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