After such a great week in Florida is was difficult transitioning back into Carroll land. We tackled 8 medical appointments this week and have 8 more this coming week! Life quickly went back to its normal level of chaos mixed with fun.
The boys had some trouble adjusting their sleep schedules back to our normal so we had several camp-outs in the living room. Our giant bean bag has been serving as a portable bed for Levi and I when Malachi falls asleep in the living room.
Malachi and Levi are growing closer each day. Levi has started to answer for Malachi when I ask him questions, trying hard to help big brother. He insists on pushing Malachi in his chair and helping him do things, like color.
But my heart fluttered this week with one tender moment. Malachi was listening to a Mickey Mouse cartoon and at the end of the show all of the characters dance to a song. I always try to help Malachi dance with them by moving his arms like the characters do, but I was in the kitchen when the song came on. I turned around and saw Levi run from the playroom and grab Malachi’s hands to do the dance moves with him. Malachi lit up with one of his famous smiles, and Levi smiled back so endearingly, knowing that what he was doing made Malachi happy.
Levi already has such a special, tender spirit about him. It is so fun to watch that continue to develop in him.
Malachi will turn 7 years old in just over a week. As I looked at him this week I couldn’t help but see all the physical changes he has gone through in the last year. Yes, he is still very small for his age but he looks like such a big boy. And his legs have grown so long!
He hasn’t been healthy enough to go to school since before Thanksgiving, but our schedule allowed him to go two days this week. He was super excited to get to go back and see his friends and teachers, and when I picked him up the smile was still there.
Jake turned 35 on Saturday so we celebrated with a special meal and bowling. Both Malachi and Levi really got into it this time around and Levi liked helping Malachi push the ball down the ramp.
Levi is going through a Mr. Independent phase and we continually find him doing dangerous things, clueless that they are dangerous. He has figured out how to scoot chairs around to reach every drawer and climb up on the kitchen table.
We also are working on the idea of potty training, although I am admittedly clueless on how to accomplish this task. We bought a small potty to get him comfortable with the idea and he really likes sitting on it (fully clothed haha). It makes a flushing sound like a real toilet, which is his favorite part.
The boys both had weigh ins at their GI appointments, Levi is at 23 pounds and Malachi is at 31. Levi is getting a significant amount of calories every day but doesn’t keep the weight on with his breathing struggles. This was one of the big arguments they presented when trying to get us to trach him. It doesn’t help that he is a very active toddler now too!
On Wednesday we will meet with the neurologist to get the results of Levi’s MRI from December. Appointments like these are a little tough to swallow as there isn’t really any “good” news. The BEST news we could get is that his spots of brain damage haven’t gotten any bigger since the last scan…but even in that we have to acknowledge and discuss the brain damage that has already occurred.
Last time we met with the neurologist he said he felt confident we would find the damage more extensive and talked about an official cerebral palsy label based on the results.
In true Leah fashion I am prepping my heart for the worst possible news we could receive but strangely enough I feel such a peace. Not necessarily a peace that the outcome will be favorable, but rather a peace knowing that whatever the results are it doesn’t really change the story God has written out for Levi.
The world has created an idea of typical, normal, standard. Parents and doctors cling to milestone charts and growth charts and look for fixes when the child isn’t measuring up to what “normal” looks like. I admittedly followed these charts anxiously with Malachi, praying and believing that he would be healed and totally “normal”.
But as Malachi’s story has been unveiling over the last 7 years I have started to realize that the worth I was placing on normalcy was stealing my trust in God. Each day that I would hear another diagnosis that led us further away from normal the more frustrated I got that God hadn’t intervened.
I was trying to make Malachi’s story look like everyone else’s instead of finding contentment in the one God wrote and designed especially for him.
Jeremiah 29 says “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the Lord.
There is so much freedom in acknowledging and respecting the omniscience (all knowing nature) of God.
Malachi and Levi each have such unique testimonies, but I choose to believe that it is because God intends to use each of them in a uniquely beautiful way.
Ahh I am doing that thing where I doze off after every sentence so I guess that is my cue to head to bed. Some weeks you all get the scraps of my energy and thoughts; maybe next week I will be more rested.
Please continue to pray over our family. Pray specifically for Malachi to not experience physical pain with his dislocated hips. The larger he gets the more they click around and the surgery that would be required is a terrible one. And please keep praying that Levi’s vocal cords wake up!