Thanksgiving week is here! Where we live in the south they close schools for the entire week and the break truthfully couldn’t come at a more needed time. Malachi is back to rough nights and seizures. He always struggles when the seasons change. Having Jake home to hand him off to in the mornings is such a blessing.
One of the most challenging parts about the special needs world is dealing with the unpredictability of it. Routines are not easy to establish when you are battling epilepsy and one seizure can change the course of the entire day. I have learned not to plan too far in advance to prevent myself from feeling disappointment and frustration when things don’t go like I envisioned they would.
Malachi had to have some work done on his orthotics this week and Levi has outgrown his! With Malachi’s AFOs they can heat up the material and remold it when it gets too tight and starts causing pressure sores. Levi’s are shoe inserts so we can’t modify them but rather just order the next size up.
We did get some fun news this week- a few weeks ago I wrote a letter to a local grant board about using some grant money towards a golf cart/UTV for the boys so we could spend more time outside and on family ”walks”. It will also make outings to non-handicap accessible settings something that Malachi can now do. We have to say no a lot these days because it is logistically not possible to get Malachi there, and the larger he gets the less safely I can carry him for long distances.
We received the formal approval and have been working with a local company to find the perfect machine for the boys needs. We are planning to pick it up this week and Malachi is absolutely thrilled. When we went for a test drive he got the giggles just sitting in it. Then we drove it for a bit, him smiling ear to ear the whole time. I turned to Jake and said “I guess we need to go back now.” And when Malachi heard that he started crying crocodile tears. He DID NOT want to stop riding it, and he cried the whole way back to the parking lot.
We did let him choose the color, which he was excited to do signing no for red and blue and a hearty yes for black.
Education moment: Grants. There are several organizations around the country that like to help in situations like ours. They recognize that much of our income goes towards the non-fun medical things, like appointments, therapies, and procedures. The offer small amounts of money in the form of grants that you can apply for and use for the things insurance often does not cover (diapers, medical tapes, specialized equipment, etc) There is an excellent grant in Chattanooga for surrounding counties and we have been blessed to receive it for Malachi since he was 2 years old and Levi since birth. Each year we have applied we have been granted $2,000 for each boy each year. Initially I used those funds for medical things but as the years went by Jake and I changed our mindset to ”quality of life” things that enrich their everyday. Things that we dream of for our boys but could never justify depleting savings on.
We have used it towards the therapy pool, the playground, switches for Malachi, adult sized changing table for Malachi, tube friendly onesies for Levi, special mattresses and beds for safer sleeping, specialized formula, medical tape, oxygen concentrator, etc. We applied for other grants when Levi was born to help with some of the extra medical expenses incurred from being in the ICU for 131 days. The applications are typically tedious and long but I understand why.
The insurance side of special needs is brutal and often offensive. For example, we received a denial for a bath chair for Malachi to help support him for showers because they said it was a ”comfort item and not medically necessary”. This week we received a denial for a chair for Malachi we ordered in July because we already had a chair (that he has outgrown and Jake and I paid for out of pocket) that should be sufficient. These companies are most definitely not on our side for things, so finding grant companies willing to help and make things easy are a breath of fresh air. We spend months meticulously planning what to spend the granted funds on, and being able to dream about some bigger items and projects we could do is actually really fun.
There are some weeks that I am more emotionally fragile than others and for some odd reason this was one of them. Throughout the week I felt like I was on the verge of tears but I couldn’t seem to figure out why. Last week was Levi’s birthday, which usually equals a fragile week but the emotions stalled for a week.
I have been reflecting so much on our journey with him and remembering those hard conversations surrounding his birth and diagnosis of bilateral vocal cord paralysis. The only option we were presented was to put in a trach and a g-tube and wait and see if he was part of the 50% with this diagnosis whose vocal cords “wake up” and are no longer paralyzed. If this will ever happens it happens by the age of 5.
Levi just turned four last Sunday and his vocal cords are still both paralyzed. We have not seen any improvement in those vocal cords and our chance for ”normal” function is whittled down to less than 365 days. And as much anxiety as this brings me now I can’t imagine what life would feel like had we followed through with a trach. The reality that he would need it for a lifetime would have most definitely been hard to take in.
Thanks to some brave surgeons and a rough start in life, Levi will be able to live life without a trach. But the diagnosis is still there and the dysfunction still exists. The specialist appointments, the surgeries, the continual monitoring will continue until those cords start moving. Oh how I long for an easy life for him. The reality of hitting 4 knowing that the final outcome is determined by the age of 5 hit me in a weird way this week.
This week I took Levi into Hobby Lobby for a few minutes to grab one item. We walked straight to it and then straight to the cash register but on the way there Levi and his busy hands found a very breakable decor item on a display near the floor and I watched it domino with a crash. My internal voice was willing ”Don’t be broken, don’t be broken” but as I picked it up off the floor I saw that the damage had been done. Levi was wide eyed, knowing he did something bad but also knowing he didn’t intentionally do the bad thing. I was admittedly frustrated and explained to him that when we break things that aren’t ours we have to spend our money and buy them.
We got up to the counter and the cashier scanned the item as I crossed my fingers hoping for a 50% off miracle on this weird and now broken item. I explained the accident, hoping for a little Hobby Lobby grace but also knowing that doing the right thing with Levi watching was more important than saving $9.99. But it rang up as full price and in comedic fashion the cashier very gently wrapped the broken item in paper and put it tenderly into a bag.
When we got home I pulled it out and put it up on the windowsill, not quite sure what to do with it. Even whole I would not know what to do with it haha. And each time I looked at it throughout the week I felt a pang of bitterness that I paid full price for such a broken item.
I was doing the dishes a few days ago and looking at the odd little figure and it suddenly hit me that this was such a parallel to our journey with our children. As society we assign value to whole, perfect, and typical. The slightest blemish on an item and we expect to see it sent to a clearance bin or taken to a manager for a price reduction. Our eyes no longer see it’s worth or value.
I thought of my two beautiful boys, each with their own blemishes and differences. Each with spots of damage speckled in their brains. Each with whole body issues because of this brain damage. Each with layers upon layers of diagnoses. Many look at them in the same way I look at this figurine…less than and damaged.
But God has taught me through each of their testimonies that there is so much unique beauty in the broken. The things we deem as broken God sees as uniquely and wonderfully made. Sometimes God’s creations don’t look like the rest on the shelf, but it is through those pieces that stories full of God’s goodness can be written.
We were created in God’s image. Not his physical image, but rather a reflection of His character, His qualities, and His goodness.
I am going with a well known verse for this evening’s devotional thought:
13 For You created my innermost parts;
You wove me in my mother’s womb.
14 I will give thanks to You, because I am awesomely and wonderfully made;
Wonderful are Your works,
And my soul knows it very well.
15 My frame was not hidden from You
When I was made in secret,
And skillfully formed in the depths of the earth;
16 Your eyes have seen my formless substance;
And in Your book were written
All the days that were ordained for me,
When as yet there was not one of them.
17 How precious also are Your thoughts for me, God!
How vast is the sum of them!
When I read these verses and apply my son’s names into the pronouns I find myself feeling ashamed for mourning over their differences. Yes, it was something I never expected to receive- I expected whole and perfectly formed and functioning. But God formed my children and their differences were also skillfully formed…which means they are perfectly imperfect. And He made them in His image, to bring Him glory and honor. Why do we place so much emphasis and value on the seen qualities?
I know by now you are likely rooting for the random Hobby Lobby bathroom man mascot that sits on my windowsill. I can’t promise you that he will find a home here, but I can promise you that God intended to use him to remind me that His eyes and my eyes don’t share the same vision. And just like the creepy figurine in my window, my children have been gifted with journeys and stories that leave the fingerprints of God wherever they go. What a blessing a life full of God’s fingerprints can be.
This week my heart and eyes are set on looking for the imperfect things in this world and seeing their God given value, as hard as that can sometimes be.