“Mommy, I don’t want to have this disease.”

“I know honey, I don’t want you to either.  If I could have it for you, I would.”

“Mommy, if I didn’t have this disease then I’d be able to go outside and play.”

Breaks my heart.  No four-year-old should be mature enough to know that some kids can’t play outside.  Or understand that they are just a little bit different than most of their friends at school.  And no parent should have to make sure their child understands that having a disease is not the child’s fault, or the parent’s fault, or anyone’s fault for that matter; that sometimes bad things happen to good people, good children too.  I cannot even imagine what goes on in her head and all we can do is hope that she will emerge from this without any remorse and/or guilt and can move on.

She’s been having a really hard time behaving lately.  Not sure what everyone understands about prednisone, but in adults it can cause severe depression.  You can imagine that a four-year-old doesn’t have the emotional maturity to deal with all the feelings she must be having.  Instead it comes out as rage.  And it breaks my heart that my little girl has this for childhood and there is nothing I can do to change that.  The amazing care-givers at St. Vincent Childlife department help her so much, I only wish I could pay them to work with her daily.

We are humbled by all the amazing donations people have made to CureJM in the last few weeks.  Cannot thank everyone enough for all their love and support.

 

Anyway, enough depressing-ness, all in all, we are still on a good track for her health wise.  She is running, jumping, almost reciprocating stairs, and so many other things she could not do earlier this year.  There is much to be thankful and grateful for and we celebrate her victories as much as possible.

In August, she got to go The Color Run in Milwaukee and although it was the most disorganized race of all time (seriously), Maura had a blast – everyone came and ran for her and let her sign their shirts – she felt all the love around her and it was really amazing.