Monday, October 12, 2009

Not the update I wanted to write. . .

After nearly six months of seizure freedom, Avery has had a seizure almost every day for the past week and a half. At first we hoped it was just because she has been a little under the weather, but it seems that perhaps we are facing what we feared the most. Avery's long overdue break from seizures seems to be screeching to an abrupt halt. In just a few short weeks we would have been able to celebrate six months of no seizures and it hurts so badly that we can't that I hardly even know what to say about it.

I spent the better part of two hours sobbing on my sofa and punching pillows last night. I have known for awhile now that she was having a seizure here or there (for at least the last ten days) but it didn't really sink in until last night. So if you've talked to me in the last week or so and I said that things were fine- yeah, I was still enjoying the soft comfy blanket of denial. Watching Avery seize at the kitchen table last night felt in so many ways like the very first time she had a seizure in my arms some three and a half years ago now, except that there was no shock this time around to cushion the blow. I knew instantly deep in my heart back then, before I even knew about tuberous sclerosis, that nothing would ever be right again. And it isn't. Nothing can be right when you watch your child suffer and there's no way to sugar coat that or put a positive spin on it.

Except to say that if Miss Avery has taught us anything in the last four years, it is to never, ever count her out. She has shown us time and time again that she is up for the battle and refuses to give up or feel sorry for herself. She just keeps on keepin' on, and so we have no choice but to follow her lead. We try to focus on the positives and keep things as normal as possible for her and big sissy Kaylen, who is taking this latest setback particularly hard. We try to adjust to our new normal once again while questions about what to do next, fear, and despair threaten to overtake our hearts.

Perhaps, Miss Avery is just going through a growth spurt and we need to do some adjusting to her medication. Perhaps, she still has a bug and her seizure threshold is lowered. Or perhaps she is fighting a nasty beast of a disease that is relentless in its pursuit of her. Regardless, we have no choice but to trust that she will overcome this next hurdle and to pray for her safety and complete healing.

We ask that you join us in praying that these new seizures are just a temporary setback and soon Avery will be enjoying seizure free days again.

1 comment:

Bethany said...

So as I sit here in the quiet of the night with nothing but the whirr of the computer, my heart breaks for you. While this didn't catch me off guard because of our chats this past week, as your friend, it certainly doesn't make it any easier to read and wrap my mind around.

You know we all love you and your family and it breaks all of our hearts to know you are hurting...wondering, hoping and praying that this is only temporary and that her latest cold and a growth spurt are responsible. I know I don't have the words to make it better, but I do have an ear that can listen.

Thinking of you you all!