It’s not coming soon enough. The cure. It has to happen. Soon.
Lily’s hand function is worsening. And believe me when I say it’s not from lack of effort (from her part, or mine).
Another blow: I was called in to a special meeting at school last week from Lily’s physical therapist to learn that Lily needs an ‘adaptive stroller’ for when she transitions into grade school. It’s for safety reasons – the bus starting in K doesn’t have the 5 point seatbelt which she will need (confirmed by the Rett specialist when we were in the hospital on Friday).
Imagine this: a small therapy room at Lily’s preschool where her two PT’s, her two OT’s, her social worker, and I (huddled around a kid sized table in tiny preschool chairs) are going through a catalogue of wheelchairs. Fucking heartbreaking.
So you see, a cure needs to happen. And soon. I don’t know if I can handle watching my child get lifted into a school bus next year.
I hate that you both have to go through this.
There will be a cure! We will help you stay positive! Hugs and love to both of you.
I am sending love and hugs too….stay strong….no words can make it better for you or Lilly, but remember that you are both loved…..what can I do to help you?
Lily takes things in stride, momma, not so much. Draw strength from her — Lily don’t care how she gets on the bus, she’s going to school! Prayers and positive thoughts.
I hate it too. Thinking of you both
Stay strong Christine! Lily will!! Love and Prayers for a cure.