About 2 weeks ago I called Mabel's doctor and requested once again to try a new medicine that I believe will help with her movements and her crying. They have been reluctant to try in the past but I am more persistent now than ever.
Today was day 10 and we are at the middle of the desired dosage.
Today was an almost perfect day.
No crying. Little movements. Not too druggy. Super happy.
And I am hopeful that this could be it, at least for now.
In other news, Nora is still having a pretty hard time emotionally. This weekend proved that time doesn't always heal all wounds. She just can't believe that her daddy left and that he isn't coming home. I feel heartbroken and devastated and don't know how to help her. She is meeting with a counselor and today I bought her a special gift to try and connect with her heart a little more. All the while I feel so lost and helpless in the face of my oh-so-little girl who thinks she has to be much bigger than she is. This is never what I wanted for her and I would give my life to make it different. I hope and pray that she knows just how very much she is loved and how deeply I feel her pain.
If you think about it, please say an extra prayer for her and if you see her, please be extra gentle. She is tender yet distant and I just want her to feel thought about and protected. She's so beautiful and so little...
Today as I spoke to one of the contact people from a local news station I was reminded just how much I love to talk about my girl. Of course I'm passionate about her, but I'm also passionate about so much more than that.
Genetics, science, research, funding, awareness.
It's so important. So big. So essential.
I want to remind people of some very key things in this life that I lead:
I know that my daughter will not live. And very likely in my lifetime there may not be a cure for her disease. But by the time that her siblings have children, or their children have children I would hope that there is a big enough movement of people who have stepped up and made a difference so that there may be a really good chance that rare disease is completely eradicated one day.
That is the goal.
It is big and even seems outlandish but it is not impossible. We live in a world dominated by people who are incredibly smart and incredibly wealthy. There is just no reason that children in our country or in any part of our world for that matter should be dying from rare disease. And they sure shouldn't be suffering because of them while they are alive.
I told Mabel's story today in a short recap over the phone.
I will tell her story to the newspapers, on the radio, on local or national news.
I will tell her story every single day for the rest of my life to anyone and everyone who will listen.
Because Mabel's life matters. It matters big.
And I will never let it be in vain.
We are thankful for Noah and the opportunity he is giving us to raise awareness and spread the word about batten disease. But let me remind you that we created "Mabel's Able" to spread awareness for all rare and undiagnosed diseases. I have not lost sight of that and will purpose to continue my mission as long as I have the energy to do so.
Thank you for your unending love and support. We are always so grateful...
Updates to come...