On The Blog

17 truths I know for sure thanks to SMS

November is SMS Awareness month. In honor of the deleted region in chromosome 17 that is responsible for Smith-Magenis Syndrome, the SMS Research Foundation has challenged families to do 17 of something (i.e. run/walk/bike 17 miles). There have been quite a few lists of 17 things like: lessons learned, important facts, and personal stories circulating […]

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The Beginning

How many beginnings do we have in a lifetime? If we count every new school, new friendship, new job, new move, new home, a marriage, and the birth of each child, they add up to a lot. For the purpose of this space, the beginning is when I finally awoke to the understanding that I […]

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Caregiving and Anxiety, Part 1: When Panic Strikes

Panic can swiftly seize control over the afflicted. Even the mere fear of it will ignite the symptoms. It’s always hovering right below the surface. Talking about it, thinking about it, worrying about it – all have the power to manifest a panic attack. It took me two years before I could even write about […]

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Rarely Perfect Christmas

‘Tis the season of major meltdowns. At least, as special needs parents, that’s often what the holidays can mean to us. All of the excitement, commotion, stimulation, and changes in schedule can make our kids more susceptible to tantrums.  We become well-versed in their triggers of Christmas because nothing creates a world of anxiety in […]

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Rewrite the Script

We all enter adulthood with a script. It varies, depending on our backgrounds, but it’s essentially the same. And we have an idea in our heads of what that is supposed to look like. So when you go off script, because of an illness or an untimely death or an unexpected diagnosis, the first thing […]

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New Rules

There are so many rules of the world that I am having to unteach myself as Sienna’ mom. The world tells me that all that matters is that my baby is healthy. But my daughter came into this world unhealthy and I’ve learned that the truth is that all that matters is that she knows that she is loved. The […]

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Showing Up

What can you do for or say to someone you love who is experiencing intense emotional pain? I wish more people would ask this question because very few people actually do these things well. I am not an expert, but this is what I was looking for from my loved ones during my darkest moments: […]

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To Sienna, On Your 10th Birthday

To Sienna, On Your 10th Birthday I wrestled daily with the fears I had for my daughter’s future during those first few years of her life. Smith-Magenis syndrome is a lifelong disorder that has no cure and can be an extremely difficult syndrome to manage. However, nothing I ever read about SMS told me anything […]

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The Canoe

I had this dream several months ago that I can’t stop thinking about. It really reflects how I feel about raising a child with Smith-Magenis syndrome (SMS). I think anyone raising a child with special needs or who has taken on the role of full-time caregiver could identify with this metaphor. I will shorten it […]

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