Our story starts in 2004, when I had a complicated pregnancy with my first child, Gianna, and was advised not to ever get pregnant again. This was actually fine with me because I’d always been drawn toward adoption. We adopted our second child in 2007, another daughter we named Camille, from Kazakhstan. After strong suspicions gathered in country, when we got home, we were not completely surprised to learn that our Kaz cutie had cerebral palsy, some significant hearing issues and some sensory issues, but these were things we’ve learned to live and thrive with.
After we saw firsthand the dire conditions orphans lived in, truly understood the fate of those who would never find a family and experienced the indescribable joy of adoption, we knew we would go back. When we decided to adopt a third child, this time from China, at first we thought we wanted a “healthy” child since we already had so much on our plate with 2 busy girls, one with multiple special needs. But a little something that tugged at my heart was confirmed one day when I went to church and the speaker said, “Your misery needs to be your ministry.” Could we make room for another child with extra needs? It would be more work, but honestly… well, yes, we could. So with lumps in our throats, but smiles on our faces, we made the leap and checked the special needs boxes “Deaf” and “Cerebral Palsy” (and a few others!) as ones we were specifically interested in just because we had experience, and had hope that something great was going to come out of this.
The very next morning after submitting our special needs list to our agency, in January 2010, the photos and referral of a precious 13 month old girl landed in my email inbox. Deaf. Gross motor delay. Muscle spasticity (indicative of a neurological condition that we assumed to be cerebral palsy). It sounded all very familiar, and very doable, so we enthusiastically replied “YES, we would love this child to be our daughter”. With no other information, we traveled to bring the beautiful Miss Evangeline home in September 2010.
We happily settled into life at home with our brand new funny, silly and sweet baby girl. It quickly became apparent that Evie was not deaf, or even remotely hearing impaired. The child woke from naps if the dog’s nails clicked too loudly on the hardwood. She did present with left side muscle spasticity, for which we sought a host of testing, checking for physical abnormalities. All looked well. Then she started vomiting regularly, which we again sought testing for. Nothing abnormal was found in her digestive tract. The unexplained vomiting combined with the odd neurological symptoms presenting on her left side led us to ask for an MRI.
On June 29, 2012, after the MRI, Evie was diagnosed with Moyamoya Disease, a very rare, progressive, neurovascular disease. Of the 4 arteries leading to the brain, 2 of Evangeline’s had closed off. Her brain was deprived of blood and oxygen. The MRI revealed that she had already had 2 strokes, and was at risk for another at any time. She needed 2 separate brain surgeries as soon as possible to bring in new arteries and fresh blood flow.
After fighting a lengthy and difficult battle with our insurance company to send us out of network to one of the two leading surgeons in the world for this disease, we won. We were absolutely not going to settle for less than the best for our girl. Evangeline had 2 brain surgeries at the Lucile Packard Children’s Hospital at Stanford in August 2012. Literal hell could very well look like handing your tiny beloved child over for serious surgeries over and over again. A mother’s heart doesn’t even speak Logic in these situations, so naturally I felt like I could not even breathe at all during the operations, but her surgeries were performed by expert hands and went well.
Although all went well with her surgeries, once home I could not shake the feeling that we were missing something bigger. Please read on before you alert the authorities to what seems like a raging case of Munchausen by Proxy. One day shortly after surgery, as Evie again vomited for hours, I sat with her on the couch and had time to Google all the little symptoms that had been bothering me lately. Everything, including the Moyamoya, pointed to something called Neurofibromatosis type 1. I speed dialed her pediatrician because it all sounded so familiar. We’ve seen a host of specialists since then, and in short, Evie is undergoing genetic testing for this disorder, but even if the testing doesn’t pick it up (because in about half the cases, blood doesn’t always detect it), the geneticist feels that she has enough of the soft signs that she needs to continue to be tested throughout her life.
It is more probable than not that Evie has NF-1. NF-1 is very unpredictable and the presentation looks different in every single person. The broad spectrum tells us that the Moyamoya could be the worst we face… or we could be looking at things like malignant tumors or leukemia. It could be days, weeks, years or decades before we know anything, if anything, at all.
BUT… in all honesty, none of us ever know what life will hand out. Any given family and its children could be 100% healthy today and tomorrow an accident or surprise diagnosis could carve out a whole new path. You never know what life will give you, but do any of you focus on what bad thing or accident could happen tomorrow? I didn’t think so, and neither will we. We choose to make every minute of every day we have together count.
While I realize this reads like a terrifying soap opera script, please remember this: Ours IS a story of HOPE. All three of our happy children are living proof of that. Each one of them led us to the next. If these kids had never happened to me, and I heard about them in another family, I’m sure I’d be saying “Thank God they AREN’T mine!” because it’s so easy to be scared and focus on the hard parts. But because they did happen to me, every single day I am saying “Thank God they ARE mine!” because we’ve learned not to be afraid of hard and we focus on the good parts. Yes, our daughters have more therapy and medical appointments and question marks in their futures than the average child, but they are really the ones who are adding layers of richness to our lives, teaching us patience, strength, gratitude, and compassion. And whatever they need to help them in life will be fought for, won and given to them. My children are exactly who I have always wanted in my life. While I realize it might be hard to believe, words can never express my gratitude and blessings for my sweet babies. We are honored to do the small things we can to do preserve and better the lives of our daughters, whose blessings in our lives are immeasurable.
If you have ANY questions about hearing loss, auditory neuropathy, cerebral palsy, sensory processing disorder, attachment issues, limb difference, Moyamoya Disease, fighting insurance companies for out of network referrals and/or (my to date very limited knowledge of) NF-1, please email me. I am still in the process of learning about, living with, and rocking the heck out of all these things as you may be too, but I would love to pass on any information, experience, or otherwise practical help that is needed.