The day your child is born you know your life will change. Sometimes you don’t understand the depth and breadth of that change and that might be a good thing. If we knew where life would take us some folks that don’t think they are strong enough might decide to not take that path.
At 18 I told friends and family I would never have children, I would never get married. At 19 I was married and at 20 I was a mom. At 24 I was a mom of three and 2 were physically disabled with a genetic condition called Spinal Muscular Atrophy.
I woke early July 18, 1978 – my due date was 3 days prior. I had contractions but at strange intervals. 10 minutes, then 5, then 2, then back to 10. Not horrible but enough to call the Doctor and head to the hospital. We got settled in and around noon the dr said we can wait or we can induce. We decided to induce and get this party started. I was in labor all night with my first 18 months before and didn’t want to repeat that experience.
Dr said great – it will be a few hours so I’ll be back later. They induced at around 1:30 and you were born at 2:20. With a different doctor although he was from the same office. All went well and later when my doctor came to see me he said “I didn’t think it would go that fast!”. The doctor that delivered Chris came in later that evening after my husband went home and he said “You need a glass of wine”. At that time in my life wine gave me heartburn so I passed on that offer. But he might have known something intuitively that I didn’t know yet.
Ironically the day Chris was born we got a letter from our beloved pediatrician that she was leaving pediatric general practice to go into pediatric psychiatric practice. We were devastated but as luck would have it she referred us to a wonderful pediatrician that wasn’t accepting new patients. It ended up being a perfect match for us. Dr. Richard Darling was one of the best constants in our life in the years to come.
All went well, better than with big sister Elizabeth that had an issue with a muscle in her esophagus that made her projectile vomit after every bottle. She was over it by the time Chris was born, once she was on solid food all was well.
We bought a house, a two bedroom apartment wasn’t big enough. It was a small cape cod style. The night we moved in Chris became very ill. His temperature was 104 and he was only 7 weeks old so that scared us significantly. We went to the ER of the hospital where he was born only to be sent to a different ER because they didn’t have pediatrics.
This became one of the scariest nights of my life. My husband went to park the car after we were put in a room. They gave me ice for Chris and the nurse left. There were no cell phones back then – it was 1978. Once you were in a room in an ER you didn’t think it was ok to go wandering around. After a fairly long time I started hearing talking in the adjacent room. Please remember I am in a room by myself with a 7 week old baby that I think might die because no one is coming to check on us and his temperature is so high. I hear the conversation in the next room and it is the doctors telling a family that their son didn’t survive a car accident. Little did I know then that I would be the one in another hospital with another son hearing those words. That is a story for another day.
My husband returned to the room finally and explained they wouldn’t let him back in because of the car accident victims being brought in and the ER was on lockdown. A nurse and doctor finally also came in and Chris was admitted to the hospital. He hadn’t had a bottle in hours and they were worried it might be meningitis so didn’t want him to have too much fluids. However they did give me a bottle and that baby sucked the whole thing down in one gulp! Once Chris was settled in the ward they told me to go get some rest, back then they didn’t encourage or even hear of, parents staying with their children in the hospital. It is the ONLY time I left my child alone in the hospital.
Over the course of a few days they determined it was probably viral meningitis and I would know for sure in a few weeks but that it was safe to take him home. He was weaker than before he got sick and we were concerned but after a couple months he started to get his strength back. In the following months I had a miscarriage and life was pretty busy. Chris had started to regain his strength then stopped. He pulled himself to his knees, crawled, sat up and that was it. Never stood up. They were still blaming his illness.
Finally my pediatrician decided it was time to do some testing and Chris was admitted to the hospital for a couple of days so they could do spinal taps, blood work and collect urine – from a baby none of those things are easy. Since we were at a teaching hospital we were included on rounds for the neuro doctors because there was something they didn’t understand about Chris. They were going on the assumption he was partially paralyzed below the waste however he could wiggle his feet. Picture 10 doctors and students standing around your 16 month old son staring at his feet. It was fairly comical at the time.
The tests came back and Chris didn’t have meningitis at all when he was 7 weeks old. He had Echo Encephalitis. It acted like a polio on his system. We started physical and occupational therapy. Then I got pregnant with his brother Dan and that healthy baby got to 8 months old and couldn’t stand up either. At that point more tests were ordered and we found out what they both had. If I didn’t have the miscarriage and have Dan I don’t know how long it would have been before we found out what Chris really had. I already told a lot of that story in this article about how I used the internet to find out more and about how we used technology to make their lives better.
Through the years I supported my children in anything they wanted to do. We traveled, we advocated both loudly and quietly. When Chris was in kindergarten he had a surgery that required him to lay flat for several weeks. We rented a reclining wheelchair that allowed him to be flat but mobile and his teacher had him come to school in it. I flew to California multiple times with both boys. That will be a post of it’s own, flying with 2 young men that can’t sit up with power chairs that the airline screwed around with…
They had friends whose parents made sure Chris and Dan could get into their houses. When Chris and I traveled when he was older we had friends that made ramps so he could get into their houses. No one felt sorry for either of my sons. They lived their lives on their terms and people loved them as they were.
Children change your life the day they are born. Some more than others. The day Chris was born a life was set in motion that would take the word “normal” out of my vocabulary. But there is absolutely nothing “wrong” with not being normal. I wouldn’t trade my life with my children for anyone else’s.
A couple more articles about my boys: