Battles against terminal illness, anxiety, and life!

Thank You

I want to say thank you to the two anonymous donors who deposited into Braden’s donation account.  From our family to you, we can’t thank you enough.  A thank you to all of you who are bidding on Braden’s art.  We are so excited to let you know who gets an original on Friday!  We plan on having him sign it and putting a picture of him on the back.  We are also extremely thankful to those of you who helped Braden get his new set of wheels.  He LOVES his new wheels (we try not to say stroller, because that implies baby.)  I took Braden out jogging with me yesterday evening.  He “jogged” for the first minute, and then (and I kid you not) he crossed his arms behind his head and crossed his ankles, as I jogged behind him huffing away!  I think it’s safe to say the thing is comfortable!  We are seriously fortunate to be surrounded by the most generous people.

Thank you to all who have written letters of encouragement, provided us a shoulder and/or ear, and who have so graciously helped our family.

It often feels as if Braden’s diagnosis is overwhelming.  The enormity, the obstacles, the forces that he has to work against…it’s a perfect storm.  Every night, Braden finds his way to our bed.  As I roll over every morning, I look at that sweet face of his.  I’m angered at all he has to face.  I’m scared that my shoulders won’t be big enough, my heart strong enough, and the time slow enough.  How cruel it seems to have face this.  As I read and learn from other children who have A-T and their incredible parents, I can only hope to be half as brave as they are.  How are we going to do this?

I know there is this tiny part of my heart that is clinging on to the thought that this isn’t really happening.  I know that hearing the diagnosis when we go to Johns Hopkins will drive home the reality, and I’m afraid that my heart will break into a thousand little pieces.  There is no amount of begging, pleading, bargaining, demanding, bribing, crying, screaming, or anything else short of a cure that can help.

The fact is that no pharmaceutical company is going to fund research for such a rare orphan disease.  It’s not profitable enough.  It has been through the grass-roots effort, the sweat and tears of those affected or know somebody who has been or is affected, that funds have been raised for research.  We don’t want our children to die.  It’s that simple.  We’re trying to move mountains to save our babies.  Braden will always and forever be my baby.  Please let us be strong enough and fast enough to save him.  Please.

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Comments on: "Thank You" (1)

  1. that is such a nice thing !

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