It didn’t take long after the Girl in Charge was first diagnosed at 6 months old for me to learn the hard truth- that there was very little I could do to alter the trajectory of her life. 

Yes, I could care for her and love her. I could take her to her doctors’ appointments and arrange her medical therapies. I could create charts and follow protocols and be vigilant regarding her care every moment of every day… but beyond all those things that any mother is willing to do to ensure the best outcome, I had very little control over what that outcome would be. I had to submit her life into God’s hands, whilst loving her through the hard stuff I couldn’t fix.

Like Autism, Charge Syndrome has a spectrum, and each child born with the syndrome can be found anywhere on that spectrum. No two children with Charge Syndrome are exactly the same, so there’s no real way of knowing what challenges your child will face.

There’s a high mortality rate amongst babies with Charge Syndrome. Many of them are born with heart defects, collapsed nasal passages, and kidney failure. For those who are blessed with the miracle of survival, many go on to overcome hurdle after hurdle, learning to walk and talk and read and write. Some even learn to drive cars and are able to go to college. Their lives are not easy- the syndrome is always with them, but many of them thrive.

But my Girl in Charge lives life on the other end of that spectrum. Yes, she is medically mild- we are so grateful that in her first year of life she didn’t experience a single one of those medically frightening symptoms. But she is developmentally severe. At 8 years old, she has limited hearing and sight, cannot talk, cannot read, cannot write, and has very few ways of communicating. 

But over the years, I have always reassured myself with the fact that at least she wasn’t medically fragile. At least she wasn’t in and out of the emergency room all the time. At least she wasn’t on a long list of meds- in fact, she wasn’t on ANY meds. It was amazing. 

I knew, in the back of my mind, that all of that might change once she hit puberty. But for now, I was grateful to have my medically mild child, whose health wasn’t one of the many things I had to worry about.

But that all changed about a month ago when I stood in the doctor’s office and heard his words come barreling down like a sledgehammer to my heart.

Epilepsy.

I heard the word over and over again in my mind, as though my psyche was trying to place it in its correct context.

Not only does she have Charge Syndrome, but she also has epilepsy.

The truth is I wasn’t surprised. I had suspected for several months that she was having seizures. But it was hearing the actual word – Epilepsy- that rocked me. I could no longer hold on to hope that I was wrong.

Many people hear the word seizure and envision a grand mal seizure. But that kind of seizure is the rarest form. Most people with epilepsy don’t have them. Most seizures are much more subtle. And some are hard to spot at all. 

I know now that my daughter’s seizures started about 2 ½ years ago. They didn’t look like seizures back then, it looked like she suddenly was losing consciousness. She would be sitting upright and then suddenly drop to the ground. It happened mostly when she was sitting, but occasionally when she was standing. And it was scary every time. She would just lose complete control of her body and she would hit the ground.

Right after these episodes started, I took her to the cardiologist and the neurologist, both of whom ordered every test in the book – EKG, EEG, Ultrasound, MRI, etc. The tests took the better part of 3 months to schedule and administer. And then a month afterward, we finally got their collective opinion which was that she had vasovagal syncope. 

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In other words, she faints. 

That’s what they said. They said she likely had chronic low blood pressure which caused her to faint, and that she simply needed more fluids and more salt in her diet.

So, despite the fact that it was such an inconclusive answer, we followed their protocol. For over two years, we’ve been pushing the water and putting extra salt in all her food. But nothing seemed to help. Despite our best efforts, she would still faint.

But then a few months ago, her fainting spells started looking very different. Not only was she losing consciousness, but her eyes would roll back, her face would contort, her body would stiffen and sometimes, it even looked like she was shaking. 

I knew exactly what I was seeing, but I hoped that I was wrong. And I clung to that hope for weeks while I waited to finally get the Girl in Charge into the seizure specialist. But he confirmed my fears with that horrible word.

Epilepsy.

I didn’t start crying until I got to the car. I do that. I have emotions of steel when I’m standing in front of the doctor, but it’s later when I try to think of the words to use to tell someone I love, that it all becomes real. 

Fittingly, we were in the middle of a torrential downpour. I had to push the Girl in Charge in her adaptive stroller through the deluge and race to get her in the van before either one of us was completely soaked. But once we were both in the car and I was waiting for the windshield to defog, I imagined myself telling my husband the news and that’s when I could no longer hold it together. In that moment, I felt as though the heavens were weeping with me. 

It broke my heart that I had to tell my husband (who, once again, was out of town- the poor guy always seems to hear about the big ones over the phone) that our sweet little girl, who already deals with so much in life, has epilepsy. 

I managed to drive my girl back to school and put on a brave face long enough to get her inside. The next day, after my emotions had calmed, I notified the school staff of the new diagnosis, and they immediately started a seizure log and have been wonderful about watching for signs and keeping her safe. 

The Girl in Charge gets meds twice a day and we do what we can to manage it. But I know the truth. Epilepsy rarely goes into full remission. And as children age, the seizures usually get worse. I now know that epilepsy occurs in about 40% of children with Charge Syndrome. We’ve been lucky in so many ways, until now. And again I am reminded that there is very little I can do to alter the trajectory of my daughter’s life. 

Once again, I must tell God, I submit.

I can’t fix this. I can’t control this. I can’t cure this. 

I submit. 

The one side effect that her meds have is that it makes her irritable- even more irritable than she already was. Will she lash out at me? Pull my hair? Scratch at my face? Try to throw herself out of my arms? In moments of desperation, will I scream a prayer to God to give me the physical strength I need to keep her safe? Yes. I know all of those things will happen because they already have. 

I submit.

Will her seizures get worse? Will they threaten her life? I don’t know…

But, I submit.

She is in God’s hands. She will have the level of health and well-being that is only His to give. I am nothing but an instrument in His hands. I cannot control this. Thy will be done, God. 

I submit.