Friday, August 5, 2011

Through the magic mirror



I wish God would have given me a magic mirror many many years ago for just a peak, just a snippet of what life would be like now.

When she was born and the nurse handed me a packet of what VACTERL was and I was so doped up on pain meds that I was laughing while reading the oh-so informative packet. Really, no anus....where was THAT chapter in the "what to expect when you are expecting". Not in my edition. No husband around because he was sitting in an icy cold NICU waiting room wondering when my daughter was coming out of her life-saving surgery and what the heck was going on. Or hearing babies cry down the hall on the maternity floor and all I had was a picture to her to look out-I couldn't see her, hold her or feed her. Those 72 hours were the worst ever. No husband and no baby. That sucked.

Or the horrible months of summer when she turned one and was taken back into the OR for 6 weeks straight for our surgeon to destroy her but*t hole even more. But more so in the nights following the surgery, when her temp would spike over 105 (I didn't even wait for the stupid thermometer to finish beeping) and I would literally throw her out of her crib into her bathtub of COLD water, pjs at all, at 2am only to her the surgeon on call tell me that is a NORMAL REACTION! WTH? SERIOUSLY? And later that summer, when we had to do other painful procedures to her and I expressed concerns that she was in pain, and I felt that something wasn't right, I was called "crazy" to my face and perhaps I should get help. And that my daughter has a low tolerance for pain. Pure hell-watching someone hold down your child as they escort you out of the room. And nothing to stop it.

Or the next summer that I had to torture her with solid metal rods(that get progressively larger) where the sun don't shine, twice daily, for months, to keep that 100K but*t hole we got made for her in Cincinnati from closing up. How I used to sob afterwards because there was no other choice so it HAD to be done. Not what I wanted to be doing for the next 8 months.
Or when we finally moved to a city who evaluated our daughter for speech and OT and informed us she has a 18 month delay and WHY didn't be do anything before (thanks Virginia Beach) and that we would shell out over $1200 for a summer of intensive speech/OT (thanks insurance for the lack of outpatient coverage) and prayed that maybe one day she would wear sandals without socks, pjs without long pants, go into water without screaming, play in the sand....that summer was hard too-new house-new city and a big ol IEP that became our best buddy.

And then today....as I was zoning out slightly at the beach watching her play with other 4 and 5 year olds laughing and splashing in the water and having the time of her life it occurred to me that all the tears that I have cried, all the heartbreak, all the bitter words spoken, have been worth it. She is my normal, life loving, 5 year old child of joy

If only...if only I could have seen into this summer all those years ago to know that those experiences were just little bumps in the road.

Friday, June 24, 2011

Reflections

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.
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.

Monday, June 13, 2011

Please Pray

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 :)

Wednesday, February 23, 2011

Dear Winter

Dear winter,

Please leave ASAP. You are making me shock everything insight (cat/kid/patient file drawer at the office), contribute to global warming even more (running car in am to warm up), decreasing my urge to eat rabbit food to leave ('cause hey, its cold and lets eat potato soup) and causing my 4 year old to go stir crazy because yet again, its TOO COLD TO GO TO THE PARK.

And my sandals are begging to get out of their boxes to be worn on my feet.

Thank you and good bye!