In the days after she was born, after the morphine and perocet had worn off, I was presented with a reality that I did not have a "normal" child. I was bitter, angry, sad, scared....feelings that shouldn't happen when you have a new baby. I didn't see her until she was 4 days old, I didn't get to hold her until she was a week old, didn't get to hold her without any leads/tubes/pumps until the day she came home from the NICU. And the VACTERL diagnosis....I thought it was the end of all things. And I did for awhile when we practically lived at the hospital those first couple of months. But when I crawled out from under my shell and was shocked at first to even find other mom's in the same boat as me and even more shocked that our kids were months apart, I suddenly didn't feel so alone, and bitter, and angry. Having VACTERL has been a blessing-I would have never known some of these moms and dads had my child been born with a correct anatomy and girly parts. Its been worth all the tears, the surgeries, the trips to Ohio to make Emma who she is today. Happy birthday to my little Emma Rose....hope your 5th birthday was one to remember.
Friday, June 24, 2011
It has been a day. I didn't think we would still be standing five years later after multiple medical procedures, surgeries, diagnosis, bundles of medical supplies and yet, here we are. On Emma's 5th birthday, at a VACTERL conference. At a VACTERL conference. Finally. I was really struggling to hold it together tonight-finally meeting some of the moms, in person, that I have known for years online....its simply amazing. I thank God for facebook and yahoo because I would have not found my support without the power of the internet. I love my family to pieces and they have been supportive in every way. But...I still needed an outlet to bounce off ideas/frustrations/tears to and I found that over a laptop keyboard. I just don't have words for it. And my friend Becca giving her the barbie and her horse...I bawled when we got back to our room. That was so very thoughtful and Emma is clutching it as she drifts off to sleep.
Monday, June 13, 2011
Eithene's CB site- http://www.caringbridge.org/visit/eithenerosehilliard
Maybe its the fact that Emma is celebrating her 5th birthday next week which coincides with the VACTERL conference and I am trying to get excited BUT knowing that we are about to lose another little girl to the angels from complications from VACTERL and mito is really getting to me. No parent ever in a million years envisions themselves having to make the kind of decisions Jessica and Sean have been forced to make for their little girl. Their faith in God is awe-inspiring-I don't know if I could have done the same. Please mail birthday cards (no gifts) to the address in her CB site. She also loves princesses too :)