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"One in a Million..." - Jan. 28, 2012
It’s now been one month since the day we first held Hannah in our arms... one month since we first kissed her soft round cheeks... one month since we first whispered in her ears that she would always be ours. The memories of those first days together are still so vivid in our minds and hearts. We will never forget how Hannah would spend hours staring at us, probably wondering who we were and why we were so happy to see her, and we'll never forget how she would snuggle in close and take constant cat-naps as the stimulus of her new experiences were so overwhelming. In those first days, we spent a lot of time pondering what her personality might be like once she warmed up, how active she would be once she could play with her siblings at home, and even what her smile might look like once she felt comfortable enough to laugh with us.
As the days turned into our first full week together, we saw incredible changes in Hannah. For starters, she was very curious and could mimic almost anything we would do... especially with our hands. As we played and interacted with her in our hotel room, she would watch our hands like a hawk, then stare at her hands and attempt to recreate what she saw. She would also watch our lips intently as she heard us speaking with strange new words. It didn’t take long before she was familiar with many of them like “Dada”, “yea” and of course her new name, “Hannah Zhou”.
Now, a month later, Hannah has further advanced her ability to communicate, giving us an insight into her beautiful personality. In addition to using body language to communicate with us, she also uses many hand signs, and she even has specific noises and/or motions that she uses to refer to each of us individually (for example, she identifies Katie by shaking her head from side to side and saying “ahh!” since that’s the first game Katie played with her). Additionally, we’ve come to learn just how much Hannah enjoys interacting with her siblings; for hours at a time, Hannah will sit on the floor playing hot wheels with Michael, rolling on the floor with Eli or playing spontaneous baby games with Katie. It has warmed our hearts so much to see the way that each of the siblings have welcomed Hannah into their world with excitement, joy and occasionally, a healthy bit of jealousy.
Despite all the pleasant surprises with Hannah's level of cognitive development and her ability to quickly bond with us, something else started to become obvious, especially toward the end of our first week together. No matter how much enthusiasm or excitement we saw Hannah exhibit while we interacted with her, we never actually saw a smile on her face. At first we dismissed it as a natural part of the process of her warming-up to us, or possibly a lack of muscle tone due to her time spent laying in a crib, but by the end of that first week, we started thinking about it more and more. Then, one afternoon Sarah found a particular way to tickle Hannah’s tummy that would make her roar with laughter; it was refreshing to hear the cute way she laughed, and yet, we immediately noticed that none of the muscles on her face moved. There was no widening of at corners of her mouth, no lifting of her eyebrows, no raising of her cheeks… nothing. Since we knew that Hannah had previously been diagnosed with some different issues related to her eye muscles, the lack of movement in her eyebrows, and eyelids didn’t surprise us, but we weren’t aware of any other problems with her facial muscles. Needless to say, this discovery was very surprising to us, but instead of feeling a natural sense of fear or worry about what might be wrong, God gracefully filled us each with peace. You see, when we started Hannah’s adoption process last year, we knew beyond the shadow of a doubt that He had specifically chosen her to be in our family, and as a result, we knew that He would give us the ability to handle any differences or challenges she had, whether they be mental or physical in nature. We also knew from previous adoptions that even though the adoption paperwork attempted to outline the children's medical needs, there could always be additional issues that were not diagnosed.
After making our initial discovery about Hannah's facial paralysis, we decided to not worry and wait till we returned home and could get an educated opinion from our doctors. However, despite our lack of urgency, a couple of our friends saw a video we posted online of Hannah laughing, and they each began to research her condition, unbeknownst to us. Twelve hours later, we had two separate emails from these completely unrelated friends, each saying the exact same thing; it was likely that Hannah had an extremely rare condition called Moebius Syndrome. We were shocked that they each identified the exact same thing, but upon reading more of the information they forwarded us, we realized why they were very likely correct. It turns out that Moebius Syndrome not only causes facial paralysis, but often includes other symptoms like club feet, limb/hand deformities, a shortened upper lip, and a lack of lateral eye movement... all things that Hannah obviously exhibited.
Now that we've been home for a few weeks and have had Hannah evaluated by number of doctors and specialists, our assumption has been confirmed: Hannah undoubtedly has Moebius Syndrome. While a prognosis like this might seem like a bad thing, there are so many positives in our mind. First, the syndrome is not progressive; Hannah's condition won't get any worse as she ages. Second, people with Moebius lead normal lives with average intelligence and average life expectancy. Third, and best of all, we know that God has a plan for Hannah that has only just begun. In fact, in her orphanage of almost 100 children, she is only one of a select few that have been made available for adoption. Now that she has a forever family, we get the awesome privilege of giving her comfort, love and especially acceptance for who she is. God's gift of this beautiful little girl has completely blessed us beyond measure, and she is so precious to us. In fact, we laughed at the symbolism when we heard just how rare her condition is, because it's something we already knew in our hearts to be true; she is one in a million.
In the near future, we will be posting more information about Moebius Syndrome and about our experiences with Hannah's upcoming medical procedures and tests, but for now we want to thank those of you who have been praying for her. It is through the unconditional acceptance from family and friends that Hannah will truly feel like she is loved for who she is. Thank you for joining us in prayer on this journey!
If you're curious and want to learn some more about Moebius Syndrome right now, check out the Moebius Syndrome Foundation website (www.moebiussyndrome.com). You can also view the following news story about a young woman with Moebius:
•Woman Draws Attention to Rare Syndrome - CTV News, Calgary
To watch the video, click the link above, then look for the video player window in the center column; you can expand it from there to be full screen.
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