The last week has been horrendous.
Mabel is back to crying almost non-stop with no break and nothing helping. Last night we were awake several times while the rest of the house was sleeping and I was so tired that my bones were literally aching. I feel like the emotional exhaustion takes the largest toll on me until the actual physical exhaustion kicks in and I realize it may be winning after all.
Caring for Mabel is so rewarding, but it is also oh so tiring.
And at the end of the day, it's just she and I.
My girl and me.
There was such a huge outpouring of support yesterday for Rare Disease Day! I received well over 100 photos of people wearing their jeans to support the cause. These are people who not only love Mabel but who have followed our story and invested their hearts into the rare disease community as a whole. I am honored and humbled to be part of something so monumental because truly, great strides are being made. It's incredible.
It may seem like an insignificant gesture to simply wear your jeans and take a photo to send our way but my heart was so swollen by the end of the night. I was overwhelmed in the best of ways and to be honest, on days like today, that is what continuously pulls me through.
Sometimes it's breathtaking to be holding my sweet girl, draped over my shoulder as usual, and to realize that I am simultaneously holding life and death in my hands. We are all dying, absolutely. What is different with Mabel, essentially, is the simple knowledge that is happening slowly and yet consistently inside of her. Nora and Braden asked a lot of questions surrounding rare disease day yesterday and I answered them very honestly and the best I could. When trying to explain to them about Mabel's brain it became a little complex but I believe they understood as well as they can.
For people who do not have batten disease, our brain receives a signal that it is able to send out to each part of our body in order to make that body part function properly.
Body-be still! be controlled!
For someone like Mabel, who has batten disease, the signal goes into the brain but ultimately it gets stuck there causing a clog inside. Basically Mabel's brain is like a garbage truck that isn't doing it's job; it's not taking out the garbage. Although I didn't explain it to them, I think that they understood that at some point her brain will get 'overloaded' and shut down. And it's true.
It just will.
I hold her tightly each and every day and I focus deliberately on how to live with her fully; making each day better than the day before. What that means for me may look different than it would for some families in my position but basically I try to just live very normally. I do my dishes, fold my laundry, sing her songs, laugh at jokes, make lunch, workout, and even find myself feeling frustrated often. I have made it a point not to put so much pressure on myself to live this perfect life with her just because I know she won't always be here. I don't want to create a 'perfect' life to live during the duration of hers, I just want to live a beautifully raw and realistic life through and through; whether she is here with me or not. I believe that is what makes every day with her unique and special because it is, down to the nitty gritty, exactly how I would be living it even if she were a healthy, growing and developing child. I have fully accepted her life and in turn, the idea of death isn't harmful or frightening, just part of her.
Like all of us.
I spent time this week talking with a friend for hours about medicine, mental health and physical health, doctors and all sorts of other things. Throughout our conversation there were many times when I felt thankful to be able to speak about such things with the people in my world. I'm very aware that this kind of topic is difficult and even uncomfortable for most people. But in my life everyone has done a really good job of adapting to the topics at hand, and accepting that it gets talked about very openly and commonly. The people that can't handle it are not around and although it's sad to me in some ways, I also understand that. It's a very heavy life I lead.
All in all I suppose I'm ending this night thankful for the worldwide awareness that was raised yesterday. It has always been my greatest intention to put a face to rare disease so that when you saw Mabel, you just couldn't forget.
I was really proud yesterday to see how incredibly loved she is and how wildly inspirational her life has been and will continue to be to all those who see and know her.
Mabel Audrine shines a light in this world that is unlike another.
I'm so lucky to be her mom.
So while ending this post with eyes half shut (at 8 pm I might add), I want to say once again,
For loving us, praying for us, supporting us.
For calling, texting, sending mail, email and showing up.
Thank you for standing by us in the good times and bad and helping us make a change in the world that will one day mean that no child will have to live with and die from a rare disease.
You give me strength and I'm grateful.
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