We have featured Wilton mom Jennifer Iannuzzi several times to help spread her effort of raising funds and awareness on behalf of the Smith-Magenis Research Foundation, an organization she started to fund research into the rare genetic condition Smith-Magenis Syndrome (SMS) her 10-year-old daughter, Sydney, has. Today, Thursday, Nov. 17, is SMS Awareness Day. In 2013 she ran a marathon to mark the day and bring attention to SMS, and she’s held many fundraisers. This year, she is doing something very different than she has ever done to raise awareness on SMS Awareness Day, which she tells us about in her own words.
I have been living special needs for over a decade and I am exhausted. Since December 23, 2005 my life has not slowed down for a second. In fact with each passing year there seems to be more and more demands put on me and quite frankly I have been finding it very difficult to keep up. About a year or so ago my ability to keep up with this insane pace began to deteriorate. I was experiencing one physical ailment after another–unexplained headaches and right-sided numbness; right shoulder and leg pain; constant and irritating heart palpitations; finally, a weeklong stay in the hospital for a severe and sudden onset of an infection that required surgery and a rather lengthy recovery requiring several weeks of antibiotics.
By the time all of these insane health issues were done I realized I was completely exhausted, profoundly depleted, and honestly pretty much done with living special needs. But the kind of break my body and mind needed was going to be impossible to get. I needed a time out from the chronic worry and managing of my life. What I really needed was for Sydney to stop having special needs for a little while. I needed my life to stop moving so quickly and I needed it to stop being so complicated. Obviously this was going to be impossible for me to do and for the next several months I found myself losing my strength, my focus, and my endurance.
About three months ago I took a long hard look at my situation and realized that what I really needed a break from was not so much my life with special needs but my perspective on it. I needed to refresh my thoughts, renew my goals, and rejuvenate my spirit. And I needed to come up with a way to do that that didn’t require me to stop living special needs on a day in and day out basis. Quite simply I needed to work with whatever resources I had right in front of me.
And this is what I came up with…..
Raising a child with special needs is all about endurance. You need to be able to keep going even when you don’t want to anymore and even when you feel like you can’t. Its about learning how to refuel your mind and spirit with very little rest and most importantly its about never giving up…no matter what! It is about focusing on a goal and never giving up hope that you will reach that goal. It is about believing in yourself and your child that not only will you both survive but also thrive in the process. Sometimes, in order to keep going, you have to become creative in establishing your goals and finding just exactly what it is that inspires you to never give up!!!
This year for SMS awareness day I wanted to do something that would really challenge me and call upon my endurance. In the past I have done some endurance events but they required a complicated training plan that kept me away from home for hours on end. Not that easy to do with a special needs child and not an obstacle I wanted to have standing in my way of doing what I had set out to do.
So after much thought this is what I came up with…
About two years ago I bought a Peloton. A Peloton bike enables you to join cycling classes from the comfort of your home….perfect for someone like me! It took me a while to warm up to the idea. It felt strange spinning alone in my basement and I missed the energy of a spin studio. However it did not take long for me to realize what the Peloton could offer me….a spin class whenever it worked for me! It also offered me a huge community of other riders…over 13,000 to be exact that ride live or on demand everyday and stay connected through Facebook. It completely opened up my world! So what if Sydney couldn’t go to school that day, so what if my sitter cancelled, so what if Sydney was having a bad day, the Peloton was always ready when I was…I fell in love with the flexibility.
I also realized that I don’t have to give up on training for something….I can train right in my own home anytime I wanted to.
So I decided to do something I have never done before…something that I think truly captures the essence of what endurance really feels like. Today, on SMS Awareness Day, I will spin for SMS awareness. After I get the kids on the bus I will get on my Peloton and host my very own Spin-A-Thon for six hours to raise awareness for SMS.
It is not easy raising a child with profound disabilities and it takes determination, strength, and tremendous endurance to get up every morning and face whatever the day may bring. What I realized is that I needed something to believe in again. Something that is bigger than my own exhaustion and self-pity. Something that would inspire me to keep moving forward even when I want to just crawl into bed.
After each 45-minute ride I do, I will post some facts and info about SMS on Facebook and how my life is affected by this rare genetic disorder. I have several goals to accomplish today:
- Successfully making it through all the spin classes–go big or go home they say!
- Hopefully some people will learn about SMS for the first time today
- Help others understand how difficult it is to live with special needs but also how life changing for the better it really is
- Ride alongside side some of my closest friends and some of my brand new incredible Peloton-friends
- And lastly and most importantly encourage everyone to share at least one post I write today in an effort to keep up the momentum of spreading SMS awareness today!
It is exactly what I need to refuel my mind and my spirit and to remind myself that I do have what it takes to endure and to never give up. Many riders from the Peloton Facebook group are virtually riding parts of it with me, and two friends I’ve met on Facebook because of SMS will join me in the Peloton studio–I will meet them in person for the first time. Lots of people from peloton will be riding virtually with me. One woman named Robin Tillman who lives in California will be riding all six rides with me. A few women from Elevation Spin in Georgetown will be joining me at the Peloton studio for two live rides at 5:30 p.m. and 6:30 p.m. and Elevation will be dedicating all their spin classes to SMS awareness. My sons, Ben and Cole will also join me. When I am spinning at the studio they will ride at home–Ben will ride with me at 5:30 p.m. and Cole will ride at 6:30 p.m..
For that extra reminder to myself that I have the power to change my own outlook on my life I decided to have a recurring theme throughout each one of my rides. With the help of my favorite instructor at Peloton, we have found six playlists that have the song by Journey called “Don’t Stop Believing.” It is such an inspiring song and a perfect reminder that as along as I believe I can do it, I will keep living and surviving special needs!