Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Wednesday, December 10, 2014

Thoughts as we move forward

Slowly and surely... But forward.. 

I was struck by the generousity of the family that offered to be our first donor. They are just as important to me as a donor that would have been successful, and I wanted the family to know that. I wanted them to know how many prayed for them and sent words of comfort during an incredibly difficult time. 
I want them to know because I have been on a couple sides of this donor business.
Last year my little niece Jenevee June died.. She was just a tiny baby, only four months old. Not nearly long enough to love on her. I was there the day her little spirit left her earthly body. My brother and sister decided that she would be a donor. The choice that they made seemed so incredible during their grief. I find comfort knowing she helped to make the life of another tiny baby better. Now that we are facing needing a donor. Her gift is even more precious. 
I wrote our donor family this letter. I am sharing it because I want every family who has decided to be a donor to know my gratitude as well.. 

Dearest Donor Family,
On a Tuesaday night the most amazing thing happened. You said YES to organ donation.
You have changed our lives forever and I want you to know that your thoughtfulness, your generosity, and your love at a time of extreme difficulty and grief will forever connect us. We don't know you, we don't know anything about your situation (or you ours), we don't even know if our angel is a boy or a girl. What we do know is that they are our Hero. 
I am so sorry that that probably doesn't give any relief to your broken hearts. I am sorry that you had to do things that nobody ever plans for for a child. I am so sorry you had to even think about being a donor, but you did. You thought of someone else, you thought of us. How amazing you are.
Did you know that our kids were a perfect match? You have given us such hope when we had almost nothing left. You have renewed our faith. 
Thank you will never seem like enough. Thank you will not heal or bring back your child. 
Thank you, is all we have to offer our donor angel. 
Thank you with all our HEARTS!!!!
This gift that you have given has buoyed us and those around us. Our donor angel is loved by so many that will never know anything about them. You are loved by so many that will never know you. 


Anonymous said...

That is lovely! (You may want to change "angle" to "angel" as it appears several times and it took a second to realize what you meant! :)

Heart Mommy said...

Oh my thank you! It sounds so much better with the correct word.