I am a Star Wars fan in remission. I was a teenager when the first Star Wars film hit the theaters and with two younger brothers, spent many hours watching the super heroes of space duke it out. Eventually, I started to enjoy this baby-sitting gig. Now, as a single mama with a house full of girls-- and not a single Princess Leia among them--well, when we do get to the movies it's usually The No Bummer Summer types or, most recently, Home. But I digress. . .
Today, Lilah had three doctor appointments at Children's Hospital. We started out in great spirits:
But it's never hard to get a smile out of her.
Up next, here she is stepping into a "fun" looking x-ray machine:
Which revealed some unexpected news.
Afterwards, we had a little time for breakfast at McD's:
And to stare at this ball and maze contraption.
Then we sat in the exam room waiting for the surgeon and entertained ourselves taking selfies:
One of us didn't get a lot of sleep last night...yep, it was me.
And one of us is taking everything in stride...yes, my babe. She is a trooper.
But both of us know how to have a little fun.
At the end of the day, with three more diagnosis/discoveries, it has become crystal clear to me that my babe does indeed have that syndrome impacting the midline--some call it VADER syndrome, some call it VACTERL. I knew she had it before today, what with four diagnosis on the midline already (more than 3 and you're a shoe-in), but today I was given information on new discoveries and information not shared with me in March (how could the doctor forget to tell me Lilah's kidneys are not the same size?). And I am sad, because my girl, she deserves a break, right. (Yes, I am tempted to throw a pity party, but Lilah would be the last one to attend and the only way she'd arrive is kicking and screaming--which is a reflection of her indomitable spirit and the way I am raising her--to see herself as
mighty). And the truth is, everything that could go right, is going right. Her open heart surgery was nothing short of a miracle. And all the damage to her organs for having gone 3 years without a repair, healed itself within a year of surgery. She was detethered long before any permnant damage could occur. Her kidney reflux--stage 2, people--healed itself!
So, what are the unknowns we face?
1. She has been diagnosed with spina bifidia occulta, but it is pretty much a static condition and anything that could go south with it has already happened--tehthered cord and now this prominent bone (size of a BB) near her tail bone. Many people are born with SBO and never even know it.
2. Her spine is curved. It's only an 8% curvature. The ortho specialist believes this is due to her open heart surgery. Normal range is up to 15% and no human being has a straight spine--we're all a little curved.
3. And the kidney size disparity, a lot of people are born with this and never even know it.
So we follow up, every year unless something indicates further action is needed.
Now the fistula--that big surgery is scheduled for June 23rd. The surgeon believes it will be difficult at minimum, complicated enough he has requested a specialist in an anatomical area close to the fistula be present in the operating room because he suspects involvement. And the recovery? 6-8 weeks. Oh, and he wanted me to know that it will be the most painful surgery she could have. Yeah. Open heart surgery, spinal surgery pale in comparison.
So, my friends from the adoption community, what is it like to raise a child with VADER/VACTERL--nothing short of miraculous. She truly makes my heart sing. I am a better person for having and holding her. Each of my children have taught me more about Grace and faith than I ever thought was possible. They have taken me so deep into love that there has to be another word for it. But in keeping it real--yes, tonight I will find a moment to myself, lock the bathroom door and shed a few tears for my sweet girl, because in 6 weeks I will hold her hand and walk her into the most intense pain she has ever known so that she can live a life full of possibility. And tomorrow morning she will wake up and wrestle the sun into the sky and laugh that deep belly laugh because, after all, she holds the world in her hands (and my heart, too).
(More on that VADER/VACTERL thing later. . )