me a schedule of the day’s events. It was 11:20 and there happened to be a snake meet and greet at 11:30. Malachi has been OBSESSED with snakes (and dinosaurs) lately. He has several toy ones that he likes to hold and play with so when I saw that schedule I knew we had to go!

Thankfully we were the only ones at the meet and greet so Malachi got 15 uninterrupted minutes with a 12 foot python. I showed him where the snake was and when his hand touched his back that sweet Malachi smile lit up his face with such joy. I moved my hand away and told Malachi that he could still pet him if he wanted and he independently reached out and pet the snake for several minutes.

It was so wonderful to see that smile again.

We left the snake exhibit and as we walked by the giant lizard it ran over to the glass and began banging his head on the window at Malachi, who started giggling uncontrollably at the “dinosaur lizard”.

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Malachi is still legally blind, but in some low lights he can catch movement and shadows with his eyes. The day was very overcast and it made my heart happy to see him searching for the animals with his eyes. And thank you dinosaur lizard for getting close enough for Malachi to enjoy your company. Even though you were a little freaky.

We went from there to the monkeys, who also ran over to the glass to see the boys. I don’t quite know what the draw is but if you ever want to get up close with the animals just join us for a day at the zoo- they always come running!

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Levi was not amused in the slightest. And desperately needed a nap. 9FA33E8E-BFF8-47B4-8738-A1232163EB13

And it wouldn’t be a zoo trip without a stop by Malachi’s favorite big cats, the jaguars. That is where I took this video, which has had me laughing all week long. This was the perfect summary for our day at the zoo:

The trip worked wonders for our sweet Malachi and he was close to being back to himself by the time we left. I think he just needed some adventure to focus on.

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We tackled physical therapy and feeding therapy for both boys, and even horse therapy this week. With Malachi’s hip and foot surgery coming up next week I wanted him to have one final session with his horse Chica! When I asked him if he wanted to ride his horse he signed “YES” very adamantly and we watched his cues closely for what he could handle.

The week started to pick up momentum towards being a good one. Then Friday rolled around and we had the first sneeze…the warning sign for something brewing. I cringed and waited and sure enough Levi came down with a nasty cold. The rest of us were fine but as you know, it is hard to isolate one kid while being a caretaker to another. By Saturday morning Levi was much much worse and Malachi started with his.

Our weekend has been a re-run of last weekend’s “Should I stay or should I go” game as we make pros/cons list for a dreaded trip to the emergency room. Malachi is handling this sickness decently but Levi is down for the count. He has been running some high fevers, but is still SATing well with his oxygen. I cranked him up to 1 liter and he is still in a safe place but sounds pretty rough. They both have a cough that would send you running. Levi is also throwing up about 12 times a day.

And I am thankful for tile floors and a washing machine.

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I am confident that if I take Levi in like this we will be admitted and possibly put back on the ventilator for his work of breathing. But his baseline work of breathing is what we go by and honestly it isn’t that much worse. I promise you all, if we even get slightly freaked out I will make the trip. Just trying to hold off until tomorrow when I could possibly get him in for a CBC and an x-ray like big brother.

The doctors in Cincinnati have told us numerous times that when Levi gets a bad respiratory infection to expect an ICU stay and for him to be put on the vent. We are just praying his body continues to fight this nonsense!

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So let’s talk about the next two weeks. And let’s pretend that everyone is normal and healthy as we go into it.

Tuesday night I have booked a hotel room just outside of Nashville in preparation for our big appointment day Wednesday at Vanderbilt. It will be just the boys and I, and I just felt that with my lack of sleep, a 4:30am drive to Vandy (three hours one way) followed by a long day of appointments then the return drive home was not a good idea. Yes, a hotel stay with these two is a brutal thing but it seems to be the only safe option.

We are trying to save Jake’s vacation days for emergencies as we tend to have a whole lot of those in our life.

If one or both of the boys are still sick we will be re-configuring the plan but we truthfully really need this to work. Please pray with me that their bodies are completely healed by Wednesday morning for Malachi’s pre-op appointments. No pneumonia brewing…just immune systems doing their jobs well!

Malachi will meet with the orthopedic surgeon, the anesthesiologist, and get a CT scan done. The appointments begin at 8 and last until around 3. I will go back alone with Malachi the following Tuesday (November 20) for his surgery.

In addition to this full, busy day on Wednesday, Levi sees the eye doctor on Thursday and gets his first synagis shot on Friday. Synagis is a medication that helps lessen the effects of RSV should he contract it. It is extremely expensive and reserved for only immune supressed kids or children with lung issues. We are very thankful that he qualifies for the injections and will get them once a month through RSV season. Insurance is completely covering the bill, which is a miracle in itself!

Each of these appointments are about an hour away so we will be logging some road miles this week. I have went ahead and canceled all of the therapies we have scheduled for Monday and Tuesday so we can just focus on getting better.

We are all very exhausted. We were coming off a rough week anyway with surgery, and then got hit with two sick medically fragile kids. I won’t be able to spend too much time with the devotional thought this evening, but definitely feel like God has laid some things on my heart to share with you.

Way back in July I purchased tickets to take some of the girls in my youth group and their mothers to see Sadie Robertson in Chattanooga. If you don’t know who she is, she is the daughter of one of the men from Duck Dynasty (think long ZZ Top beards). I was running on zero sleep and truthfully dreading going but needed to drive the bus and get my crew of 22 there. Jake geared up for war on the home front and I reluctantly left.

Sadie is a wonderful, God anointed speaker and I highly encourage you to look her up and hear some of the things she has to say. The message was geared perfectly for my teenage girls and being in the presence of God felt refreshing. As I looked over the rows of my youth group, my fellow sisters in Christ, I realized something….

I don’t pray for others nearly as often as I should. Most of my prayers center around my world, my kids, my needs. I don’t often take time to pray for others. But the Bible tells us the Holy Spirit prays on our behalf and I am confident that prayers over the things that burden me are making it to the ears of God without me even speaking them. So why do I not take the snippets of time I do get to focus on formulating a prayer to lift up someone else?

I spent most of the evening praying over these teenage girls that God has placed in my life. As I looked at each one of them I thought to myself about their futures and the trials that each of them might have.

The devil shows no discrimination. Your wealth, your status, your list of good deeds…nothing exempts you from attacks from the devil. Nothing takes you off of his radar. In fact, when you are a child of God it puts a bulls eye on your back as he is jealous of the love you have for God.

But in the same way that the devil shows no discrimination, neither does God’s love. There is nothing you can do that makes you undeserving or unworthy. Nothing takes you off His radar. He seeks after the flawed, the imperfect, the burdened, the ones with a past. He seeks after you with a love and a compassion that nothing else in this world can offer.

Lately I have been so focused on the compassion of Christ. Oh how I wish I had eyes to see the world as He did. I wish my eyes could be drawn to the situations that need a burst of compassion, and give me the ability to meet those needs.

God had a word for me this week too. I had to look it up after He laid it on my heart…

Colossians 3:23-24  Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.

I thought about this verse and tried to pinpoint which areas/roles of my life are done as if I am serving Christ himself. There are many times when I care for the boys that I am filled with an overwhelming love, knowing that I am serving them as Christ would. But there are just as many times I complain and trudge through my day.

As I sat at the event on Saturday I started to process what a day would be like if I treated everyone as if they were as valuable and as worthy as Christ himself. What a impact that type of living would have on our world. And what an imprint a life like that would leave on hearts.

I have personally challenged myself this week as I go through an emotionally challenging one to serve others as though I am serving Christ…at the pharmacy, at the drive through window, with my youth group, with my husband, with the doctors I will encounter. It will not be an easy challenge.

But if we want to be a light to our world we have to be willing to tackle big challenges.

Please lift up the Carroll crew in your prayers this week. In addition to some wild schedules, it is also Levi’s birthday week (on Wednesday). I am purposefully not spending much time on that one in this blog because I don’t think I can handle the emotions that reminiscing will bring tonight. But next week…oh goodness.

Thank you for checking in on my sweet boys and thank you for praying for a complete and total healing on their bodies. That Levi’s vocal cords would awaken and Malachi’s brain would be restored!

Much love,

Leah

 

We Chose This

Oh my what an exhausting week we have had. Be prepared for lots of information and a ridiculous amount of pictures. When we get locked in the house post op I find lots of opportunities for photos!

Here is a snapshot of the number of syringes we are going through in ONE day between both of the boys medications right now:

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Surgery Day: I checked Malachi in for his surgery at lunchtime on Monday. I told Jake that my goal was to make it the whole hospitalization without shedding tears, and I came soooo close.

The time came for the dreaded hand off- the moment where I hand my sweet baby to a stranger, knowing they are about to take him to a room of pain. God blessed us with a special treat- one of Malachi’s NICU nurses is now working in the operating room and was able to take him back and be with him for most of the surgery. She messaged me later and told me he was a ham back there making all the nurses laugh.

I went back alone to my holding cell. If you have been with us for awhile, you will understand my joy about having a room with a door! And I waited. The phone rang several times with updates, but the second time was the disappointing news that they attempted the laparoscopic route and it did not work. That meant they had to start over and do the surgery through an open incision. The surgeon came in after the procedure and seemed as disappointed as I was that he wasn’t able to do the less invasive route. I said “Well, I am not surprised as we seem to be a worst case scenario type family.” And the surgeon replied “That’s exactly what I told my resident…if something can go wrong, it will with this kid.” Even the surgeons acknowledge our knack for complications.

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After a relatively easy recovery room experience thanks to pain meds we settled into a room. They took off the dressings to take a look at the surgery sites and my stomach dropped. Not only were there two small incisions from the laparoscopic attempt, but there was another 4 inch incision right in the middle on his stomach. And then there was the g-tube….Levi has what they call a mickey button. It is a small button that sits on his stomach that is about the size of a penny. You hook extension tubes to it to put his food in and when it is not in use you can unhook the extensions, close the lid, and no one would even know it was there! Very low profile and relatively flush on his skin so you can’t see it through his clothing.

They were unable to put that style of tube in Malachi and instead put in a HUGE mechanism. The button is 3 inches in diameter with a tube sticking out of the middle of it that stays on there 100% of the time that goes down to his mid thigh. My heart started to break for Malachi as we always try so hard to preserve his normal. We genuinely hated doing this surgery but knew it needed to happen. But this device was never what we had in mind. This gives people something to say “Ewww” over as they see a clear tube hanging out oh his stomach with stomach juices inside of it.

Yep- I cried over that stupid tube.

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I would show you pictures, but it is not a pretty surgery site right now and it had to be sewn onto his stomach. Thankfully we are told we can switch this tube out for a mickey one in 6 weeks.

I can handle a whole lot more than I ever realized but something that has yet to get easier for me to handle is wounds. Wound care is my weakness, and I can’t tell you how many times I have dry heaved in the last week trying to keep everything clean and healthy looking. Stomach juices are a close second, which doesn’t bode well for a g-tube (x2) momma.

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We had really hoped that this recovery would be an easy and simple one but unfortunately it is not going well at all. Malachi is in a lot of pain. We were discharged on Tuesday afternoon and kept him heavily medicated for several days. On Thursday we noticed his breathing changed a bit and wondered if the pain medications were slowing his rate. To check our theory we weaned him to basic Tylenol and Motrin which did help his breathing rate but then Malachi started running moderate fevers. The pattern has been the same since Thursday: Malachi starts running a fever, we medicate him and it breaks after a few hours, 24 hours later it returns.

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We have been communicating with the surgeon as well as the pediatrician and unfortunately since it is the weekend there isn’t much we can do other than take him to the emergency room. I asked the pediatrician if they would call in orders for a chest x-ray to check for pneumonia and a CBC to check for infection but they said they were not comfortable doing that without laying eyes on him, which they can’t do until normal operating hours tomorrow.

This is where the parent struggle comes in. His immune system is so compromised. Yes, we could take him to the ER but I can almost guarantee that Malachi will contract something worse in there, and likely bring it home to Levi. We are told that when Levi gets any airway sickness to expect an ICU stay on the ventilator. Taking him to the ER would endanger both boys so we are trying our hardest to get through the weekend without going that route.

Obviously Malachi’s safety and health comes first so we have been checking his oxygen saturations on Levi’s pulse oximeter, breathing rates, temperatures, and charting it all. We still think he is in a safe range, but definitely want to get him in tomorrow to check things out. Post op fevers are pretty common, but we feel like he has something respiratory going on- it could be an upper respiratory infection he picked up in the hospital but it could also be post op pneumonia (he gets intubated during surgeries) which needs to be treated. Please pray with us that we can avoid a late night ER trip tonight and that we can get answers and treatment in the morning. And pray for Malachi’s comfort- he has just been so miserable this week.

I was able to get a few smiles out of him this weekend during our fever free times.

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During our hospital stay we were able to see a lot of friends- I actually started laughing this week as I reminisced over all the people that stopped by while we were there…former nurses, college friends that became nurses, a local friend with her own warrior in the ICU…

One of our surprise visitors was Malachi’s neurologist. He saw that we were inpatient and came to give us the good news that they had officially been cleared to start prescribing Epidiolex, the first FDA approved cannabis-based drug. It has been doing wonders for children with intractable (uncontrolled) epilepsy like Malachi, so this was amazing news. Malachi will be one of the first patients to try the drug at our hospital! I have been dealing with the paperwork and phone calls and it looks like we will be able to start it next week. We have tried CBD oil in the past and it has definitely made a difference in his tone, seizures, and sleep habits.

We were able to deliver our “Blessing Box” to the NICU on Monday before surgery! In the end we collected enough donations to donate 144 cards, each handwritten and filled with a $20 Target gift card and a $5 Starbucks gift card. There are instructions on the top of the box to give a card to a long term NICU mom that really needs some encouragement.

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I know I have mentioned this before, but God told me that each one needed to be handwritten. I was able to write nearly 50 of them but it took me 1 hour to write 8 cards….at that rate I knew I would not be able to finish before New Years. Thankfully several friends willingly took stacks of the cards and wrote the message for me. It was a good reminder for me in allowing others to help carry our burdens and help where they are able.

I prayed over each card the night before I delivered them to the NICU- it was a good distraction from the day looming ahead of us. I prayed that God’s purposes would be fulfilled with each card, knowing that this project was His doing and not mine. There is something so exciting about obeying God, even when you don’t quite see the whole picture.

There are reasons for everything God asks us to do. I don’t know why these needed to be handwritten, and I may not ever know but remember that the details matter to God. Sometimes His plan is bigger than the sacrifice of time He requests from us. And what we see as menial tasks are just catalysts for something big He is about to do.

And just like the Bible story of the 5 loaves and 2 fish, never underestimate God’s ability to multiply. I am the boy in that story, with a tiny gift that was offered. Jesus takes our tiny gifts and creates miracles in the lives of others. What tiny gift are you able to bring to God to become his instruments?

When things are done through a heart like His, a heart of true compassion, He will supply your every need.

On Wednesday I had a friend request on my Facebook account and saw that the woman in the profile picture was holding a preemie. I clicked on her profile and she had posted this:

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I was amazed that somehow she had found me, as I had not given enough details for her to be able to track me down. To keep them personal, I simply put that I was mom of Malachi (a 24 weeker; 112 day NICU stay) and Levi (34 weeker; 131 day NICU stay). But a mutual friend had seen her post and knew about the project we were doing so she tagged me in it. It blessed my heart to see that God was already using these cards to lift up spirits and point these discouraged mothers towards Christ.

It is so much fun to watch God work.

Let’s talk about Levi. I don’t know if his antibiotic has fueled his wild side but he has been a bundle of energy.

This is his new favorite game in his car seat. He rocks himself so hard that it gets stuck propped backwards. But don’t stress, he can get himself un-propped. Y’all, he is WILD.

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He also had his first tooth finally break through this week! Oddly enough he is getting his top front teeth first. Pretty much everything he gets a hold of goes into his mouth these days.

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Levi sure does love his daddy, but this week we hit a HUGE milestone and he started calling for MAMA! I left for the hospital with Malachi and sure enough Levi started calling out for me while I was gone. This is a very big deal for two big reasons: 1) I have never had a child call for me  2) This is the boy who we were told might not have a voice  I was able to get it on film to share with you all…

This week has been a very messy week as both boys have discovered their feeding tubes have lids that pop open. Looooots of laundry and lots of baths. The day we came home from the hospital I went into the kitchen to put dishes in the dishwasher and when I turned around Malachi had a mischievous grin, which was a surprise since he wasn’t feeling well. I walked over the find he had a death grip on that stupid extension tube and had popped the lid off- he was now sitting in the 8 ounces of food we had just put into his belly. YUCKKKKK.

And lovely little Levi has done that very same thing tonight 3 different times in the last two hours. Messy, messy boys.

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On Friday I was giving Levi a much needed bath and had him stripped down on the bath mat. He looked very seriously at me and whispered “Mama” slow and creepy like and as I quizzically looked back at him I felt the warm sensation of his pee stream hitting my leg. Lovely. He was highly amused and I couldn’t help but laugh.

Alright, so let me be real and raw for a few minutes. It is weeks like these that I realize how fragile I am. In my head I am tough as nails, but my heart knows that is just something I tell myself to keep it from breaking. The inside of me is a very weak mother who carries scars from seeing her boys struggle over and over again.

On Thursday I had to consciously avoid looking at the chair I sat in when the pulmonologist told me Levi’s vocal cords were paralyzed and he would need a trach.

That parking space where I sat in the car and sobbed uncontrollably one night when we almost lost Malachi.

I avoided eye contact with the sleep study tech as we passed each other in the hallway, but seeing her brought a wave of nauseousness as I remembered all the discomfort Levi was in that night and how we were about to have to do another one in December.

I had to walk on the left side of the hallway, remembering the hundreds of times Jake and I walked to the right in that hallway during Malachi’s nearly 4 month NICU stay.

I tensed as they looked up what room we would be sent to, knowing that the ICU is on the 4th floor- we know that floor so well. But also knowing we have spent weeks on the 3rd floor as well, and praying that we wouldn’t get one of those rooms where the memories would be able to creep in.

When I went into the bathroom while Malachi was in surgery I caught a glimpse of myself in the mirror and flashed back to a tear stained Leah face that I had seen in that same mirror dozens of times before.

There are triggers everywhere. They are literally unavoidable in that place. And while I used to be able to mentally push past them I am losing that ability. This was surgery #34. Stress is starting to impact me physically with full body stress rashes, hives, vomiting, and the inability to eat. I feel like I have been at war.

Even being home from the hospital this week I have had a difficult time, getting nauseous each time Malachi’s fever comes back, knowing that I am possibly going to have to take him back to that place. These feelings have nothing to do with my discomfort, but rather the pain I feel for them.

In my weakness, mentally I have been allowing thoughts in that don’t belong. This week I was flipping through pictures on my phone and I paused and thought “What if this is the last picture I will ever take of Malachi?” In my heart I know these thoughts are not healthy, but I haven’t been able to succeed at pushing them out of my mind.

If you haven’t already picked up on this, I am a control freak. And not being able to control the outcome of anything medical for my children is very devastating for me.

When I start to feel like I am drowning in these thoughts the warning lights quickly activate and I know I need to stop them quickly. I always try to refocus by thinking about our family verse, Philippians 4:8:

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”

I felt a breakdown coming on while I was in the room waiting to hear from the surgeon about Malachi. As I tried to refocus my thoughts, something popped into my head…

We chose this life. Why should I mourn over something that I chose?

We could have avoided all of this stress, this pain, this heartbreak. When Malachi was just 3 days old we were given the chance to discontinue his lifesaving care. But we both so firmly felt that we were to choose life for our son, and that his time on earth was to be decided by God and not us. We asked them to save our son that day. They presented us with the likely outcomes for Malachi with the extent of brain damage he had suffered, and most of those predictions have rung true.

We could have tried again for that easy life we dreamed of…that problem free baby. We could have made the decision to give Malachi his heavenly body and spared him this challenging life. But we felt so strongly in our hearts that God had work for him to do here on earth first…regardless of how “imperfect” he might be. God has a gift at working through the things that we see as broken.

Every day of Malachi’s life, even the hardest and darkest days, has been a blessing.

If we could go back to that room and have that same conversation again knowing all that we know about Malachi, we would choose this life again and again. Our Malachi is a world shaker. He is a life changer. He is a glimpse of God.

“Blessed are the pure in heart for they shall see God.”

Through Malachi we have been given the privilege of sharing the very reflection of God’s love with the world. The joy of the Lord flows through him. Malachi is loved by God, and is His beautiful creation.

We were given a very special gift this week from someone whom we have never met. She had read about my sadness at never being able to get a really good picture of Malachi as he usually turns his ear to the camera instead of his eyes (he is legally blind but can hear very well). She sketched this beautiful picture that brought tears to my eyes and gave me chills.

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We chose this life, and we would choose it again and again and again. Can you imagine a world in which Malachi had not lived?

We choose you again and again, sweet son. You have already impacted the kingdom of God more in your 5 years of living than most get the opportunity to do in a lifetime. You are a vessel for the Lord and what a blessing God has given to us in you.

Please join us in prayer this week for healing and comfort for Malachi’s body. Pray that we are able to find answers and treatments in the least germy environments we can. Pray for wisdom, as that is always a need in our parenting choices with these boys.

Thank you for being a part of our journey,

Leah

 

 

 

Honoring Others

Tomorrow (Monday) is g-tube surgery day for our sweet Malachi. And I am just so sick to my stomach over it for several reasons:

  1. Malachi is SO much more cognitively aware than he has ever been. In fact, his last surgery was in 2016 so he likely doesn’t remember the routine of things. I have been trying to explain to him about having to be carried away from momma by the nurses and how when he wakes up he is going to be sad and cry really hard. I told him his tummy will hurt for a little bit but will start to feel better after a few days. And momma will be there to play music and snuggle him when he wakes up. I have explained how we will have to stay a few nights in the hospital and won’t be able to leave the room and go on adventures. I am trying to prepare him as best as I can but this is going to be very hard for him this time around on a cognitive level.
  2. This will be my first night away from Levi, with the exception of the two nights after he was born and taken to a different hospital. I have full confidence in Jake but just love that little boy so much.
  3. I am struggling with some major PTSD right now. This is surgery #34 for this momma, and I have been alone for nearly 18 of those. Tomorrow I will be flying solo as it really isn’t in Levi’s best interest to bring him to a hospital unnecessarily where he can contract something new. I can definitely handle things alone, but surgery days are emotionally hard. (Don’t read that as a plea for company…I am confident I can’t handle company during these waiting times. I have tried before and it somehow makes things worse.)

I have probably hugged Malachi 100 times in the last 24 hours. I love that boy so much. Every ounce of me wishes I could take this pain from him.

The g-tube part doesn’t phase us as Levi already has one. We know how they work and what they look like so they don’t intimidate us, but we still wish he didn’t have to have one.

While this surgery isn’t “medically necessary” right now we know that it needs to happen to help him recover from his hip and foot surgery next month. We always knew the time would come for the tube to go in but wanted to prolong it as long as possible. I would say 5 years is a pretty great accomplishment…go Malachi!

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Both boys are doing wonderful with feeding therapy and today Malachi knocked our socks off at lunch by eating several bites of my chicken casserole. He kept signing for more and enjoyed every bite without choking or gagging.

Let’s talk about this crazy week we just had…

As I told you last week, our soccer team had the unique and wonderful opportunity to play at the state tournament. Jake left with the girls on Tuesday and the boys and I followed on Wednesday, making it there just in time for warm ups. Some wonderful friends from church offered to drive over (2.5 hours) and sit with the boys on the sidelines for the duration of the game so I could enjoy being just “coach”. What a blessing that was for me.

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After 78 minutes of a competitive match, our girl’s knocked in the ball (with just over a minute on the clock) winning the game! We were overwhelmed and speechless. The last time a team from our tiny little town went to state and won a match in ANY team sport was in 1983. We have 19 girl’s on our roster…every girl that tried out made the team as we don’t have a huge group to pull from. Most of the other schools represented in the state tournament were private schools or came from the suburbs of large cities (like Nashville and Chattanooga).

This photo speak volumes:

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And here is a video of one of the two goals from that game if you are a soccer enthusiast. Both of our goals were headers, which is rare and fun:

 

The girls were scheduled to play the following day (Thursday) so we headed back to the hotel. The next morning Levi woke up screaming like a wild man and when he couldn’t be consoled we wondered if something was wrong. We put him in the stroller and went down to the lobby and he immediately stopped crying; we assumed waking up in a strange place may have frightened him. But as the afternoon went on his screaming would randomly continue and he would get so worked up he would vomit.

I was running on very minimal sleep and since we didn’t have an oxygen concentrator I was limited to moving within 5 feet of the big tank in the room. Not an ideal situation for soothing him. When it came time to head to the game with the girls I made the very hard decision to take the boys back home instead.

I was so incredibly disappointed. I know it sounds silly, but I cried most of the way home over missing this game. We love those girls so much and I wanted to be there and experience this moment with them. Our team ended up finishing 3rd in the state!

We made it home late Thursday night and I raced the boys and the necessary gear in, watching intently for our bear friend to make sure he wasn’t sneaking back onto the porch. As soon as we got into the house Levi started laughing hysterically- he was so happy to be home. But he was up and down most of the night and started running a fever of 101.

The next day I decided to take Levi to the doctor. I battled this decision fiercely…I was pretty confident that he had an ear infection only, and exposing him AND Malachi (who was getting ready to have surgery) to a doctors office seemed like a bad idea. But I had no other options so to the doc we went. I called ahead and worked out the plan to wait in the car with the boys until the doctor was ready to see Levi. They were going to clean out a back room that hadn’t been used by any kids that day and put us in it, attempting to eliminate any unnecessary germs.

Great plan…until the receptionist that was going to call us left for the day and didn’t pass the message along. I have a knack for being pesky and didn’t want to annoy them so I tried very patiently to wait. I have been trying to work lately on giving grace, as that is a struggle sometimes. Levi napped and Malachi and I sat in the front seat and played. Levi woke up and started screaming again so I decided to check in (it had been almost an hour). When I realized I had been forgotten I started to get very emotional…those floodgates are pretty weak these days and the lack of sleep didn’t help. They got us in immediately and the doctor verified that it was an ear infection. After starting on some antibiotics, Levi is now back to his happy and chipper self.

And just as predicted, he has learned how to rock the car seat so hard it gets stuck upside down (not completely, just propped with his feet dangling over his head).

Back to soccer…

Jake and I have been completely humbled that the girls have achieved such a big goal. At the beginning of the season we asked them what their vision was and they said they wanted to go to state. We told them we would do everything in our power to help prepare them and make that happen and they did it!

There were several moments during the game that I would look over to Jake and find that he had disappeared off to the side out of sight. He would be down on his knees with his hands raised in the air, clearly praying. I know Jake well enough to know that he wasn’t pleading to God for a victory, but later I asked him what that was all about. He explained that lately God has been telling him “Honor me in this moment”, and each time God speaks it, Jake immediately obeys.

You may not know this about Jake but he is incredibly competitive. God knows our hearts, and I think God speaking those words to Jake during game times is no accident. He wants Jake to remember that even in the little things, the everyday mundane, we are to honor Him. Or maybe those moments of Jake on his knees honoring God were for someone else there…a reporter standing off to the side, a player on the field, a mom on the sidelines. God’s ways are mysterious, but when He speaks we should always desire to obey, even when those moments could feel out of place and embarrassing.

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I am thankful for Jake’s obedience. And I am thankful for his walk with the Lord. He offered an optional Bible study at the hotel for the girls and almost all of them came down for it. We always talk to each other about the special calling God has placed on our family. We may not be harvesters for the kingdom of God but we recognize the role God has called us to as seed planters.

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A neat side story- the coach of the team we played on Wednesday left this message on last week’s blog:

Hi Jake and Leah. Congratulations on the win last night! Your PCHS girls played some inspired soccer and were fun to watch. Cool story: I coach the Grace Christian girls and yesterday afternoon as we were preparing for the game one of our moms sent a link to your blog to my wife. I was in the midst of my typical pre-game angst and asking God what he wanted me to share with the team as we prepared to play. She sent me the link with the caption “Some perspective…” I was so moved reading about your journey; I shared the blog with our girls as our pre-game devotional and talked about how there are no coincidences with God. We often have no idea what He’s doing and He connects us with people and stories for reasons only He knows. All that to say, although our girls are devastated by the result last night, you have some new prayer warriors praying for you and Jake and Malachi and Levi in Franklin, TN. As a team, we’ll continue to pray for you, your family and your work there in Polk County. And good luck to you and your girls today! Go ahead and win this thing!!

This kind note humbled us even more as we watched God do His thing! Last week after I typed the blog I turned to Jake and said “Well, that wasn’t a very good entry but I am just too exhausted to think.” But God. He can take what we see as broken and messy and turn it into a beautiful thing to someone else’s eyes. Like that coach said, we often have no idea what He is doing and there are no coincidences.

I have personally been having a rough few days. It may be pre-surgery nerves, it could be the continual sleep deprivation, it could be the devastation of not getting to stay for the final soccer game…there are several culprits, but regardless the feelings are there.

I have been focused on a verse this weekend from Romans 12 that says “Be devoted to one another in love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer.” I keep reading it over and over, processing each command.

Honor one another above yourselves. This part has been challenging me and consuming my thoughts. It is similar to the golden rule, “Do unto others as you would have them do unto you”, but is an even greater challenge to honor them ABOVE yourself. Yikes! That is a tough thing to do.

In my crazy life this command towards my children is not a hard thing to follow, which I think most moms would agree is true for their children as well. I HAVE to put their needs above my own. They can’t do anything on their own so it falls to me to do. But what about my marriage with Jake? That takes some conscious effort to apply the command there.

I am going to tell you a story, but I don’t want this to be taken the wrong way. Jake and I are happily married and to give the illusion otherwise would be inaccurate. We praise God daily for the strong marriage He has formed between Jake and I; the statistics show that the divorce rate for special needs parents is 80%. We recognize we are an anomaly, and work hard to stay on the good side of that statistic.

That being said, here goes…

I was a frazzled, and as we say in the south, “hot mess” when Friday rolled around. I had driven over 300 miles alone with one epileptic special needs child and one screaming ear infection ridden baby. I was having to pull over at rest stops to make sure everyone was staying hydrated, medicated, and poopy free. I was running on 3 hours of sleep, spending 7 hours that night rocking each of my children in my arms. I missed at least two meals a day, some days not eating until 9pm.

Jake came home Friday afternoon and I was so thrilled to have reinforcements. He helped me get the kids ready for bed; Malachi has to be held upright as he falls asleep or he has major seizures, so Jake took on that role and when he was asleep carried him to bed. Levi was wide awake and has been staying up until around 1am. After Jake laid Malachi down he disappeared. I assumed he was reading his devotional or unpacking his suitcase but after several minutes of silence I went looking for him. He had gone to bed. And boy was I jealous. And then boy was I a little mad. And then boy was I furious. He had just spent 3 nights alone in a comfy and quiet hotel room, getting 10+ hours of uninterrupted sleep, and I was the one staying awake with the wild child.

As women often do, the more I processed the more frustrated I became. I secretly wanted to dump a pitcher of cold water on his sleeping face, but refrained. I started thinking, why is it that I put everyone else’s needs above mine but no one will do the same for me? Why am I not a priority to others? I thought about the verse “Honor one another above yourselves” and got mad at Jake for not doing that for me.

A few hours later I went to bed, still extremely bitter at Jake. I looked up that verse again to read it, but this time I kept reading…

“Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.”

Ahhhhh man. Conviction. Ugh. Surely if Jake had gone to bed like that he must have been exhausted too. And playing the “I’m more tired than you” game never ends well, often leaving both of us resenting one another.

Honoring others above ourselves is not meant to be an easy thing. It goes against every bit of our nature. But when we do obey that command it is not necessarily about serving these people, but rather it is about SERVING THE LORD through our love towards others. It isn’t about Jake, it isn’t about Malachi, and it isn’t about Levi. It is about honoring God by serving others and fulfilling their needs…it’s not about doing these things with an expectation for return on the investment. It is about doing it with the heart and the mind of Christ, with zero expectations in return.

When we honor others, we are honoring God. My heart needs to reflect that motive instead of my selfish ones. 

And maybe, just maybe, I need to be plotting less about the pitcher of cold water.

And before you start sending Jake hate mail, know that he did get up with Malachi later that night for his 4am wake up which allowed me to get a straight 7 hour stretch of sleep. Amazing sleep.

And then there is the beauty in the challenge of the final part of that verse : “Be joyful in hope, patient in affliction, faithful in prayer.” All three of these things are challenging on their own. Throw all three in the same sentence separated by commas and boom. But I am claiming these words over our family tomorrow and will be striving to obey each command.

I pray that I can be joyful in hope as I wait anxiously in the pre-op room tomorrow. Malachi is very in tune with my emotions and I want him to feel joy from me instead of nerves.

I pray that I can be patient in affliction. The waiting game while your child is in surgery is incredibly miserable. This particular surgeon has wonderful nurses who oblige my request for frequent updates during the surgery. Part of me is sad that I know these surgeons and their staff so well, but anyway… while he is back in the operating room I sit close to a phone and wait for it to ring which it does 5-6 times during the procedure. Those hours of waiting drain my emotions. In fact, when I finish this entry the next thing on my to do list is to chop all my fingernails off so I can’t pick at them tomorrow during this time.

Faithful in prayer. God did not give us a spirit of fear. So when I am overcome by that fear the best route to clear it is prayer. But sometimes the devil gives me amnesia and I forget that fact. I allow myself to get overwhelmed by that fear instead of releasing my worry to God. Tomorrow I will be trying to be extra vigilant on focusing on faith over fear.

Please join us in prayer that tomorrow stays complication free and Malachi is able to have this procedure done laparoscopically (vs open incision). And pray that God overwhelms me with his presence and takes away that isolation I have been feeling lately.

Sincerely,

Leah

 

 

 

Tend to the Fire

Jake and I wear many hats. But we have orchestrated each one in such a way that we rarely have to wear them all at once. We compartmentalize each “role” we have and life just chugs along, us living day by day and doing our best to give 100% to each one.

For example, here was today’s crazy schedule:

Saturday night we went to bed around 12:30am

4:00a-6:00a Up with Malachi

7:00a-8:00a Up with Levi

8:30a-9:30a Made Jake get up with Malachi haha

10:00a-11:00a Went to Sunday School

11:00a-12:30p Taught Children’s Church

4:00p-5:30p Soccer Meeting

5:30p-6:00p Staff Meeting at church

6:00p-7:30p Took youth group to the pizza buffet

8:00p-9:30p Soccer parent meeting

10:00p-current       Blogging it up!

In addition to all of that was feeding children, changing diapers, bath time for the boys.

So the good news is that our soccer team has won their district, their region, and their sub-state game and they are now headed to Murfeesboro, TN (about 3 hours from us) to fight for the state championship. If you don’t know anything about soccer just know this is a HUGE deal for the girls and for Jake and I as their coaches! We are so proud that their hard work has paid off.

But with this honor comes a whole lot of hard work for our little family. All week long we have been scheduling referees, painting fields, meeting with coaches, hosting games, coordinating 19 players and their parents. This is all in addition to me working part time, tackling medical appointments, being youth minister and doing lesson plans for the children’s minister job. It has been a whirlwind of busyness for us!

As we head to the state tournament we add to the list: hotel, food, chaperones, transportation accommodations for 19 high school girls. Then the actual trip for me and the boys (Jake will already be there a day early with the team). But we never shy away from a challenge so Murfeesboro here we come!

Is all this busyness in life necessary? Absolutely not. But Jake and I firmly feel that we are called to make a difference in as many lives as we can while we are here on earth. We recognize that so many teens in our county don’t know Jesus, and if we can show them a little bit of Jesus as their coach, teacher, friend, mentor, youth pastor then it is worth all of the stressful days. We always want our lives to be about others rather than ourselves.

A week from tomorrow Malachi will have surgery to place his g-tube. We really need help with prayers over this surgery as it could be a smooth and easy one or it could be difficult. Our goal is to place it laparoscopically but with the amount of scar tissue in his belly we may have to do a large open incision to be able to place it. The plan now is for Jake to stay home with Levi, as we are very worried about exposing him to hospital germs and sickness. Malachi and I will have to stay at least one night, based on the type of incision we end up doing.

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Levi’s eye appointment this week was canceled. The doctor we were scheduled to see went on maternity leave the day before so the appointment has been pushed off until November. I was trying really hard to keep our November relatively open since we have so many pre-op and post-op appointments for Malachi’s next surgery but unfortunately it is filling up fast. We need some major prayers that we all stay healthy enough to handle the chaos that is coming.

Both of the boys have been hilarious this week. Levi has started talking to Malachi, and hearing his little noises warms my heart. I tried to snag a video this week, but this was the best I could do:

He has been turning lots of heads with his rocking action. We are having to keep him strapped in as he has almost flipped the seat several times!

And Malachi still LOVES Levi so much. He has been filled with joy this week, more so than his normal. He really enjoys going to the soccer games with us and even cheers on the team. There is a girl on the team named Maggie and he shouted her name as clear as day TWICE. Here is a video of him laughing at Levi:

Malachi rode his horse like a champ this week, pretending to be a superhero the whole time. His whole face changes when he is pretending and he gets very serious while he puffs out his chest dramatically. He is a ham.

Levi will turn 1 in three weeks…that seems so unbelievable to me. But too many emotions, so I will save that for another post.

And just to keep us on our toes, another bear came for a visit this week! I heard him around 3:45am and peeked out the window to see the largest bear I have EVER seen right outside our window. He picked up our wheeled trash bin (with 3 full bags of trash) and carried it like it was nothing 50 yards away and into the woods. After I saw his size and the ease of which he carried the trash like a coke can, taking the shotgun out on the porch (firing it to scare him only- not hit him) seemed like a really bad idea. He came back about 45 minutes later to check out the rest of the porch then went on his way.

To be honest, I am struggling with a little bit of conviction this week. Watching all of these intense soccer games has brought out the competitive side in me and I have caught myself yelling pretty loudly at some of the games. Now granted, none of what I yell is necessarily mean or hurtful but I wonder what those moments of impulse say about me as a Christian. I always want to reflect God, and when I find myself getting mad about silly things that is definitely not an accurate reflection of Him.

We had a rainy day this week and anytime it rains my day gets more challenging. Nothing can be done quickly with the boys, and loading them in and out of the car alone can take about ten minutes, leaving me soaked to the bone.

We happened to have feeding therapy on this rainy day and by the time we made it in I was on the verge of tears, just overwhelmed and feeling defeated. It took me longer than normal to get the boys out of the car so we were a few minutes late- something I HATE. As I wheeled through the doors of the therapy office I started smiling, thinking to myself about what an insane life we have. It was one of those “laugh so you don’t cry” moments.

As I raced down the hall, leaving a trail of water from our rainy clothes a woman stepped out of her office and flagged me down. She said “I don’t know you, but I see you come in here each week with your hands so full. But you always have a smile on your face. It is so encouraging to me every time I see that.”

I don’t take compliments well and usually get awkward (even when the words truly touch me), and this time was no exception. As I verbally fumbled my words trying to think of a reply, the therapist walked up and said to this woman “It’s because she is a Jesus lover.” The woman smiled at this new piece of info and nodded like she knew it all along.

I keep thinking about that conversation. I keep thinking about the impact we are supposed to have on our world. I desperately want for God to be seen in me. I desperately want to be known as a Jesus lover, not by my words but by my actions. I want to be a lighthouse for His light.

My job as a daughter of Christ is to keep that light within me shining brightly. Trust me- it fades when you aren’t tending to that fire. And truthfully, I think that is part of the problem I have had this week with my sports enthusiasm. I haven’t been into the Word as much as I should be.

But thankfully each day has new mercies and I can change that routine starting now.

Please continue to pray for the Carroll family as we tackle this messy life day by day by day…

Love,

Leah

 

 

 

The Crazy Sock Mom

Y’all, we got a good picture! In the six minutes of peace before the headbutting incident from last week she was able to capture this beauty! Boom.

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It was early in the morning one day this week when the question hit me…

“What kind of mom would I have been?”

I am constantly battling the temptation to think about what kind of child Malachi would have been had things gone differently. I continually catch myself dwelling on those thoughts.

But sometimes I mourn over the things I am missing as a mother. And as that question swirled around in my mind throughout the week it started to shape the lens I looked through in my daily tasks.

I walked through the store to find socks for Levi I caught myself reaching for the cute socks- only to redirect my hand towards the ones that I knew would help hold his pulse oximeter sensor on better when he sleeps. The boring socks. I would have been a mom that picked the fun and crazy socks. Sometimes I wish I could reach for the crazy socks.

I walked to find clothes for the boys and quickly bypassed the ones in Malachi’s size with a popped collar. Shirts like that can suffocate him if I am not watching him closely. And I sadly breezed on by the cute clothes for Levi knowing that they wouldn’t protect his g-tube site from his grabby hands and they would not accommodate his tubing without me hacking the outfit up with scissors.

I would have been the mom that was known for hugs and kindness- known for drying tears instead of creating them. Known for kissing boo-boos and not known for allowing surgeons to create those painful scars. I would have co-slept, not fearing that my 5 year old might accidentally smother himself in his pillow during a seizure. Or that my baby might roll enough that his oxygen tubing might wrap around his neck and suffocate.

I would have been the mom that bought bath toys, knowing that bath time could be fun! Never did I dream I would be wheeling one child into a shower and fighting his body’s instincts to try to get all of him clean. Or prepping the baby tub for the other child, spending 15 minutes preparing all the extensions, oxygen tubings, dressings, and tapes then wrestling him to keep his hands away from his now exposed tummy tube.  Buying the bath toys right now gives me something else to mourn over as they would sit on the shelf untouched.

I would have been a flexible mom that wasn’t stuck on routines. Instead these routines (med schedules, doctors visits, therapies, keep my children alive and improving. I have to walk the same routine path through my house with my 11 month old to keep his 50 feet of oxygen tubing from getting wrapped around furniture as we move from room to room. Even my steps have to be pre-determined and thought out.

I would have been a playground mom. A playgroup mom. Not a mom who sees germs everywhere she looks. Germs were never on my radar. They were simply germs…they made you stronger as they built your immune system.

I would have been a cookie baking, come lick the spoon kind of mom. Never did I imagine that my children wouldn’t be allowed to eat food by mouth safely.

Would I have been a mom who was anti-vaccination? I no longer feel I have the choice to be “that mom”. The decision to be all natural with my children has been taken from me as those medications and interventions that others avoid are the exact ones that keep my children alive. Seizure medications are non-negotiable. The one year we didn’t give Malachi the flu shot he almost died, ended up in the ICU for two weeks. I sincerely feel that vaccinating my children is helping keep them alive.

I would have been a mom that took “mom days”. I would have gone out with friends to get manicures and pedicures. Taken time for me. Instead I am the mom that is mortified by my fingernails as any rare time my hands are empty I am anxiously picking at them. I am ashamed by my anxiety but genuinely don’t know how to relax.

I would have been the mom planning family vacations, camping trips, ski trips, and getaways. I always wanted my children to have experiences over “stuff”. The challenge of finding handicap accessible places and experiences paired with the challenge of packing and transporting medical equipment squashes the dream for being that mom. Instead I find myself planning overnight hospital stays and road-tripping to different hospitals in different states for quality medical care.

There is SO MUCH beauty in my life. But there are also these moments of severe sadness.

As I processed that question this week I listened closely to the Holy Spirit, trying to decide if I was feeding a bitterness root and allowing it to grow. We are called to guard our heart and mind, and I wanted to be sure that I wasn’t opening that battlefield to another attack.

But as the days went by and the thoughts kept coming the conviction stayed away. I ALWAYS feel conviction over my thoughts about what Malachi “should” be like. But that feeling never came.

You see, God doesn’t have an expectation for us to be happy all of the time. He doesn’t expect us to never experience sadness or mourning. In fact, we are told that in this world we will have trouble. There is a time to weep and a time to laugh. A time to mourn and a time to dance. (Ecclesiastes 3:4)

But there is a thin line between controlling our thoughts and allowing our thoughts to control us. And change us. For now I am in a safe range with my mourning…because I continue to firmly believe that God can and will turn my mourning into dancing. I continue to trust, continue to hope, and continue to believe that God’s plan for my boys is more beautiful that the one I  pictured.

But some days are very hard for this weary momma.

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Changing gears to happier things…look at this precious illustration made of our family! It made me tear up this week as it captured Malachi in such a special way. We found a woman on Facebook that makes them for just $20 (plus $5 for each kid) and figured it was worth a shot since photos don’t always capture the best sides of my children. If you are interested in her making one for your family you can email her at walker.courtneyp@gmail.com. They would make an awesome Christmas gift too!

Jake was on fall break this week and having the extra set of hands around has spoiled me! He stayed home with the boys while I went to work in the mornings, and we were able to fit in some fun in the afternoons. Here are some photos from our aquarium trip. The aquarium has extremely low light so Malachi can usually see the fish and the jellyfish pretty well; he always smiles so big when he catches a glimpse of their movement. He also LOVES touching the stingrays.

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I took the boys to their GI doctor this week for a check up. Little Levi is getting chunky weighing in at nearly 19 pounds! Malachi is still hanging at the 25 pound mark and the doctor is hoping to put some more weight on him after his g-tube is placed.

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Malachi also played in his final fall soccer game and even got a medal at his awards ceremony. He is incredibly proud of that medal and wanted to take it to church this morning for all of his friends to see. If you are in our circles and see him this week be sure to ask him about it.

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After the game on Saturday they had a special surprise and brought in some superheros to meet the kids! Malachi was so excited that Batman came to visit!

I have been trying extra hard lately to narrate life to him. The harsh lights of the gym completely stunt the little vision he does have. This was his face when I told him that Batman came to visit him:

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The boys tagged along to soccer games with the high school team, bowling and arcades with the youth group, and all kinds of other adventures. The soccer team that we coach just won the district championship so this week they will be battling for the regional championship title. The weather officially changed this week so I am hoping I can still make it out there to the games, but obviously the boys comfort and health trumps my coaching desires. We are so proud of our team though!

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It really was a wonderful week for the four of us. This week we will be heading back to the eye doctor for Levi to discuss surgery.

We are inching closer and closer to surgery days so we need to continue to cover the boys in prayer! We need them to be completely strong and healthy heading into this next branch of our crazy life. Please join us in prayer over their bodies.

Faith over fear.

Love,

Leah

 

 

 

Brotherly Love

Another busy week in the Carroll house. Three high school soccer games, a youth group hike, Malachi’s soccer game, oxygen delivery, physical therapy, feeding therapy, and horse therapy. And my new office job has been going great!

Not a whole lot of Levi updates for this post. We are still patching in preparation for our eye appointment next week. And Levi is all about cups these days so we have been letting him play with a sippy cup at mealtimes. One day soon we will try adding something into the cup! Liquids are still an unknown for him so we have to make sure that he can protect his airway from thin liquids.

As you already know, Malachi is in a CDC (Comprehensive Developmental Classroom) setting at his school. During his IEP meeting a few weeks ago we decided to start working him into the “inclusion setting” for a little while each day. That means that he leaves the CDC with the nurse and goes into a typical kindergarten class for a bit.

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This week was his first week with his new classmates and the regular teacher (who happens to be a friend of ours) asked me to come in and speak to the kids about Malachi’s differences. They were all so attentive as I explained that Malachi’s brain doesn’t talk to his legs and tell them to move. I purposefully didn’t spend a lot of time telling them about the things that Malachi CAN’T do but instead focused on the things he CAN do. I really want them to see his ability instead of his disability.

Malachi was so excited to talk to his classmates and readily showed them his communication signs when I asked him to. They had the chance to ask questions and none of them seemed to be nervous around him. He was thrilled to have the audience and loved hearing me talk about him. He is a compliment hog.

I am all about awareness when it comes to children with disabilities. It is so important that we, as Malachi’s parents, allow people to get to know him so that maybe it will impact the way they treat strangers like Malachi out in public.

Malachi has been so strong lately. He has been sitting up straight and tall with sudden bursts of strength and we always try to make a huge deal out of it to encourage him. I was able to catch his silliness on video for you:

Foolishly I keep continuing to believe that one day I will actually get a good family photo of all four of us. A friend of ours was doing short 20 minute photo sessions and I thought we would give it a try. She also has a daughter with special needs so I knew she would be up for the challenge. I meticulously planned it all out, ironing tiny baby clothes and even going as far as blow drying and hair spraying Malachi’s hair, much to his delight. Levi decided he didn’t want to nap that day and as we inched closer to the appointment time I had a suspicion this wouldn’t go well.

We got there a few minutes early and each tackled dressing a boy. It was important to me that Levi not have his oxygen on for the pictures so at the last second we peeled it off his face. About 6 minutes in we were seated on hay bales and Malachi realized he was awfully close to Levi….close enough to head butt him. He flung his little body at his brother and BOOM they hit heads. Levi started to cry, much to Malachi’s delight. I was able to calm Levi down slightly so back to the hay bales we went, but Malachi had figured out a way to make Levi cry and wanted to do it again. Little stinker.

The head butting attempts continued, Malachi determined to make Levi cry again. Oh, the brotherly love. Within a few more minutes exhausted Levi was hysterically crying causing me to run for the oxygen. At that point I was saturated in my own stress sweat, feeling anything but beautiful.

We haven’t gotten the pictures back yet but be assured there will be a few with Malachi’s mischievous smile. And a few with Levi’s tears. And probably a few with a tired eyed and stress sweating Leah.

I have such a hard time managing disappointment. All the preparation for that 20 minute photo shoot and it definitely didn’t go like I had hoped. I was genuinely mad and sad as we drove away. It was one of those moments where I caught myself saying “Why can’t I get decent family photos like everyone else? Why can’t we be normal?”

Since we had driven 30 minutes for the photos and were all dressed up we decided to go out to eat. What an adventure that proved to be! Malachi was still fueled by the fact that he made brother cry and with a sudden and random burst of strength, started throwing his crayons. Literally throwing them- he has never done that before. We were actually impressed more than angry. At the same time, Levi was on a rampage trying to grab my full cup and tearing the menu. I had my arm raised in mid air with a buttered piece of bread and Levi knocked that sucker right out of my hands and onto the floor.

Jake and I couldn’t help but laugh, as were the people around us watching our “quiet family dinner”. We finally waved the white flag and headed home for the night. As I walked out to the car I was still a little bitter about how things had played out when I noticed something squishy on the bottom of my boots. Yep- you guessed it- I had stepped on the buttered bread, squishing it disgustingly into the many crevices in my shoe tread. I threw up my hands and said “SERIOUSLY!” and looked for something to scrape that gooey goodness off with. Then my eye caught a random crayon stuck in the bottom of Malachi’s wheelchair from his throwing rampage.

I was able to use the crayon to scrape off the buttered bread. Makin’ lemonade out of lemons I guess haha.

These boys. They are WILD! I have been trying to teach them about being gentle with each other, as they both could use the lesson. Each day I have been putting them both on my lap so they can be within arms reach of one another. So far we have had some pretty epic fails. I took some photos and a video this week to share with you.

Here is the video:

I have had several people ask about our bear situation. I am pleased to update that while we have seen about a dozen bears on our road in the last few months, they are no longer hanging out on the front porch! And the route that they come and go in our backyard is overgrown which is a good sign the path hasn’t been used lately. They have been spending some time at the neighbors house so we are still very cautious when we come and go after dark.

I had the privilege of speaking in a women’s Bible study this week. God had placed scripture on my heart to talk about but I ended up not even talking about the part that I really wanted to focus on. So I guess I will share that with you all.

The prophet Elijah is on the run from the queen who is out to kill him. After the angel incident I shared with you last week, he finds a cave to hide in and starts lamenting to God about how he wished he would just die. That’s where I will start:

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11 So He (God) said, “Go forth and stand on the mountain before the Lord.” And behold, the Lord was passing by! And a great and strong wind was rending the mountains and breaking in pieces the rocks before the Lordbut the Lord was not in the wind. And after the wind an earthquake, but the Lord was not in the earthquake. 12 After the earthquake a fire, but the Lord was not in the fire; and after the fire a sound of a gentle blowing. 13 When Elijah heard it, he wrapped his face in his mantle and went out and stood in the entrance of the cave. And behold, a voice came to him and said, “What are you doing here, Elijah?”

I have been thinking about these verses for several weeks now, trying to relate them to life. While I have yet to officially grasp what God wants me to take from this, I have come up with a few conclusions…

God speaks in whispers. So many times we want to confidently hear from the Lord. But we don’t take time to listen for the whispers. In fact, anytime I have truly heard from God it has been in moments of silence. The night Malachi was born I was laying on my bed in pain and I heard “Get up and go” as my feet hit the floor. I knew that moment was God.

Time and time again I have heard from God in moments of quiet.

Do I seek Him enough in my quiet moments? I find myself “praying without ceasing” throughout my day as I speak my thoughts, frustrations, worries to God. But how often to I stop and listen for God to speak back?

Another thing that keeps striking me about this particular scripture is our habit to look for God when things are chaotic…to look for Him in the earthquakes, the fires, the mountain breaking wind. But we often forget to look for Him in the gentle wind moments of our lives. We forget about how constant God is, and how He tells us He will never leave us or forsake us.

We mistakenly see Him as a presence that comes and goes based on how our lives are going. We forget that God lives within us and is present in all circumstances.

This week I will be focusing on finding God in the quietness. I will take those rare moments of gentle breezes in my day to acknowledege Him. And listen to what He has to say.

I realize that some of you may have never had that type of encounter with God so I feel led to explain what I mean when I say “listen to God.” Hearing the actual voice of God is not what I hear…but God places words, commands, and promptings on my heart and mind. And when I hear them I KNOW without a shadow of a doubt that those thoughts are not my own.

My prayer this week is that you encounter God.

Please pray for our family as we are coming up on some pretty intense days. Malachi’s first surgery (g-tube) is on October 29th and his hip/feet surgery is on November 20th. We will find out more about Levi’s eye surgery when we see the doctor next week. Pray for guidance and wisdom for Jake and I as we make big decisions on behalf of our boys. And pray that we can all remain healthy through this winter season. Jake, Malachi, and I all got our flu shots this week and we need to pray a hedge of protection specifically over Levi.

God bless,

Leah