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.


  1. You are such an amanzing mother and writer. Thanks for continuing to share your beautiful daughter and ehr story with us. You words capture her essence, and what an amazing essence it is. She is a pretty special person.

    1. Love is so tangible here. Let's hope it can push back the frontiers of Medecine...

      BĂ©atrice / Zeu (France)

  2. Hang in there.......just a few more days. Hopefully it will be just as smooth with a beautiful, wonderfully, successful outcome. We LOVE you guys!!

  3. Speechless. (You know that's rare! ;o) Tears of joy for you and the love that you share with your precious E. Tears of hurt that she is in so much pain and now has a few more days of it before her.

    Tears of longing. Calling out to the Lord, asking Him to allow the surgery to move forward Tuesday without further delay.

    Tears of hurt for those in China who loved E so much to place her in caring hands.

    Amidst all these tears...Joy! Joy knowing soon some (hopefully all) of E's spinal and leg pain will be behind her. Your brave little girl! Your daughter forever!!

    Praying for Tuesday's surgery.

  4. What a beautiful tribute to your strong and amazing girl. I understand the "falling in love" part. I think I fall in love with Bri more every day. I will be praying for E on her surgery day. I hope all her pain will go away!

  5. I understand that love. My child's special need is her being on the autism spectrum and how she has progressed. How she works so hard everyday to understand others. Language processing being one of her biggest obstacles. They are truly amazing.
    E will be in my thoughts and prayers, especially on Tuesday. You also will be in my prayers.
    You have an amazing( and beautiful) daughter and you are one amazing mom. Blessings.

  6. I recognise this - the complications of both surgery and emotions(although in very different circumstances).
    Thank you

  7. Been thinking about you guys. You and E are both amazing and inspiring to me! Praying things go well with surgery and looking forward to seeing those beautiful smiles in the days to come!

  8. Hi there
    Just when I think it couldn't be possible to feel any more for folks I've never had the privilege of meeting in person - I come here again and am drawn in. Thinking of and praying for you all.

  9. Convinced it's impossible to feel any more deeply for folks I've not had the privilege of meeting - you write something like this post. Incredible. Thinking of and praying for you all.

  10. all our best wishes for E,
    i hope she will feel better after.
    Our dauhter was leave at 3 monthes old too, i think they wait warmly weather to save her...

    Our daughter was loved...

  11. So long since I have caught up. So sorry to here that E has been having so much pain. Surgery must be a scary thing for you all to face but I hope they can reschedule quickly and give E some much needed pain relief. Hope you are all ok.

  12. Wishing you a happy Mother's Day! Praying that E has had her surgery or will soon, and that all goes well. So hoping her pain is better, too. What a sweet picture of the two of you. So nice E has a mother who is a nurse, as I'm sure it helps her with the hospital stay. Bless her heart and yours, too!

  13. Hi
    I hope she feel better, best wishes from France.


  14. My heart and thoughts are with you and your beautiful brave girl.