In June of last year, I applied to the Make a Wish Foundation for a wish for him. Dear Son has intractable seizures and is severely developmentally delayed due to a random gene mutation and now suffers from a progressive neurological disease. He will never get better. Our wish was approved in June of 2009 and we were scheduled to go to Disney for his 18th birthday in November. I was so excited. We chose Disney since it was accessible and we could get around easily with his wheelchair. The Make a Wish Foundation did a beautiful job of setting up our every need, making sure they had a hospital bed for him, his formula and all of his needs.
In late October, we went to the hospital to get his swine flu and flu vaccines before our trip. They ran out of the swine flu and six days later he got the swine flu and was on a ventilator within 48 hours. We were one week away from taking the trip of his life and now he was on a ventilator fighting for his life. In addition to the swine flu, he had a viral pneumonia. Dear Son is weak and can no longer cough so colds or pneumonia is life threatening. Instead of having his best birthday, it was his worst and he was on the ventilator for his 18th birthday. He was in the ICU for over three weeks.
We left the hospital on Thanksgiving Day. It seemed like he could breathe on his own however once we returned home, that was not the case. I had to give him round the clock breathing treatments to keep him alive. During that time, he also cried non-stop. I wasn’t sure if he was going to die or what. The doctors couldn’t find the source of the crying so he was hospitalized again in December of 2009 and January of this year until they figured out what the problem was. They finally figured it out and everything was resolved in early February.
Dear Son was unable to go to school for months. In addition, the recovery took a long time. He was unable to sit up for months so we couldn’t reschedule our trip. Finally, in May of this year, we asked the doctor if we could take the trip. He was barely able to sit up for two hours so our main concern was if he would be able to sit up to make the airplane trip.
Fortunately, he was able to sit up for the trip! He got scared on the plane when the plane was moving around for takeoff. He gripped my hand tight and wouldn’t let go. I put my arm around him and told him not to be scared and that it would be fun. I said that the pilot was going to step on the gas and the plane would go really fast. I said that men like the takeoff and that most pilots were men. (Not sure if this is true, lol!) Well, after that, the plane took off and his head went back into the headrest from the take off. He had a big smile on his face and loved it! It was an exciting time!
We had a great time at Disney. We had to limit our activities a bit to just a few things each morning since that was all he could manage. They had an accessible pool so Dad and I were able to take him in the water to relax and then sit him on a beach chair to relax. It was the best trip ever!
The only downside was that he missed his graduation from high school. It was the only time they had a May graduation! Now he goes to a Transition Center, run by the special education cooperative. He attends only two mornings a week since he’s still weak. He loves it and can attend until the age of 22.
By this time, I was determined to make the most of 2010. I love making Halloween costumes so I made him an adorable bed bug costume (complete with a bed and quilt to fit over his wheelchair!) for the Halloween party at school. Needless to say, he was the talk of the classroom!
There have been many times over the past few years that we have spent both Thanksgiving and Christmas in the hospital. During those times, I realized just how important those times were, times that I often took for granted. Now I understand that when you have your family around, good food on the table and you have your health, you have everything. Merry Christmas and Happy Holidays.
Dream Mom and Dear Son