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Why I Will Keep Telling People About My Daughter With Dup15q Syndrome

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I’ve been wanting to write about this topic for some time but was always unsure where to start. What I want to say forms over and over in my mind, then, just as quickly, dissolves. The angry part of me begins and then quiets down. The tired part of me begins, then quiets down. The advocate in me speaks up and is usually the voice that stays, making the right words come. It’s the advocate in me that speaks now.

I talk a lot about Morgan and her having Dup15q syndrome. I talk a little about my family and how we handle everything. I’ve asked myself many times whether or not I aught to talk so much about everything. To share so much about doctors appointments, tests, therapies, etc. This question is one I’ve visited often, but always, after much thought and consideration, come to the same conclusion: I’m drawn to openly discuss our Morgan. To share her with the world – or at least with anyone who is interested in knowing about her. And time and again, I’ve seen some incredible results from my efforts to be open.

There are those who do not agree with speaking so openly about medical issues and disability. These things are viewed by many to be “private,” and talking about these things is in poor taste. I can see that.

I also see where many are uncomfortable with disability and illness in general. I’m not sure why this is. Perhaps it’s a strong reminder of our own fragility? Perhaps it’s being different that makes some uncomfortable. The possible difference in looks, mannerisms and behavior that some have trouble dealing with. Perhaps, it’s the different lifestyle of the day-to-day challenges that most simply cannot relate to. While I don’t share any of these views, and I don’t think there is any reason to be uncomfortable with disability or illness, I can see where these views come from.

There are some who are just plain uncomfortable with the idea of being so open about this life we are living.

So here’s why keeping everything to ourselves just doesn’t make sense for Morgan’s situation and our family’s well being.

When Morgan’s team of doctors, specialists and experts consist of 17 different people, the situation ceases to be private. Every aspect of her is discussed. We work with her. I share what’s going on with them, they have suggestions for me, and the cycle continues. It’s a lot of work. But something amazing happens when I open up about everything. I usually get the help we need. I get the information Morgan needs. Magic happens. If I’m not as talkative one day, or I’m not focusing my energy completely on every facet of her care, her doctor or therapist doesn’t get the whole picture. So many times I end up learning about some new technique or therapy available by sharing things I’ve noticed about her or something I’ve read – this happens to be how Hippo-therapy came into the picture. I talk way too much. And it has proven to benefit Morgan time and again.

I’ve spoken to a few med students upon request. I’d like to think our conversations will somehow make a difference. That by answering their questions and allowing them to learn from us, they will be better for it. What if one of these students takes a special interest in genetics or neurology. What if… perhaps just wishful thinking, but still… I’ll keep talking and teaching.

We shared our daughter’s story with all state legislatures to help lobby for the Utah Baby Watch Early Intervention Program, which directly affects Morgan and our family. We were only one of many families who participated in lobbying. I’m happy to say we saw good results from these efforts. This was the first time I had to get involved in politics on behalf of Morgan, and I dare say it won’t be the last. It’s often up to family members and caregivers like myself to advocate. And I fully intend to change what I can.

People get nervous about Morgan. When dropping off and picking up my son Kyle from school, there are those who may stare. But something amazing happens when I speak openly about her. The stares and discomfort lessens. They see I’m totally comfortable with talking about her, and that affects how they act around her. When you are your daughters’ liaison between her and the rest of the world, not talking about her differences as well as her similarities does her a disservice. I’m not ashamed of her, nor will I ever be. Kyle is not ashamed of her either and introduces his little sister to his friends with obvious enthusiasm. She is different, and that’s OK. Not everyone will be comfortable with her, and that’s OK too.

I’ve seen nothing but good come from talking about Morgan. So I will keep talking about her and sharing her story for as long as I have strength to do so.

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Thinkstock photo by Choreograph

Originally published: January 20, 2017
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