Dear Rachel

Dear Rachel,

Today we celebrate your first birthday, a wonderful milestone for any child but especially poignant because of the start you got: we were told that you would not live, that we would have to consider termination, that we'd have to think about organ donation. Terrible news, yet from the very beginning you continued to defy everyone.

You did not die: you lived and have done it so well.



This past year has been emotionally turbulent. There's been lots of crying but none from you. You have remained ever graceful and elegant. Though your little body has been scarred, you have not complained. Though you have been prodded and examined and tested and Xrayed and scanned, you have never been disagreeable. You have endured it all with a smile on your face. You are amazing.



I often think about how our life would be different if you didn't have Spina Bifida. Easier, yes, but would we be as grateful? No. Would we know in a very real and personal sense how God walks with us through heartache? No. Would we know and have experienced a miracle? No.



Daddy and I have been over and over how this happened, what we could have done differently to spare you this. The only way I can explain it is this: Remember that day Joshy was trying so hard to fit his Spiderman on the John Deere tractor? He worked and worked and asked me to help. I worked and worked, but no matter what I did, it just didn't fit. I said to him that Spiderman just wasn't made to go on the tractor. No matter how hard I tried, it would not work.



In the same way, we were not made for this world. Sure, there is a lot of joy to be had in this world, but Darling, you were not made for this world. This world is broken, and in one way or another, everyone discovers that, whether it's their body that doesn't work as it should (as in your case) or relationships, or heartache.

It SUCKS that your toes and ankles don't work and that you will forever be dealing with that. I am sorry! I wish I could do anything to change that, but I know that "this" is not as good as it gets. I KNOW that we were not made for this. That's where my hope lies: you WILL walk unassisted someday. You WILL feel the sand between your toes, just not in this lifetime.

(I also know this, that the day Jesus takes Spina Bifida by its scrawny little neck and kicks it's butt into nothingness, you and I will be standing right by his side!)



Rachel, you will have many needs throughout your life, but remember that everyone does: we can just see yours. I pray that you keep the sweet disposition you have now. I pray that you bring joy to those around you. I pray that people are kind and enlightened about SB from knowing you. And Daddy (and I) pray that you will dance. We want you to worship the amazing God that loves you and made you. Your feet don't work, but you are sweet and gentle and cute (sorry, but it's true. In this society we live in, good looks can get you farther than working feet.) I know a lot of people whose feet work but are pretty miserable! We are working really hard to get you to dance in in life and through life.



You are forever my amazing miracle girl! I am so grateful to God for you. I know that you will continue to defy the doctors, amaze everyone.

Rachel, you are beautiful (as your name means). Elianna, God has answered my prayer (also as your name means).

All my love, Mommy