We are now a few weeks into the school year and both boys have been settling into their new routines. Academic work is a real struggle for Levi, but watching him develop a work ethic and try hard has made me proud!

I laughed out loud looking at those last two photos of Malachi. His legs have grown so incredibly long and he doesn’t easily bend at his knees. I think he is going to outgrow this wheelchair sooner rather than later.

We have successfully been able to get Malachi’s bedtime from 3am to 1:30am and all meds have titrated to more reasonable schedules.

Malachi has been very quiet at school still and tells me he is “embarrassed” when they they are helping him use his instruments or when he is the focal point of anything. Seeing him so quiet and reserved has been such a surprise for me. Every day I am encouraging him on the way to school to be himself but he is still holding back.

Late last week I watched him sign successfully with his teacher and it brought me to tears. I love seeing him work towards some independence. How empowering it must feel! I keep asking him if I need to come to class with him to help him be himself and he is very quick to sign no. Not cool, mom. Not cool.

Last week a student came up to Malachi and asked innocently “What’s wrong with him?” Malachi pursed his lips, clearly offended and unamused by the comment. As the teacher softly corrected the student I leaned down and explained to Malachi that he had likely not seen a child in a wheelchair before and that we needed to give him some grace on his wording.

Later that evening I was recapping the conversation with Jake and Malachi and apparently Levi was listening in. The next day at school he went up to the boy and indignantly said “You hurt my brother’s feelings!”

If I am being honest, seeing Levi stand up for Malachi touched me deeply. Their relationship continues to grow in so many beautiful ways.

During our homeschool hours Malachi is finishing several chapter books each week and doing great! Levi is also working hard at home on his virtual schoolwork and is discovering a new love for Malachi’s audiobooks. He wakes up talking about where we left off in the story.

We have been blessed with a stretch of “simply routine”. Routine appointments, therapies, issues, etc. But there is always an undercurrent of potential emergencies that dances in the background of my mind.

One of the hardest parts of being a medical mom is knowing when to react and when to wait and see. There is a delicate line there. There are certain rules that I have made up in my mind for when I take them into the hospital when they are sick but sometimes issues pop up that could potentially be a big deal. I know when we mention them to providers it is going to lead to a frenzy of panic, imaging, tests, and appointments. Which is often warranted. But knowing that it will lead to chaos makes me really sit and process to make sure it is necessary at that stage or if it should wait.

We had one such issue last week with Malachi. He has grown a lot over the last few months and I have been watching his rib cage slowly become less symmetrical. Both of his hips are dislocated and Malachi has significant scoliosis so there never really is an ideal shape, but it has definitely become more prominent.

We were scheduled to see the orthopedic and spine surgeons in a few weeks and they just rescheduled that appointment to late October. I sent them images of the rib cage changes over email and mentioned it to Malachi’s physical therapist. She was very alarmed and sent us for X-rays immediately.

In the meantime, Vanderbilt surgeons wrote back and assured me that we can wait until his appointment in late October to make the plan but it looks like his scoliosis has progressed to the point of needing spine surgery. This is a big deal and something we have been dreading, but if left untreated it can lead to lung restriction and him not being able to breathe.

This first image shows his scoliosis in 2021. Not too bad (in context).

This next image was taken last week and is obviously pretty bad. Our criteria for surgery was a 50 degree curvature and he was at 45 degrees last October (35 the year before that). I am already dreading that October appointment and bracing for the hard conversations that will have to take place.

Malachi isn’t indicating that he is in pain, and in fact giggled during his X-rays, clearly loving the attention from the pretty techs.

Between schoolwork, therapies, appointments, and soccer we are definitely sleeping hard each night!

The dogs don’t sleep with Levi but they go in to tuck him in each night. He loves them so much!

I am still adjusting to all the recent schedule and life changes. The thing I didn’t account for was how physically sore I would be from taking care of Malachi solo after a summer of having Jake around to help. He is growing and lifting him is getting more complicated. And the mental fog that comes from a lack of sleep and in increase in responsibilities.

Last week I shared a portion of an interview with you from Martin Pistorius. I have been reading his book, Ghost Boy, over the last few weeks and what an eye opener it has been! I highly recommend it to all parents, friends, caregivers, and family members to someone who is nonverbal. Trigger warning- there are some really hard parts to read in this book that talk about abuses he suffered.

Martin was very much like Malachi for years, trapped inside his own body with no way to communicate. He writes about the things he observed about his own parents and I have shed so many tears reading through his perspective.

He wrote a sentence about his father (his primary caregiver) at the very end of one of those chapters and it felt like I was looking in a mirror.

“While I can’t be sure, I sometimes wonder if all these lost hopes and dreams are the reason why a man as intelligent as my father has learned to hide his emotions so deeply that I sometimes wonder if he knows where they are anymore.”

This deep thought made me gasp as it describes something I really struggle with. And I would venture to say that most medically complex moms also deal with this same struggle.

We are required to keep tight reins on our emotions. That sometimes appears like we are being arrogant, fake, and closed off but in fact that is a coping mechanism we have developed to compartmentalize our grief. I am not advocating for his, nor am I claiming that this is a healthy practice. It is not something I set out to do or glamorize.

But it has become a part of our caregiving/parenting (my primary identity right now aside from Christ follower of course) and therefore overflows into my friendships and other relationships. Our children have hearts that beat in tune with ours. My emotions flow directly into Malachi and he often matches them. He is so in tune with my emotions that I have to work very hard to regulate myself, even in life or death emergencies, to be a source of strength and comfort for him. So I have learned to stuff those emotions deep down and process them when I am alone, which is very rare.

“…I sometimes wonder if he knows where they are anymore.”

That was the line that made me really consider if I even know how to find those unhindered emotions anymore. To “feel” the way that everyone else does. After 11 years of learning how to cope with the hard I find myself no longer knowing what normal looks like.

This makes friendships hard. I feel like an alien in “normal” friendships- recognizing that I am not doing it right but not quite sure what right looks like.

Special needs parenting changes you. It is a form of trauma. It is a world of joy & grief, wins & losses, temporary & permanent. It is an isolating world with a language that not many can speak.

I am thankful that I belong to a God who truly knows me. He knows my motivations, my inner thoughts, my deep pains, and my insecurities. He doesn’t affirm them, but instead He refines and purifies me from them. I am so thankful that I am not my own.

Psalm 16:1-2 “Preserve me, O God, for I take refuge in You. I said to the Lord, ‘I have no good besides You.’”

This week I am reminded to seek refuge in Him and not in the dark closets I like to retreat in to allow myself to “feel”. To take all of my failures and fears and lay them down at His feet in surrender. And to trust that this cup He has placed in my hand is overflowing with strength, wisdom, and God’s sovereignty.

Please keep us in your prayers this week as Jake started the symptoms of sickness this evening. It is a matter of time before it hits the boys and usually a common cold will put Malachi back on supplemental oxygen for a few weeks. And lead to Levi’s airway swelling and lots of vomiting from his gag reflex. Join me in praying against all germs!

Sincerely,

Leah