Saturday, May 5, 2007

letter to baby


My love,

If I could do one thing for you it would not be to take your disability away because that is God's plan for you. And it would not be to give you millions of dollars to buy millions of things because it all rusts over and is lost even before we die. And it would not be to give you faith that moves mountains because you have that already. Besides, it is not mine to give. It is your gift to accept.

I would do something lasting.

Something that would elevate, educate, and inspire others. Give them joy and a taste, at least, of peace. Just like you give me every time you smile or blow a kiss or squeal at your reflection in the mirror.

I would work to tell everyone about Fragile X. I would work to make the testing mandatory for all babies--part of the routine blood tests they perform now.

You are a blessing. I need--I feel absolutely compelled--to continue that blessing through my endeavors.
I wish this made sense.

I just love you so much. And my heart is breaking with all of the dreams I have for you. For us. Birthday parties. Airplane rides. First day of school. Going to the movies and buying a popcorn that's almost as big as you are. Sleeping in on the sofa bed on Saturday mornings because we stayed up late watching TV.

I don't feel sad for you or about you. Not about your disability and not because your dad is absent. And I don't feel sad for your dad. And I don't feel at all guilty for not marrying him. Because the relationship he had to offer was not good enough.

3 comments:

cws said...

Amen!!!

Your son is soo handsome. He looks just like my son did when he was that age.

I also have a blog about my FX family. You can find it at: http://fragilex.wordpress.com/. I have links to other FX families too that have kids of various ages. :)

Haley-O said...

He's beautiful, Erika! I hope all your dreams for him come true.

Linda said...

AMEN. You don't have to be with someone who is not the right person. Your son deserves so much more. There will be someone out there who will love your son for who he is, no matter what he has to deal with.

The love you show for your son is AMAZING. Just by having this blog, you will educate many about FX.