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| William's Syndrome affects 1 in 10,000 people. |
I realized I haven't shared much publicly about Thea's journey. Up until now, I don't think I was ready to share much, so I'm going to try and back up a bit.
When Thea was born, she was born with a heart murmur (in her case, a narrowing of the heart's valve). Heart murmurs are not uncommon, and even I had one as a baby and it corrected itself. After having it examined, the cardiologist informed us that when there is a heart "defect" there may be a genetic change that causes it. He gave us the option to have some genetic testing done to see if this would be true for Thea.
Although we had hoped that this would not be the case, we had suspicions that something might be underlying.
About a month ago, after months of waiting, we received the results from her bloodwork and Thea was diagnosed with a rare genetic condition called William's Syndrome. A condition that occurs at birth and is commonly characterized by cardiovascular disease, developmental delays, learning challenges, physical differences, but also highly social personalities.
When I got the call about Thea's diagnosis, honestly, I was devastated. Although part of me was waiting for this bomb to drop for months, the anticipation didn't soften the blow. Emily Pearl Kingsley expresses this journey of learning your child has a disability so beautifully in "Welcome to Holland".
As a parent, you want the best for your kids. You hope that they grow up with the same (or better) opportunities that you had. It broke my heart knowing that Thea might not have these same opportunities. I mourned the loss of the future I had envisioned for her. She might not go to a regular school, be able to play sports, she may not have the same career opportunities, she may not get married, have kids, or even be able to live independently. It was hard to accept that she will live with some limitations.
As a parent, you want the best for your kids. You hope that they grow up with the same (or better) opportunities that you had. It broke my heart knowing that Thea might not have these same opportunities. I mourned the loss of the future I had envisioned for her. She might not go to a regular school, be able to play sports, she may not have the same career opportunities, she may not get married, have kids, or even be able to live independently. It was hard to accept that she will live with some limitations.
Although the love I have for Thea has not changed, I worry how others will treat her or how they will look at her. I pray that God will protect her tender heart from hurt and bring loving friends into her life.
All of these thoughts still come and go in waves.
For now, we don't know which characteristics of WS she will exhibit, or to what degree. Only time will tell. In the meantime, we continue to do our best to help her meet milestones while working alongside a physiotherapist, occupational therapist, and other health care professionals. We are fortunate to receive her diagnosis at a young age, so that we can determine the areas where she needs extra support and start working on them early.
I know that this diagnosis is not the end of Thea's story, but rather the beginning of a different story. It's not necessarily any less exciting, fulfilling or adventurous than the one we had thought, it's just different.
Overall, Thea is doing great. She is still our sweet girl. She is so content, easy going, and has made so much progress in developing her skills. She might not grow as quickly as other babies her age, but that just means more cuddles for me. Her brother and sister love her just the same, and that makes my mama heart happy. There is no doubt that she will be a little ray of sunshine to those around her.
A few words from Jesse
I remember a conversation I had with a friend and colleague of mine a number of years ago, before either of us had kids. We were working together in a home where we supported people who experience disabilities. We both still do that actually. The conversation was about whether we were worried about having kids with disabilities and if God had put us there to prepare us for if we someday had to raise our own child who had a disability.
We concluded that it shouldn't be something to fear, and that we would determine to be the best dads we could be, whatever the case. At the time, I felt we had settled the matter confidently and with spiritual maturity. It was perhaps over-simplified, but something I now need to apply. And maybe a simple foundation is best.
With each of our first two children, my radar for the atypical was always pinging about every little thing. I tried to suppress it but I thought certain traits and habits looked like autism or some kind of cognitive delay. It would kind of dissipate over time as I realized our kids were hitting milestones and seemingly enjoying life. It was fear that was circumstantially mitigated but not really dealt with...and probably more common than I thought.
Between our second child and Thea, I entered a time in which my faith was stripped down a bit, my perception of God was challenged and I found myself wondering about His goodness and interest in my meager affairs, or anyone's for that matter. Again, these are probably common developments for people, but the conclusions we land on shape our future and should be given some thought. As this was taking place, I lost my father suddenly and unexpectedly. At the time I was able to be strong when I needed to be but since have felt rather depleted and fragile. Perhaps due to natural physiological reasons, perhaps for the others as well, regardless, I notice it.
It has created an interesting time for Thea to enter the picture. More specifically I guess it’s an interesting time to learn about her diagnosis. It’s a struggle for me to say “diagnosis” to be honest. Language is a funny thing, always progressing and eventually offending...sometimes I really care about the semantics of disability ...right now though I just want to love my little girl and figure out how to describe things later.
I think the point I’m trying to get to is that I feel broken enough to accept the news, the “diagnosis”. I don’t feel like fighting it, denying it or even praying about it to be perfectly honest. Maybe that sounds like giving up but it feels more like trust. Somehow I’m learning to trust God’s goodness even in disappointment or just simply when things are not as I anticipated.
I’ll conclude with trying to summarize some swirling thoughts:
I love Thea, I think she is so sweet and cute. I’m grateful that despite some challenges with mobility and potentially cognitive ability, one of the main traits of Williams Syndrome is being very friendly, empathetic and social.
I’m thankful that our family and friends first were introduced to Thea without any type of “syndrome” attached. She was just Thea.
I believe that she can have a great life, an enviable life even. I believe that there will be lots of opportunity for her to pursue her interests and dreams. We will just need to put the work in to equip her for success...perhaps different measures but is that not what we would do for Averie and Remi as well? Or any other parent for their children regardless of need.
Thea has her whole life ahead of her, I don’t need to have everything figured out right now. I just want to disembark well from this new harbor.
I remember a conversation I had with a friend and colleague of mine a number of years ago, before either of us had kids. We were working together in a home where we supported people who experience disabilities. We both still do that actually. The conversation was about whether we were worried about having kids with disabilities and if God had put us there to prepare us for if we someday had to raise our own child who had a disability.
We concluded that it shouldn't be something to fear, and that we would determine to be the best dads we could be, whatever the case. At the time, I felt we had settled the matter confidently and with spiritual maturity. It was perhaps over-simplified, but something I now need to apply. And maybe a simple foundation is best.
With each of our first two children, my radar for the atypical was always pinging about every little thing. I tried to suppress it but I thought certain traits and habits looked like autism or some kind of cognitive delay. It would kind of dissipate over time as I realized our kids were hitting milestones and seemingly enjoying life. It was fear that was circumstantially mitigated but not really dealt with...and probably more common than I thought.
Between our second child and Thea, I entered a time in which my faith was stripped down a bit, my perception of God was challenged and I found myself wondering about His goodness and interest in my meager affairs, or anyone's for that matter. Again, these are probably common developments for people, but the conclusions we land on shape our future and should be given some thought. As this was taking place, I lost my father suddenly and unexpectedly. At the time I was able to be strong when I needed to be but since have felt rather depleted and fragile. Perhaps due to natural physiological reasons, perhaps for the others as well, regardless, I notice it.
It has created an interesting time for Thea to enter the picture. More specifically I guess it’s an interesting time to learn about her diagnosis. It’s a struggle for me to say “diagnosis” to be honest. Language is a funny thing, always progressing and eventually offending...sometimes I really care about the semantics of disability ...right now though I just want to love my little girl and figure out how to describe things later.
I think the point I’m trying to get to is that I feel broken enough to accept the news, the “diagnosis”. I don’t feel like fighting it, denying it or even praying about it to be perfectly honest. Maybe that sounds like giving up but it feels more like trust. Somehow I’m learning to trust God’s goodness even in disappointment or just simply when things are not as I anticipated.
I’ll conclude with trying to summarize some swirling thoughts:
I love Thea, I think she is so sweet and cute. I’m grateful that despite some challenges with mobility and potentially cognitive ability, one of the main traits of Williams Syndrome is being very friendly, empathetic and social.
I’m thankful that our family and friends first were introduced to Thea without any type of “syndrome” attached. She was just Thea.
I believe that she can have a great life, an enviable life even. I believe that there will be lots of opportunity for her to pursue her interests and dreams. We will just need to put the work in to equip her for success...perhaps different measures but is that not what we would do for Averie and Remi as well? Or any other parent for their children regardless of need.
Thea has her whole life ahead of her, I don’t need to have everything figured out right now. I just want to disembark well from this new harbor.
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