Apr 20 2021
News broke yesterday that the human clinical trial for Alexander disease has officially been posted online. Though I’ve known about this for months, every time information is released publicly, I am met with a mixture of emotions.
I should be elated that a trial is happening. I should be excited and hopeful that this is it - that this will save my daughter. The truth is, I’m hurting.
I’ve spent all of Jordyn’s life focusing on how to help her that I’ve forgotten how to care for myself. I lost myself in the endless fight to make sure Jordyn had everything she needed. I got so busy that I forgot to grieve. I didn’t take the time I needed to really sit with the emotions that come with being told your child will die much too soon. It’s a journey with many hills & valleys.
I have prided myself on always being positive. I’ve always remained hopeful and always did my best to lift up those around me. I guess it’s just now catching up to me. I’m seeing how much Jordyn has lost and my heart aches for her. She’s so very happy and loves life, but as her mother I can’t help but feel frustrated at the hand she has been dealt.
She never asked for this. It’s not fair that the world can just forget that she’s in a wheelchair and needs certain accommodations to do things that literally everyone not in a wheelchair can do. It’s so frustrating that we have to teach the world how to include our daughter in normal every day activities. It’s exhausting having to always think 2 steps ahead because where you are going likely won’t be handicap accessible.
Despite everything that’s stacked against her, Jordyn makes the most of every moment. She never complains and does everything with a grateful heart.
Comentarios