Preparing for takeoff

When I hear the word “travel,” my brain neurons fire with excitement, but they also fire with anxiety. Traveling with a child who has SMA and needs medical equipment can be grueling. Over the years, I’ve learned it doesn’t have to be taxing, if I’m prepared. My son Jack loves adventure, seeing new cities, and trying new foods. As long as I follow my pre-travel rituals, then I have the pleasure of seeing Jack see the world.

“I’ve mentioned in the past, I have a lot of help and everyone has a job, even Jack. Jack’s nurse helps me greatly with our medical checklists. Checklists are so important! When preparing for a trip, I like to make a list weeks in advance.”

I’ve laminated our checklist to reuse time and again. Jack’s Nana helps me choose and pack his outfits. Jack likes being stylish. I am in charge of packing all of Jack’s favorite snacks for road trips and plane rides. Finding a good insulated lunch box and ice packs to store snacks is also helpful. Jack’s Papa is the best roadie, always ready to load the luggage into our vehicle. Lastly, Jack is in charge of packing his favorite toys and his tablet. I always have the chargers.

Whether I’m traveling by plane or car, that helps me determine how I’m going to pack. What has been most useful for me is hardshell luggage. I think the hardshell makes me feel like anything inside is less likely to get damaged by airline handling. If I’m traveling in our own vehicle, I often pack more than I need in case we want or need to extend our trip. On road trips, I also love bringing large tote bags on wheels. So I can just roll all our necessities around; it’s brilliant!

This is all to say that traveling can have its challenges too. Our biggest issues have been flight delays. I have regretted booking the last flight out, because that’s it, no options. So if we are stuck on an unanticipated long layover, Jack can get grouchy or have pain from sitting too long. We have been so lucky that Jack’s wheelchair has not had any major damage from airline travel, but we have had some of our wheelchair accessories lost. Some that are important to Jack, like his cup holder. Jack loves having his water bottle close by. I always ask the airline staff if we can board first to guarantee I can comfortably and safely transfer Jack to his seat. I also need an extra minute to ensure Jack’s wheelchair is folded correctly, all the pieces are tight and no parts are loose. It has been really helpful to request pre-boarding and notify the airline that we’re traveling with a wheelchair when booking the flight. It makes the day of traveling so much easier.


Finding my parenting balance

Lots of people know me as a protective mother. It's not a bad thing. Sometimes, I have to be the mama bear to get things done for my child who lives with medically complex needs. It wasn't until my son Jack turned 6 years old that I realized he could really fend for himself and express his own needs. As his mom, I want to empower him and encourage independence.

Today, Jack is 7 years old and lives with SMA Type 1, as well as mild autism disorder. The combination of SMA and autism didn't allow him to have a voice until he was about 4 years old. Jack has worked so hard to build his voice through help from speech therapy, his educational environment, and our family.

“Over the years, I have formed relationships with many teens and adults living with SMA. It has helped so much with my parenting skills.”

One major takeaway from our conversations is that Jack needs to establish independence early on, so he can be even stronger when he reaches adulthood. So, with the help of our home support system, we are teaching Jack about the power he holds over his own life.

It was about a year ago when my eyes really opened. We were at the hospital, and Jack was being prepped to start an IV infusion. The nurse was looking for a vein on his right arm. Then Jack suddenly told the nurse that the better arm was the left one and to please not use the loud thing. He meant the jtip, which is a needle-free anesthetic and is very loud. Jack does not like the sound of it and sternly voiced his own concerns. It made me so proud to see that he could advocate for himself.

At school, Jack can get emotionally and physically fatigued from the busy school day. He knows that he can simply raise his hand to call his teacher and ask for a break. Often, he needs mental breaks. He's free to roll to the sensory room for a few moments to refresh himself or to have a snack. At home, he will ask for help when he can't reach a toy and is very good at communicating exactly what he wants to eat.

I watch my son live with SMA, and I see it's a daily struggle to get all his basic needs met. He needs help with coughing, showering, toileting, changing his clothes, taking his medications, preparing food, and the list goes on. Before Jack had a voice, we used to do things as a routine, saying it's time to do this or time to do that. I have learned that it's better to encourage him to tell us when he needs something. As a protective mom, I used to think I knew Jack better than he knew himself. The truth is that he really deserves more credit. That's something I learned from my many opportunities engaging with other members of the SMA community.


My parenting journey

I'm Kristen, single mom to one very incredible boy, Jack, who is six years old and lives with spinal muscular atrophy (SMA) type 1. Until you're a parent to a child with a medical condition, it may be hard to know the depth of your strength, determination, and resourcefulness.

I gave birth to the most precious boy, Jack, in August of 2015. I often found myself daydreaming of a life with just my little boy and me. I dreamt about adventures with him at the beach, riding roller coasters, going to soccer practice, and traveling, just the two of us. Jack and I have lived with my parents since his birth. I'm so glad we do, because I didn't know what the future held. When Jack turned a month old, we noticed something different about his body. Our pediatrician also took note of Jack's lack of head control and the changes in the movement of his arms and legs. The next day, we were sent to a neurologist, who immediately thought he had SMA. Two weeks later, Jack received his official SMA type 1 diagnosis.

As SMA started to show in Jack's little body, I quickly realized the power of educating myself. The experienced SMA community shared real-life stories with me and others in my shoes. Virtually, they taught me ways to fit physical therapy and the tips we got into our lives. They told me what toys were best for someone with little movement. I learned how to make our house accessible. The community is a wealth of knowledge and support. I felt strongly that I needed both. I quickly made close bonds with lots of parents; after all, we had so much in common. They have provided so much insight into my motherhood and parenting journey.

As a single parent, I've needed to build a village of family, friends, doctors, nurses, therapists, SMA families, and use online resources. I am so grateful for my parents' help that I have labeled them "co-parents" of Jack. I love them so much, I wouldn't have it any other way.

“Diagnosis was a shocking experience. Experiencing grief is normal, but parenting Jack has been the highlight of my life. I love who he's made me.”

I've made myself a person of service to the community, which has brought me so much happiness. Community events are my happy place. Just seeing everyone together (SMA-affected, unaffected, parents, family, and friends), it's an emotional experience.

My parenting journey has been all over the place. We went from being told Jack may have a shorter life expectancy to realizing that there is so much hope for those with SMA. I do my best to make sure that Jack is happy and comfortable. I find power in focusing on the things he can do, instead of the things that are difficult. Then finding solutions for things that seem difficult. Jack has been on some scary roller coasters, walked the beach in a hiking backpack, and has been on many vacation adventures. Jack and I even went on our first solo trip earlier this year! So far, we're doing pretty well at accomplishing all the daydreams I used to have and creating new ones.

All lives are special, but I like to think that we are some of the lucky ones. We are lucky to know the value of every single day and every little and big milestone. I get by with a lot of help from my family and friends in the SMA community. How do you get by?