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 social media. These inspired me to create my own list.

What I know now is that, for better or for worse, Smith-Magenis Syndrome has changed me quite a bit over the course of the past 11 years. I like to think that, along the way, it’s also gifted me with some wisdom that maybe I wouldn’t have uncovered without it. Here are 17 truths I’ve discovered, 100% thanks to life with SMS:


1. 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 crappy parts of my life. It just
means that I’m not letting the crappy 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 doesn’t ever permanently go away. It’s better 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 ever give myself credit for. Sienna is much
stronger and more capable than I ever 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 an 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 is the one my knees are on. Those are
the moments that shape and define me.

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