Please Pray For Us

Suddenly, despite my single mom status, and the fact that I was already the parent of a child with significant medical needs, The Boy Child and I were thrust into a therapy program so intense, that I nearly lost my house due to all the hours and money I was spending on his therapy.

Speech therapy, physical therapy, developmental therapy, occupational therapy, sensory therapy, behavioral therapy, aquatic therapy, and eventually nuerobiofeedback; an hour for each therapy, each one twice a week. I spent two weeks putting him through the Wilbarger Brushing Therapy protocol, which if you have any idea of what that is, you know it’s no joke. I went above and beyond the gluten free diet that The Girl Child and I are on for our genetic illness, and I removed dairy, artificial colors, preservatives, salicylates, and more from what he ate.

 

I would have done anything to find my baby! I had brought him into this world, and no one, NO ONE, was going to tell me that we couldn’t find him anymore.

He was in there, I just knew it. And nothing else mattered except saving my son.

When he was three years old, he started preschool with the rest of his peers; completely caught up cognitively, and showing absolutely no signs of a delay.

I had found him, and he was going to be fine.

Or so I thought.

He is five now, and things have been slipping for a while.

Over the last year and a half, he’s had a few physical set backs that could all be chalked up to our genetic disorder, but cognitively, something hasn’t been right. I watched him back track in ways that scared me, but being on medicaid, I was turned away by every specialist that our pediatrician thought I should take him to see; or he was put on waiting lists that were indefinitely long.

Weeks turned to months, and months turned into fear. Fear, because I could see him slipping away again, and terror, because I couldn’t do anything to stop it. And aside from the fear and terror, confusion became a constant companion of mine.

Why, did he seem completely fine some days, and other days, seem to be living in a world beyond my grasp?

What was going on with my child, and why would no one help me?

I begged the doctors. I cried in their office and I pleaded for my son. But the value of my medicaid dollar wasn’t enough, and each time, we were turned away.

To further complicate things, once you have been diagnosed with a rare genetic illness, it’s a lot easier for the doctors to blame everything they don’t want to take the time to figure out, on the one diagnosis that has the ability to explain away the un-explainable.

But I wasn’t going to accept that, and I wanted answers. I knew that medically, our genetic disorder did not have the ability to affect him cognitively, and so whatever was going on with The Boy Child, was something else entirely.

When I got married and gained “real” health insurance through The Guy’s job, I decided that I was going to get to the bottom of the mystery, and I began making appointments with the very same specialists who had turned The Boy Child away when we were on medicaid.

But, then, before I even had a chance to take him to those appointments, his health took a dramatic turn, and it came in ways that the doctor’s could no longer ignore. Our appointments were moved up, and because he has a history of mild cardiac issues, our first stop was to the cardiologist.

But surprisingly (and thankfully), his heart checked out completely fine. In a glimmer of good news, all of his past cardiac issues seemed to have resolved completely on their own.

His heart was healthy, and I breathed a sigh of relief.

Yet the next day, a physical display of a very serious problem broke open the flood gates, and I saw in an instant, the piece of the puzzle that we had been missing.

I immediately knew.

I took a video of the event, and rushed him to the doctor. Once he saw the video, we were immediately sent to see a neurologist at the children’s hospital.

A few days later — last week — The Boy Child was diagnosed with epilepsy.

Seizures in his frontal lobe have been ricocheting through his brain for quite some time now — most likely when he has been sleeping — and as the neurologist has explained to us, are most certainly the cause of all the issues that he has had over the years. They are also a solid explanation as to why his skills and cognitive abilities have been so scattered throughout his life.

My initial attempts at putting him in therapy helped to bypass some of his damaged electrical circuits just enough to get him caught up, but eventually, as he grew, so did the issue in his malfunctioning brain.

And I’m not really sure how I feel.

I’m thankful for the answer, because now I know what we are working with. There comes a bit of peace in finally solving what seemed unsolvable, and hope that he can find treatment in the diagnosis.

But, I am heart broken that since I couldn’t afford “real” health insurance, it took so long to figure this out.

I fear that he may have permanent damage to his brain because of it.

I am also devastated that this could have been a direct result of his father hurting him when he was just mere months old.

There is no question that I feel guilty that his seizures had to progress to the point of him actually collapsing in front of me, physically seizing, and nearly losing his airway, for anyone to realize that all of his scattered cognitive skills, had been quieter seizures all along.

And I’m terrified because he is now seizing almost every day.

When your child gets hurt, you run for an ice pack, or a bandaid. You scoop them up and you cuddle them; letting them know you are there and doing your best to fix what is wrong.

But when your child is seizing, you are helpless. You can’t crawl into their head, and you can’t put a bandaid on their brain.

I can’t comfort him in the ways that I’d like, because when it’s happening, he doesn’t even know that I am there.

But here we are, and I can’t change it.

The Boy Child and I are about to embark on a series of tests, hospital visits, and procedures to try and pinpoint exactly where the seizures are coming from, why he is having them, and how we can fix this.

At this point I simply cannot fathom the work that needs to be done, the time commitment involved, and financial devastation that this is going to have on my family. I’m spending entire days at the hospital with him, we have already racked up close to $15,000 in uncovered medical bills, and The Guy and I haven’t slept a full night in weeks.

I thought that I had finally reached the good life, and now suddenly here I am, right back in the trenches.

But I guess, if there is anything that I have learned from this crazy life of mine, it’s that this too shall pass.

This will pass.

But for right now, I need to find my son, because he’s in there, and he needs his mom. So, today I will focus on strength, and the road towards recovery.

Please pray for us, because this is a new path for me, and right now, I’m not feeling very secure in my footing.

Please pray that I can fix my baby.