Wednesday, May 16, 2012

day 2 post op

 i am certain a braver soul does not exist in this world than that of my daughter. i am deeply humbled by her incredible ability to face challenges that most of us will never even come close to encountering even once in our lives. she astounds me, i sit in awe of her strength, her grace, and i will never forget this week as she taught me how to endure hardship with dignity. such a privilege and an honor to call her my daughter. will be back here soon. rest assured, now that we are home from the hospital after 5 tough days, she is doing absolutely beautifully! i am not sure i could say the same with a 7 inch incision trailing down the center of my back :) but as you all have come to know, there is little if anything that keeps my girl down for long.

Thursday, May 3, 2012

The strength & patience of her six year old soul staggers my mind. Tuesday, May 1st, after a two hour drive to the hospital, we spent the afternoon on a tour of the facility with a nurse who educated our little one about her surgery that was scheduled for the following morning. There were dolls, drawings, pictures, and interactive tools. E opened up eventually, engaged in the process. Then came the blood draws (she held her arm out and cried into my shoulder), the paperwork, getting settled in at a local Ronald M*Donald House (incredible accommodations!). Later, a relaxing dinner out with family, the best part of a long day.

Wednesday came to us early, the alarm ringing at 4:30AM and we arrived at the hospital by 5:45. Soon after, we were in pre-op holding and E was gowned and "wired", blood pressure taken, oxygen monitor placed. Consents were signed. "De-tether of spinal cord". The words that were the solution to her pain. The anesthesiologist met us next, detailing the plans for her induction and her possible need for a blood transfusion during surgery. We nodded in understanding. We were all tired, and ready. Her surgery was scheduled for 7:30. But not once did E melt down, or lose her wits. She wasn't the picture of calm, but she held her own- that is her way.

E has the most rare form of spina bifida (myelocystocele), something I don't normally talk about here, but perhaps that isn't wise. For her privacy, I made the decision not to speak much about the particulars of her medical condition thinking that it wasn't for me to talk about. Maybe that is true, maybe it's not. Either way, questions are asked, for her to answer of course, should she feel ready. But I don't want her to ever feel that spina bifida, or having been born with it, is anything meant for keeping behind closed doors. In this way, perhaps I've done her a disservice.

By 7:15, the nurse arrives with medication that will cause amnesia. This will make it possible for her to be wheeled away from us and not mind that she is leaving her parents... it also made her loopy and say things that had us laughing so hard the nurse thought we were crying :) By 8:30 we were concerned and learned that one of the scopes was not functioning and that there was a 2 hour delay.

By 10:45, surgery was canceled. The hard drive on the main microscope used to differentiate nerve tissue from scar tissue (she has so much scar tissue) was gone, completely frozen, and the rep was unable to get it re-booted. Dr. G was extremely apologetic and we are on the schedule to return Tuesday to finally get the surgery completed- and a good thing at that since she is in a lot of pain (pain meds are helping).

I learned that her cystocele was not really repaired in China. That her nerves are still fanned out where her spine splits ("spina bifida"), and that she has a tremendous amount of scar tissue that is causing her cord to be tethered, which of course is leading to all of this back and leg pain. But I also know that China saved her life. Literally. I know nothing about the surgeon that attempted to repair her myelocystocele, 8 months after it should have been closed (these surgeries are normally performed within 24 hours after birth), but I do know that this person is responsible for her life. I wish I could meet him or her and thank them. And though I will never know the circumstances of her relinquishment, I know these facts: her parents or someone who loved her after her birth kept her for 3 months. And by letting her go, they also saved her. Leaving her at the gate of that orphanage was her lifeline.

E is the strongest and bravest soul I know. She is a light in this world. She is the perfect of example of what it means to reflect God in this world. I see that when I look at her. No, my child is not perfect. She is flawed, like every one of us. She can be bossy and sassy and whine and she's a pretty damn good manipulator.

But there is no other child like her. If I am half the person I see in her, I am so very, very good. She calls me to be more than I am, to be a better version of myself.

Such a blessing, this little one.

I remember once a friend told me they loved their child from day one in China, but they FELL in love when their child was very sick in the hospital, much later. That sort of head over heels, all consuming love. I think I understand that now. Love, as I have always said, is organic, it changes and grows with time and is rooted in action and not in feeling. So I didn't expect to feel any differently for E today than I did for her yesterday. But something about watching my girl so bravely handle her pain, and all that she has over these last several weeks- (well, be still my beating heart)- I think there is no love like this on earth. And not anything quite as hard as seeing your child suffer.