I grew up in Brooklyn. My first job was in an office in Manhattan. The trip to the train station meant that I had to walk one block and one long avenue to get to the train, then I had the arduous task of climbing 3 flights of stairs to get to the elevated platform.
Adult with SMA
One of the many things that every adolescent must go through at one point in their lives is the transition from childhood to adulthood. For most, this entails saying goodbye to their parents and cautiously entering the “real world” that our parents have consistently warned us about throughout our lives. For someone with a disability like SMA, however, things can get a bit more challenging.
I like to think that between my husband and I, we have already experienced our fair share of earthquakes after Northridge and Loma Prieta. Unfortunately, we all know the saying “three’s a charm,” and living in South California comes with its trade-offs. For all our sunshine, warm weather, and beaches, we face the constant threat of earthquakes, fires, and floods.
For the first 20 years of my life, I was oblivious to what SMA was. At a young age, I realized that I was different and wondered why my body failed me. I was in college earning an Associate’s degree with plans to go on to obtain my Bachelor’s when I got my diagnosis.
I can still see his cerulean eyes sparkling with excitement, “Tur-tal! A-gan, Mama! A-gan!” beseeching me for the hundredth time that hour on his singing toe-tapping turtle. I was unaware that the turtle’s words, “Crazy ‘bout you baby,” foreshadowed the days ahead.
I often sing to myself the lines, “Take good care of yourself, you belong to me.” The one thing we as caregivers need to make sure we do is take care of ourselves.
Everyone has something that keeps them up at night. For me, it was the sheer terror of another excruciating, lengthy hospital stay in the ICU an hour away from our home. Every time Skylar landed in the hospital, my husband, Jim, and I would take shifts by Skylar’s bedside.
Sometimes we tend to limit ourselves in life out of fear. This can be especially true with the SMA community, where we often depend on others for menial tasks throughout the day. There’s a familiar feeling that we face, the feeling of dependency on others that we can’t seem to possibly ignore, and as a result, there are times that opportunities that once seemed so wonderful ended up becoming “unrealistic.”
People will talk about our kids. Little kids will ask them questions. Adults will ask them questions. Some will just point and stare. Cute little kids in wheelchairs are hard to resist. Teaching your child how to handle these interactions with strangers will make these interactions a lot less stressful, and even fun.
First impressions are crucial for everyone in that they can determine how someone views you for a lasting time. Unfortunately, first impressions often involve an individual’s appearance, and for those with SMA, our differences are all the more apparent.
Now, in our house we have lots of big sister/little sister dynamics. With 4 girls, I can only imagine the battles over clothes, shoes, friends, and the inevitable boyfriends that will be in my future!
It is hard. I cannot lie. It is hard dealing with SMA. It is hard not knowing at all what your child is going through. It is hard “not getting it” over and over again. We are so committed to our kids, but we cannot always help them ourselves.
When was the last time you did something just for yourself? Something that really gave you a few moments (at least) to refresh your energy and focus on something other than your child(ren)?
I like to think we’re a well-oiled machine in our house every morning, but I may be delusional. Every morning is started with the best intentions, which quickly evaporate into controlled chaos, and ends with a sprint through the door, praying we didn’t forget anything.
The night before my first day of high school, I laid in bed wide awake, the butterflies in my stomach fluttering as I pondered what my life for the next four years would be like. Would my classes be hard? Would I get lost? Would I make friends easily? However, I had a big question lingering on top of all these: How would being in a wheelchair and having SMA affect all this?
Anyone with a disability can tell you that staring comes with the territory. This was a lesson we learned soon after we were told that our 20-month-old son, Logan, had Type II SMA.
First comes love, then comes marriage, then comes a baby with a cough machine, bi-pap, and pulse oximeter. That’s how the song goes, right?
Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. We have always been a traveling family and when our daughter Leah was diagnosed with SMA, we were both hopeful and determined that it wouldn’t hold us back.
I can barely remember life before I worried about SMA. But perhaps what has been even more difficult for me has been the loss of the option to be able to just up and decide one day that we want to add to our family without fear or hesitation.
By far the greatest motivator for pulling us out of the fog and fear and sadness was the tiny little boy smiling and sitting before us in his new green wheelchair, named Jay-Jay. What could we do other than explore the world he is so eager and grateful to be a part of?
I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.
There are numerous occasions when a sleepover can be considered for children with spinal muscular atrophy. This is especially so for our daughter, Angie, as she is a very social person who has lots of friends.
When we had our daughter, Ruby, like many first-time parents, we had so many dreams for her. And they all involved her exploring the world, finding what she loves to do, and learning all she can about it. Enter SMA.
Real-world insights from the SMA community
The people featured on this website are part of Together in SMA, which is sponsored by Biogen. Biogen compensates these contributors for their time and the content they provide.