Today, I bring you Sally Sexton, 43, mother of Brynn (below) and Niall. I started out my interviews with moms of special needs kids thinking they must have a harder time juggling fitness with motherhood. Sally set me straight. Here’s Sally’s story, in her own words:
Brynn ran with me two races before she was born. The Tofte Trek trail run, through the muddy hills of the North Shore, and the Human Race in St. Paul (which did not have adequate port-a-potties along the course for the pregnant ladies, so I had to take a short jaunt from the course to Whole Foods for a potty break and free fruit and cheese samples).
I consider the first year of Brynn’s life, and my life as a mother, a marathon of sorts. At 20 weeks gestation my husband and I found out we had a baby with a complete Atrioventricular canal defect. Soon after that we learned, via amniocentesis, that we would have a baby girl and that our baby girl would have Down syndrome.
Brynn made it to 35 weeks and we had a very joyful birth experience. Unfortunately, she was quickly swept away to the NICU and lived there for the next two months. This is where we began our marathon. Brynn could not nurse because of her compromised heart, prematurity and low muscle tone. I quickly began the pattern of every four hours going through the cycle of trying to nurse, tube feeding and then pumping.
We finally brought Brynn home with a GT tube, but we didn’t stop our feeding cycle. My lactation nurse and Brynn’s OT explained how important it was for Brynn to practice nursing before each tube feeding. This would help her eventually learn to nurse and would really be important for her speech development, that would most likely be delayed later in life. Most importantly Brynn had to gain weight so she could have heart surgery.
Brynn had successful heart surgery at six months and within weeks she began nursing more. By nine months we were able to remove her feeding tube and she was nursing on her own, but would not take a bottle.
This is when I found out I was pregnant!
If I was going to use the marathon metaphor seriously, this would probably be mile 17. I needed to fuel up, buckle down and make it through another 9 months. I was the lactating, pregnant mom that occasionally made it out for a walk around the lake. It wasn't until after my son was born that I realized, I had to exercise again or I was going to lose my mind. Having teachers and therapists in and out of our house, and a son with what early childhood educators call a "fussy temperament" was too much for this introverted mother who likes her quiet time. So, I started running again.
Today, Brynn is 6-and-a-half and Niall is five. Fortunately, Brynn is relatively healthy and loves Kindergarten. Brynn now has her own "running shoes" and "running shorts" (a size too big and sometimes worn inside out). She emphatically announces each evening after dinner that she is "going for a run." Sometimes she gets her running get-up on, sometimes it is rain boots and wool socks. Regardless, she heads out the door and someone has to chase her half way around the block. Without much street safety sense, we stick near enough to intervene if necessary. My joy is magnified since Brynn couldn't even walk around the block until she was four years old. It was four years of weekly physical therapy sessions, lugging Brynn and her walker around, and always wondering when she would be able to walk from the house to the car by herself.
So, if I ever lack motivation to get out of bed and run or do my PT exercises, I think about Brynn and how hard she had to work during those therapy sessions every week just to get stronger and stronger, so that she could walk.
I've watched other mothers endure and push on through as their children undergo multiple surgeries, cancer treatment, and other complicated health issues. One thing I have learned is you can't easily compare experiences. I have friends with jobs that require long hours, husbands who travel, and some who are single parents. Everyone is juggling. I also have a good friend who just had her first baby. After six months of caring for her newborn (without special needs) she tells me motherhood is "the hardest thing I have ever done in my life." I believe her.
Running, training for triathlons and working out have been more than a mental break for me; it's been the best way for me to build and maintain the mental strength I need to keep going day after day.
Rarely am I challenged by the logistics of negotiating a work-out with a child with special needs. I've figured out what works and that is usually 5:30 a.m., an occasional evening when my husband is home, or an afternoon swim during the preschool hour (however, I keep my cell phone in a zip-lock on the pool deck because of frequent calls from Brynn's school) and the weekends when we trade for morning runs or a bike ride. At this age it is easier to workout alone, because I crave the solitude.
The sacrifices for staying mentally and physically fit in a family with a special needs child? My house is usually a disaster, I wear sweaty workout clothes almost everywhere (volunteering at school, getting groceries and taking kids to the doctor) and I don't get as much sleep as I would like. This is probably no different than any other hot sweaty mama! We are more alike than we are different. Which is exactly how I would want the world to view Brynn.