God’s Handiwork

It was a beautifully slow week in our household so we spent most of it chipping away at our never ending to do list. As far as appointments go we only had therapies for the kids- horse therapy, aquatics therapy, and physical therapy. All local and manageable.

There are some hidden challenges to being a special needs parent that most people may not think about, and one of them is the mental anguish of the calendar. It is filled with therapies, specialist appointments, and surgeries. These appointments loom over me- I always have to keep them in the back of my mind as they dictate everything else we want to plan. It feels so good to mark them off the list…but that is where the mental anguish comes in. Each time we finish an appointment we immediately have to schedule the next one so they are never really “crossed off the list”. They never really end. Right now we are scheduled out through December.

So since we have a slow blog day let me take some time to tell you about Malachi. He is changing. I don’t know what wonderful God is doing in his little brain but we are connecting in a whole new way. When people see Malachi there are quick assumptions made like he does not know what is going on (after all, he is legally blind), he can’t understand what you are saying, he is just a shell of a child. But Malachi is so much more than a shell- he is a 5 year old boy that is trapped by a body that doesn’t function like it should.

Malachi has opinions. Lots and lots of them. He has likes and dislikes and will let you know them very clearly if you know what to watch for. He loves to communicate and gets SO excited when you understand his communication signs and listen to him. He craves being talked to like a typical boy and understands so much more than you would imagine. He wants to be in control of things, which is tough with a body like his. So when he does get that rare chance he knows he is BIG stuff.

Malachi wants to know where we are going next and who he will get to see. He wants details (just like his momma). He has an impeccable memory and routines make his exceptionally happy. His imagination lately has been so wild- particularly enjoying pretending to be dinosaurs, puppy dogs, and angry like Llama Llama Red Pajama.

Malachi is stubborn, just like his momma. He will do things simply because I told him not to. And he will smile sheepishly as he does it. But he is also incredibly sensitive and has the saddest crying face you will ever see. He gets in trouble a lot these days and has to be corrected often, which truly hurts his feelings. He also gets bored, and will do bad things to get your attention- like throwing himself out of his chair.

Malachi loves Levi. I know I say that a lot but the love there is so special and deep. This week I have been trying hard to give him the same big brother responsibilities a typical kid would get. I let Malachi help get Levi ready for the day, piling wipes, a diaper, and an outfit on his lap. As I change Levi I ask Malachi to hand me the ______ and he will slide them off of his lap and to me proudly. He loves to be a big helper and will puff his chest out proudly when I tell him what a good job he did helping. Here is a video:

God is healing Malachi. It isn’t in a grandiose and obvious way, but I see it. His mind is so sharp. He has been so sweet to me lately with lots of big hugs where he squeezes me as tight as he can and lots of impromptu kisses.

His favorite toys right now are his cars and blocks. He strategically will knock them off his tray to make them go BOOM on the floor. He thinks it is hilariously destructive and sometimes it wakes up little brother, which is an added bonus. And he is still the most joyful child I know, laughing at the simplest things and noises.

Oh my goodness how I love him! But I have to be honest…he breaks my heart each and every day. I watch him as he listens to his favorite cartoon shows as the characters tell the audience to do something, like pat your hands on your lap. And I see his little brain trying to communicate to his hands to do it. And I see his little hands move, but they don’t do what he is willing them to do. He just can’t. And my heart breaks to see him work so hard and not be able to do it.

Of course, that’s where I come in- running over to him and helping him pat his hands on his lap. Or do the “Hot Dog” dance from Mickey Mouse Clubhouse for the hundredth time. But seeing the giant smile on his face as we do the things his five year old brain really wants to do makes my heart swell in a good way.

Parenting a child with severe disabilities is so much harder than I ever imagined. I fight back tears on an hourly basis- pretending to be strong for him and reassuring him that he is perfect just the way he is. I can’t take time to mourn for his “different”. I have to be the strong one that assures him that he is able, he is valuable, and he is so special to God.

And then there is Levi. Happy, go-lucky, feet loving Levi. He brings such joy into our lives, filling so many small gaps in parenthood that we have missed with Malachi. We are like first time parents, googling things way more than I care to admit and always asking “is this normal?” I could sit and watch him play for hours. His facial expressions are hilarious and he already has a strong sense of humor.

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He has enjoyed trying some new baby foods this week as long as he is in control of the spoon which ends up being a messy game.

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I know we say this all the time and it sounds like we are just being overly religious, but we are so blessed by these unique boys.

And yes, Levi fell asleep in his swing like this- holding his foot up in mid air. So strange.

Oh goodness so many different directions to take the devotional thought tonight…

I have found a new flaw in myself this week. I have always known it was there but didn’t want to, or should I say didn’t know how to address it.

My heart has taken such a beating over the last several years. I don’t know that it is relatable to many of you, but when you watch someone you literally would die for go through suffering and pain it changes you. I can’t take their place, I can only step into the storm with them and hold them tightly, hoping they won’t feel the storm’s effects quite as much. But I watch helplessly as I see the storm sometimes win.

I feel so helpless like things are out of my control, which time and time again life has proven they are. And each day I wonder to myself if today is the day that things are going to dramatically change for the worst. Each and every day I have to wonder if this is the day I will find that my son has died in his sleep. Is this the day that Malachi will have “the” seizure- the one that takes away the sweet little 5 year old that gives me the tightest hugs his little brain can muster.

I have been living life waiting for the next disaster to hit. And oh my, is that a weary way to walk.

And to be honest, I don’t know that there is a solution to my problem. Sadly, all my fears are rational ones. One day that fear will become our reality…and like I have mentioned before I am torn between wanting my son to outlive Jake and I but also not wanting him to experience any excess suffering and pain, which many children like him have a tendency to do as they grow older.

So I have started to think this week about how I can combat this mindset, because deep down I know it isn’t healthy and it definitely isn’t the way God intends me to walk through my day. And this week he reminded me of something huge:

Malachi is not mine. He belongs to God. And while life tells us we should be on this earth for ____ number of years in order to live a “fulfilled life”, that is a standard that we have created, not God.

Malachi’s story has somehow managed to touch millions of people. There are not many immobile, non-verbal five year olds who have impacted the kingdom of God in such a big way….without speaking a single understandable word. Through his story we have been given the unique and wonderful opportunity to tell you all about our God. God has packed a lifetime of impact into these last five years for him- how beautifully powerful is that?!?! And how blessed are we that we have had a front row seat to watch God work?

And when I remember these truths my mommy heart starts to mend itself.

I really don’t know that I will ever get past this, but when those moments of fear hit I need to stop them in their tracks and refocus on the TRUTH and the beauty of Malachi’s life.

I know all that isn’t necessarily applicable to you, but this verse is:

Ephesians 2:10  “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”

Have you ever stopped to think about the day God created you? How He spoke you into being. How He took the time to handcraft you, as unique and special as you are?

And He also prepared things for you to do in this life. What are those things? Have you spotted them yet?

God didn’t create us with the goal being to live a long life, or have a bunch of kids, or become wealthy. He created us to do good works…things He has specifically chosen YOU for.

My prayer is that He continually leads each of us to those good works and gives us the strength and courage to attempt them, knowing they have been specifically designed for us.

Please pray specifically this week for Levi’s sleep study on the 31st. There is so much weighing on the results- if he fails this study we will have to trach him. Please join me in praying for a miracle that his vocal cords wake up before then and begin functioning as they should. And pray for sweet Malachi, that God will continue to reconnect the broken pieces of his brain. And pray that God gives Jake and I supernatural wisdom to be able to navigate the decisions and needs for these two special blessings.

Much love,

Leah

 

 

 

 

When I Am Weak

This has been a week of ups and downs. Strap on your seat belts and be ready for a long update.

But before I start those updates, let me tell you…last week’s update gave me a good laugh as I could tell how tired my brain was when I read it back. To be totally transparent, I fell asleep three times while trying to write the devotional part. Apparently my fingers kept typing during those moments leaving some pretty random sentences. At one point I woke up to find that I typed “Christians typing sentences”…

But I am filled with caffeine right now and haven’t seen a rat turd today so it should be better one.

Let’s start off with my epic Friday meltdown. A few weeks ago we took Malachi to his regularly scheduled neurosurgeon appointment. Some background info here: Malachi has a device in in his head called a VP shunt. When his brain bled at 3 days old the blood dried and clogged the small holes for his spinal fluid to escape the inside of his brain (the ventricles). The VP shunt is a small machine under his scalp in the back of his head- most people don’t know it is there, although oddly enough his hair is starting to turn gray right where the shunt is. The shunt has a catheter that allows the spinal fluid to get out of his ventricles and re-routes it into his stomach cavity for the body to absorb.

Statistically, most children that have these shunts will have at least one malfunction in the first 5 years. We are on year five and have not had a malfunction, praise the Lord! A malfunction would likely require emergency surgery to repair or replace the shunt as he cannot live without it.

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We routinely check the shunt using CT scans to make sure it is working like it should, but CT exposes him to a lot of radiation. At our most recent appointment the neurosurgeon suggested we do a “rapid MRI” to get some baseline images of how the shunt is working. An MRI would be much less radiation for him.

But here is the catch: we have never allowed anyone to do an MRI on Malachi. Yes, doctors have consistently tried to get us to do one but we have always declined as they wanted to do it more out of curiosity rather than medical necessity. Malachi’s brain damage is global (meaning all over the place) and he does not have much brain matter left. Doctors have always been fascinated by Malachi’s ability to function as well as he does and wanted to get better imaging of his brain. But MRIs require sedation, something we have a bad history with. So we always say no.

When the neurosurgeon brought up the rapid MRI I immediately started building up that concrete wall. I said “We really don’t want to sedate him unless absolutely necessary…” to which he replied that the rapid MRIs don’t require sedation. I said “So he can move?” and he said yes. I asked him how long the scan would take and he said “only about 30 seconds” and that it was a relatively new technology for the hospital.

Hey, that doesn’t sound so bad! We agreed to the rapid MRI and he said they would call and schedule it.

Fast forward to Friday and MRI day was here. I left Levi home with Jake and Malachi and I embarked on our 1 hour drive to the nearest children’s hospital. I checked in at the front desk 15 minutes before our scheduled time and they told me if I was willing to walk across the hospital to the other MRI rooms I could get scanned right away! If not, I would have to wait at least 30 minutes. That was an easy decision so I packed up and started our journey. We got to the new location and we were given some hospital scrubs to put on as you have to be extremely careful about what you can have near MRI machines.

We were changed and ready to go, but the techs were studying his paperwork and noticed the note about the metal coil next to Malachi’s heart. In 2015 he had a heart procedure to place a coil to close his PDA. Apparently the machines in this MRI room weren’t able to scan patients with heart coils. So they sent me back to our original office.

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I was trying my best to keep a good attitude as I wheeled Malachi, both of us still in scrubs that were too big and barely covering areas that needed to be covered all the way across the hospital again. We checked back in and I was told that they had given our slot away since we had gone downstairs and it was going to be another 30 minutes before the machine would be ready for Malachi.

I could feel my attitude morphing slowly into Mama Bear mode as he and I sat uncomfortably in the waiting area, still dressed semi-undecently. I had waited to feed him as I didn’t want him throwing up when I laid him down. But now he was well past his time to eat and still we were waiting.

We finally made it back to the MRI machine and when we walked into the room I got hit with a wave of nausea. This was the same room Levi had been taken when he had his first MRI in November in the Chattanooga NICU. Levi had not done well on the journey to the machine and screamed and screamed on the short isolette ride until he turned colors. I kept asking his nurse and the airway nurse that transported him if he was okay and they kept saying “his numbers are still good” which we know from our botched airplane ride doesn’t always give you a good picture with Levi. Deep down I have wondered (and still daily wonder) if this trip to the MRI machine is what caused his moments of brain damage. I should have stopped them after he didn’t handle the transport well, but I didn’t speak up…something I carry so much regret over.

That night with Levi, they had told me they thought they could do it without sedating him, and as I watched him scream I knew that this would not be as smooth as they were anticipating. They strapped him to a papoose board and put him in the machine for 25 minutes only to report that he had moved too much and they would need to try again when he was sedated. I was a wreck that night as I knew I should have intervened…the simply had not done what was in Levi’s best interest and I didn’t advocate for him. I cried myself to sleep that night, ridden with guilt.

So back to Friday…here we were in that same stupid room. I was trying to keep my emotions intact as I picked up smiling Malachi and laid him on the table. She started to pad his head and put ear plugs in his ears and made the comment “we have to keep him from moving.” This struck me as odd, because the neurosurgeon had specifically told me that movement was okay for the rapid MRI. I said “It is only for 30 seconds right?” and she said no that he had to be perfectly still for at least 10 minutes. I explained that it would never be possible for that to happen and she said “We may need to call anesthesia to sedate him then.”

And then the emotional floodgates started to break.

Last time we allowed them to sedate Malachi he went into a 30 minute (yes, you read that right) whole body seizure that led to a hospital stay. I started to cry and said “You are not sedating him. We would have never agreed to this if we thought he was going to be sedated.” And told her to sit tight while I went and called the neurosurgeon.

The neurosurgeons office backed up everything I was told in the appointment, and said they would be right there to talk with the MRI techs. The techs were obstinately stating that this was the only way to do a rapid MRI. At this point it was all just too much for me and I was bawling and snatched Malachi up off the table and told them we were leaving. I try not to cry much these days, but when I do it is one ugly scene.

The neurosurgeon team had been waiting on us to get finished so they could reprogram his shunt (they can do that with a magnet- super cool huh). And when I came wheeling out of the MRI area they were there waiting for me. I continued to uncontrollably ugly cry, frustrated that I had come all this way under false pretenses and even more frustrated that people that didn’t know my child’s medical history well were so flippantly just “going to call in anesthesia to sedate”. They said they would try to schedule another one when we could be prepared for sedation and I told them no thank you. I know CT scans are more radiation but we would prefer to do one of those as they don’t require any sedation at all.

But all that crying absolutely drained me. I seriously could not get a grip. The neurosurgery team was so kind in spite of my breakdown and gave me some meal vouchers to make up for all the chaos. There was a zero percent chance I would be able to eat so I packed them away for another day.

Alright now let me give you a few heartwarming updates. We had our typical appointments this week, but Malachi got to see so many of his friends too. His buddy Thatcher just happened to have a horse therapy session right before Malachi!

 

Then the following day we were able to catch up with another friend named Jonathan. His mother stumbled upon our Chick-Fil-A story last year and connected with us…we live in the same county but on opposite sides of the mountain so our hangouts have to be intentional. We were able to meet up for lunch this week!

 

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Malachi has been showing us a lot of emotion lately, which is amazing to see, but challenging to navigate. For example, at lunch with our buddy I let Levi sit on Jonathan’s lap. Malachi did not like sharing Levi and quickly said “NO” with his signs. When I offered for Malachi to hold Levi he very adamantly again told me NO. I put Levi on Malachi’s lap anyway and he proceeded to try to push him away. This happens often when Jake or I try to talk to Levi or give him attention…Malachi gets very angry.

He is also having a hard time sharing his toys with Levi, so we are trying to respect his feelings and designate some of his favorites as big boy only toys.

But he is very interested in the Big Brother side of their relationship. We talk a lot about how Levi is a baby but Malachi is a big boy so he has to learn to be nice to Levi. He likes to have those talks and puffs out his chest with pride that he is so big. He really does love his baby Levi.

 

But this week we experienced another first with the boys. Levi and Malachi were laying on the ground playing and as Levi often does, he rotated his body all the way around and kicked Malachi in the tummy VERY hard. I immediately moved Levi and watched Malachi to see how he would react. He was in shock at first, then his face morphed into pure sadness. He just couldn’t process why his baby brother had hurt him. It wasn’t a “pain” cry, but a “you hurt my feelings” cry that took 45 minutes to get through. I tried to explain to him that Levi is a baby and doesn’t know how to listen and obey the rules like Malachi does. I finally got him calmed down and when Jake came into the room I told him what had happened- hearing it again made Malachi cry even harder as he reminisced about what happened. Poor boy.

 

On my 4 hour drive home from South Carolina on Monday Malachi had his first full fledged temper tantrum. He has never had these before so it took me pulling over three times and checking him for pain/discomfort before I realized what was happening. He hollered from the back seat, screaming, yelling, and crying to let me know that he did not want to be in the car any longer. But yay for his ability to show emotion!

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Levi has been doing so great this week. He is thoroughly enjoying exploring different foods and is eager to try new things. I took this video of him eating for you:

 

He is also exploring toys like a wild man. We let him play with one of Malachi’s cars and he was cracking me up so I took a video:

 

But the biggest fun update about Levi is that he has started giggling!! And it is such a beautiful noise; oddly enough Malachi giggled for the first time on July 1st (same as Levi!). Take a listen:

 

Levi really is such a good baby. He is starting to want to be held more and will reach out his arms to be picked up. He is insistent though on self-soothing when he gets upset and the only solution is to set him down by himself. This is something that has been making me sad lately, as it reminds me of all the times I wasn’t there in the NICU with him when he needed to be comforted. He has now trained himself to self soothe instead of relying on mommy to help, and it breaks my heart that a child so small ever had to experience suffering alone. A child should never have to equate humans to stress, and desire to be left alone.

In unrelated news, the bear(s) are back. Our neighbor saw one sitting in the road in front of our house last week, but he hasn’t come back up to the house yet! That I can handle.

Then later in the week Jake and I pulled onto our road and one was about 100 yards away. He hid in the tree line as we drove by and I texted the neighbor who immediately went in his car to go find him. He texted back that he had turned the corner from our house right after we had pulled in the driveway and it was running full speed up the road- almost as if it was chasing our car! He ran into the trees so we have been keeping an eye out for him.

This one was much smaller than our visitor a few weeks ago. Tall and lanky like a teenager.

Last week I alluded to some great conversations I was able to have with some of our youth, and one in particular keeps resonating with me. I am going to be very careful here to protect her so I will give general information.

One of the teens came and found me at camp late one night to talk about something she has been regularly struggling with. This particular thing has been crippling her and she just wanted to know how to get rid of it. She said “I have prayed and prayed for God to take this from me and He just wont.”

As she spoke God said to me “Tell her about the thorn.”

I said “Have you ever read about the thorn in Paul’s flesh?” We turned to 2 Corinthians 12 and started studying that scripture and by the end even I had God goosebumps as I knew this message was for her, me, and for someone who reads the blog as well. Maybe this is for you.

In this scripture Paul talks about how he was given a thorn in his flesh. He actually refers to it as a messenger of Satan put there to torment him. No one knows exactly what the thorn represented, but we know it was ever present and painful. He prayed and he prayed for God to remove it from him…

Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Is there something in your life that causes you DAILY pain? Something that you feel with every movement throughout the day? What is the thorn in your flesh? What have you prayed for God to take from you, but it just won’t budge from your life?

As I read verse 9 with my teenager friend I started crying, as I heard God saying these words to me… “My grace is sufficient for you, for my power is made perfect in weakness.”

He acknowledged the struggle. He acknowledged the pain. He didn’t chastise Paul for his complaining, but rather he acknowledged the thorn. And He reminded me that it is in those weak moments when I am empty that God’s power can be seen. It is in those moments when I have nothing left…when I am limp and powerless… that God steps in and strengthens me with a light that can only be His.

His power is made PERFECT in our weakness. 

Without my weaknesses, God is not needed in my life. 

And then Paul goes on to say that he will boast about his weaknesses. What a slap in the face to the devil. I think back to the words of Joseph in Genesis 50: “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

I started thinking about my life with Malachi and Levi. Speaking transparently, their level of care is the thorn in my flesh. Mentally and physically keeping them alive, healthy, and happy is a true struggle and challenge. I have prayed over and over again for God to heal them completely…

But His grace alone is sufficient. And God’s power is absolutely made perfect in my weakness.

Oh what things I imagine the devil predicted would happen when he hit Jake and I with each of our challenges…each of our thorns. And like Joseph, I see that those things the devil thought would break us and cause us to turn from God have only been used BY God for glorious things.

I look at my life and see how I have been stripped down. My ability to control my life is gone. I live day by day, praying that tomorrow will be the day that my sons are healed. And each day I have to learn how to deal with disappointment that God hasn’t healed them. But oh my goodness, how this life has taught me to rely on Christ’s power.

His power is made perfect in my weakness.

So like Paul, I am thankful for my thorns. I am thankful that I have been given such a challenge, because it requires that I stay close to God. Every time my knees grow weak, like this week in the MRI room, He is there to catch me and renew my strength.

What a blessing it is to be given daily reminders of the necessity of walking with God.

“For when I am weak, then I am strong.”

WOW that sentence holds some power.

I hope this week you are able to see your thorns in a new light. I pray that God is able to touch your soul as He whispers “My grace is sufficient for you, for my power is made perfect in weakness.” I hope you are able to see your weakness as a blessing, and that it sends you falling into the arms of our loving God.

Please continue to pray for our family, and join me in praying daily for my sons to be made whole. God’s power is also made perfect in their weaknesses….in Levi’s struggle to breathe, in Malachi’s struggles with epilepsy and body. I see God work through their weaknesses to touch my soul. Pray that He continues to use their lives to manifest Himself here on earth.

Much love,

Leah

 

 

 

 

 

He Equips The Called

Call me crazy, call me courageous, call me utterly stupid but I am writing this blog post from a hotel room in South Carolina- alone with both of the boys. Tonight has been exceptionally exciting but more on that in a minute.

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Each year we take our youth group to an amazing summer camp about 4 hours away in South Carolina. Malachi and I have gone every year, and while I strongly desired to go this year we decided that it would be too logistically and physically difficult with both boys.

Then Wednesday night rolled around and as I taught the youth lesson I felt like God was telling me to go. Their spiritual health is more important than my comfort. So I went home, found a hotel room close by with a fridge and a sink, and started to pack our bags. 10 tanks of oxygen, food supplies for everyone, ice packs, Tomato seat for Malachi, rock-n-play for Levi, medical machines, worst case scenario kits, freshly printed updated medical histories for both boys in case of emergencies…all packed in such a way that I could get the boys and the gear into the hotel alone in just a few short trips.

 

I kept telling Jake that if God called me to go to camp, then God would also provide the energy needed to survive it.

 

So far that has been the case! Last night was a chaotic one with us staying at the camp until nearly midnight . By the time I got the boys back to the hotel room they were wide awake so we watched cartoons and played until 1:30. Jake is staying at camp with the other 20 kids and chaperones from our group, so I have some help during the daytime.

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Then the snafu in my planning- because I booked the hotel so late I was only able to get a room on the second floor- a handicap parent’s nightmare. As we checked in I thought about the safety of the boys in case of fire emergency and felt confident I could carry them both, clumsily but doable. What I didn’t figure into the equation was power outages…and of course in life’s funny way the power went out first thing this morning. After several hours of Elmo music on my phone and still no power (which equals no elevator to leave) I called for reinforcements and Jake and the chaperones drove over to help me cart the boys and their gear down the stairs.

Then came tonight’s adventure. You may not know this about me but there are a few things that absolutely give me the heebie-jeebies. One of those is hotel rooms. When we got to the room on Friday I used an entire canister of Clorox wipes, cleaning every surface we could possibly come into contact with. I took my own rubber gloves and checked for bed bugs. I also used the rubber gloves to fold up the comforter and place it away from me and the boys. I wore my shoes the entire time and if anything touched the floor it went into the “contaminated” pile.

Was that overkill- yes, very likely so. But with my special boys I didn’t want to take any chances.

Now fastforward to tonight. We had a great day at camp! Tonight I got to spend some time with our group and I was so encouraged to hear how God is working in their lives! I stayed later than I intended to and got to the hotel just after midnight.

I wheeled the boys in and went to set my bag down and there it was…sitting on the sheets of the bed was a giant, single rat turd. Mmmhmmm you read that right.

One of the top thing on my phobias list is rats. And with Malachi and Levi in the room I knew I would never be able to close my eyes knowing there could still be one in the room. So I packed up (an hour long process) got a refund for the night and drove 20 more minutes in the wrong direction to find a nicer hotel. There I had to do the exhausting process again of carting all the gear in and unpacking. It is now 2:30 am and I just got both of the boys in their PJs!

You can’t make this stuff up.

Alright, back to camp. The biggest issue on my radar here is Malachi’s body temperature as he has been struggling this summer. Thanks to some battery operated clip on fans and a cooling towel he has been handling it well.

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I have been thinking back to the last several summers at youth camp. The first two years were a “true challenge” as it was one of the first times I had taken Malachi alone on a trip. Then last year rolled around and the “true challenge” was managing en ever growing Malachi in addition to being pregnant. Now this year the “true challenge” has been amped up as I attempt this with two medically needy children, one of which is a illogical 7 month old.

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As I thought about our history here it was such a reminder of the way God works. Jake and I often reach a point in which exasperatingly we say “We just can’t handle anything else!”

Yet God continues to challenge us. And with each challenge He equips us even more for the difficult tasks He gives us.

That is one of the beautiful things about God- that He equips the called. You don’t need prior experience or a shining resume to be used for something great.

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As far as pre-camp updates, we are still on the road for medical and therapy appointments nearly every day. This week was the much anticipated feeding therapy appointment for Levi which went very well! So well, in fact, that we have been cleared to start attempting solids by mouth. They gave him a few bites of peas which he wasn’t too keen on but he ate it well without signs of aspiration.

We are learning that the Levi you read medical histories about is nowhere near the Levi that medical providers lay eyes on. We are continually surprising providers with a relatively typical child- PRAISE THE LORD!

Levi is still pretty loud with his stridor but is still managing his oxygen saturations very well!

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Last week I told you that I was munching on some scripture and still trying to grapple with it before I shared my thoughts with you. Well, unfortunately I haven’t come to a good conclusion quite yet but still think I need to share it with you…maybe it will give you some thoughts to munch on when you are driving this week.

In the Old Testament (2 Kings 4:8-37) we read about a nameless woman. The Bible only refers to her as the Shunammite woman. When the prophet Elisha walked into town she provided him with a meal to eat. Each time he came into the city she offered him a meal. One day she told her husband that she perceived that Elisha was a man of God and felt that they should make a room for him to stay in whenever he came to town. Such a kind gesture of hospitality…I have no problem with the story up until this point.

One day Elisha is in that room and he tells his servant to go and get the Shunammite woman. Out of gratitude he asks the woman if there is anything he can do to repay her kindness. She turns him down and says she is well taken care of. Later on Elisha is speaking to his servant:

14 “What can be done for her?” Elisha asked.

Gehazi said, “She has no son, and her husband is old.”

15 Then Elisha said, “Call her.” So he called her, and she stood in the doorway. 16 “About this time next year,” Elisha said, “you will hold a son in your arms.”

“No, my lord!” she objected. “Please, man of God, don’t mislead your servant!”

17 But the woman became pregnant, and the next year about that same time she gave birth to a son, just as Elisha had told her.

WOW what an awesome ending to that story! She was so humble, even turning down a blessing when the opportunity was provided for her to name her want/need.

But that isn’t the end of the story….

18 The child grew, and one day he went out to his father, who was with the reapers. 19 He said to his father, “My head! My head!”

His father told a servant, “Carry him to his mother.” 20 After the servant had lifted him up and carried him to his mother, the boy sat on her lap until noon, and then he died.

And this is where I struggle. This story has been playing over and over in my mind since Levi’s last surgery. God blessed this woman with her greatest desire- a son. This was a true, sincere miracle. A true blessing from God.

And then that blessing died. My momma heart feels the pain that she felt in that moment. And the confusion. How could God send her a blessing only to swiftly take it away years later.

And then I thought about Mary, the mother of Jesus. When the angel came to her he said: “Greetings, you who are highly favored! The Lord is with you.”

And in that account Mary was given a miracle…only to be taken in a brutal yet purposeful fashion from this earth before her very eyes.

So why did the Shunammite woman lose her special blessing? I think my difficult time with this scripture is due to the empathy I feel towards this woman. It should also be mentioned that at the end, Elijah raised her son back to life and all is well again.

Sometimes as Christians we look for that safety net. We look for signs that things are going to be just fine. We seek after security in our feelings through fruitless means. We think that when we are blessed and “highly favored” that surely nothing bad will happen to us.

But being a Christian has nothing to do with “protection” from challenges in life. It requires a daily walk with God, and leaning heavily on Him for strength when things don’t turn out as you would expect.

Oh my goodness I want so badly to write more but my eyes just can’t stay open and both boys are asleep.

Thank you all for checking on our family this week! Please continue praying for miracles for each boy and pray that until the miracles come God will send His angels to protect them.

Much love!

Leah

Walking On Water

So many medical, emotional, and surgical updates for you this week. It was definitely a week of ups and downs! But it is always nice to start with a super cute picture:

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We started this busy week off with a very hot Monday. It has officially turned to summer here in Tennessee and boy, do we have some major sunshine. I even got the chance to sit on the back deck alone for a glorious 30 minutes and read a Reader’s Digest I had been saving in the plastic wrapper for when I got some free time. I plopped down and ripped the plastic open and started laughing hysterically as I noted the cover was dated May 2013. I guess it has been that long since I have had “free time”. The articles were outdated but it was a wonderful 30 minutes.

We spent the morning at the soccer field and then headed into town for Malachi’s horse therapy. The time in the heat got to Malachi and when we got him home he was acting a little more lethargic than normal. I took his temperature but it was normal so we just watched him very carefully. Twenty minutes later I took his temp again as he looked a bit worse and it was already at 101 and rising. His brain struggles to regulate his temps so when he overheats he continues to do so very quickly. We stripped him down to his diaper and started trying to bring it down and by bedtime we had him back at a decent temp. We struggle with this every summer, but it was a bit alarming at how quickly this one came on.

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Tuesday was a busy day that started with a trip to the neurosurgeon (for Malachi) followed by the neurologist (for Levi). Not too many updates to share on those…Malachi will be having an MRI done in a few weeks to check his shunt to make sure it is working properly. And the doctor wants to do a repeat MRI on Levi when he turns two, so until then we will be followed on a bi-annual basis, assuming no seizure activity starts. He did label him as “Developmentally Delayed” since he isn’t reaching all the expected milestones, but we don’t put a whole lot of stock into labels in our family.

 

We were crammed in this tiny room with the boys and their gear for an hour an a half as we waited on the doctor. By the time we left we were all a little cranky.

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We ran the boys back home where they stayed with Jake while I ran to get an ultrasound done on my leg. The good news is that they could not find a blood clot. The bad news is that I am still experiencing pain in that leg and it is almost identical (in spot and sensation) to my previous blood clot. They felt confident that I did not have one and said the scan would show it if one was there. Any of you medical professionals have any ideas?

Wednesday Malachi got fitted for his new bath chair, which is absolutely perfect for him! It is so much more supportive than his other bath chair which makes it much safer. He spent 25 minutes playing in the shower the day it came in!

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And I thought you would be amused by this little monkey playing. He has been using only his feet to play with things lately, and this was no exception:

Then came Cincinnati. Dum Dum Dummmmmmm.

Anytime we go on a trip with either (or both) boys there has to be a whole lot of preparation. We have to pack and prepare for each worst case scenario. I loaded up the car late Wednesday evening with enough medical supplies and clothing for at least 4 days just in case we have to stay in Cincinnati longer than expected. We had a 12:45 appointment in Cincinnati so we woke up bright and early to make it there in time. We were on the road by 6am and pulled into the hospital parking lot at 12:30- a little too close for comfort! But Levi handled the drive very well.

We met with the pulmonologist who would be doing the bronchoscope (lung) portion of his procedure and talked through Levi’s medical history. This is always more difficult than it sounds and many of the doctors we speak to don’t understand why we so adamantly wanted to avoid the trach, and I always feel the need to defend our decision making. But here is the biggest point we bring up when that question is asked…

There is a 50% chance his vocal cords will never wake up and he will have to keep the trach for the rest of his life. We are making decisions based on him being in that category and trying to avoid a lifelong trach for Levi. Yes, trachs can be wonderful lifesaving devices but also bring a complicated and restricted life along with them. Like we have said before, we are simply trying our best to preserve his normal.

Many of the procedures we have tried have to be done before the age of 9 months when his airway becomes less pliable. Yes, this journey has been exceptionally rough on Levi but we still don’t regret trying to give him a shot at a trach free life and exhaust every other avenue possible.

After the appointment with the pulmonologist we had just enough time for a visit with my grandmother, dinner with my dad and younger siblings, then settled in for the evening.

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I knew I needed to get a good night’s rest before our hospital stay but I just couldn’t seem to get my mind to shut off for the night. With Malachi’s medical journey I was always somehow able to keep the stress from physically affecting me. But with Levi’s journey I am a complete and total wreck. As I laid there I couldn’t stop thinking about what they were going to find or what they were about to tell me. It is the unpredictability of the situation that seems to be messing with my emotions. When I finally would fall asleep I would wake up 20 minutes later in a panic. Finally morning rolled around at we got up at 5am to get the day over with.

I did realize this week that I seem to be struggling with some PTSD more than I thought. There were so many triggers, many of which I did not see coming. Simple things like the floor tiles…as I wheeled Levi down the main hallway I was looking at the floor which was colorful with fun patterns and for some reason my mind remembered those stupid tiles and my knees buckled. I immediately felt like I was about to vomit and had to sit down. The room was spinning and I started to sweat. I felt ridiculous and petty but just couldn’t seem to get a grip. There were so many of these moments this trip and I felt a little out of control emotionally. My stomach is still a mess from the nerves.

Levi and I prayed, sang, played, read the Bible, and napped while we waited patiently for his turn in the operating room. After 3 hours cooped up in a pre-op room it was finally his turn and off we went. I know I always say this, but there is just something so nauseating about walking your child to an operating room and kissing him goodbye as you hand him off to strangers.

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I left his beloved raccoon toy with him so he would have something familiar there when he woke up, then walked alone down the hall towards the waiting room pushing an empty stroller. I felt the tears coming, but once I open that gate it is difficult to shut so I stuffed those emotions deep down inside of me and kept walking.

I checked in at the surgery desk and before I said my name she knew it…I looked at her quizzically and she said “We remember you!” I wasn’t sure whether to take that as compliment haha. But the truth is, I know their names too. I hate that. I hate that we know so many hospital employees. I hate that we know routines. I hate that we know which elevator to take without stopping by the information desk. I hate that we know which bathroom is the cleanest. I hate that we know to eat from the salad bar at 11 when the food is the freshest and the line is the shortest. Sometimes being a frequent flyer isn’t a good thing.

When Levi is in surgery I wait in a large room with several other families. I am a people watcher, which always helps pass the time. Most of the time there is at least one “Team” there for a single patient- they always wear matching shirts and have all kinds of goodies for the child when they come out of surgery. Then you have the “pacers” who are so anxious they can’t sit down. The largest group you find are the people that sit closest to the outlets and fiddle with their phones trying to keep their mind off of things. You have the “sleepers” who look like they are actually sleeping, but we all know there is no way to close your eyes and actually sleep when your child is in surgery. And there are the anxious ones…like me…who can’t sit still and find different things to pass the time, like people watch. I always make sure to clip my fingernails before a surgery or I unknowingly do some damage.

When the surgeon has an update on your child they call your last name over the intercom and you go up to the little desk in the front of the room. From there you are either directed to a phone where the surgeon is waiting to speak to you or they send you into one of the six small rooms that each contain chairs and a whiteboard. You enter in doors from the waiting room side and the surgeon comes in through a door off the operating room hallway.

During Levi’s procedures I get called into these rooms frequently and often as I have to speak with each of the teams involved…anesthesia, pulomonology, ENT. After each meeting you go back out into the main waiting area until they call your name to go back to the recovery room with your kid. It always breaks my heart when parents come out of those little rooms and their faces clearly show they did not get the news they had hoped.

It really is a hard environment to be in. Surrounded by people just like me that hate to see their child having to go through something so painful. The recovery room is just as bad as it is a large area with walled off curtain slots for each patient and their parents. Hearing children wake up from anesthesia will make your stomach churn. Levi does not wake up from anesthesia well and with his stridor we tend to turn lots of heads.

So here is what we learned about Levi’s airway:

Good news: His airway is as wide as it was last time! That is wonderful to hear. The piece of his rib that they used to prop his vocal cords open looks like it has stayed in place and his airway was “wide enough to pull a truck through” as one doctor put it. They put a balloon in there to dilate it but it is already larger than the balloon so the dilation did nothing.

Bad news: his epiglottis and arytenoids were grown back up and needed to be trimmed, a procedure called a supraglottoplasty. If you remember, this was the exact same procedure we did in January. When he had it done the first time I asked them if this was something they would have to do again in the future and they said no. But it looks like the cartilage grew back (shocking all the doctors) and the procedure was repeated. Here is a visual of what they trimmed.

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So we have now surgically done all we can to allow Levi to remain trach free. His airway is wide open, and the area around the airway is as unobstructed as we can get it. So have we done enough for him to breathe safely?

The team has come up with a list of three things that have to happen for him to be able to continue to avoid the trach.

  1. Continue to grow. The fear is that his work of breathing is burning too many calories and will stunt his growth. So far this is not an issue and he is gaining weight like a champ. He is 7 months and 14 pounds (he started at 4 pounds 8 ounces).
  2. Get sick safely. This one sounds silly but makes sense. The thought is that when Levi gets a cold or another respiratory sickness that the swelling will cut off his air supply. If this happens he will likely end up in the ICU and back on the ventilator. But we won’t know for sure how his airway will react until that first major sickness hits.
  3. Pass a sleep study. Levi is maintaining his oxygen well during awake times but at night will dip down without the nasal cannula. When we have him on 1/8th of a liter of oxygen he is fine at night. They are afraid that he is not expelling enough of his carbon dioxide when he sleeps which can cause his brain to not develop properly. The only way to check this is to stay the night in the hospital hooked up to some major equipment. We have schedule his sleep study for July 31st and need some major prayers that he will pass it!

The doctor was a little concerned that he would need to spend the night in the ICU as he was one cranky boy, but with the amount of trimming they did it makes sense that he would be in pain. We Face Timed with dad and brother, hoping that would distract him from crying which worked for a bit.

 

We were taken to the complex airway floor where Levi screamed off and on throughout the afternoon and evening and finally settled out around 2am. I have been on high alert from the stupid bear (who hasn’t been back since we prepped the shot gun) so every time I heard a noise I woke up ready to run for the gun. We were right in front of the noisy nurse’s station so that happened more times than I would like to admit.

We got a few hours of rough sleep in and woke up at 6:30 and spoke with the doctors about discharge. By 7:30 we were on the road! I stopped for a quick breakfast with Jake’s parents (aka caffeine for a very tired momma) then raced back to Tennessee.

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Levi has been in pain but is slowly getting better. His stridor is louder but we were told to expect that since the area would be very swollen.

He did enjoy a nice post-hospital stay bath this afternoon.

While Levi and I were in Ohio, Jake and Malachi enjoyed some big adventures- something I think Malachi really needed. They went to the bowling alley one day and the playground another. The one on one time was good for him. I snapped this picture last week and noticed it had some of that jealousy I have been telling you about.

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There is a wonderful thing happening locally here starting in October! A special needs mom in the community has started an organization that hosts programs and events for children with disabilities. They will be kicking off with an indoor soccer league in the fall and Malachi will be participating! Oh how he will love the fun that league will bring, and it will be something that is “just his” which he needs right now. And the added bonus is that they will be using the gym facilities at out church so it will be five minutes down the road!

As far as devotional thoughts go, I have been mentally munching on some biggies. But I still haven’t sorted them out quite yet. God laid 1 Kings 7 on my heart the morning of surgery and I listened to it on my drive. There are so many confusing things about that chapter so I will continue to process and pray about it before I share that with you!

But he also reminded me of the story of Peter walking on water. It is a common story, and one that is pretty easy to decipher, but I think I needed to be reminded of it this week.

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“Come,” he said. Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”  Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

Have you ever almost drowned? I remember jumping into my grandparent’s pool as a child and looking up from the bottom of the pool. I remember seeing the ladder but realizing that it didn’t go much further than two feet from the surface of the water and panic swept over me. Thankfully I was pulled out of the water quickly that day and didn’t drown.

But that feeling can be crippling. You freeze and panic, not sure what to do to get out of the situation safely. This week in Cincinnati I truly felt like I was drowning. I felt physical  pressure all over my body as I entered that building again. My body was telling me not to keep walking, but I don’t have the luxury of being able to tell it no as my son has to be there. I had to focus on taking big, deep breaths and fight dizziness that threatened to take me to the ground.

When I picture Peter in this story, I see him stepping out of that boat with a look of confidence and determination on his face. Jesus had told him to step out of the boat, and he obeyed. But a few confident and sure steps into that journey he thought about the reality of the situation and panicked. He saw the that the odds were stacked against him as the wind pushed against his body. And he started to sink.

Can you relate with that like I can? Stepping so confidently into something….so sure that God directed you to do so. Then questioning it like crazy?

Like Peter, sometimes God challenges us to attempt the impossible. Sometimes we are asked to walk on water. And if that task alone wasn’t daunting, we are often met with outside forces like the wind and the waves that threaten to take us down.

But one thing I have to remember is that Jesus said “Come”.

I needed to be reminded this week that my strength in those moments needs to come from focusing on the face of God- the one who has called me into this challenging life. And even though the water moves and the wind blows, I can be assured that every step will be firm if I focus on Him. We must obey his firm yet loving command to get out of our comfort zone and walk in faith.

Because it is in those moments of fear that our faith is strengthened.

And even when we fail, as I am sure I did this week in Cincinnati, there is so much comfort in knowing that like Peter, Jesus will immediately catch me and keep me from drowning…as long as I stay close to Him. God’s grace is such a powerful thing.

Will you all join me starting this week in praying specifically over Levi’s airway when he sleeps? Pray that his levels of carbon dioxide and apnea stay in a safe range and that we will be able to avoid the trach at least for a few more years until we see if his vocal cords will wake up? Or better yet, let’s pray that his vocal cords wake up TODAY and all the medical professionals see God’s power! “Ephphatha” BE OPENED! Let’s declare this together over his airway.

Thank you for caring for our family. Our support system humbles us so much and is felt on weeks like this one.

Much love,

Leah

 

This Is The Way

Step by step. Day by day.

If you could see our calendar you would likely laugh out loud. Yes, it is full of appointments for the boys but it is also full with our other part time jobs (aka necessary income) as soccer coaches and youth pastors. There is a whole lot of color coding required for our whiteboard calendar haha. This week all of the roles we fill managed to collide in a messy and crazy way, but we came through mostly unscathed!

Honestly, Jake and I love both of these part time jobs even though it can be logistically challenging to do. We also feel so strongly in a solid work ethic and want to be able to give 100% to each and not allow child chaos to interfere with our ability to give each group our full attention. And so far the boys have always been up for the adventure!

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Sundays we get up bright and early and head to church.Yes, even when we are running on 3 hours of sleep. Church for us is not an obligation or something we want to check off the list. It is a much needed soul refresher for us as we get the chance to be around our Christian brothers and sisters and worship God together. What a blessing Sunday mornings can be if you allow them to.

A few Sundays a month I sing with the praise team which means Jake and I drive separate to church since I have to be there an hour early to practice. Yes, this is a challenge for us but we feel strongly that we are called to plug ourselves into our church body and serve where needed. We each take a kid and take on all medication, clothing, and feeding responsibilities for that kid. Sunday evenings we are back at church to teach the youth lesson.

Monday and Thursday mornings this summer we get up and head to the high school soccer field where we have optional open fields for the girls. We take the boys with us so we have to make sure everyone is medicated, fed, and changed before we leave.

Mondays we load up from soccer and head into town for Malachi’s horse therapy. This week we also had a dentist appointment for Malachi that afternoon. Then at 7pm I headed back into town to be a guest speaker at another church’s youth camp.

Tuesday morning we drive back into town to take Malachi to swim therapy which is immediately followed by Levi’s physical therapy. That afternoon I took the youth group to a local Christian concert from 5:30-midnight. Yikes that one was a challenge for my very tired mind!

Wednesday I hit the road to take Malachi to Vanderbilt- a trip that lasted about 13 hours total. We usually teach the youth on Wednesday evenings but had to find someone to fill the spot this week. Jake and Levi stayed home and had some good bonding time!

The rest of the week was manageable with pharmacy runs, insurance calls, and trying to catch up on housework. We went to a birthday party on Saturday at a local park and Malachi had so much fun playing on the swings and slides!

Crazy, yes. And this coming week is just as intense. Which is why we always focus on taking life day by day.

Now to move on to medical updates…

Dentist: Little known fact- Malachi only has one real tooth. He has had some major dental surgery done and all the other teeth are capped. We go in periodically to have them checked and everything still looks good. We call his one final real tooth his “accountability tooth” as we assume they left it to see if we as parents could keep it cavity free haha. We passed the test and are good to go for another 6 months.

Brushing his teeth is like trying to brush the teeth of an alligator. But we do the best we can.

Vanderbilt: Malachi sees a wonderful orthopedic surgeon at Vanderbilt. We trust this man very much and, just like I suspected, he mentioned that it was time for surgery. Malachi’s feet are turning out and up again. This is a byproduct of his brain damage- his brain is telling his tendons to pull tighter and it is starting to change the anatomy of his bone structure in his foot. Those bones don’t “permanently solidify” for a few more years so now is the time to do some molding and reconstructing.

In December we will be doing heel cord releases in both of Malachi’s feet and possibly in one of his hips. His hips are both 100% out of socket, another mis-communication from his brain to his tendons. The left hip is much higher than the right so while he is under we are considering trying to loosen that up a bit. Each surgery site will have to be cut open and each tendon cut and sewn back together. He will be in casts for about 4 weeks.

We have gone soooo long without a surgery for Malachi and I am so disappointed to hear that word again for him. But I also want to make sure that Malachi is comfortable and not in long term pain so I see the need for this one to happen.

The truth is, as Malachi’s life goes on he will continue to develop more issues with his health. While we have had a wonderful break from medical interventions for him, this appointment was my reality check.

Malachi was fitted for a scoliosis brace last visit and when we put it on him the pressure put him into some major seizures and projectile vomiting that lasted for 4 days. We decided we were done with that brace as it was not worth the brain sparks for him. I explained that to the surgeon this week and he understood our decision and supported it. Unfortunately his hips being out of socket are causing him to sit crooked, worsening his spine. It is something we are definitely trying to keep an eye on and will likely drive some major decisions in the near future regarding more surgeries.

Until December’s surgery comes Malachi is getting a break from his AFOs (leg braces). At this point they are doing more harm than good. So I went to Old Navy and let Malachi pick out some “big boy socks” and he was enthralled in the process. We got socks with bugs, sharks, stripes, and so much more. I give him two options every morning and he tells me which pair he wants to wear. When I put the first pair on him right after we bought them he was giddy with excitement and couldn’t stop giggling.

His little feet are so distorted and we always strive to preserve his dignity. When people look at Malachi we want them to see his beautiful smile and sparkling eyes and not be distracted by his physical differences. So until we straighten out those beautifully imperfect feet we will let him wear cool socks.

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We also ended the adventure with our annual trip to the Rainforest Cafe in Nashville. He has always enjoyed going there and listening to the jungle animals and noises. But this visit he was so engaged! He was making the noises back to the animals, roaring back at the tiger and screaming back to the elephants. I could see so much of a change in his imagination- it was really sweet to see. He also made some pretty amazing eye contact with me in the restaurant’s low light. That moment of recognition on his face always makes my heart flutter.

We have been working this week on spoon feeds and his communication device. I took this video to share with you:

We also played a whoooole lot this week. Malachi is re-discovering toys now that Levi wants to play with them. Yep- the jealous bug is still biting in our house. He also got to play with a special whistle rocket (a “big boy toy”) with daddy.

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He is all about being a big boy these days and getting to do things that Levi isn’t allowed to do yet. And he is still helping mommy babysit each morning. Such sweet boys.

Levi is still doing well! His personality is continuing to come out and he makes us laugh every day. He has a flirty smile he can flash at a moment’s notice and has been talking a lot this week. He is allowing me to hold him for longer periods of time, even up to 15 minutes!

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This week is a very big week for our boys. In addition to therapies, Malachi will see the neurosurgeon and Levi will see the neurologist. Malachi is also scheduled to get his new bath chair we have been so anxiously awaiting! Then on Thursday morning Levi and I will make the trip to Cincinnati and head straight to the hospital to meet with the pulmonologist who will be doing the bronchoscopy portion of Friday’s procedure. Our original plan was to take the whole family but we weren’t able to get a Ronald room for both nights and transporting gear multiple places in 48 hours sounds miserable, so Jake and Malachi will be staying in Tennessee. Levi and I will head to Children’s Friday morning to check in; it looks like his procedure will be around 11. We will stay that night in the hospital and our goal is to leave around breakfast time Saturday morning.

When we take him for these procedures we are never quite sure what they will find when they get in there. We are always asked to sign consent for several different medical procedures that they may decide to do after they see his airway. So he may need another supraglottoplasty (epiglottis trim), another balloon dilation, or maybe something new. We just won’t know until they get in to take a look.

This is operating room trip #20 for Levi. But it never gets easier.

As I mentioned earlier, this week I was given the opportunity to share a message with a group of teens from another church. Jake and I feel that God has given us a testimony that is meant to be shared, so when opportunities come our way we are so excited to get to share the things that God has done in our lives.

As I prepared what I wanted to share I thought back to my sophomore year of high school when the Lord used the book of Job to catch my attention. I had always thought the story of Job was very powerful but I remember reading the first few verses and my eyes were opened in new ways. I realized that Job was not only noticed by God, but God was pointing him out and bragging about him to the devil himself. As Job faced tragedy after tragedy he still praised the name of God. I remember reading that in high school and picturing the pride that must have beamed on God’s face as he watched Job praise him in spite of the devil’s attacks.

I remember being a young teenager and praying that I too would make God proud, regardless of any trials I went through. I prayed for a Job moment…a moment I would be tested….and I prayed that I would have the faith and strength needed to pass that test. I prayed that I would be able to be righteous just like Job.

And boy, oh boy, did I get my Job moment. Or should I say moments.

Whether or not I am passing that test, I won’t know until I see God face to face. But what a challenge it is to praise Him in the storm. I know many times I have failed. But I hope that my faith in some of those dark moments has given God something to smile about.

I have had a verse continually playing in my head over the last three days. I have no idea what sparked it into my brain, and honestly didn’t know the context until I took the time tonight to look it up.

It comes from Isaiah 30:

How gracious he will be when you cry for help! As soon as he hears, he will answer you. Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes you will see them. Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.” 

There are a lot of things that spoke to me in this verse. God’s readiness and eagerness to comfort us when we are in need. The reminder that sometimes we are given adversity and affliction from the Lord…not as punishments but as opportunities to strengthen our faith and character. Like bread and water, these moments of affliction are necessary to strengthen us. But the biggest reminder for me in this verse comes from the last line…

Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.” 

Jake and I walk daily down an unknown path. Often times that path is dark and we cannot see past the step we have just taken. We are called to a complete life of faith in God.

But this verse has brought me so much comfort this week, particularly as we have had to talk with surgeons for both of our precious boys.

No matter how dark our path may get, no matter how unknown the road will continue to be, God is with me. We face so many decisions and are pulled to the left and right by so many voices and opinions. But what a comfort we have in knowing that God’s voice will ring out louder than all the rest as He guides us. My prayer is that He continues to speak in such a commanding yet loving way and say “This is the way; walk in it.”

The New Testament references Christ as the Shepherd and us as the sheep. He says in John that “My sheep listen to my voice; I know them, and they follow me.”

But how many times do we drown out the voice of the Shepherd with our worry, our pride, our desire to control the situation, our false illusion that we know better,

When all it takes is listening for that voice of God. A voice that is ready and willing to guide us down a beautiful path that He has designed for us.

So as we take some big steps down our dark path this week I pray that I am able to drown out my fear and replace it with faith in the guidance of God. Faith over fear.

And I hope next week’s entry is full of good surgery reports!

Much love,

Leah

 

He Must Become Greater

Updates time! Every time I get ready to type a blog update I have to look back at the calendar to jog my memory about what we accomplished this week. We work on a day-to-day basis and once it gets checked off the list I tend to push it out of my brain to make room for more important things. But we managed to cram in a lot of activity over the last seven days.

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Malachi absolutely loved going to Vacation Bible School this week. We made sure to call it “VBS” instead of it’s formal name- we forgot a few times and his face lit up thinking he was going to get to go to school.

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Often when people look at Malachi they see him as a fragile little boy and don’t want to try too much with him. We always explain to people that he is very much a five year old boy who loves to talk about bodily functions (poop, farts, etc) and loves rough play. When water day at VBS rolled around I told them to soak him! They looked at me like I was joking, and I explained that we had prepped for the water and everything he was wearing and riding on could get wet. They sent me this video:

He made it 4 nights without having a single seizure at VBS and had just a short minute long one on the final day. At home he is only having about 2 a day which we are pleased with. He will go to the neurosurgeon next week and we will talk about these new seizure changes/types with him.

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We started summer therapies with both boys this week which kept us on the road Monday and Tuesday. Malachi had his first swim therapy lesson and he wasn’t so sure what to think. The whole concept seemed to confuse him but we think he will do better next week now that he has a frame of reference. Then immediately after Malachi’s water session, Levi had his first physical therapy session.

So far it seems that he is progressing at a decent pace. He isn’t too far off the mark as far as milestones go for his corrected age. This week he will hit 7 months old!

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We had a very frustrating appointment day this week that had me pretty riled up. A few weeks ago we met with Levi’s pulmonologist in Chattanooga for the first time since the NICU consult. That appointment went well- so well that he asked that I come back on one of his days off so we could talk about the different things the Cincinnati team had tried on Levi. He was so curious to learn about what worked and what didn’t for future patients. He said in exchange for me taking the time to walk him through the photos and videos he would type out a solid Complex Care Plan. A CCP would travel with us and anytime Levi unexpectedly ends up in the hospital it would be a step-by-step plan for his providers to follow as far as oxygen. It would prevent us from having to fight against intubation.

So Friday was the day of that appointment. Jake and I woke up bright and early at 6:45 and packed up the boys and headed to Chattanooga, a 1 hour drive from our home. As we drove I explained to Jake that this appointment shouldn’t take long and we could make a date of it! There were some “Escape” rooms close by that were willing to let Jake and I take the boys in as an anniversary date.

We got there early, as we usually try to do to make sure we are being respectful. We checked in and we waited. And waited. And waited. After an hour of sitting in the waiting room I stopped by the front desk to make sure we hadn’t been forgotten. She said that the doctor was running behind, which sounded odd since this was supposed to be his day off. When we scheduled it a few weeks ago they chose this day because he was off and “wanted to be able to devote a solid hour to talking with us. ”

After 30 more minutes of waiting the receptionist offered to have one of the other providers see us, since the one we were scheduled with was so far behind. I explained to her that the only reason we were here was at the request of that doctor and he had asked us to come in. This is when I started to get beyond frustrated. We were taken back to a room where the nurse explained that there were still two other patients ahead of us to see the doc.

I went back out to the front desk to ask if we did see the other provider if he would be able to give us the Complex Care Plan that the original doctor had typed out for Levi emergencies. While I was talking to the receptionist I noticed the doctor that we were so patiently waiting on was sitting in the back room behind the desk. Not seeing the two patients ahead of us. Just sitting.

I took a deep breath and tried to make up excuses for him in my head as the receptionist went back there to ask him about the Complex Care Plan. My imaginary excuses were WAY better than his real ones as he came to the front desk to apologize for running behind. He explained that he was a little mentally slow as he had just gotten back from his vacation in Europe and was jet lagged. He said that it would be fine for us to meet with his co-worker, to which I replied that the ONLY REASON WE WERE THERE was because he asked us to come in and meet with HIM on his day off when he would have time to talk to us?! He said that he decided since he was scheduled for us that he would go ahead and fill his schedule with other patients for the day.

Then the kicker comment came: “Well I have an appointment at noon anyway that I have to be at so I won’t be able to meet with you today.”

It was 11:45. We had been there since 9:30. I asked if we could at least get his complex care plan, to which he replied he had not done one.

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I don’t quite know how to explain my emotions; Levi’s face in the above picture is a pretty good summary. It wasn’t so much anger, but just a feeling of being so disrespected and not being able to do anything about it. As a special needs family, we have to get up hours before a typical family for an appointment like this. We have to pack oxygen tanks, feeding pumps, food bags, emergency kits, wheelchairs, bottles, medicines, and so much more in preparation for a day like this. I literally have to make checklists of things to make sure to pack for every possible scenario and the prep for an appointment day takes hours.

I asked the receptionist if we could be seen by the other provider and he came in within a few minutes. We started allll over with this man, explaining Levi’s Cincinnati history with him and trying to come up with a plan for him. This doc said he was willing to type up a Complex Care Plan for Levi and would be happy to take over his care as we explained we are DONE with the other guy.

Side note- the original doc was also the one who said he would contact Cincinnati for us while we were in the Chattanooga NICU…and he never did. Doc #2 is the one who actually followed through for us and helped facilitate the transfer to Cincinnati. We have a lot of respect for him and are happy that he is willing to take Levi’s case from Doc #1.

Okay, so why the long ranting and raving story? Frankly I just wanted to vent. To tell you the truth, there is usually always a story like this in each blog entry- but I usually end up deleting them as I see they did not serve a purpose. But I also know there are several medical friends that follow the blog and I want you to see a perspective from a special needs family in a situation like this. Unfortunately, appointment days like this are far too common. We have been forgotten in waiting rooms before, spent 4+ hours waiting to see doctors, and just been treated with so much disrespect. Yes, emergencies happen, and we have been the cause of others missing their scheduled doctor times due to our boy’s emergencies. But please understand how much time and effort goes into being on time to these appointments and if you only knew the sacrifices we have to make just to get there. A little empathy goes a long way in SN land.

By the time we left neither Jake or I felt like heading to our “Escape” room adventure so we changed plans and went out for an anniversary lunch instead. We don’t buy each other gifts, and in place try to make a memory. We hadn’t been to a “Fancy Restaurant” in years and thought we might be able to pull it off at lunchtime with the boys.

We went to an old favorite, J. Alexanders and as soon as we walked in (picture a wrecking ball of medical gear walking into a china shop) I felt out of place and embarrassed. I look at my drool stained top from snuggling Malachi, trying to keep him happy as we waited. And I just felt so unworthy of being in such a nice setting. Our lives are practical. Our lives are comfortable, in a chicken casserole southern way. Our lives are survival and combat gear. Our lives are unpredictable seizures. And our lives are filled with poop. Lots and lots of poop.

They led us to a table, and as they always do, everyone stared as we walked. I could feel my face turning red and I had to take a deep breath and remind myself that YES…we did in fact belong here. Jake and I are celebrating 10 years of a beautiful marriage. Our lives may not be comfortable and neat like the people eating at the tables around us, but we deserve to celebrate!

And it was delicious.

Our anniversary was actually on Thursday, but since we had a packed schedule we chose to celebrate on Friday when we would be in Chattanooga anyway. But we also felt like we couldn’t just ignore the day completely on Thursday so we went to a local arcade and spent an hour and $20 competing, Jake and Leah style. If you know us you are probably smiling right now. We are a very competitive couple and always have been. But it is all in good fun and we really had a blast. I think we are going to make that a new tradition for anniversaries. Can you imagine us as 80 year olds ski-balling it up?! We also went to a local restaurant Thursday night after the arcade and ate desserts for dinner.

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And for all you Rumpke the bear followers out there, he has not been back! He must have caught wind of our plan. We still assume he is coming every night and have the shotgun out and ready to go in case he returns. He hasn’t been by our house but has been over at the neighbors based on some prints he is leaving- some even on the side of their actual house next to the windows. YIKES!

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One of the things that I love the most about summer time is the amount of time Jake and I get to spend together. We have yet to run out of things to talk about, but one of the things I cherish the most is our conversations about God. I am so blessed to be married to someone that loves the Lord as much as I do. We talk about really deep things, and then sometimes we talk about useless things like what country Guinea Pigs are originally from (let me save you the time on Google and tell you that they were originally a food source in Peru and Bolivia…nasty huh).

But one of the more common things we talk about is the charge we have been given in raising these two boys.

This week I was reminded of a simple verse in John 3 and I read it with new eyes:

“He must become greater; I must become less.”

In it’s original context, this was spoken by John the Baptist in reference to Jesus. But I want to rewind a bit and take you back to before John the Baptist was even born.

In Luke 1 we read about Zecheriah and Elizabeth, two people that earned the adjective “righteous”. It also mentions that Elizabeth was unable to have children. One day while Zecheriah was in the temple he was visited by an angel. The Bible says:

13 But the angel said to him: “Do not be afraid,Zechariah; your prayer has been heard. Your wife Elizabeth will bear you a son, and you are to call him John. 14 He will be a joy and delight to you, and many will rejoice because of his birth, 15 for he will be great in the sight of the Lord. He is never to take wine or other fermented drink,and he will be filled with the Holy Spirit even before he is born. 16 He will bring back many of the people of Israel to the Lord their God. 17 And he will go on before the Lord, in the spirit and power of Elijah, to turn the hearts of the parents to their children and the disobedient to the wisdom of the righteous—to make ready a people prepared for the Lord.”

I remember reading these scriptures when I was pregnant with Levi and praying these over him. I prayed that he would be a joy and a delight to us and that people woudl rejoice because of his birth. I prayed that he would be great in the sight of the Lord. I prayed that God would choose to fill him with the Holy Spirit even before he was born. I prayed that he would bring people to God with the spirit and power of Elijah. And that he would prepare people’s hearts for the Lord.

So fast forward to that scripture this week: “He must become greater; I must become less.” I thought about the fact that, like John the Baptist, God has prepared each of us for specific tasks. Some of us find those tasks early in life. Some later. In John’s case, he knew that he had reached his task of preparing the way for the Lord, and stated “He must become greater; I must become less.”

I look back at our relationship and see all the ways that God prepared us for the task of raising Malachi and Levi. And as we dive into this new life as parents I find myself saying “He must become greater; WE must become less.” God’s presence in our family must grow greater, and our selfish tendencies must become less. As I thought more about these words from John I couldn’t help but see the beauty and contentment in them. He understood that he had been created for that moment…that task. And it brought him joy to do it.

I pray that God’s presence in our family only continues to grow greater, larger, and more enveloping. I pray that Jake and I are able to remove the selfish moments from our lives when we forget that this task we have been given is one that is so rich with beauty. What a gift we have been given to have two daily reminders that refocuses us and our priorities in life.

Please pray for safety this week as I take Malachi back to Vanderbilt to see the orthopedic surgeon. There have been so many negative changes in Malachi’s spine, feet, hips, and legs and I am afraid we are going to have some pretty intense conversations about the next steps. Next week we will be taking Levi back to Cincinnati so we will be covering lots of highway over the next two weeks. We also have a host of other appointments sprinkled in throughout the week to try to get through. Pray for health and strength for all four of us so we can be at our best.

Much love,

Leah

 

 

 

The Bear Necessities

As I type this update I am sitting next to the window in our bedroom. Tonight it “THE” night. If you have been following the blog the last few weeks you will know that we have a bear living close to the house. While we love that we live in a remote area with bears living close by, this particular one has been visiting the house almost every night for a few weeks. We have stopped putting trash in the cans but each night he comes up to check them anyway. We have moved the cans, tied them to the trailer, you name it, but still he comes and finds them.

He is just a little too close for comfort and simply eliminating his snacks (aka trash) has not deterred him from our front porch. The spot that he hangs out is out of sight from our door and we are very uncomfortable when we have to carry the boys in and out of the cars.

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Tonight we are transitioning to Plan B. We have put the shot gun and some bird shot by the back door and rigged the cans to make some noise when he messes with them. I put some old stinky egg salad into one of the cans to make sure to motivate him with the goal being to fire several shots into the air when he is messing with the cans. We are hoping he will attach fear with the trash cans and stop coming around. Let me make sure you all hear me say, we are not physically harming the bear! Just trying to spook it a bit.

We also put out some trail cameras so we could get some pictures of him tonight and then verify if he is coming back the rest of the week.

The thought of waking up from a dead sleep and having to grab, load, and fire a shotgun makes both Jake and I nervous (in a healthy fear kind of way) so we did some practice runs this afternoon while Malachi was at Vacation Bible School. We thought the loud noises might scare him too much.

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We will let you know how Plan B goes! I have a suspicion we may have a funny story for you next week.

I was talking to some friends this afternoon who follow the blog and they were laughing at all the crazy scenarios we find ourselves in. I feel like our life is so outlandish that it sounds like we are making things up…but be assured…all this nonsense legitimately happens to our little family. You can’t make this stuff up!

Okay now on to more updates.

Summertime sure is something special. I feel like a whole new woman this week as Jake has been able to consistently help daytime and nighttime with the boys. Sleep can be a magical thing!

While I am feeling rejuvenated with my 6-7 hours of sleep a night, it is taking its toll on Jake who was used to getting 8+ during the school year. Sleep deprivation can make you do some pretty silly things, and Jake’s week has been full of them. We are taking turns napping during the day and I feel like I am getting spoiled rotten with all this sleep. And highly amused by Jake’s antics.

We had some pretty bad storms this week which proved to be a bit of a reality check with the boys. The power went out late one night and we realized that we aren’t really set up for long term power outages with the boys. Levi’s oxygen concentrator turned off, alarming loudly so we were able to switch him over to some of the large oxygen tanks we keep on hand. His pulse oximeter machine and feeding pump had enough of a charge to stay running through the night so he was good to go.

We keep Malachi on a video monitor at night so we can hear and see when he has seizures and get to him quickly. The one we use has been on since the night we brought him home and the battery is no longer charging, so Jake slept on the floor of his room that night. All that to say, we can function for short periods of time without power but it really made us nervous thinking about a multi-day outage. Looks like it may be time for us to consider looking into generators.

This was our last week before summer therapies and appointments begin so we crammed in as much fun as possible for Malachi. On Monday he went to a friend’s house for a play date which was a much needed mommy session for me. We met these particular friends at one of his neurosurgery appointments and one of the twin boys has a shunt like Malachi. It is always refreshing to be around people who live the same type of life as you and have some of the same worries and fears.

Malachi also went for his first swim of the summer! If you are new to the blog, swimming is one of his all time favorite things to do. He wears a therapy neck ring and can swim independently- he is actually a really good swimmer and loves that he can do something without support from mommy and daddy.

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We have been working hard since we got home from Cincinnati to get some much needed things for Malachi through insurance. A little glimpse into the special needs world- for nearly all of his equipment (wheelchair, bath chair, activity chair, etc) he can only get a replacement every 3-4 years. So whatever you get requires lots of thought and research because you will be stuck with it for a long time!

Malachi has outgrown his bath chair so that was the first thing I attempted to get. His primary insurance said that it was a “comfort item” and refused to cover it since it is not medically necessary. Luckily his secondary insurance that he gets due to his disabilities picked up the bill. They usually cost $1,500-$2,000 so we are very thankful. It has been ordered and should be here next month.

The second thing we sought after was a special needs car seat. The one he uses now still works decently but his positioning in it is terrible. We always have to be on guard for things that will make his skeletal system, and mainly his spine, worse. Since we have to have the car seat for 3-4 years we did some major research and went for the fancy one. This one has a swivel base that allows it to turn to the door to load him in and out of it, saving some major twisting for him, and major back stress for me. It has speakers in the headrest (totally unnecessary but pretty awesome). Shockingly, his primary insurance approved it and the seat came in this week!

It does not have a 5 point harness so it functions more like a booster seat, requiring the seat belt in addition to the positioning straps. But my goodness what a difference it makes with how he sits. He is nearly at 90 degrees and his head is aligned at midline. It also has a tray that we can strap toys to for long rides. The swivel base did not come in yet but is on its way.

 

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As you can see, Malachi also got a much needed haircut this week!

The other victories with insurance this week is that they are now covering diapers for him. Praise the Lord! In addition to the diapers, we have also been able to justify them covering a high calorie nutritional drink that we give him once a day. These two victories will save Jake and I over $300 per month!

It makes me a little sad and a lot angry how difficult it is to get special needs children the things that they truly need. The mark up on items is astronomical and there is no way that we could even remotely come close to taking care of his needs without insurance. But even then, it takes hours upon hours on the phone and that can be a real challenge. And after all that work, insurance still denies quickly requiring several appeals.

But looking at the bright side, there are other people in this world that have gone through the red tape before us and have come up with tangible ways to help. There are so many grants available for special needs families, and while the application process can be intense it is definitely worth it in the long run. Many of the things we have for Malachi were denied by both insurance carriers and deemed not medically necessary but we were able to find grants willing to help us get it for him.

Malachi is getting to go to Vacation Bible School this week at church and really enjoyed the kick off this evening! He was still wild eyed with excitement when I went to pick him up.

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And an answer to prayer- Malachi’s seizures have lessened significantly this week, only having 1-2 a day. We are so thankful!

We are still battling jealousy a bit. He makes his “no face” when Jake talks to Levi, or gives Levi kisses. He is also finding ways to act out. When I got him out of his bath chair this week to carry over to the changing table I told him “Don’t pee on momma.” He immediately clenched down and sprayed pee at least 3 feet across the bathroom and then laughed hysterically. Very intentional, no doubt about it! He also bit Jake this week VERY hard leaving a nasty bruise.

Now on to Levi updates. He has changed in some big ways this week too. The biggest change is he has stopped vomiting. We have no idea why but we won’t complain. We also successfully made it out in public several times without him shooting fecal matter onto our clothing! Go Levi!

He continues to be quite the personality and he makes us smile with all his silly looks.

He loves to play with his toys. And he never stops moving. It is almost unbelievable how much this child moves.

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He is also discovering his voice, which is such a beautiful sound. I can’t get enough of it! I took a video this week so you could hear him:

I explained it on Facebook this week like this:

For his condition (bilateral vocal cord paralysis) you have to think about his voice quality and breathing ability as a combined 100%. In order to breathe at 80%, your voice quality is only at 20%. If we could get his vocal cords open enough for him to breathe at 100% without oxygen, he would not have a voice. So we are always searching for the best middle ground for both to function “just enough”. But we are very pleased with the combination that we are working with now!

This coming week things will transition back to craziness. Malachi and Levi will start their summertime therapy sessions and appointments. Next week we will have to go to Vanderbilt, and Cincinnati the week after that, amidst LOTS of other appointments. We also start summertime practices with our soccer team. If we can make it through June unscathed, July is looking like a breeze in comparison.

A friend gave me a very special and encouraging gift this week that I wanted to share with you all. It is such a good reminder that even though our arrows are crooked and one of a kind, there is beauty in that. What a blessing my crooked arrows have turned out to be. And boy, do they pierce the hearts of everyone they come into contact with.

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Jake and I are best friends. I am not being mushy and dramatic when I say that, but 100% sincere. When we met back in 2003 there was a fun connection between us and we both felt at ease being ourselves around each other.

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We quickly became friends, and that friendship blossomed into a dating relationship. We dated for 5 long years before we married, waiting until I had graduated college and got a job/had a steady means of financial support.

The stories from those 5 years of dating would have you laughing for hours. Our youth group loves to hear about all the silly and crazy things we got ourselves into!

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But even during those early years it was glaringly obvious and undeniable that God had brought us together. He intertwined our hearts in a very special way and God’s hand has been on us from day one.

This week we celebrate 10 years of marriage. As I look at the journey that God has brought us on with our children, I am increasingly thankful that He chose Jake for me to fight these battles alongside.

The Bible says in Proverbs: “Iron sharpeneth iron; so a man sharpeneth the countenance of his friend.”

Some days are tough. But it seems that in those particular days God makes certain that one of us stays strong to sharpen the other. I am so thankful that God prepared our hearts for one another.

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This week Jake and I have been talking about the beautiful life we live with our boys. We are so incredibly blessed- and we aren’t just saying that because it sounds like a good Christian thing to say. There is so much beauty in our lives and we feel so honored that God chose us for this task.

Who knew that those baby faced high school kids would have such a intricate path laid out ahead of them. Well, God knew. And He has ordered our steps from that very first moment our hearts connected.

Well, I think the bear is pulling a “tooth fairy” scheme and waiting for me to fall asleep before coming by for a visit. I better head to bed and get some sleep before our adventures begin.

Thank you for continually praying for my arrows. We get so weary, particularly in my prayer time. Knowing we have an army of prayer warriors standing in the gap lightens my load.

God bless,

Leah

Welcome To The Jungle

Have you ever been in a situation and the perfect song comes to mind that suits the moment perfectly? Over the last few weeks we have had a lot of these pop into our heads. For example, when we are at the house and someone comes over I can’t help but hum “Welcome To The Jungle”. Or when we go out in public with both boys and all their gear in our heads we hear “They came in like a wrecking ball…”

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While we are slowly mastering the art of managing both boys and their extensive needs in public, it is definitely still a challenge. But we are the Carrolls and apparently love a good challenge, as life has worked hard to show us, so we are trying to not let it interrupt our lives. Jake’s last day of school was this week and to celebrate we went to the local Mexican restaurant.

Let me side note here and tell you that these last two weeks I have reached a level of exhaustion that I have never known existed. For the last five years I have had to function on very little sleep, but adding in the mental work required to take care of both of these boys is wearing me out.

On this particular day I was feeling that exhaustion and actually contemplated sleeping in the car for the 6 minute drive to the restaurant. We tromped in, turning heads as we always do, and settled into a booth. I was secretly doing a happy dance inside as Jake sat down next to Levi- he is the more high maintenance one these days.

Before we even ordered Malachi set off into a 3 minute seizure which results in him filling his diaper. When these seizures hit we do our best to preserve his dignity as much as possible and hide the fact that he is seizing. We cover his eyes and try to keep him from clawing his face in the process. We got him through that one and shortly after we ordered he went straight into another 2 minute one. Jake and I contemplated leaving, but had already ordered food so we stayed. Malachi LOVES going out and we didn’t want him to feel like he was being punished for his brain’s choices.

Then it was Levi’s turn. Little Levi started screaming uncontrollably. We tried rocking him in his car seat, distracting with toys, and nothing was working. We were feeling the burning eyes of the other customers so Jake decided to get him out of the car seat and try holding him. While he calmed down a bit he was still pretty fussy so Jake bounced him in his hands until our food arrived.

As Jake was putting him back into the car seat I spotted it…Levi had apparently filled his diaper and all that “bouncing” had “relocated” it alllllll over Jake. Jake didn’t know this yet and grabbed his silverware like nothing had happened. We still had eyes on us since our child was losing his mind, so I mouthed to Jake to look at his shirt. He said “hand me the diaper bag so I can get the wipes” and as I went to grab it I realized that it had been left at home.

Yup. Here we were, trying our hardest to enjoy a normal night out and pretend to be a typical family. And in the course of 15 minutes, 3 out of the 4 of us smelled like poop. One boy was still screaming uncontrollably, the other was laughing at his maniac brother. And Jake was still just covered with poop. And then there was me- waving the white flag and asking for our check. We surrender! So we snuck out the door as sneakily as a poop covered dad, five year old in a wheelchair, screaming baby covered in poo with oxygen and a feeding pump, and a mom who hadn’t showered or slept for three days could possibly sneak.

These are the moments we have to choose to laugh at. I told Jake we were going to try a re-do dinner another night, and I am happy to report that the other attempt went wonderfully.

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Speaking of chaos, our bear friend has been back four of the last six nights. We have officially named him Rumpke, as he loves to take our trash bags back to his den. We found his path and it goes right under my bedroom window so I opened the blinds, ready to catch him in the act. I laid down and within 30 minutes I heard a boom. I jumped up and ran to the window and there he was about 8 feet from me. We had walls and windows between us but seeing him that close and that huge made my blood run cold. I watched him open the trashcan and choose a bag and head back towards the tree line.

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Jake sleeps in the guest bedroom (more on that later) so I ran over and woke him up and we took a spotlight out onto the back porch to see if we could spot him. By that time he was already out of sight but we could hear him thoroughly enjoying our trash. When the light got near him he scrambled up a tree and we couldn’t see him.

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His front paws are a little smaller than my hand. But his back paws are much larger!

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I told Jake to go upright the trash cans so I could hear him if he came back and after some major convincing he darted out and flipped them back up for me. At that point I was officially wide awake and knew he would be back so I sat by the window and waited. Malachi ended up waking up so I went and got him out of bed and we sat and waited together with Levi sleeping soundly behind us. Sure enough here comes Rumpke the bear, wandering up to the house. He got about 10 feet from the window so I thought I would try to scare him off and hit the window hard and loud with my fist. Instead of scurrying off he just turned and stared right at me.

Talk about FREAKY. So there I sat, staring face to face with the bear. I hit the window again and he took one step back but still wasn’t convinced to run. In a last ditch effort I hit the window hard several times in a row and he ran about 10 steps away and laid down flat. I think he thought he was hidden but he is dark as night so I could still see right where he was at.

At this point Malachi was crying, as he didn’t understand why I was beating the window and he totally feeds off of my emotions. I am confidence he sensed I was nervous. I ran across the hall and got Jake back up and we ran out on the back deck (don’t stress- it is 12 feet in the air and has no stairs- yes, we know bears can climb but I knew right where this one was “hiding”) and we shined the light right on him. He panicked and headed for the tree line and crouched down in three feet of grass. We could still see him clearly and kept the light on him, not quite sure what to do next. Then he stood up on his hind legs and stared at us. We stared back at him, neither of us quite knowing what to do next. He is about the height of Jake and seeing an animal that size is just crazy. After our 30 second stare off he ran into the woods and disappeared.

Our next plan is to set off the car alarm when he gets next to it, but I haven’t been able to catch him in the act since that night. Plan B will be a bird shot in the shotgun (in the air, not at him) and if that doesn’t work we will have to go to Plan C and have the local wildlife professionals trap him and release him in the mountains.

Malachi had his last day of school and his sweet teachers cried as I drove away. We were truly blessed to have such caring people for his first year at school. They gladly accepted the challenge of learning Malachi and I confidently believe that they love my son. They asked about meeting up with him this summer and possibly babysitting for us. Jake and I are coming up on our 10 year anniversary next week and we may just attempt a seizure free/poop free/screaming free dinner out. Maybe.

I have been trying to help Malachi understand the concept of summertime and how school is out for a few months. I am hoping having Jake home will help take his mind off of things.

Levi’s personality is changing daily it seems. He is hilarious. His stridor is still there but it is quieter than before. When he is awake he is holding strong with his oxygen saturation but when he is asleep he definitely still needs the support. He has torn his cannula off several nights this week and I can tell by his dip in his oxygen sats. He only dips down to 90-93 but that is still too low for my comfort.

 

He seriously never stops moving. I never knew babies could be so active! In this video Levi shows you how insanely flexible he is. He loves to put his feet in his mouth:

 

This week we held the soccer banquet for the high school boys. I sat with the kids while Jake presented awards and every time the audience would clap Levi would get scared and start crying. Malachi on the other hand would laugh hysterically. Every thirty seconds they would clap for another player that was recognized and the cycle would continue all over again. By the end he seemed to understand the concept a bit more but the learning process was definitely a journey haha.

Malachi is continuing to have some pretty nasty seizures throughout the day, but otherwise has had a pretty great week. Last night he slept in his bed for 7 hours straight! That is HUGE! We had friends from high school stay with us this weekend and the activity in the house must have just plum worn him out. We took them to the river where Malachi got to dip his toes into the very cold water. He also got to go to the playground and swing with daddy.

Today is a pretty special day as it marks the anniversary of the day we brought Malachi home from the hospital after 112 days! What a whirlwind of emotions that day proved to be.

I can’t believe how much he has changed over the last two years! Look at these pictures from two years ago:

 

And then here are some from this week:

 

And yes, he got to ride the horse while on his belly this week! And he absolutely loved it. And yes, he is still wearing those same clothes from two years ago haha.

Now that Jake is finished with school for the summer we are officially both back in the same bedroom at night! Being a special needs parent statistically increases the divorce rate (some sources say it is as high as 80%). Jake and I are very aware of this statistic and we are trying to guard our marriage from any unwanted attacks.

To be honest, I can absolutely see how having a child like Malachi can devastate a marriage. Our life is physically, emotionally, financially, and mentally exhausting. We are both the heaviest we have ever been, the most exhausted we have ever been, the most depleted we have ever been and we have no time or energy to remedy these things. But we know that the devil can sniff out weakness easily and uses it to step into our lives so we are guarded.

But even having him back in the bed seems like a huge victory. Yes, he still snores and yes, he somehow managed to steal a king sized comforter from me that first night but it is worth it! Friday night was the first night in the same bed since the night before Levi was born in November…process that…so crazy!

These last few weeks have been challenging for our county. The education system suffered some major cuts and the county had to eliminate 17 teachers in 5 schools. As the days went by we heard more details about where the cuts would happen and 3 of them were going to be from Jake’s school. Then we got word that 1 of those cuts would likely be a math teacher.

As we waited for the cuts to happen Jake and I talked about the possibility of him losing his job- and more importantly for our family, his insurance. Our initial reaction was panic and fear. We have watched our plans unravel over the last few years, but have always had a stable income and insurance source.

But then we started to really process the things that God has carried us through over the last five years. And when we remembered that His beautiful hand of protection is on our family, we were both covered in peace.

Last week I talked about a verse in Philippians 4 that has become a focal point for our family. This week I want to back up a few verses from that one and point you toward Philippians 4:4-7:

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God,which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

The peace of God is such a special thing. It truly doesn’t make any sense. There are situations and circumstances in our lives that we could spend every waking minute focusing on. If your mind is anything like mind, it always settles on the “worst case scenario” making me a bundle of nerves.

But like this verse says, it is the peace of God that guards our hearts and minds. It overwhelms you when it hits you in a wonderful way.

So this week we are thankful for God and his beautiful gift of peace.

Jake was not let go this week. But if he had been, I am confident that God would have already mapped out a different path for us and gladly guided us down it. A relationship with God is such a comforting thing and I am so thankful for His hand in our lives.

May God overwhelm you with His peace this week in whatever unknown you may be facing.

Much love,

Leah

 

Bears, Barnwood, and Boats

Our little family had a week packed full of adventure!

 

Yes- therapies, doctor’s appointments, and chaos all took place this week but there are no noteworthy updates there. Malachi’s seizures are still changing significantly and have started to last 2-4 minutes each. Because of this change we are watching him closely, as seizure changes can indicate a shunt malfunction. He had a few at school this week so I am making sure to stay within a close driving distance so I can be there quickly in case of emergency.

Here is a video of silly Malachi playing with a whoopie cushion; at the end you get a glimpse of some of his sign language as he signs with his right arm for “more”:

Levi is still doing amazingly well with no new issues or changes. He is growing like a champ and looking so healthy. The biggest change we have noticed this week is his long legs.

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He really enjoyed watching Malachi at his horseback therapy this week.

 

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So instead I will fill this entry with some stories from our week.

Let’s start out with the most recent one: we had a visit from a bear! On the weekends we each pick a kid for the night. Jake inevitably picks Malachi as he is the predictable one, waking up at 3:30 each morning for a few hours. Levi is the wildcard and you never know what the night will hold with him. Jake and Malachi ended up in the guest bedroom and Levi and I settled into the master.

We have sound machines in every room, but over the white noise I could hear something loud. I thought maybe it was my imagination so I got up to turn off the sound machine and drifted back off to sleep. Throughout the next several hours I kept getting jolted awake by new noises but I was just so tired I didn’t really care enough to investigate.

This morning we reconvened back into the living room and I told Jake that either there was a serial killer living in our basement or there was an animal outside all night. He went to check the basement and I went to check the porch where I discovered muddy bear prints all over. It had gone after our trash, wheeling the can successfully about 50 feet from the house before it tipped onto its side, which would have been hilarious to witness! He then tried to open the can by clawing and biting it but was unsuccessful. He went back up to the house, flipped open the lid to the second can and strategically took all four trash bags inside. Literally took them- they were nowhere to be found this morning. No sign of trash anywhere!

In this picture you can see the round paw prints on the concrete.

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After church it only took us a half a second to find his path into the woods- he must have been an extremely big bear and mashed all the vegetation in his 3 foot wide path. Jake went back there a ways and found one of the bags but didn’t want to venture too much further in search of the others for fear the bear was still close by.

We live in a rural area that doesn’t have trash pick up so each weekend Jake has to haul it to the local dump. Yesterday he didn’t get the chance to so his plan was to take it on Monday. Oops.

Malachi thought is was absolutely hilarious when I told him that a bear snuck off with all of his poopy diapers.

The boys also had a play date yesterday with the kids of one of our friends from college! There is a wonderful handicap accessible park a short drive from us and Malachi loved playing on it with daddy. He still hates the sun with a passion but this playground has built in sun shades over it so it wasn’t so bad.

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Levi is getting more curious and is starting to see that being held means he gets to see more things. This week he has wanted to be carried all around the house, exploring as he goes. And while he is still definitely a momma’s boy, he is starting to tolerate his crazy dad a bit more.

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But we aren’t too fond of brother’s swing:

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On Monday Malachi had a pretty large seizure at school so I went ahead and picked him up early to evaluate if he should go to his horse therapy session. When Tuesday rolled around I decided it was best to keep both boys with me all day, as we were signed up to help chaperone Jake’s field trip to the river. And what an adventure that turned out to be!

For the end of the year project in his Algebra 2 classes, Jake had the students work in groups of 4 and design a boat. They had to use mathematical principles to determine the buoyancy force and see how large it would need to be to hold the weight of two people from the group. There was lots of math involved in the project but I won’t bore you with all that info.

The final step was that they had to actually build the boat using cardboard and duct tape…and then float it down the river. Yes, you heard that right! There were lots of rules, one of which was that they could only put duct tape on the seams where two pieces of cardboard came together. We were all cautiously expecting the project to be a bust and none of the boats to float but we were shocked when 7 of the 11 floated at least 100 yards, some going as far as 1,600 yards! We had so much fun watching the students trial their creations.

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The day was a huge success and Jake plans to do this project for each of his Algebra 2 classes in the future. We dubbed it “The Redneck Regatta”.

After the Redneck Regatta we went for a quick stop at the local Mennonite community to buy some fresh bread and fruit.

After spending so many months in the hospital, my soul has been absolutely refreshed getting to spend these last few months back in our community. There is so much beauty and simplicity in our life, and I love every aspect of it. Bears and all haha.

Just to recap, Jake and I moved into our new Malachi inspired accessible home in October. And then Levi came in November! I had not even had the chance to unpack all of our boxes and get settled into the new house before I disappeared to Cincinnati for 4.5 months.

My original plan was to work on unpacking and tackling miscellaneous projects during those first few weeks after Levi’s “typical” birth. When that didn’t pan out like expected I was so disappointed. Now that we are home and finding routines I have been able to carve out some time to complete some of those projects.

This one has been in my mind for quite some time, and yesterday we finally finished it.

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It turned out beautifully and way more massive than the picture in my mind. It is 9 feet from the top board to the bottom board and over 10 feet wide! But I absolutely love it for so many reasons.

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I posted a photo of it on Facebook today with these words:

When Jake and I were given the opportunity to build a house we spent a lot of time in prayer over our decisions. One thing we both felt strongly about was saturating it with scripture- we want the presence of God to surround our family, and having His words visible refocuses (and sometimes convicts) us each day. We chose a scripture for every room and buried it in the foundation beneath each one, and when the house was finished we decorated the walls with God’s word.

But THIS VERSE is one we rely on each and every day of our lives. There is a lot of ugly in our lives. A lot of sadness, a lot of disappointment, a lot of suffering. But there is also SO much beauty. And by the grace of God, that beauty seems to always outshine the bad when we choose to focus on it.

Boasting can be a slippery slope, so it is one we try hard to avoid. But we will never stop telling you about the praiseworthy and excellent things God continues to do in our family. To Him be the glory.

Our mind is a battlefield and the devil knows how to navigate it well. The Bible tells us to carry the “sword of the spirit” which is the word of God. These are more than just words- they bring strength, courage, and confidence as we fight our battles.

My prayer is that both of my boys grow up hearing and seeing such life giving words and start to hide them in their hearts. What you hide in your heart will impact your thoughts more than you ever realize.

Looking for a good place to start? Check out Philippians 4 where this verse came from! 

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Yes, it is obnoxiously large but that is exactly the daily reminder I need to focus on the good parts of our life. I hope that this verse takes on a meaning that is unique to you and your situation this week. That is one of the things I love about scripture…the same words can bring so much hope and encouragement to so many different situations.

So nothing too earth shattering in this blog update, but I see that as such a blessing!

One final side note- our porch plan has been working out well for rainy days. We tried it out for the first time this week during a crazy rain storm and it worked perfectly at keeping the boys dry. It is so much fun to see our design visions come to life!

Thank you for checking in on our sweet boys. We are trying to enjoy these slower days, as June holds lots of traveling for medical appointments. Please continue to pray for a complete healing for both boys, and particularly that God restores Malachi’s brain and his seizure come to a halt entirely.

Much love,

Leah

 

Motherhood

Look who made the front page this week! The article was so kind and complimentary of the way Jake has carried himself through our difficult few months. Here is an excerpt from the article:

“Throughout these troubling times, the class noted how Carroll would teach his class all week, then travel to Cincinnati to be with his family in a special hospital for Levi until Sunday, when he would return home and begin his week anew. ‘We’d see him coming down the hallway just smiling, you’d never have known that he had anything going on in his life,’ Stewart said. ‘When we found out, we knew where we wanted the money to go.'”

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When I read the article I told Jake that he was going to cry when he read it. He rolled his eyes at me and laughed, saying there was no way a newspaper article would make him cry.

He was wrong. We both teared up as we read it. It was so wonderful to hear that the way Jake carried himself through our challenges was noticed by the teenagers. I hope that like a pebble thrown into the water, these teens will remember that bad times don’t always have to break you…especially when you walk with the Lord.

Oh what an adventure filled week Malachi has had! This video is sure to put a smile on your face:

Malachi’s field trip on Tuesday was a big success; he was so excited when we got there and heard all of his friends and teachers. Just like I promised him, I dropped him off and left to give him a little independence.

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His teachers said he did great and did not have a single seizure the entire field trip. Usually new environments and lots of stimulation can bring those on so this was very surprising.

Side note- his seizures have changed a bit lately. Malachi has intractable epilepsy which means they fail to be controlled. His brain is extremely globally damaged (which means the damage is all over and not in one specific area) so he has several different seizure types. These days instead of throwing his arms outwards during a seizure he is bringing them inward and claws at his face in the process. He isn’t doing it on purpose, but when his brain panics his muscles all start to contract. It is making me a nervous wreck as he is getting dangerously close to his eyes. His grip during these episodes is incredibly strong and even I can’t pry open his fingers when they grasp on to something.

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I couldn’t decide what to do with myself and Levi while we waited, then I remembered that I had a Red Lobster gift card in my wallet! Score! I had a wave of confidence and off to Red Lobster we went. Needless to say the lunch was a nightmare haha. I forget how loud Levi is when he breathes as I have grown used to it. Red Lobster is a quiet place so we stuck out like a sore thumb.

Feeling self conscious, I ordered my food immediately when we sat down so we could get out of there quickly and not disturb anyone else’s meal. And let me just say…it is a good thing I did as the meal continued to spiral out of control. Levi projectile vomited twice, sounding like a choking baby dinosaur each time which only drew more attention. Then he decided to loudly fill his diaper and at that point I realized that we needed to be done.

I think I set the record getting in and out of Red Lobster and consuming a full meal in under 17 minutes. I am pretty confident the restaurant was glad to see us go. Oh well- we tried haha!

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Well it looks like the jealous bug has officially bit Malachi. This week we are seeing some typical behaviors for a five-year-old first time big bro. If Levi is getting some extra attention Malachi will start crying until we show him some attention too. I have been trying my best to dote on both boys equally but it still hurts Malachi’s feelings when I focus on Levi.

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To combat this, I have been trying to give Malachi more responsibilities as big brother, like “watching” Levi when I have to go into another room briefly. Malachi thinks he is pretty big stuff when this happens. Maybe too big for his britches as once again he flung himself out of his seat and onto the floor this week. It nearly gives me a heart attack every time!

I took a few videos for you so you can see their sweet interactions. The first one was when I asked Malachi to show Levi how to play:

And this second video is just too sweet not to share. I let Levi sit on Malachi’s lap and he snuggled right into him. Malachi was so gentle and even brought his arms up to hold Levi:

We also had a little excitement at school this week. I went to pick Malachi up and his teacher told me that a bear walked up to the fenced in playground and started scratching its back on the fence! Just another day in the country.

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I have been tackling my incredibly long to-do list. I have been devoting a few hours each day to making phone calls to insurance, specialists, and other medical related organizations to try to get the best services and care that I can for each boy. I took this screenshot and sent it to Jake when he asked what we had been doing all day. On this particular day, the phone calls continued until 5:30 that afternoon.

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I took Levi for an evaluation with Malachi’s physical therapist so he can start PT this summer. She was pleasantly surprised with how on target he seems to be, which was music to my ears. I also met with Early Intervention Services this week to set up a care plan for him. We have been able to get a really great feeding therapist to take his case and I am so eager to start those sessions and get him eating by mouth.

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Levi is changing by the day! He will be 6 months old tomorrow which is so hard to believe. He has turned into quite the momma’s boy which makes me so happy. He does silly things these days, and smiles a lot. He is starting to want to be held often (by mommy only) and he loves his toys! The toys seem to create the most jealous moments for Malachi so I don’t let him play with Malachi’s favorites unless he is at school. Levi is also putting everything he can into his mouth.

Today is Mother’s Day here in America (we have a lot of international followers). Jake and I are fuddle duds who don’t celebrate many holidays so we aren’t doing anything super special- my gift is a nice long nap as soon as I finish this entry.

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But last night I started processing the term “Motherhood”.

Motherhood has always looked so different for me. The first time I saw both of my boys was on the screen of a digital camera. It was 3 long days before I got to meet Malachi, and while I did get to meet Levi before he was transferred, it was two days before I got to visit him. I will never forget those nights in the hospital for both boys. I laid in bed listening to babies crying and being comforted by their mothers. I heard the voices of visitors gushing over the newborns in the rooms around me. Yet there I was, alone and childless. My plunge into motherhood left me feeling very desperate, alone, and unworthy. Just a shell of a mother with no child to prove that I had in fact given birth.

Motherhood for me means I have to sign countless medical releases to allow doctors to poke, prod, heal, and fix my children, knowing the painful state they will be in after. And I have to be their voice. I have to think through worst case scenarios and research to make educated decisions for their care.

Motherhood for me means that I have not only watched but held down my children as nurses have attempted to get hundreds of IVs, intubations, and blood draws. I have had allow them to inflict pain on my children, pleading desperately with God that in the long run we will see the benefit. This is the hard stuff of motherhood…this is the type of motherhood I don’t wish on anyone else.

Motherhood for me means I have to helplessly watch Malachi be overtaken by seizures that scare him but have to keep myself calm so he senses peace when he comes out of them. It also means I obsessively watch every movement for Levi, terrified that he too will develop epilepsy. Motherhood for me means always being aware of SUDEP (sudden unexpected death in epilepsy) and waking up several times a night to make sure he is still breathing.

Motherhood for me is equated with fighting. It is desperately trying to get others to see the strength and potential in my boys. To see their worth. To share the hope that I have for each of them. Mothers shouldn’t have to fight this hard.

Motherhood for me is a sea of emotions. Every day I fight temptations of depression, grieving, and loss. But I know that giving into those emotions will only hurt my ability to care for my children, so I have to find ways to stuff those emotions out of my thoughts and focus on the good.

Motherhood for me is laying in bed at night thinking about the unknown. The questions marks, the what if’s, the variables that could go wrong at any moment. I think about future surgeries, future hospital stays, future bad news, future emergencies. And while I want to prepare my heart for them, I just don’t think I will ever be able to adequately do so. So I simply have to swallow the lump in my throat and focus on better things.

Motherhood for me means a constant, daily, reliance on God. Because I simply cannot do this alone. The task is just too large for me to do apart from Christ.

Motherhood can take on different shapes and forms for each individual person. Sometimes I get hit with pangs of jealousy, just like my Malachi, as I watch how simple motherhood can be for others. Oh to have only the good and fun parts, and not have to worry about the bad.

But there is a quote that kept coming to mind this week:

“Motherhood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding he is exactly the person he’s supposed to be. And, if you’re lucky, he might be the teacher who turns you into the person you’re supposed to be.”   – The Water Giver

Paul tells us in Philippians:

“I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.”

As I read these words this week I found myself struck by the honesty of his words. It is so easy to find discontentment in our lives. It is so incredibly easy to find things to whine about, things to mourn over…and let me say that there is a time and a place when those moments of mourning are completely necessary and acceptable.

But there is also something so refreshing and healthy about choosing to be content. And relying on Christ to give you the strength to find and cling to that contentment.

Motherhood to me means finding contentment and happiness peeking in through the storms. It means looking past the ugly, the difficult, and the hard and straining my eyes to find the lovely. And to not just find it, but celebrate it.

Whatever motherhood may look like to you, I pray that you are able to find contentment in it. I pray that you are always able to choose joy. And I pray that you are able to see the truth in the words “I can do all things through Christ that gives me strength.” May that nugget of truth drive you during the hard times.

Please continue to pray miracles over my sons. We are continuing to believe that God will heal them both, and what a glorious day that will be!

God bless,

Leah