What a fun and adventurous week we have had! Our days are still very busy, both by necessity and by choice. Malachi loves going places and staying active so I try to make sure each day has some brain stimulation in it.

**Completely random side-note. Last week I realized that I needed to take more pictures of our week for the blog. I may have gone a little picture wild, so please bear with me.**

On Monday Malachi had a very successful hippotherapy session with his horse, Tommy. Jake and I are continually amazed at his ability to control his head so well while riding.

Immediately after his therapy session we headed to the pediatrician for Malachi’s pre-op physical. This is hands down the healthiest that Malachi has ever been before a surgery. In previous visits, I was always anxious about his oxygen saturation, as we never knew what type of breathing day he would have. With his tonsils out I could hold my chin up high knowing he would pull some great numbers on the pulse ox. Overall, things look great for surgery next week. We will be working extra hard this week to keep him healthy.

And this little tubby boy weighed in at nearly 35 pounds!

Tuesday we woke up bright and early for a physical therapy session. During the school year the PT is able to come to our house for the appointment, but now that school has ended she can’t justify a home session. In order to get his therapy we have to take him to their clinic 30 minutes away. Malachi sees these sessions as play dates and loves every minute. The office has a play room with swings and other neat therapy devices that he fully enjoyed.

After his therapy session and some errand running, Malachi and I went on a lunch date! Truthfully, I have only eaten out with Malachi one other time by myself because it is much easier to eat at home or in the car rather than try to get his chair out and about alone. I had seen a Facebook post about the United Way partnering with a local restaurant to help fight child hunger in our area, and I thought it might be fun to support such a good cause. We ran into a college buddy while we were there, and as we talked about the United Way I discovered that they work with Malachi’s neurosurgeon to help families like ours during surgeries and hospital stays. In fact, we have been on the receiving end of their generosity each time Malachi has had a brain surgery, and have received meal vouchers for the cafeteria and even a gas card. What a great organization!

Here is Malachi sporting his red nose to end childhood hunger.

Wednesday was an even busier day as we drove to Chattanooga to fit Malachi for new Ankle-Foot-Orthotics (AFOs). He wears these braces on his legs to keep his ankles and feet from turning out. They are a very expensive shoe at close to $2,000 a pair and he usually needs new ones every 9 months. We managed to use the current ones for over a year, but it was definitely time to get new ones that formed better to his legs. Without a good fit, they can cause blistering and sores. It takes several weeks to make them, as they are completely customized for his legs, but spoiler alert…we went with the same camo print haha. Just couldn’t bring myself to go for anything new.

We left the fitting and went to my sister-in-laws house to try out the pool for the first time this season. And let me tell you, it was the highlight of my week! A few weeks ago I had ordered a special flotation device for Malachi that looks like a horrible torture mechanism. It is a small inner tube float that goes around his neck, with contours for his chin. It is made for children like Malachi and allows them to swim completely unsupported (by mom) in the water, experiencing total freedom for their body. I assumed that Malachi would panic when we first tried it out, and truthfully was skeptical that it would work for him.

I strapped it on and carried him into the water, and the moment I let go that little warrior squealed with joy. He figured out how to dip his head back and get his hair wet, and how to move his arms and splash in the water. HE LOVED IT! The informational pamphlet that came with the float said that most kids can only tolerate 5 minutes for the first try, but Malachi was going strong 25 minutes later, squealing and talking the entire time. I was ecstatic and so proud of him. Needless to say, we will be spending A LOT of time in the pool this summer. I will make it my goal this week to get a video of him swimming to share with you!

Friday was Jake’s first official day off for the summer so we used it wisely and drove to Atlanta to visit my brother for his birthday. He recently had a son, who is one cute and handsome little nugget, and we loved getting to meet him. Malachi was smitten with him and laughed uncontrollably every time he cried. Here is a little snapshot video for you…

Friday was also “Malachi Day”, a made up special day we have to commemorate bringing him home from the NICU in 2013.

Saturday was just as busy, as we met up with Jake’s family for the first half and played in a local river with one of Malachi’s buddies for the afternoon. Everything was great until I spotted a snake headed upstream towards us. Being in the river with Malachi was already out of my comfort zone as he is one heavy little boy. I had him strapped in a baby carrier on my chest, which worked great for our casual entrance into the river. It wasn’t so great as I tried to run quickly out of the river with a 35 pound toddler bouncing all over the place! But it was worth the drama, and seeing Malachi get to do things I never dreamed were possible motivates me to continue trying our best to live life without restrictions as much as possible.

This week I have caught myself noticing older people more than normal. As I see the physical struggles that many of them have to complete simple tasks like walking, I have unknowingly allowed “old age” to be added to my loooong list of worries. I think about Malachi’s needs, and wonder at what age will I no longer be able to physically help him through life. These thoughts knock the breath out of me, and I have to force myself to think about other things for sanity’s sake.

The Bible continually warns us to not be anxious and talks about the effects anxiety can have on our bodies. When I read these verses, I have always been able to see how worry can easily turn into a sin…it keeps our problems out of the hands of God, where they rightly belong. It is safe for me to conclude that nothing good comes from worrying.

But one night this week, a question popped into my mind. “Did Jesus ever worry?” I thought about the scripture that tell us about the night He spent in prayer in the Garden of Gethsemane. How he literally sweat droplets of blood as he prayed. I immediately got out my Bible to explore this thought a little more and read the verse “…he began to be sorrowful and troubled. Then he said to them, ‘My soul is overwhelmed with sorrow to the point of death.’ ” (Matthew 26:37-38)

Now let me stop right there- I am in no way comparing my sorrow to the sorrow Christ had that night, as He knew what was about to take place. But this scripture was so important for me to read, as it helped me understand that sorrow in itself is not a bad thing. It is in our nature to experience feelings of being troubled.

But if you keep reading, you will see what Jesus did with that overwhelming sorrow. “He fell with his face to the ground and prayed.” He took his sorrow to the throne of God. He didn’t let it fester, but instead quickly and readily handed it over the his heavenly Father.

So did Jesus “worry”? My opinion is no, because I see worry as a result of hanging on to a troubled spirit. And yes, I truly see worry as a sin. But to know that his heart was often troubled, just as mine daily is, makes me feel a tad bit better. And seeing his example of immediately releasing that from his soul is a wonderful reminder.

There is a quote from Corrie Ten Boom that I particularly like: “Worry does not empty tomorrow of its sorrow. It empties today of its strength.”

Thank you for taking the time to check in on Malachi. Please keep in mind that I write these entries after I get him to bed on Sunday nights (it is currently 11:30pm) and sometimes my mind loses it’s focus. Literally every time I have posted on here I have re-read it the next day and been appalled by something crazy I said. Odds are I will find something to edit quickly tomorrow, but thank you for your patience!

Please keep Malachi’s procedure at the top of his prayer list this week. He will be having some extensive dental work done under general anesthesia and will be cutting out much of his gum line. We are not looking forward to the pain this will put him in, and seizures are always a huge concern when more pain is added to the mix.

God bless you this week,

Jake, Leah, and Malachi

 

 

This week is always a particularly significant one for our family as we can’t help but flash back to three years ago. My due date was supposed to be May 21st and Malachi arrived very unexpectedly on February 4th. We spent a very long 112 days in the Neonatal Intensive Care Unit and it was May 27th, 2013 that we brought our son home.

I can’t even begin to describe the emotions of that day…there was a mix of excitement, sheer terror, and a feeling of being very incompetent- even though the wonderful NICU staff had prepared us very well for that day. For 112 days Malachi was hooked to monitors that told us exactly what his body was doing, and here we were with a wire free kid, having to rely simply on instincts, common sense, and God.

As you can imagine, we did not take our eyes off of him for a single second throughout the day. I remember the moment that he fell asleep for the first time at our home. I wanted so badly to stare at him until he awoke but exhaustion was wreaking havoc on my body and mind. I said one of my most sincere prayers to God, asking that he protect Malachi while he slept.

So here we are, three years later. Although Malachi is still very much medically complex, Jake and I have learned his every move. We can hear his silent seizures from a room away simply by listening for his breathing patterns to change. We can predict a vomit before it officially comes. I can tell you what kind of day Malachi will have simply based on the first five minutes of him waking up. He is one quirky kid, but we love each and every one of those quirks.

So three years later, I would like to tell you a little bit about our Malachi.Some of this you may already know, but it will give you a good summary of how he is doing!

SLEEP. If you have been following Malachi’s journey for awhile, it is no secret that Malachi is a terrible sleeper. It isn’t his fault, but instead we blame his brain. His brain wave patterns have been described as “chaotic” and never calmed down enough to allow him to get into a solid REM cycle. For the first two years of his life, he commonly would sleep only 3-4 hours per night with no daytime naps. Last month, we were thrilled that he was sleeping two hour chunks (two hours asleep, two hours awake). This would continue until we hit 5-6 hours of sleep added together and then we would be up for the day. The sleeping chunks had no rhyme or pattern so we were still very much in survival mode.

But I am pleased to report that Malachi is starting to establish a pattern! For the last three weeks he has been routinely going to bed around 10:30 and sleeping until 3:00. Like clockwork, he will stay up EXACTLY 2 hours and go to sleep around 5:00. It is truly amazing how accurate this new pattern is. He will wake back up again at 6:30, and on good days I can get him to sleep in the bed with me for another hour. I can’t even describe to you how refreshing these solid chunks of sleep have been for Malachi and me. Praise God!!

FEEDINGS. Malachi has a diagnosis of “Failure to Thrive” meaning he needs to be watched closely to make sure he is growing properly. He has been skin and bones for several years prompting several discussions with medical professionals about the necessity of a feeding tube. I don’t know if you have noticed lately, but Malachi is one fat dude. Once his tonsils came out, he nearly doubled his food (and calorie) intake and Jake and I are now worried that he is too big for his age and frame. Never did we imagine we would be saying that!

In an effort to feed him less bottles, we are trying to get through the day with lots of snacks. He is very eager to eat from a spoon but cannot take any large quantities yet. Texture is still an issue for him, but he is progressing quickly. Even if we are able to get him solely on spoon feeds we will still have to hydrate him with a bottle or sippy cup, so we are working on both facets of the transition.

MEDICALLY. Right now Malachi is in a really good place medically. Aside from his upcoming dental procedure, there are no issues on the horizon. He has a shunt in his brain that could malfunction, but we have been very blessed that his is still working wonderfully. He is still having seizure sparks every day (4 on average) and will have a large seizure (30 seconds or longer) once every week.

The best medical update is that Malachi is no longer vomiting on a daily basis! In fact, he went a whole two weeks without a single vomit until this afternoon’s mayhem! One year ago he was vomiting 6-8 times each day. His reflux is still an issue that requires daily medication but it is improving!

He is still legally blind, but we are seeing improvements in his peripheral vision, as well as his vision in low light settings. In fact, just last week I was able to snap a picture at the Rainforest Cafe which was VERY low light and he was looking directly at me. It is so rare to see this that it almost doesn’t even look like him in the picture!

Last week’s blog covered his orthopedic issues so we won’t rehash those again! Malachi’s cerebral palsy also affects his core and head control, but both of those are continuing to improve. His CP also affects his hands and causes him to tuck his thumb inside of a very tight fist. We do stretching with his fingers and hands to help relax the ligaments but he is often fisted, as you can see in the above picture.

SOCIALLY. Malachi has become a social butterfly and loves to be around other people. He particularly loves crowds and new voices. He also has an amazing memory for people and places that he especially loves. He anticipates things more than any child I know, so we tell him way in advance what we are about to do. His physical body changes, tight with excitement, and his eyes fill with wonder as he listens intently for clues that we are close to his adventure.

Malachi loves to play. He can make just about anything into a game and will engage anyone who will allow it! He will fling his head down to his chest in his wheelchair just because he knows I will tell him to lift his head back up, which he will do with a mischievous grin and fling it again 5 seconds later. Lately he has been pushing off of things to move his wheelchair and other rolling seats all by himself. He is finally playing with the (what feels like) hundreds of toys we have for him, and loves anything with cause and effect. And yes, he still makes it his mission to color on the table instead of his paper. Little goober.

He will also listen closely for someone to come near him and try his very best to hit them with his hand. He thinks that this is the silliest game invented, as most people react surprised to getting hit by him. He will play this game for HOURS if you allow him to.

Malachi desperately desires to interact with the outside world, and in turn, for the outside world to interact with him.

It is rare to not see a smile on Malachi’s face, and his laughter is truly contagious. This video is a prime example:

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I wish I had the mental focus right now to reflect back on the many lessons we have learned in the last three years. There have been so many teaching moments from God! Jake and I were talking tonight about our life and agreed that one of the biggest lessons that has brought us the most peace has simply been this:

To live a life of contentment.

Contentment is not easy, nor is it natural. It is something you have to choose to do. It requires you letting go of your preconceived notions and simply learning to enjoy every facet of your life- including your trials and challenges.

And you know what- I don’t think that true contentment is even possible without the presence of God in your life. Because it is through the peace that He brings that we can learn to set up camp in a storm.

Do we want Malachi to be fully healed? ABSOLUTELY. But we look at the ways that God has used Malachi’s imperfections to bring others closer to Him. Although our son is not “whole” by the world’s standards, we are perfectly content with God’s plan for his healing- whether it happens here on earth or in heaven.

Contentment has carried us through these last three years.

If you are looking for a mini-Bible study, I encourage you to look up these verses on contentment: Philippians 4:11-12, 2 Corinthians 12:8-10, Isaiah 26:3-4

So now to end the blog on a humorous note, I have decided that like the “Truman Show”, I am a star of a reality TV series that I know nothing about. I have found myself looking for hidden cameras so frequently over the last few weeks, thinking surely someone is playing a prank on me.

While our appointments have been slowing down, we still have around 7 or so a week that require us to be out and about in public settings. Somehow we always tend to attract interesting people, and this week was no exception.

Let me set the scene…

Malachi had a routine appointment with the neurologist at our local children’s hospital. It is normally a 1 hour drive, but due to rain and a wreck it was a grueling 1.5 hours before we pulled into the parking garage. At this point, I was frazzled and literally racing to the basement, knowing that if you are more than 15 minutes late the appointment gets cancelled.

Malachi was having the ride of his life as we zoomed down the hallways and to the elevator. There was a nice big sign saying “Out of Order” (figures) so off we zoomed to find another way down. As we neared another set of elevators we passed a long train of a family that was walking slowly toward the same elevators. They saw Malachi and asked “How old is he?” and I politely replied that he was 3. Then one of the girls (about 16 years old) walked up to him with her hand out and asked “Oooh can I touch him?” This alone caught me off guard, as we are not fond of strangers touching Malachi. As I was hesitating trying to think of a kind response she jerked her hand back quickly and said “Wait, is he nice?”

At this point, I started looking for the hidden cameras. In the meantime, a nurse had also arrived at the elevators and overheard the comment. She snorted when she heard and we made eye contact for a brief second. Her eyes were wide with amazement and shock, as were mine. I slowly and kindly responded, “He’s not a dog- he won’t bite.” At that exact moment two elevators arrived, one going up which my new friends got on, and one going down which we jumped on very quickly. As I rode the elevator I started laughing uncontrollably like a weirdo as I replayed the interaction. People don’t think before they speak. Jake and I rarely get upset at ignorance, we just laugh it off, and this was one of those times.

I checked in for my appointment and they instructed me to have a seat in the waiting area. I got out my phone and texted Jake telling him about the crazy comment and after I hit the send button the door opened and in popped a child’s head. She looked at me and yelled: “She’s in here!” and the entire family of 6 from my upstairs encounter proceeded to pour through the door and all sat next to me…yup, both sides of me. No, they did not have an appointment with neurology but were supposed to be waiting in the room down the hall for x-rays. For the next five minutes they asked me many, many questions about Malachi. Some typical ones, and many too offensive to even repeat. They weren’t purposefully rude but simply ignorant. I answered each one of them as lovingly as possible, but the receptionist at the desk was wide eyed with shock at what she was hearing. She immediately called back to the nurses station and asked them to take me to a room quickly.

At this point, I was absolutely convinced that this was the show “What Would You Do?” but alas, it was simply just another crazy day in the life of the Carrolls. Moments and comments like these are a little too common in our days, but truthfully the humor in them usually works it’s way to the top relatively quickly. Jake and I have laughed about that one for days!

I want to thank you for taking the time to pray for my grandmother last week. She has been moved out of the ICU but is still recovering in the hospital from double pneumonia and secondary infections.

We still very much need your prayers for Malachi, that he remains healthy leading up to his procedure on the 6th. Pray also that God will continue to rewire his brain around the damage and that we will continue to see improvements with his little body.

Thank you for taking the time to check in on our little miracle! And for listening to me ramble haha!

Love,

Jake, Leah, and Malachi

This week we headed to an appointment at Vanderbilt with Malachi’s orthopedic surgeon. Warning: there is a long medical update ahead…I hope it doesn’t bore you too much!

If you are new to the blog here is a little background information:

#1) Malachi was born with bilateral (meaning both feet) vertical talus (opposite of club feet where the feet are rotated outwards and up). We had to put him in leg casts every week for 5 months and do a surgery on both feet. He wears leg braces called AFOs 23 hours a day to keep his feet in the proper position.

#2) Malachi was also born with bilateral (meaning both) hip dysplasia. In the NICU he would rest his feet over his shoulder. It looked terribly painful but he didn’t seem to mind! His hips started to find their way back into the socket but are now both completely out and up above the hip joint.

#3) Malachi has cerebral palsy, and his legs are very affected. His brain is telling his leg muscles to pull tighter which is why his hips are so severely out of place. One of the main muscles that is affected runs from his knee to his hip joint and is so tight it does not allow his knees to bend very easily. We call these tight muscles “spastic” and they can continue to worsen over time.

Hopefully that background information will help this update make sense!

Malachi’s case is so complicated that the Chattanooga doctor we were seeing recommended we switch to Vanderbilt. We have found a wonderful doctor there and have been meeting with him every few months to discuss a game plan. At our last appointment with him in November we had decided to start thinking through a femoral osteotomy. I don’t recommend googling the term unless you are in the mood to cringe. The procedure is extremely painful and extensive, and must be done by the age of 7. The surgery would involve an 8 inch incision where they surgically put the ball of the femur back into the hip socket and secure it with metal plates. Malachi would be in almost full body casts (nipples to toes) for a few months. And the catch…the procedure is only 60% successful, meaning there is a 40% chance that they would pop right back out of socket. But we are told that without this surgery, Malachi would never be able to walk.

Jake and I have been very unsettled about this surgery and had planned to push it off for several more years. We hated the idea of causing Malachi so much pain, and with such a high chance for it to be unsuccessful. But we also didn’t want to not do something that could help our warrior walk.

This week we met again with the surgeon and had a brutally honest discussion about Malachi’s future. The surgeon acknowledged that since he has been seeing Malachi, there has been no progress in his leg function. Let me explain that a little…Malachi’s brain does not communicate with his legs in a functional manner. So as the doctor stated, even if we put all the parts where they should be, his brain is not telling his legs to move. Malachi is unable to move his ankles at all. And he can only extend his knee and is unable to bend it without help.

As much as I hate to, I 100% agree with the surgeon that Malachi’s brain is his legs worst enemy. After much deliberation, Jake and I have decided to not pursue the femoral osteotomy and instead go a different route.

We will be doing nothing. Yup- you read that right. At this point, we will simply watch and wait. Statistics show that 50% of children with hip dysplasia will go on to develop severe pain during the time of a big growth spurt, particularly around the age of 9. If Malachi is in that 50% group, as soon as we are able to recognize that his hips are hurting we will do a surgery to remove the source of the pain (the head of the femur). It will be sawed off and the surgeon will try to fill the empty socket with scar tissue. The surgery is way less painful than it sounds and astronomically less painful than the first surgery option. It has a very high success rate for alleviating pain and will never need to be repeated.

The only big downside is that we are having to come to terms with the realization that Malachi will never take unassisted, purposeful steps. Once the head of the femur is removed he will not be allowed to put weight on his legs at all and will absolutely be confined to his wheelchair. Until then, we are told to do whatever makes him happy, as we cannot do any more damage than what has already been done.

Although this news can seem devastating, I left the appointment feeling such a peace. Jake was not able to come with me, so I called him and summarized, and he also had a comforting peace about our new plan. We always want to do what is best for our Malachi, even when the choices we have to make for him don’t match up with our hopes and dreams. We are learning to let go of our expectations and simply enjoy the child we have been given. That is a very hard thing to do.

When I ponder the decision we have made, I find myself wondering why it is so important that Malachi walks? I look at this handsome, happy toddler and realize that he is content with his life…so shouldn’t we too be content?

We will continue to pray for a miracle and expect God to put his hips back in place. We will still pray that Malachi’s brain can heal and that he will be able to move his ankles, knees, and legs. Psalm 42:11 “But O my soul, don’t be discouraged. Don’t be upset. Expect God to act!“

We will choose to not insult God with thinking we can limit His power with our unbelief. 

As you can imagine, we tend to turn a lot of heads in public places. It isn’t every day that you see a three year old in a wheelchair! On our way to Vanderbilt we stopped at a local breakfast place to fuel up for our busy day. An older couple stared at Malachi for the better part of 45 minutes, so it was no surprise to us that they stopped by the table on their way out to leave. He said: “That is one happy boy.” And as I looked at Malachi grinning at this man, my heart warmed and I replied: “Yes, we are very blessed.” The man’s face changed as he processed what I said. His eyes seemed confused, then a smile came across his face as he said: “Huh. What a positive way to look at it.”

As I thought about that man, I understood the confusion on his face. When an outsiders sees a three year old boy in a wheelchair, struggling to get his brain to cooperate with his body, I can imagine that “blessed” isn’t the first word that comes to mind. But as I replay Malachi’s fight for his life, and the struggles our family has faced I can’t help but feel so enormously blessed by the happy boy God has given us.

We are uniquely blessed.

When you sit back and think about what could have been…what different outcomes could have happened in a situation…it reminds us to search for the blessings, no matter how hidden they may be. Thank you, Lord, for your seen and unseen blessings.

 I found a new song this week that has been speaking to me. If you are struggling finding meaning in trials, please take time to listen to it. https://www.youtube.com/watch?v=1CSVqHcdhXQ

Malachi has had a great week. My sister-in-law joined me for our Vanderbilt day and we had a blast! We even took Malachi to the Rainforest Cafe so he could listen to all the jungle animal sounds. His vision was actually decent in the low lighting of the restaurant and he looked around with wide eyes and a big smile most of the meal. We just made sure to cover his eyes whenever the fake storms began in case the flashing lights might spark a seizure. We were in the car for 8 hours that day, and he didn’t even cry or fuss a single time! That is a record!

He is still such a silly boy who loves to go on adventures. He is so incredibly playful these days and will make a game out of almost anything. Even kitchen cabinets…

Please continue to pray for miracles in Malachi’s life. Pray that the peace of God that Jake and I experienced this week through our tough decisions will continue to overwhelm us concerning Malachi’s life. Pray that God grants us the wisdom we need to allow Malachi’s life to fulfill God’s good and perfect will.

And a final request, please pray for my very sick grandmother this week as she is in the ICU battling pneumonia and a secondary infection.

Thank you for taking the time to check in on our Malachi.

Love,

Jake, Leah, and Malachi

 

All week long Jake has been asking me what I would like to do for Mother’s Day. Each time I diverted the question away, but couldn’t quite figure out why. Yes, I am a mother to a beautiful and precious gift. But as odd as it may seem, I have such a hard time relating to mothers!

Just last week I was sitting at a church function listening to a cute speech about mothers from the Bible. The first character that the speaker mentioned was Eve who was the “reason we have epidurals” and when this was stated everyone in the room laughed and casually exchanged glances. I felt my face turn red and I looked down to my lap. I had no idea why that emotion came over me, but as the speech continued and talked about childbirth and raising children I found myself getting more and more emotional. With each funny line came exchanged glances of acknowledgement as this room full of mothers united joyfully in all of the mommy moments.

It isn’t so much that I don’t feel deserving of the title “mother”. But when I look at my role in Malachi’s life, I find so many others that seem to overshadow that one…nurse, caregiver, therapist, advocate…I am his arms when he wants to play with a toy…his head when he can’t figure out how to turn his own to see something new…I am his legs, trying desperately to allow him to do the things that other kids his age do.

Jake is always respectful of my weird moods and quirkiness so he allowed my constant diversions away from planning the day’s events. Tonight I was able to bring up the topic as I confided in him that I have a hard time relating to others as a mother. We talked about the last several years and it felt good to find comradery in my feelings. We reminisced about my first Mother’s Day when Malachi was still in the NICU. I remember the feeling of resentment each time I had to call into the front desk and identify myself and ask permission to enter the room that he was in. It is hard to feel like a mother when you have to ask for permission to see, touch, or even hold your child.

That year, Jake wanted to honor me for Mother’s Day and took me out to lunch. As he and I sat in a restaurant I was surrounded by families, most with children, and I ended up crying through most of the meal. I just wanted to bring my boy home!

Then the day came when Malachi was discharged. We were thrilled and terrified at the same time. We had to be so vigilant with medication schedules, feedings, seizure watch. We never got the chance to relax and enjoy our son. Malachi is now three years old, and Jake and I discussed tonight how it has been in the last three months that we have started to officially feel like parents! We have found our routine with his medical needs and appointments and finally have the strength to simply enjoy our son.

If you spend any time with Malachi you will see that there is a spunky, silly boy in that body! He is so eager to play with others and with toys, and he tries to make everything a game. When I grocery shop, he swings his little hand out, trying to knock things off the shelves. Lately he has been showing that he wants independence and pushes my hands off of his body. This is hard for me, because he cannot sit independently and needs my support, but I also want to respect his desire for independence. I have figured out that if I put his arm around my shoulder that he is able to sit somewhat unassisted, and he LOVES it!

We are also spending some time trying to teach Malachi how to independently play with toys. I have to admit though, that sometimes watching him hurts my heart deeply. He has so much desire to play…his eyes focus, his tongue sticks out in concentration, and it takes all his thoughts and might to get his arm to swing wildly at his toy. To see him work so hard gives me mixed feelings of pride and such a sadness. I wish I could take his pain and difficulties away.

But to see him simply play is something that Jake and I both have been soaking in. It is in these moments that we start to feel like parents. It is in the walks I can now take with Malachi, and the music classes that I can take him to, that I start to realize that this “mom” thing can be pretty fun! Yes, we still have days full of appointments and medical issues but there are now moments of simple childhood joy in the mix. It is so refreshing.

Tonight I had planned on talking about the Providence of God. This term has been on my mind for weeks as I have processed and dealt with the concept in my life. Then this morning during service, the Pastor started talking about that very thing and I smiled, feeling affirmed by God.

So what exactly is God’s Providence? It is the truth that God interacts with His creation, guiding the visible and invisible, the seen and unseen, the good and evil, and directs them all to align with His perfect will. This concept gives me so much hope and peace in my life.

I think about the many ways in which God’s Providence has already manifested in our family- I have always referred to them as my “God moments”. Those moments in which you grow silent in awe, for you know that you have just witnessed the intervention of God. I remember many of these moments happening early in our marriage. Needs were met within the hour of them being spoken, and Jake and I would simply look at each other in silence, knowing that God was blessing us.

My most influential reminder of God’s Providence came hours after Malachi’s birth. A nurse came in to take my vitals and I asked her about Malachi, desperate for news that he was doing better. A nurse just hours before had told me very coldly that it didn’t look like he was going to make it. I remember this second nurse looking at me and saying “I hope you know that it is a miracle that he is here.” I remember nodding, knowing that the odds were not in our favor. She said “I don’t think you understand. He had a knot that was already pulled tight in his umbilical cord. If he hadn’t been born early, he would have died in your womb.” Later I verified with the doctors that Malachi did, in fact, have a true tight knot in his cord. The doctor told me that there was a 100% chance that Malachi would have died around the 33 week mark and that his premature birth is the only thing that could have saved him as knots are not visible on scans.

THAT is the providence of God. 

Because of God’s Providence, I can be certain that God has a plan for Malachi’s life. He has a purpose for Malachi’s struggles, my sleepless nights…I can trust that God is continuing to “work all things together for His good”.

While we often look at difficult situations as negative things, I am able to see that sometimes God is using those tragedies in our lives to bring about an even greater blessing. It may be hours, weeks, months, years, or even a lifetime before we fully grasp the magnitude of His perfect plan, but we can find peace in knowing that our lives are being directed into His good and perfect will.

Malachi has a big appointment this week at Vanderbilt where we will be discussing his spine, hips, knees, and feet. We already know that Malachi’s hips are severely out of socket and have some big decisions to make regarding surgeries. My heart hurts as we prepare for these big conversations and we could really use prayers for wisdom and strength to make the best decisions for our little warrior.

Please also remember to pray for  Malachi’s brain, that it will continue to make new connections. Pray for physical strength for his body, particularly his core muscles so that he will be able to sit independently, as he so desperately desires to do. Pray this his brain allows him to rest and recharge at night, as it has been struggling lately with sleep. Pray for a whole body healing from the Lord and that we will continue to witness more miracles for our Malachi.

Sincerely,

Jake, Leah, and Malachi

 

Exactly three years ago today we were preparing our hearts for Malachi’s second brain surgery. He had finally passed the 5 pound mark that was required for the procedure and Jake and I were experiencing conflicting emotions of joy and dread. While we hated the idea of Malachi having such a big surgery, we also recognized that necessity of the machine they would be placing into his brain.

Sometimes as parents we are forced to make decisions that are in the best interest of our children…even when they could cause pain…knowing that it will bring about healing in the long run. Our journey has been filled with these moments, and knowing you are a huge part of the pain your child is suffering can bring about so much guilt.

I think back to the 5 month casting process for Malachi’s legs, as I held him down each week for them to wrap his legs in painful positions. I think about the infantile spasms in which we had to give Malachi steroid shots twice a day, knowing that the medicine was changing his personality and temperament, but also knowing that it was the only way to stop the seizures that were damaging his brain. I think about the many blood draws, surgeries, catheterizations, and hospital stays where Malachi’s comfort took a back seat in order to do what was medically necessary for his little body.

But it is through these horrific experiences that I have been able to witness a very important lesson…

Sometimes discomfort is necessary to bring about true healing. 

Without all of the painful events I have described above, we would not have had the chance to know our spunky, silly 3 year old warrior. Malachi’s pain, as hard as it was to witness, allowed his body to overcome.

As I dwell on this thought I can’t help but make the same comparison with our heavenly father. Sometimes when trials come our way we are overwhelmed with the stinging pain that often accompany them. Our unmet expectations. Our confusion. Our fear of the outcome. Pain is often quickly associated with negativity. But we must remember that pain can bring about some marvelous things.

This week I was able to share Malachi’s story with a group of women at a local church. Whenever these opportunities arise, I gladly accept and trust that God will bring me the words He needs them to hear. My prayer is simply to be used as His mouthpiece. As I prayed over this event, the words “Refiner’s Fire” continued to come to me. And after doing some research I realized why.

1 Peter 1:7 “These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold- though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor the day when Jesus Christ is revealed to the whole world.”

In biblical times, a refiner would place natural ores into a crucible, which was simply a firepreoof pot. He would send this pot into the fire and as the contents melted, impurities rose to the surface. The refiner would take these impurities (known as dross) and scrape them off the top. But he didn’t stop there. He would send the pot back into the fire, increasing the heat because different temperatures would bring different types of dross to the surface to be removed by the refiner. This process would continue over and over (up to seven times as read in Psalms) until the pot was free from impurities.

As I read into this process the Lord started to show me the dross that has come to the surface through our current trials. He reminded me of my pride and arrogance before Malachi’s birth when I relied more heavily on my own wisdom than that of the Lord’s. He reminded me of my moments of doubt, even after His constant reminders that He was healing my son. He reminded me of my current dross that is still finding it’s way to the top…my discouragement, my anger, my worry.

And as I looked back at the pain we have experienced in Malachi’s three years I see the ways in which God has been working so steadily on Jake and I- like the patient refiner. While we have been in the fire, He has been watching anxiously, waiting for the right moment to bring us out of the heat and cleanse us from another heavy burden. And our heavenly Father does not delight in our trials and pain, but knows that it is sometimes necessary to bring about something greater than our minds can imagine.

 

I don’t know what trials you are experiencing, or what in your life is causing you pain. But I hope that you too can look forward to the other side of your fire, knowing that you will come out purer and more refined than when you went in. I pray that you too are able to put your faith in the refining process.

Malachi has had a wonderful week. He is continuing to surprise us with his improvements, as minor as they may seem. This week we have tested our comfort zone and tried taking him to things that were previously off limits due to his complexities. On Saturday, for example, we embarked on a full day of activities which is something we have never before attempted. We were out the door by 9:30am and returned around 7:30pm, and he handled it like a champ although he did show us he was enthusiastic about finally being back home.

Jake and I have laughed this week as we talk about children’s reactions to Malachi. Typically 1-2 year olds see him and will refer to him as “the baby”. 3-5 year olds don’t seem phased by his differences and are very curious, coming over to touch his shoes or chair. 6-7 year olds tend to be terrified of him and avoid us at all costs, and 8+ have lots of questions which we gladly answer. Jake got to witness his first “100 Questions” session this weekend at a local children’s home. One of the residents was an 8 year old girl who was simply captivated by Malachi. She stared at him for over 20 minutes asking question after question and seemed satisfied with each of our answers. I love moments like these because I know that the next time she meets a child with leg braces or a wheelchair her mind will register that it isn’t such a scary difference after all.

Speaking of leg braces, next week will be heading to Vanderbilt to meet with Malachi’s orthopedic surgeon. His legs are very complex as his hips are both dislocated, his knees are dislocated, and his feet are both starting to pull upwards and out again. Cerebral Palsy can wreak havoc on ligaments and joints and solutions are not easy. Jake and I have to make some major decisions about surgeries in Malachi’s future, many of which will cause him immense pain. His legs and joints continue to be a significant prayer need.

I am also asking you to pray for Malachi’s digestive system and stomach. His body is constantly creating burps that get trapped in his stomach. This trapped gas sparks his seizures and is something we combat daily, all day long. He lacks the stomach muscles needed to burp on his own. While I am still able to physically help him get his burps out, that window is slowly closing and pretty soon he will be too large for me to burp successfully. This issue is also the main reason that we cannot leave Malachi with others for any length of time. It is also one of the common reasons he wakes up in the middle of the night. We need a solution…we need a miracle. We have tried many methods and medicines for this issue, and I have even ordered herbal supplements from Germany, desperately trying to find an answer. Not only will a solution solve stomach issues but it will also decrease his seizures tremendously. Please join me in prayer over his little tummy.

Thank you again for taking the time to check on our Malachi. And thank you for your patience as I continue to learn how to wrap my thoughts into a concise blog.

Sincerely,

Jake, Leah, and Malachi