It has been an up and down few weeks as we continue to navigate medication changes with Malachi. We will follow up this week with his urologist and also do an MRI to check his shunt, but the seizure clusters have been slowing down a bit and he has been more mentally clear over the last week.

The boys had fall break last week (Jake’s was the week before) and we spent most of it at the farm. Georgie the monkey learned how to push Malachi’s wheelchair, much to his amusement. And a sweet new baby zebra was born on the farm.

It truly is Malachi’s happy place. And Levi just doesn’t realize yet what a special privilege it is to play with exotic animals anytime he wants to.

Levi had some testing done last week to test for dyslexia as well as some other academic things. He did great on the first portion but then we took a break for lunch, hoping that would help break up the session. Unfortunately it seemed to have the opposite effect and he wasn’t able to focus well on part 2. We will find out the results soon and go from there.

We celebrated test day/Fall Break with a trip to Chuck-e-Cheese. This was Levi’s first time and his excitement was so cute to see. And Malachi got a case of the giggles, thoroughly enjoying the competition in the arcades.

We are still in the middle of some pretty big battles right now, with health issues and insurance being at the top but several smaller battles ready on deck. With the boys back at school this week I will have my parking lot work hours back, three hours each day to sit at the boy’s school and do remote work from my car.

Last night I went down to the filing cabinet to dig out some paperwork and I stumbled across some things from high school. As I looked through these old pieces it felt like I was looking through a different person’s life. I laughed at the carefree things in that file- a girl with such simple dreams and priorities. And I grieved over the relationships lost and the unmet expectations of that young girl.

Next I found file folders with all of the medical records from the night each boy was born. I took a moment to read through a few pages and the memories started to flood in. Tiny little ink footprints on pages- attempts from the nurses to create normalcy in such a foreign and dark world.

As the night went on I was gripped with such a sense of loneliness, living a life that is unrelatable to others. I have a file cabinet full of chapters of a story I haven’t written but am a main character in.

I closed the file cabinet and went back upstairs to medicate Malachi. And as the night went on that pang of loneliness grew inside of me and I could feel an emotional breakdown coming on. So I leaned into it and let myself have a moment to mourn.

Malachi stayed up late last night and as I scrolled on my phone I stumbled upon a blog post from 4 years ago that was such a needed reminder. Maybe this post from the past will speak to your heart as well.

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October 19, 2021

On Thursday and Friday Malachi spent a few hours at school at his request. Levi and I went into town and ran errands while we waited to pick him up and I tried to catch up on all the things that are exceptionally hard to do with a wheelchair and another toddler in tow.

Simply getting Levi out of the car and carrying him into a store in under 30 seconds was such a unique experience. I just felt so…normal. As we wheeled down the aisle with Levi in the cart I had people make eye contact with me and stop to interact with Levi. They complimented his hair, asked him his age, and smiled with their face and their eyes. I know that sounds like an odd thing to mention but special needs moms rarely get eye contact from strangers. We get awkward shuffles out of the way and we get lots of well meaning comments (“Wow you have your hands full!” or ”God gives special children to special people.” etc)

The anonymity I felt this week as just a typical mom was really refreshing- but then when I realized it was refreshing I felt a pang of guilt as if I were cheating on my special needs momma self. I love my unique motherhood journey and I have accepted the role that God has placed me in, but the social encounters this week really made me think.

I have been thinking specifically about relationships and how isolating our world can get. We have a wonderful community support system but sometimes it feels like we have worn out our welcome and we tend to see friends slowly start to drift away. Friendship with our family is a lot of work and we tend to ”bleed” onto those around us without intentionally doing so. I know this potential for friendship destruction exists so I catch myself trying to bubble wrap my friendships and not let always see the hard parts of our lives. I shield them away for fear of losing another friend, but in turn that leads to a superficial friendship that doesn’t last.

The psychology of rejection is something that has a grip on me. I don’t know if any of you share that same struggle. Each time I think I have overcome I am reminded by a circumstance or a memory that I have not fully healed from the many moments of rejection in my past from people I loved.

But I am coming to terms with the idea that God never intended us to blend in. And He provides a continual reminder in His word that our reliance should be placed on Him instead of others.

I can apply this thought to my family specifically, as God has clearly written us a novel that I have never seen in a bookstore.

But I can also apply this thought to the way we are called to live our life. When we strive to fit the mold of the world we will never be fulfilled. I think about those encounters with strangers in the store this week and how yes, it was refreshing but in the end still so unfulfilling. The devil used that temporary high in my heart to plant potential seeds of bitterness.

Matthew 7:13-14 ”Enter through the narrow gate; for the gate is wide and the way is broad that leads to destruction, and there are many who enter through it. For the gate is narrow and the way is constricted that leads to life, and there are few who find it.”

As a child of God I have chosen to walk the narrow road. It seems to foolish to know that I acknowledge that and then I complain about how narrow and sometimes isolating that road can be. As I reflect back on relationships that have dissolved I can’t ignore how toxic many of those friendships were in my walk with the Lord. Sometimes we foolishly mourn over branches that God has clearly pruned from our life to allow healthier fruit to grow.

Instead of looking for eye contact from strangers for encouragement on the road I need to make eye contact with God- because in the end that relationship will never dissolve. God welcomes my mess as He recognizes that He is the one who entrusted me with it.

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Sincerely,

Leah

This entry was supposed to be posted on Sunday night but clearly that didn’t happen! There are certain seasons where the complicated nature of our world feels like water resting just below my chin, distracting me from other things. We are in one of those seasons.

A big part of being a medically complex mom is using my imagination to pretend like life isn’t THAT chaotic. We move through each day in our “normal” level of chaos and do our best to not look left and right…because that’s when we realize how abnormal our normal truly is.

When realities disrupt my imagination I am forced to look complexities in the eye. And then it usually leads to a “If You Give A Mouse A Cookie” situation, a book that tells the story of a boy who gives a mouse a cookie which leads to a continuous circular chain or requests.

After Malachi’s spinal fusion earlier this year he lost the ability to urinate on his own. We have been managing his retention decently, hoping that his ability would return as he recovered from surgery. But here we are 6 months later and the problem still exists.

I don’t know if it is nerve related or something else but either way it needs to be investigated and treated. Urology is a new specialist for us and starting with a new doctor is absolutely exhausting. Summarizing Malachi’s medical history is like reciting the Declaration of Independence. And each of Malachi’s specialists tend to focus only on their specific issue and the solutions often compound other issues.

The urologist decided to try a new medicine that works as an Alpha blocker, allowing him to void more easily. In a typical patient this would be a great plan of action. For Malachi, slight changes in medications can trigger a domino effect in his world and de-rail so many other things, and this round is no exception.

Urology asked us to reduce his medication for his secretions. But reducing that medication caused his secretions to rest at the base of his throat and created some pretty intense respiratory symptoms and horrible oxygen levels. So that led to a visit to the Pulmonologist to explore other secretion management options.

Urology also ordered several tests and appointments, so off to the hopsital we went for imaging and a rough experience with the Children’s Hospital- it is too raw for me to get into right now without getting frustrated all over again. But my heart broke for my Malachi.

We slowly introduced the new medication and when we finally reached full dose Malachi’s epilepsy flared like a fire breathing dragon. This weekend the seizure clusters began, having over 40 seizures on Saturday.

This led to questions about it being strictly medication related….or exploring the idea that his disconnected shunt could also be a factor. I reached out to the Neurosurgeon to ask about an order for imaging who then passed me to the Neurologist. I have been trying to get help for several days now and each of his specialists seem to be passing the issue on to the next. And in the meantime Malachi’s seizure clusters still very much exist with dozens of episodes every day. And an exhausted Malachi.

So when do we sound the alarm? When do I decide to take him into the Emergency Room and work on getting those tests STAT? I feel like this is a urgent situation but when I am presenting it to his specialists they don’t seem to share my level of concern. Do I enter their mindset or stay vigilant in mine, recognizing that no one knows my son like I do.

This, ladies and gentlemen, is called the medical mom dance. Always trying to decide if our chaos is chaotic enough to warrant a true emergency. And recognizing the regret that can easily take root should we not make the right decision for our warrior. But also recognizing that taking him into the Emergency Room could potentially introduce him into something entirely new that will lead to new and serious medical issues.

Malachi is very tired and not himself. When we medicate for new symptoms one of our biggest watchful concerns is whether or not we are trading “quality of life” for symptom management. We are hoping this is a honeymoon phase from introducing the new med and he will regulate soon. But until then we have to limit our interactions out of the house and try hard to not overstimulated his brain.

In addition to that chaos we are now receiving the medical bills from his $1.8 million Vanderbilt stay. Last week we received a bill for over $32,000. We have waiver programs to help us cover what insurance won’t but the phone calls to get the ball rolling and prevent it from going to collections are taking up a large portion of my to-do list. Just to stay compliant in these waiver programs I have to meet with case managers at least once a month, either remotely or in person in addition to all of our specialist appointments which are each an hour away.

My brain is fried. I don’t often reach these levels of exhaustion- physically, emotionally, spiritually. But we are here and I am up to my neck in it.

Please pray for Malachi. He has had such a hard week. And when we don’t have control of his seizures I am uncomfortable sending him to school. He is missing out on a lot right now socially. We attempted the rodeo this past weekend and Malachi had over 20 seizures in less than 2 hours, prompting us to head on home.

We have been trying to make up for the pause in his social calendar with visits to the farm to see his animal buddies. Tonight, Humphrey the baby camel is on the top of his favorites list. But Georgie the monkey and him have also bonded this week over his many attempted (but unsuccessful) robberies into Malachi’s wheelchair bag. Oh Georgie.

And lots of soccer games!

We have also been trying to entertain Malachi at home to keep him engaged and joyful as we sort out his new complications. We used some Kohls Cash to buy a tennis ball launcher for the boys to be able to throw the ball for the puppies and it has been so much fun.

Quick Levi story time. This one has been making me laugh…

Over the weekend I commented to Levi that we needed to go and grab our jackets. He said “Mom, did you know that some people call them jackETS and some people call them jackASSES?” (Obviously not a word that we use in our household)

I asked him where he heard this info and he told me that a kid at school had told him that. We corrected him of course, but hearing that word come out of his tiny 7 year old mouth did catch me off guard.

This week I am praying Philippians 4:7 over each member of my family.

“And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

I love the truth that the peace of God is like armor to a weary heart. Its purpose isn’t simply to provide comfort but to prevent…to guard from further wounding and disruption.

I pray that God’s peace will overwhelm Malachi in those scary seizures. I pray that his heart will be guarded from the chaos. And I pray that same prayer over our family, as each of us process the chaos in our world in very different ways.

God hasn’t given us an easy path to walk, but His presence along the way is a promise I cling to.

Sincerely,

Leah