I was pregnant with my second child when I learned my sister-in-law, Jes, was also pregnant with her second child. My daughter was born in December, and my nephew was due in June. When we received the phone call on April 25 that my nephew Boston had been born, I was terrified for them. He was six weeks early, and I prayed that he was okay.
Boston spent one week in the neonatal intensive care unit, and this was my first glimpse at what life was like trying to balance a baby in the hospital, a husband with a demanding work schedule, a healing mama and another little girl at home. Boston arrived early because there had been an oxygen obstruction. As tests were conducted, they began to talk about cerebral palsy (CP), and the worst case scenario was laid out for them: Boston may never sit up on his own, walk, feed himself or talk.
Needless to say, the family was devastated. And scared.
But Jes refused to accept their dismal diagnosis. From the start, she began to research CP, including its prognosis, caring for someone with CP and physical therapy for those with CP. She decided that statistics and doctors were not going to determine what Boston’s life would be like, and instead, their family would set their own expectations. Jes was determined that Boston would sit up, roll over, crawl, feed himself, talk and walk. And he has done all of those things.
He is an amazing little dude. His life has not been easy, nor has it been for his parents. They have spent hours in physical therapy, they have had surgeries and gone to the fullest extent to make sure he has the best of equipment and teachers and opportunities. It has been amazing to watch him learn and grow.
It has also been amazing watching Jes mother him. She has taught me these things about being a strong mother:
1. When I think my life is tough, I need to think about what other moms are facing. Jes is a teacher and works full time. Her husband works shifts and doesn’t always have flexibility in getting time off. When he is working 12-hour shifts, she is basically a single mom. But that hasn’t stopped her from continuing Boston’s therapies and having her kids participate in activities such as gymnastics. Yes, Boston is a gymnast. When I am exhausted at the end of the day, I often think about the fact that when Jes comes home from work, she has therapies and appointments and consultations and so forth. And she does it like a champ.
2. A mother is her child’s best advocate. Jes never takes “no” for an answer. Her child should have as normal of a life as possible, and she’s moved mountains to ensure he gets that life. I’ve watched her maneuver through the health care system with its often confusing and frustrating policies, seek out the best educational avenues for Boston and advocate for equipment and health coverage for things that insurance wasn’t going to cover. Jes finds a way, and her son has benefited tremendously.
3. Never let someone tell you your child can’t do something. Our children only know what “normal” is by what we teach them. Jes taught me that. Boston will never have the attitude that he cannot do something. That’s not in his vocabulary. He has no reason to believe that he won’t walk or do extracurricular activities. Boston doesn’t know that the rest of the world has opinions on what he can and can’t do, because his mother has never let that attitude invade their lives.
4. Having a special needs child does not mean life is any less adventurous, even if it’s different than the way your family planned it would be. We all have hopes and dreams of what life will look like. When Jes found out Boston was a boy, the family’s plans included hockey games and tournaments and weekends golfing. And although their reality looks different than what they had envisioned, they still have fun. They go places and do things and have found other engaging activities that Boston can participate in. Sometimes you have to just roll with it.
5. It’s OK to ask questions. I was timid about asking about Boston, his prognosis, his life and so forth. I didn’t want to upset Jes. But I’ve found that she would rather we ask her questions and learn about what makes Boston “Boston” than awkwardly avoid the conversation. I asked Jes if she was OK with me writing about this topic, and she encouraged me to share away. Jes said, “We spread the word because we think education is the key to preventing ignorance.”
6. Heed the requests of moms with children who have special health care needs. Whether it is cerebral palsy, autism, celiac disease, asthma or food allergies, unless you have a child with that condition, you are not the expert. However, that mom is, and she has a reason for making certain requests. I guarantee that those requests are not to make your life more difficult or less enjoyable. I guarantee they are not unreasonable requests. I guarantee they are in the best interest of her child. She should not have to explain that to you. If you ask her about it, I bet she would probably love to tell you more and give you some insight. Our children are our most beloved and treasured “assets,” and most moms are just trying to keep them safe and do what is best.
Thanks for these lessons, Jes. You are my hero.