asking for prayer as we navigate the dim road ahead

While I do share insights into the heavier side of loving and living beside a child with catastrophic epilepsy, I don't often ask for prayer specifically. Over the years I've come to believe that those who need our prayers will come to mind, if we'll only allow our hearts to listen. I know that our family comes to many a' mind and we are covered in prayer frequently. 

But this week Trevor had his largest seizure to date and to be frank, it was terrifying and paralyzing. While we didn't have to administer rescue meds, as I prepped them I was thinking, "This is it. This is the one. Oh God..." 

My knees shook for a long time after it was over. It was ironic that I had to ask Trevor to give US time to recover after he came back to us. The seizure struck while we were in the middle of a folksong. He loves music and wanted to keep singing, meanwhile his brother and I were still reeling. The Diastat was still hanging in my outstretched hand. Still, he wanted to sing his song. The post-ictal phase did hit him a few minutes later and he spent the majority of the day resting on the couch. 

Our plan has been to spend this year evaluating and trialing various alternative treatments while we consider a third brain surgery. The surgical option recommended by the neuro-surgeon is to complete the hemispherectomy by disconnecting the little remaining sensory motor cortex tissue. While a small surgical option as compared to his first surgery, the potential losses would be much more significant than the first time around. We know that he would lose all of his reading abilities. We've worked hard to get him reading at a 1st Grade level. He would lose loss of his leg and arm, though the gross motor functionality could return with intensive therapy. He would lose the function of his right hand/fingers permanently. He could lose speech. This is my personal greatest fear. He has so much to say and what he says is so precious. To lose that... The potential for hydrocephalus is greater with each brain surgery. This would be his third. All of these considerations, plus more, and we still could only "hope" for seizure freedom. As you can imagine, this decision is weighing heavily on us. I have, literally, been sick over this. Trust me when I say, we know what it could mean for him from all sides of this decision. There is nothing that others might consider which we have not. As I stand here today, I am just not sure we're brave enough for another surgery. But then I wonder if perhaps the brave choice is saying no and letting him live as he is; making sure that each moment he has is as meaningful as possible.

In the meantime, there is a study Trevor qualifies for at Boston Children's Hospital. It is non-invasive, but would require us to be in Boston for daily treatments for at least 10 days, likely more. It's a huge commitment on us in so many layers, not the least of which is emotional. While we're within commuting distance to Boston, it is not an easy commute. Jonathan could not afford to take the time off to go with me. The idea of making that commute alone is frightening. Since his relapse I've had to pull off the road three times due to a seizure emergency. I can't image being in that situation on the side of 93! This is why I've put off looking into this treatment further. Until now. Until this last big seizure. If there is a chance this could help him, I have no choice but to go. I did ask his neurologist to give me an idea of success rate so that I can prepare my heart in advance. She promised she'd get back to me.


Back to my initial thoughts. I don't often specifically ask for prayer, but I'm asking now. We need prayer as we navigate these very heavy decisions. The road ahead is light-less from this point of view. We need prayer as we move into acceptance that seizure freedom may never be ours again. We need prayer as we continue to live beside and love him on this journey. A heart felt thanks to those that have followed our journey and cared for our family in big ways and little. It is of no little comfort knowing there are people who care.