I cried alot yesterday.
I cried for Val and the incomprehensible loss that I know she's feeling-again. I cried for myself and the inevitable knowing that I will face the same some day. I held Mabel and sobbed over her and as I did she laughed in hysteria. I held her tiny head in my arms and did the fist pounding toddler cry, begging God to tell me "Why this?" "Why my child?" "Why Val's kids?"
"It's Not Fair!"
It really is not fair. It really is sickening and makes me feel gross and sad and out of control.
There's this thing with mom's who are caring for their children knowing that inside of them is a beast of a disease just waiting to cut loose. It's a strength inside of a grief.
It is it's own entity.
So you love hard every day. You care for this child like that is your only purpose. You wake up knowing it could be the last day you have. And you grieve so deeply in it all.
People don't understand that. They think that because your child is here and you can physically touch them, hold them, smell them...that you are fine and so are they.
They don't understand the loneliness and the burden that accompanies each and every move that you make. They can't process any part of what goes on inside the mind and spirit of a mom whose child's disease is fatal. They also can't understand that every single time another child dies that we have watched struggle through a rotten disease, we grieve that too. Almost as deeply as if they are ours, because in a sense, we understand the intimate determination and suffering that goes along with the life and the death.
Some days I imagine that the relief and sadness I will feel at end of Mable's life will be so conflicting that those feelings alone will kill me. The guilt of having them will drive me to the edge.
Simultaneously, it doesn't make sense and yet they exist together.
When Val called 2 nights ago and I heard her voice on my voice mail, I knew without even calling her back that Stevie had died. My stomach tied the 'death knot' that I have sadly learned to recognize. It's as if, because they have a 'disease', you expect it to hurt less. Every single time that a child that I love dies from a rare disease I feel the same shock, sadness, heaviness, vomit-induced sickness. It's not something you become accustomed to. It isn't something that is easier because you know what is going to take their life.
None of it makes sense.
There isn't a padded cushion to fall into. And death is death.
I think aside from death, the anticipation of death is the ugliest monster around. I try, just like all the other moms of our zebra kids, to put it aside and live day to day with my girl (and the redheads) like it's our last. It's not something that I want to focus on or think about.
But then it rears it's ugly head and you can't help but stare it in the face, whether it's your child or someone else's. Death is everywhere.
It's something that I am sick and tired of telling my big kids about. They know more than they should and they are so graceful but it is just not the way I want it to be. They feel loss too; substantial, devastating loss. They know that their sister has a disease and what that means. I haven't sheltered them from it or protected them because, quite honestly, it's their life and that would be unfair. They deserve to feel what they feel and have an understanding of why. But it doesn't make it easy and I'm just over it.
Today, I am angry with death.
And I'm tired.
And I'm oh so sad.
Hoping to pull it together soon and be strong for the most graceful, beautiful, most amazing mom I know.