17 Things I Know Because of My Child’s Smith-Magenis Syndrome


November is Smith-Magenis Syndrome 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 (such as run/walk/bike 17 miles). There have been quite a few lists of 17 things, like lessons learned, important facts, and personal stories circulating social media. These inspired me to create my own list.

What I know now is that my child’s Smith-Magenis syndrome has changed me quite a bit over the past 11 years. I like to think that, along the way, it’s also given me some wisdom I might not have uncovered without it. Here are 17 truths I’ve discovered, 100 percent thanks to life with SMS:

1. I believe God whispers to me through my gut. My gut is always right. And the answers aren’t always where or what I want them to be.

2. Gratitude doesn’t mean I have to be grateful for all the challenging parts of my life. It just means I’m not letting the challenging stuff overshadow the good stuff. Joy comes when I choose to let the good stuff be noticed.

3. Making other people feel like they are valued is one of the easiest enhancements I can make to my daily life.

4. Things rarely ever turn out as awful as I think they will. Spend less time worrying and more time believing.

5. It really does help to connect to people who “get it.” But it’s also important to stay connected to people who don’t.

6. I get knocked down. But I get up again. (You are never gonna keep me down.) #90sgirl

7. Grief might not ever permanently go away. It’s better for me to give it a seat at the table than try to wrestle it out the door.

8. Sprinkle hope with a healthy dose of realism and I will never be disappointed.

9. Breathe. I am fully equipped to handle whatever is happening in this moment. I am overwhelmed/anxious/worried/terrified about the future because I have not yet been given the tools to manage what will come. Stay present.

10. If it breaks my heart, then it becomes my passion. My passion becomes my mission. My mission is bigger than me and bigger than any problem I have. Focusing on my mission instantly makes my problem less significant to me.

11. I am much stronger and more capable than I give myself credit for. My daughter Sienna is much stronger and more capable than I give her credit for.

12. Impermanence should not be feared. I can change. I am definitely not the same person I was 11 years ago. Sienna can change. My circumstances can change. Nothing is forever.

13. Just because someone has a M.D. after their name doesn’t mean they know everything I think they should know.

14. Adapting to this life means creating a new “normal.” My normal might not look anything like someone else’s normal. But it’s not my responsibility to explain that or justify it to anyone else. It is what it is.

15. I am co-authoring this life. I always have permission to keep trying even when something doesn’t seem to be working. I also always have permission to let go. What do I want the theme of my story to be? That I loved well. That should be the intention behind every choice I make.

16. Silence/quiet/solitude is where I find peace. Family/friends/meaningful relationships are where I find joy. I need both to keep my bucket full.

17. The holiest, most sacred, most important ground to me is the one my knees are on. Those are the moments that shape and define me.

The author and her daughter with the SMS foundation's 17 for 17 logo

Follow this journey on SMS Research Foundation

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