While Dear Son was in the Intensive Care Unit last month, I had plenty of time to reflect on his life. As time goes on, his lungs are getting progressively weaker. He can no longer sustain either the Bi-Pap or C-Pap machines and there was much discussion as to whether he could survive an extubation, had he been placed on a ventilator. His throat muscles have deteriorated that he hasn't been able to process his secretions for some time now. In 2004, he got the g-tube, in 2006, he went on g-tube feedings and hasn't been able to eat anything by mouth since then. In addition, they tell me that they think he aspirates all the time. I have known for some time now that he has a progressive condition and that he will not recover. It is my understanding that he will most likely die from pneumonia so every hospitalization is like a race against time. As he lie in the bed, I felt that life for him, just hadn't been very fair. Any mother wants her child to have a good life, wants her child to be happy and to have it all. Dear Son however, has had almost sixty hospitalizations in his seventeen years. Far too many, if you ask me. Each time, we get a little closer to the end and I worry that one of these times, it will be over. I decided when he was there that I wanted to make sure that we would do something really fun while he could still enjoy it.
Last Sunday evening, I decided to check out the, "Make a Wish Foundation". I read the requirements and Dear Son easily met them so I completed the online form. On Monday, the local office called and on Tuesday I returned the call to the foundation. They asked me a few questions including his diagnosis and his doctor's name. They faxed a form and called his pediatric neurologist and by 10 a.m. on Wednesday morning, Dear Son had been approved for a wish.
Dear Son loves people, animals and loves the outdoors. He loves swimming (o.k. maybe just floating in the pool) and country music. I think I would like to take a trip somewhere with him (his father will go on the trip as well) since the only place I usually pack for is the hospital. Also, since it's so hard to get around, it would be great to have someone make the trip easier for us. I have thought it might be fun for him to swim with the dolphins or to go to Nashville or some country music place. I'd also love it if he could get a therapeutic massage. I'd like him to have a lot of fun and to be pampered. If you know of someone who had a trip or if you have any ideas for him, I'd love to hear them. Dear Son has no real use of his hands or arms, can not speak, is not toilet trained and can not stand or weight bear at all. Keep that in mind as you think about things that he may enjoy.
Finally, Dear Son will be out of school until summer school starts on June 22nd. I probably won't be posting as much since I will be caring for him 24/7 on most days, along with work and doctor appointments. I'll do the best I can. On Monday, he'll receive a $3,000 custom back to his wheelchair that will better support him now that he can no longer sit up without falling over to the side.
Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation. He also appeared in the Journal of Neurology a few years ago.