A special thank you to all of my blog readers for your support and prayers for my Dear Son over this past year. I have been blessed this past year to see my son grow up and spend more time with him. This season, I am thankful for many things: my family, my friends, Dear Son's doctors and medical staff who took good care of him, Dear Son's teachers and staff that not only take care of him but make it fun for him at school and for the bus drivers and bus aides, who always go that extra mile to care for him. It takes a lot of people to take care of children like Dear Son and I am blessed beyond words to have the support of everyone. It has also been wonderful to have so many people who support and read about Dear Son on the blog, it means a lot.
So today, I feel enormously blessed. Dear Son is happy and healthy this Christmas. I had time to take a picture of Dear Son and have Christmas cards made, something I was unable to do last year. In addition, I sent out a Christmas letter to most of them. I have never done this before however it was interesting to take a look back, at everything Dear Son has been through this past year. I thought you might enjoy it too.
2010 Christmas Letter
Happy Holidays! Dear Son and I are excited to celebrate Christmas this year. He had a very rough year in 2009 and as a result, I was unable to send out any Christmas cards. As you are aware, Dear Son has been having more health issues over the past few years, now that he can’t move very much. He's had bouts with pneumonia over the past few years and in May of last year went into the hospital to get his device that controls his seizures replaced. A medical error was made and his lung collapsed so he spent weeks in the ICU and it took months to recover. All of this was in addition to losing my older sister to colon cancer in March of 2009.
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!
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!
Since that time, we have been able to avoid the hospital so far other than a small pneumonia in August. I feel so blessed to have another Christmas with Dear Son. The doctors tell me he will most likely die of pneumonia and they don’t know if they can save him anymore. This past year he has lost his ability to move his feet and he can only sit up for a short period of time.
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.
Love,
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.
Love,
Dream Mom and Dear Son
2 comments:
Merry Christmas to both of you! :)
(((hugs))) Thim :)
Merry Christmas and Happy New Year to you and your dear son! Great Christmas letter!
Best,
Gloria
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