Two children with Batten Disease died in the past 24 hours.
At least two more (that I know of) are actively dying as I type this post.
Several others are dealing with hallucinations, terrible fear and anxiety, and hours of non stop seizures.
Today I climbed out of bed long enough to get the big kids ready and off to school, feed Mabel and scroll through facebook. And then I took my girl and went back to bed.
We didn't sleep, of course. Once she's up for the day she is up for the day. But I covered up and I held her close.
On days like today the anguish that I feel is all consuming. It's debilitating. It's heart breaking and it compresses me. On days like today when I am reminded of the sadness that is to come, of the very real loss that others are feeling in the exact moment that I'm living in-
I can hardly move.
I've done my best to survive and even live with some valiance since Mabel's diagnosis. Life has tried hard to stop me from doing that or to at least slow me down. I have pushed forward, and charged through so many things that have led me to where I am today.
But today, and days like today, I feel helpless.
My mouth is dry. My eyes are tired. My cheeks are wet with hot tears. I can't pay bills, I can't make phone calls, I don't want to return texts. I don't want to shower or get dressed or function 'normally.'
I just want to lay right here and hold my baby.
Nothing, and I mean NOTHING seems important outside of these 4 walls today. Nothing even compares to the amount of deep empathy and sadness I feel so far inside of my gut.
For the past two nights she has cried and cried. She started in again this morning but rather than my usual frustration that I feel, not knowing how to help her or how to make the noise stop-I literally got on my knees and thanked God for the noise that she is making. For the breath that she is breathing.
I am at peace with Mabel's life and in turn, her inevitable early death.
But that doesn't mean that I don't hate this disease and that I don't long for as much time as I can possibly have with her. I don't want her to suffer and so there are days that I pray for mercy. I beg for her to not have to endure this disease for years to come and I beg that she would skip right over the horrifying changes that are probably to come for her.
But on the days when she is 'good,' smiling, responding, even screaming-I am thankful. Thankful for the time that she is here and the ability she has to do those very simple things.
The decisions that batten families face at the end of this disease are literally too difficult to even comprehend, let alone write about. They are painful and excruciating. The days that lead up to a child's death after battling batten disease are torturous. Some die peacefully, and beautifully. Some suffer right up until their last breath.
For the families, and especially the parents and caregivers there is a sense of relief after their loved one has passed away. But with that sense of relief comes this intense amount of guilt for feeling that way. It's all an awful cycle that doesn't end at death. As I've been told numerous times, Batten disease takes everything from these families; their loved one, and so much more.
Please pray for our batten community today and always.
I think what a lot of people forget is that just because I answer you that "Mabel is doing good," when you ask...it doesn't mean that it's all good. The pain never escapes me. What we feel for the other families that we love and are walking this journey is an unspoken amount of deep empathy; painful even. They need our support and our prayers.
Wrapping you up in them today, friends, with so much love.