Happy 19th Birthday Dear Son~What a Difference a Year Makes!

One year ago I was in despair. Dear Son was unconscious on a ventilator and what was supposed to be his best birthday ever, was his worst. In May of last year, Dear Son had his vagus nerve stimulator replaced and his lung collapsed. It was a bad hospitalization and I vowed that if he made it through, I would contact the Make a Wish Organization and plan a trip. I wanted him to be able to look forward to something else and to pack for something else, other than to go to the hospital. I just wanted to see him happy.

The wish was approved quickly and I met with the organization. I decided that I’d plan the trip around his 18th birthday. How exciting that would be for Dear Son. Extensive planning went into the trip and we made sure to get his swine flu, flu and pneumonia vaccines in order to take our trip. When we arrived at the hospital, the swine flu vaccine was non-existant. They had run out despite the fact that we scheduled the appointment some 25 days prior. Five days later, Dear Son came down with a slight fever and within 24 hours he had sepsis and within 48 hours he was on a ventilator. The Make a Wish trip was dashed.

Last year, a few days prior to his 18th birthday.

It was a devastating time. He got the swine flu and a viral pneumonia and was on the ventilator. His body was filling up with fluid. The ICU hospital staff was horrible-there was such hysteria over the swine flu and most didn’t know the procedure. The days were long in the ICU. After a while, you know the drill: vent, vent settings increase, patient improves slightly, vent settings decrease, vent removal, two more weeks recovery and then go home. How could this happen? I felt at that time that Dear Son had been through so much and the trip would be the one thing where he would experience total joy.

Photo of Dear Son four days prior to his 18th birthday.

As he lie on the vent, I thought about his little life. Some sixty plus hospitalizations. No child deserves a life like that. I was so sad, I mean, I try not to feel sorry for myself but why couldn’t my Dear Son have a great life? Why did he have to go through such suffering in his life?

His birthday arrived and I wondered if it would be his last. I desperately wanted him to survive. I thought it was horrible in 2006, when he had the MRSA pneumonia and almost died on Mother’s Day (he had a transfusion that saved his life). I thought that would be the worst possible outcome. But to die on his birthday, would be, devastating.

He was taken off the ventilator on Friday, the 13th, the day after his birthday. He wasn’t quite ready but they typically don’t like them to be on the vent beyond two weeks. He struggled to breathe. He made it through and came home last Thanksgiving but yet he struggled to breathe for weeks after that, then had pain issues and more hospitalizations for another two months before they located the source of his pain. Needless to say, it was a tough year. In May, he finally got to take his Make a Wish trip and we had a wonderful time. As his birthday approached this year, I was pretty nervous. October was rough. His breathing was terrible at times and I feared he was getting pneumonia. I knew I did not want to see him in the hospital again this year. Each time the hospitalizations get a little bit harder for him and a little bit harder for me. It’s not easy to forget.
So today, we celebrate his 19th birthday. It’s a glorious day. He's wearing his new birthday outfit for school. I baked a cake to send to school with some homemade buttercream frosting. He won’t be able to eat any of it, but he’ll enjoy the celebration. They’ll have a party for him and he’ll love all of the hoopla surrounding his birthday. He’ll smile when they sing, “Happy Birthday”. He’ll laugh when they clap for him and he’ll genuinely love all of the excitement around the day. I told him before he went to bed last night that it was going to be a great day today. He loves when I tell him that.

Life is very, very good today. I am really excited and thrilled that we have a 19th birthday to celebrate. After the darkest hour last year, a normal, happy birthday is about the best thing I could ever have. Never take birthdays for granted. I told Dear Son that when they light the candles on the cake today, to make a wish. I hope that whatever he wishes, come true. I’ve been blessed with a lot of things in my life, but the biggest blessing I have ever had, is spending another birthday with my Dear Son.

Note: Dear Son is nineteen years old and suffers from seizures, dystonia and is severely developmentally delayed due to a random mutation of the ARX gene. He also has a progressive neurological disease.