Today I am so very excited to be launching a new series called Inspiring Moms. The reason I chose that name was because in this context it fits perfectly as a verb and an adjective. I really want this to be a community of mothers that come from all kinds of diverse walks of life to inspire one another.
For our first inspiring mom I was able to interview Suzanne Sorenson from Waxahachie Texas.
I haven’t had the pleasure of meeting Suzanne in person, but I we connected online at the end of 2015. They had just lost their home in a tornado the day after Christmas. This would be a difficult tragedy for any family, but especially for the Sorensons whose son has Smith–Magenis Syndrome (SMS).
I recently had the chance to talk with Suzanne and ask her about her experience both as a tornado survivor and as a mother of a son with a rare disability. Here is part of our conversation.
Messy Mom: Can you take us back to the beginning of your motherhood journey and how it all began?
Suzanne: My husband Seth and I have been married for 16 years. We were married 3 years before starting a family. I have a type A personality so I had a very specific plan and timeline for how our life would go and the pregnancy was right on schedule. I did all the research and preparations while I was pregnant and it was all prefect… until Colton was born prematurely.
The Doctors immediately knew something was wrong. They figured Colton had a syndrome of some kind, but genetically the tests came back normal. Although Colton had medical complications they felt like he would eventually grow out of them and be fine. But that first year there were many milestones that he was not reaching. On top of the developmental delays he had constant ear infections and trouble eating and sleeping. Still, the experts attributed all of this to the tubes in his ears.
I didn’t even know the severity of his insomnia until I had my daughter Tanner when Colton was two. It was the midnight feedings that allowed me to discover that Colton seemed to never sleep. So I called the pediatrician to talk about all of my concerns and it was then that Colton began early intervention services.
By the time Colton was four my mother’s intuition was telling me that clearly something was up. I started demanding answers. Finally they decided to do more genetic testing. This time the testing was more thorough and it revealed the delation of Chromosome 17. That’s when Colton was diagnosed with Smith-Magenis Syndrome and I was so relieved, not that he had a syndrome, but to have a name. Now we could have a plan. We could do something about it. The next hurdle was finding out where he was at on the spectrum because it varies so much.
Even though it took four-and-a-half years for Colton’s diagnosis I think that was the biggest blessing. Had I known right away that he had this it would have defined him and I would have held him back. I would have let it consume me early on. Instead I got to love him, and know him, and bond with who he is and not the label placed on him. By the time I learned of the diagnosis I was already connected with my little boy so I had no reason to worry.
Messy Mom: So what is Smith-Magenis Syndrome?
It’s a very rare genetic disorder. It affects 1 in 25,000 people and potentially more because it is believed to be severely undiagnosed. It affects many parts of the body including speech, behavior, sleep cycles, and emotions. Colton feeds off of emotions both positive and negative and his responses can be extreme. He has angry outburst that can be damaging to himself. He’ll hit, spit, throw things, followed by sitting on the floor crying saying “I am so sorry”.
Messy Mom: So can you tell me about what happened December 26, 2015?
Suzanne: Of course it was the day after Christmas, we went to the grocery store and had big plans to hang out and watch movies and the kids could play with all of their new Christmas presents. I remember it was really warm that day. It was 85 degrees, but a cold front was supposed to come in.
As we were getting ready to watch a movie our phones started blowing up with tornado warnings. We followed protocol, but at the same time we are Texans and do this all the time so it was no biggie. No one was freaking out. We got ready to put the kids in the safe area which was the bathtub with pillows and blankets. Seth was on the couch and argued that our usual safe area is not the most interior wall and suddenly decide we should switch it to the hallway. This was still all a really chill conversation by the way. So the kids were in the hall with their iPads and I was in the kitchen making sandwiches. We brought the dogs in and the electric began to flicker. So I went to be with the kids, but Seth was still watching the news.
The electric then went off again and that’s when we heard it! It sounded like a train! Seth ran into where the kids were and the kids had their hands over the heads while I covered them with my body and Seth laid over all of us. It was dark and you hear glass breaking and furniture was blowing around. The scariest part was that you could feel the suction. All of the doors were sucked in and we literally felt like we were being lifted.
I prayed over and over PLEASE GOD PROTECT US. Then it was quiet and dark. We just had the light from the phones and iPads. No shoes. No supplies. Then Seth gets up and walks out and all I hear was him saying “Oh my gosh” over and over. He looks around outside and comes back and says “It’s all gone”.
Everyone in the neighborhood was outside at this point and you can hear them asking “Is everything okay?” “Do you have everyone?” “Do you have your babies?” Some neighbor’s homes were completely level. For us the storm came through the back of the house and tore off that side, but our Christmas tree was still standing. But the shop, our boat, Seth’s tools, the travel trailers. Everything in the back was gone and everyone else’s stuff ended up in our yard. Seth is a contractor by trade so he immediately went into builder mode to help. Everyone was helping each other. It was incredible the way the community came together.
Messy Mom: The way you and I first became connected was through postcards for Colton. I know a lot of my readers responded with sending postcards to your temporary PO box. What part did the postcards play in all of this?
Suzanne: Colton is obsessed with mail. He would check the mail morning, noon, and night. After the tornado we moved into a rental home and the rental did not have mailboxes. So he really missed his routine of checking the mail. It was a tough time. We had to lease everything down to the sheets. Nothing was our own. No family photos or anything familiar and that was especially tough for Colton. So my sister in law started the idea of sending Colton post cards to cheer him up during this difficult season and it really took off. He got mail from Autralia, Europe, England, Germany and other places. It was incredible.
Messy Mom: What advice do you have for what others can do to help in a situation like that? Maybe some of our readers have a friend or relative whose home was destroyed. What is the best response?
Suzanne: Don’t ask “What do you need me to do?” We heard “What can we do?” over and over and over? I know people meant well, but I didn’t have answers! It was all so overwhelming. I didn’t know what to do. So instead of asking. Just do it. Designate someone in charge that is family or a close friend, but is not directly impacted by the disaster and they can be the ones to delegate.
Messy Mom: Lastly, because you have so much wisdom I just want to glean as much as I possibly can, what would you say to a mother who just learned that her baby has SMS or a similar developmental disorder?
Suzanne: God doesn’t make mistakes. No matter how overwhelmed you feel and how bombarded you feel remember that God does not make mistakes. The heartache is a tangible feeling though and it’s not disappointment, but just fear. The hardest thing is the guilt and you have to give yourself a break. You will have bad days and it doesn’t mean you are being a bad mom it means you are having a bad day. Do not loose sight that you are the perfect match for that baby and that baby is the perfect for you.
Messy Mom: I think that is excellent advice that could apply to any mother. I really appreciate your time because I know you are busy. This talk has blessed me and I believe your insight will be a blessing to many others. Thank you Suzanne.