This past week was a rare one as ALL of Malachi’s therapies and appointment were cancelled for spring break. Aside from Malachi’s music class on Tuesday we had no other pressing commitments in Malachi land, and what a refreshing feeling that was!

Years ago when I envisioned being a mom I thought about all the fun activities I would plan for my little crew (which was going to consist of four boys haha). We would not be a stay-in-the-house type family, but rather we would stay busy with impromptu hikes, splashing in the creek, play dates with buddies, and lots of fun! I had planned on being supermom.

Never in that vision did I imagine that my son would not be able to hike. I never imagined that play dates would cause painful pangs of jealousy in me as I watched children do things that my son would never be able to do. Never did I thinkthat I would need a large whiteboard calendar on the wall to keep track of medical appointments…a list that literally never “ends”. At the end of every appointment a new one is scheduled so the list never shrinks.

So when a week like this one rolls around I find myself a little lost as to how to fill the free time. By the time Wednesday rolled around we were absolutely loving the freedom and I was able to be the “awesome special needs mom” that I really want to be.

What does that term “awesome special needs mom” mean, you may ask? It means a mom that does all the homework assignments the therapists and doctors give me weekly to do. Spending time in his medical equipment that helps with weight bearing, taking feeds by mouth, stretches, practicing independent play, working with switches, haircuts, baths, focused teeth brushing…all those weekly activities I usually have to cram in between appointments were able to be tackled. And it felt amazing.

 

Not only was I able to focus more on Malachi, but I even had a chance to focus on me! Instead of grabbing quick meals on the run I was able to prepare healthy salads for lunch. I even had enough time in our day to run to the local gym with Malachi and run on the treadmill a bit. It sounds silly but I feel like I got a bit of my identity back.

We have a wonderful friend at church that has always cut Malachi’s hair for us for next to nothing, and as you can see in the picture above it was time! Unfortunately our church friend has been incredibly busy so we attempted to try a public place for this go around. I called ahead and asked if anyone working that morning would be comfortable cutting the hair on a special needs kid and explained that he was usually pretty calm during the process. The lady on the phone said “I am sure someone here will do it.” So we headed that way.

As I drove over I found myself getting increasingly anxious about the situation. I wasn’t worried about Malachi’s hair or safety, but more worried about having to expose ourselves to rejection. What if I went in and when they saw Malachi decided that they couldn’t accommodate him? Or what if when I told them about the shunt in his scalp, they got grossed out and said they weren’t comfortable? I kept envisioning all the possible scenarios in which I might be turned away and my heartbeat wouldn’t calm down.

The odd thing is that this is one of the first times this feeling overwhelmed me. Jake and I keep Malachi in a safe bubble world and try not to pursue things that could lead to rejection. We never want Malachi to feel ostracized so if it could lead to that we just pass. But alas his hair was blocking his vision and something needed to be done.

The young girl that cut Malachi’s hair was very kindhearted and cut his hair like a champ. While she was clearly nervous about his shunt and his head control issues, she did not shy away from the task and I was very grateful. Afterwards I felt silly for having such strong emotions, but it reminded me that this is still a relatively new world for us. The older Malachi gets, the more obvious his differences are and we are learning how to live in a world that doesn’t always embrace those differences.

One of our biggest focus point this week was eating table foods. With extra time at home I was able to prepare meals specifically with Malachi in mind, and boy oh boy did we make some progress! Every day this week Malachi ate one significant “meal” with us. He ate chicken casserole, a sweet potato with brown sugar and butter (yay for extra calories), soup, a very mild form of chicken enchiladas, queso cheese, lemon pudding, and lots more!

We are so proud of his eagerness to eat, and when it is something that he really likes he is downright demanding! He will swing his hand to hit my arm so I know he wants more. When it is something that really intrigues him his grow as wide as saucers and he will “baby bird” us by opening his mouth and begging for more.

We are getting more adventurous with textures and consistencies and he is rising to the challenge. LOTS of progress this week!

On Saturday the three of us went to see the high school perform “Beauty and the Beast”. Malachi was so fun to watch during the performance, jumping when the best roared, smiling when the singing started- even singing along to the ones I frequently belt out at home. He had the attention span of a four year old and was ready to roll after an hour, but it was a fun experience with him.

Jake and I filed our taxes this week, and as she typed in our information I spotted the column for employer next to each of our names. Next to Jake’s name read TEACHER and next to mine it said HOMEMAKER. I smiled to myself as I read this, thinking about how we were bold face lying to the IRS.

If you were to require me to list a career right now, homemaker would not come to mind. Our home is a conglomerate of chaos and always tends to smell like poop. When you are carrying a 35 pound toddler with no head and body control, things tend to get set down in places and never fully put away. The “to be ironed” stack grows hilariously large until Jake is down to only swim trunks left in the closet to wear to work and I have to tackle the stack.

So being a Homemaker- someone who manages the home- is definitely far from the truth, but listing “Special Needs Mom” in it’s place wouldn’t quite work either. We will stick with homemaker for now!

This coming week is Jake’s spring break and our busy days are about to start back in full bloom. Tomorrow we start appointments at 9am and finish around 4:30pm but having Jake there to help makes the task feel more manageable. Tuesday we will be meeting with the neurosurgeon to check on his shunt, but I don’t foresee any major issues.

We are tentatively planning a tiny getaway for Thursday and Friday, but I think I will wait to let you in on the fun. But if it works out as planned Malachi will be one happy boy!

As far as a devotional thought this week, I want to borrow someone else’s words to share with you. I took the youth group to a rally this Wednesday and the group that led the music sang a song that I have heard several times before. But as I listened to the words this time I got the chills, thinking about the significance of Jesus’ death on the cross. Here are the lyrics to the song “Forever” by Kari Jobe; I will also post a link to a music video if you feel like learning an amazing new song:

VERSE 1
The moon and stars they wept
The morning sun was dead
The Savior of the world was fallen
His body on the cross
His blood poured out for us
The weight of every curse upon Him

VERSE 2
One final breathe He gave
As heaven looked away
The Son of God was laid in darkness
A battle in the grave
The war on death was waged
The power of hell forever broken

PRE-CHORUS
The ground began to shake
The stone was rolled away
His perfect love could not be overcome
Now death where is your sting
Our resurrected King
Has rendered you defeated

CHORUS
Forever He is glorified
Forever He is lifted high
Forever He is risen
He is alive, He is alive

BRIDGE
We sing Hallelujah, we sing Hallelujah
We sing Hallelujah, the Lamb has overcome

As we get closer and closer to Easter Sunday I can’t help but find my mind wandering to the power of Christ’s death. This song uses the phrase “As heaven looked away” and that has captured my attention. I have been wondering what the tone in heaven was that day. I wonder if the earthly sadness of Christ’s death was drowned out by a joyful rejoicing in heaven as the heavenly realm watched God’s perfect plan falling into place….knowing that Christ’s suffering was leading to something so great and magnificent.

What a beautiful love story we have been privileged enough to be a part of. John 3:16 “For God so loved the world that He have His only begotten son, that whosoever believes in Him should not perish but have everlasting life.”

Just something to ponder this week!

God bless,

Jake, Leah, and Malachi

 

 

 

This week was an exciting one and I can’t wait to share it with you!

First of all, let’s unveil the new and improved wheelchair…for memory sake, here is a photo of his chair pre-repair. Notice the “long sit” with his legs straight out. His little knees just wouldn’t comfortably bend.

And here we go…dum dum duuuuuuhhhhhh…..the new and improved chair:

Look at those knees bent to 90 degrees! What a difference! Malachi is sitting so much better in his newly adjusted chair. He sits a little higher, which he really likes and while we can’t quite explain it, he just seems happier and more comfortable in it. We are absolutely thrilled.

Malachi and I were guest speakers on Wednesday night for the little girls class at my church. They were so respectful as they listened to me explain Malachi’s brain, how it differs from ours, and how it has a hard time telling Malachi’s body what to do. We talked about the word “retarded” and how using that word towards situations or friends can be hurtful.

They asked a lot of questions, which I was very glad to answer. I think it is so important to be transparent about Malachi and his needs, but also help them understand that even though he may look and act different he is still very much a 4 year old boy who wants to have friends. After they asked their questions I had them come talk to Malachi and here is a video of the sweet encounter:

Malachi is such a sweet little spirit. In a 24 hour span he can bring out literally every emotion from within me…joy, happiness, sadness, anger, and so many more. At night the first time he gets up I find myself simply snuggling him and thanking God for him. Round two for the night usually morphs into a tough love and by round five and six I am just so angry that his system won’t calm down enough to let his body rest.

But we can’t ignore the blessing we have been given. This picture was taken four years ago when he was under 3 pounds. From the top of his head to his booty was just 10 inches.

Malachi’s communication continues to change on a monthly basis. He used to be able to say several words when prompted, and we seem to have lost some of those. But he will always make an effort when asked. We would love to be able to get him on a communication system of some sort, like an eye gaze system but we still have a ways to go before he is ready. We have been working hard on his “people skills”, trying to teach him to talk to people when they talk to him and try to look at them with his eyes. I took a video this week to show you how well he is doing at his eye gaze prompts:

And here is another video that shows him working on his verbal communication:

Malachi has been very interactive lately and has been playing so well with his switch toys. He loves that he is in charge of making them “go”; I really feel like he is going through a phase where he wants to be independent. His receptive language is continuing to also improve and this week he was almost giddy when I told him we were going to the grocery store where we would get him a balloon.

We had a little incident in the bath tub today that I thought you would get a kick out of. The shower/tub combo in our rental house has a “switch” that you push up to route the water through the shower-head as opposed to the bath spigot. I got Malachi all situated in his bath chair and flipped on the water only to find that Jake had forgotten to flip the switch back to spigot mode after his shower. Before I realized what had happened, COLD water was spewing from the shower DIRECTLY onto Malachi’s face. Now this boy will panic when I wipe his face with a washcloth, let alone splash it was a handful of water.

Malachi tried to “hedgehog” as we call it and fold his body into a ball, which clearly didn’t work like he wanted. I scrambled and got the water turned off and looked down at him…he was wide eyed and looked at me like I tried to waterboard him in a torture chamber. He was gasping for air and I felt TERRIBLE, but instead of showing it I just laughed and pretended like it was a game. His face slowly changed into a smile and as far as he knows that was a “really fun (and slightly scary) new game mommy played with him”. I don’t think we will plan to play that game again anytime soon haha!

We made some major progress on the house this week and we officially have a basement! Here is a picture of the crane lowering down our basement walls.

The three of us have spent a considerable amount of time at the property this week, just enjoying the changes that are taking place. We are getting so excited about the near future, but are also cautiously trying not to get too excited as we know it will lead to impatience.

This coming week will be an odd one as all of Malachi’s therapies have been canceled for spring break. Jake won’t be on his spring break until next week, so our routine is relatively the same but minus the daily appointments we are accustomed to going to. It is like getting time off work unexpectedly and I catch myself daydreaming about all the ways we will be spending our extra few hours each day!

We could use some prayers this week specifically regarding Malachi’s sleep. I don’t know if he was battling a tummy bug this week or just ate something unsettling but he has been back in his “sleep for 1.5 hours and stay awake for 2” mode and it is taking its toll on us both. My patience level is lower than it should be and weeks like these tend to suck the energy and joy out of our day.

Another request that I would like to add is regarding Malachi’s feedings. He has been so incredibly interested in table foods lately and I just don’t know how to go about giving him the nutrition and calories he needs while also taking the time to teach him to eat. I need some wisdom and guidance from God on keeping Malachi in a healthy place with his eating and weight.

But thank God for good health and no new surgery needs. Malachi has always had to have a major surgery in March (usually scheduled to accommodate spring breaks) and this is the first year without one! We have been so blessed beyond measure.

Thank you for loving our son. And thank you for the silent support so many of you give to Jake and I as parents. We love and appreciate you.

God bless,

Jake, Leah, and Malachi

Oh Malachi…what a goofy boy he has been this week. We are seeing so many behaviors from him lately that remind us that he is a four year old toddler haha! He is going through a defiant streak which is admittedly entertaining to both Jake and I.

 

When we put him in his car seat he will pull one arm under the straps and grab the chest clip with the other hand to prevent us from buckling him in. While we struggle with his little hands he just grins and giggles that he is winning the game. In his tomato seat at the house he will fling his head so far to the side that he is dangling off the seat and will look up at us, grinning from ear to ear, enjoying that we are upside down. We will fix his head and he will do it again in under ten seconds. This morning he was having a blast opening and shutting the bathroom cabinet as we scrambled to get ready.

His little mind is working in overdrive which is so encouraging to see. He is continually trying to figure out how to get mommy and daddy’s attention, or how to get into something. He is our little Dennis the Menace!

He has been blowing us away with his cognitive abilities this week. My brother rented a cabin in the city of Helen, GA and invited us to join them for the weekend. We decided to make the trip up Friday afternoon, stay the night, and return home on Saturday. Malachi and I were up that Friday morning very early and he was just settling back down around 6:00 as Jake was getting ready to leave for work. As he walked out the door he told Malachi that when he got home he would take him on a big adventure.

Malachi drifted off to sleep and when he woke back up the first thing he said was “dad”. I went in and picked him up and that little stinker called for his daddy for the next 30 minutes! He was ready to go on his adventure then and there.

Speaking of waking up, Malachi has been waking up so well lately. For the last several years, Malachi would typically wake up and immediately have a seizure. We would have to run into his room and scoop him up before he vomited to prevent him from choking on it. But lately he has been waking up and just looking around for a minute or so, then he will yell for one of us. While we were at the cabin this weekend, he woke up, looked around, and got very scared and started to cry. It sounds odd, but seeing such a normal response to waking up in an unfamiliar place was very exciting for me as it is just another indicator that his eyesight is improving.

Here is a video from our weekend with family; Malachi LOVES interacting with kids and you can see him reaching out for his cousin Weston in this clip:

Our week was a little out of the norm as Wednesday there was a prediction for terrible storms coming through our area. As a precaution, all the area schools closed for the day so we had a surprise day with dad. We cancelled his therapy appointments that day to prevent having to drive when the storms were predicted to hit. Fortunately they lessened over night and we only got rain. In addition to big adventures this weekend, Malachi got to enjoy a play date at the park with some friends, horse back therapy, and lots of errand running with mom. We also had the first soccer game for our new boy’s team at the high school. Malachi loves to listen to mom and dad coach…especially when we holler loudly at the boys at the other side of the field.

We officially have a basement dug out in the new house, and we have been so fascinated with stopping by the property to see the progress. Seeing a large rectangle in the ground makes it all feel more real.

This week I met with the electrician and explained to him that when it came time to run the wiring that we needed to meet and discuss some big modifications. We are trying to make sure we make this house as Malachi friendly as possible for now and for future health concerns. For example, we will need high outlets in his bedroom to charge ceiling track systems when he gets too big for me to lift. As I talked to this electrician he told me that he has a 13 year old special needs grandson who is very also has several medical needs. He was telling me all the ideas he had for Malachi’s room to make it more suitable for him in the long run, and some of the ideas were things we had not even thought of (like electrical needs if he were ever to need to be on a ventilator).

It is just so neat to me how God has coordinated just the right people into just the right places to help us with this project. God is so good.

I had a rough moment early this week in Malachi’s music class that really came out of the blue! They were doing an activity that involved walking across something plastic seats, something Malachi obviously could not participate in. Anytime this happens in class I just scoot us out of the way and we listen to the other kids laugh. But this time I watched Malachi staring over at the kids, trying so hard to watch them.

He had never done this before and I felt like I got punched in the stomach. It was almost as if he understood that he was being left out and for a moment I wondered if all this time I have been underestimating how much he truly understands. As I watched his little eyes try to find his friends and follow their voices I started to get emotional…my heart hurt that he even has to experience feeling left out…and I started doubting whether or not I should be taking him to things like this where I know he will physically not be able to participate like the other kids.

It was such a painful moment filled with sadness as I thought about Malachi’s future and guilt for setting him up for exclusion. The more I have thought about it over the last week the more I realize the the benefits of his music class outweigh the negatives, but it has been a reminder to me to assume that Malachi is completely aware of what is going on and to do my best to protect his little heart.

My, oh my, how far he has come. This photo was taken four years ago. I remember that I just happened to be in the NICU when they were going to change out his breathing tube. They told me to get my camera ready and that I would have 3 seconds to snap a photo. This was the first time I got to see his whole face and my heart was bursting with love for him. I remember thinking that he looked just like his daddy. At this point, Malachi was about 4 weeks old (so should have been 28 weeks gestation). To get some perspective, look at the thumbs of the adults helping with equipment. His little head could fit in the palm of my hand! Unbelievable.

So a decent week for the Carroll clan! Jake and I are so busy during the week that we do our best to reserve weekends for rest and relaxation. This weekend we didn’t abide by our rule and I can tell you that we are both feeling the busy-ness from the week pretty intensely. We are simply exhausted.

We are continuing our study on the major and minor prophets with the youth group on Wednesday nights and last week I covered Isaiah. As I read through the book I tried to organize what his main messages were, which is a daunting task as the book is very large! But one of the themes was Isaiah chastising the people about their view of the Sabbath. The 10 commandments tells us “Remember the Sabbath day by keeping it holy.” The people Isaiah was referencing were technically observing the Sabbath but it had become an empty ritual for them…just something they could check off the list.

As I read about that I couldn’t help but think about my personal walk with God and recognize the many ways that I have allowed my habits to become “rituals” instead of conscious efforts to connect with Christ.

When Jesus came, he fulfilled the law. Instead of us having to set aside a special day to focus on revering God, we now have access to the Father 24 hours a day, 7 days a week! Every day should be a Sabbath as we take time to focus on God and honor Him.

Sometimes I try to turn my walk with God into a checklist or sorts…prayer: check, Bible reading: check, church on Sunday: check. But I have to remind myself that God isn’t focused on our checklists but rather he is focused on our relationship. I am going to try to make sure each day this week is a Sabbath to God and that I am taking time out of my busy schedule to honor Him.

Thank you for listening to me ramble each week. And thank you for continuing to lift Malachi up in prayer. He is such a special child, and in those eyes I see a brain that is healing. There is a children’s Sunday School song that says:

He’s still working on me to make me what I ought to be.
It took Him just a week to make the moon and stars,
The sun and the earth and Jupiter and Mars.
How loving and patient He must be, He’s still working on me.

I know it sounds silly, but when I look at Malachi I can’t help but see that truth in those words. He is still working on my Malachi, and we are so very blessed by that thought.

With love,

Jake, Leah, and Malachi