Tuesday, June 8, 2010

We keep on moving forward

I am trying to keep on trucking today and find the positives.  In the last 24 hours I have heard of 2 Rett Angels passing away and also a newly diagnosed Rett Angel at 20 months.  My heart is breaking for all of these families.  The news of the passing Angels seems to rip the band-aide of my healing wound.  Its moments like this that I want to give up hope.  That I am quickly reminded that my dream of a cure might not happen and that it could be my daughter passing away so young.  I hate Rett Syndrome and the pain that it causes our children.
I am going to focus on my 10 minutes with my sweet angel last night and not worry about tomorrow, it's just sometimes easier said than done.


  1. Dawn, I know it is heart wrenching to think of the angels that have flown home. It sure doesn't help that they always seem to leave a few of them together. Be easy on yourself today and give yourself room to grieve, it is alright. You can still be optimistic and give your two little ones all the love in the world. Nobody knows what the future holds. If today means seeing that little smile through the lens of your tears, that is a beautiful thing. I am sorry that we have such painful circumstances, it really is not fair. You aren't alone if that helps at all. We are all grieving today.

  2. I have been crying for the last hour or so. Avery is having a tough day on top of hearing all this bad news. actually three girls have passed, the latest I heard was not yet 4 yrs old. not sure of the circumstances.
    my issue right now is that I really feel like i am doing such a horrible job being a mom. i lose my patience so easily and even when I try to tell myself today will be different, it isnt. im just really bad at this even though i talk a really good game.

  3. Thanks Colleen for the encouragement, it's made this day easier. Erica, I understand and feel the same way! I hope that Aves has a better day tomorrow.