Seamus is not like other little boys.
He was born with something called Hurler's syndrome. Basically, it is a genetic disorder: I was found to be a carrier of the defective enzyme; as a result, it was passed on to Seamus Michael, our son. He is now six and a half years old and has lost many of the skills he was learning and requires total care. He can no longer talk or walk and is fed by a tube in the nose or stomach.
We didn't know anything was wrong initially, but around age two, we noticed Seamus wasn't developmentally on target and seemed to have unusual facial features, plus he was losing physical skills as well as mental decline. We got very concerned, so we took him to our primary pediatrician; Dr. Glasgow, in kind, suspected something more was going on, so he suggested that we see a geneticist.
It was a very hard time for us, seeing our son undergoing test after test after test, but we were desperate for answers, as to why our son was losing one skill after another and why he seemed far younger than his true age. By the time he was four, we were devastated to learn that our son had Hurler syndrome, which is a genetic disorder. In time, our boy would lose one developmental skill after another, as well as physical and mental deterioation, and he would, more than likely, die by the age of ten from heart, lung, or multiple organ failure.
It was the worst possible news to ever get as a parent.
Right after our son was diagnosed, my wife, Diane, left me and Seamus. She couldn't deal with the fact that her son had a terminal condition, so she, basically, flew the coop. I didn't know what to do but once I got over the shock, I became determined to give Seamus a good life, even in spite of the death sentence he had been handed.
I've been his caretaker ever since. And I wouldn't have it any other way. I love Seamus far too much than to have him committed to a home with strange people caring for his every need. Besides, I feel I can do a far better job in providing for him ... and I have.
It isn't easy taking care of Seamus because he needs to be dressed/undressed, diapered, fed by tube up to five times a day (his medications are given to him the same way; he can no longer chew or swallow on his own), bathed, and driven to doctor's or therapy appointments five days a week. He is homeschooled because he is too medically fragile to attend public school: his immune system and his lungs are too vulnerable: he is liable to catch just about any bug that comes his way.
When Seamus gets sick, he ends up in the hospital (usually with pneumonia or some other bug), fighting for his life; and then I have to pray like heck for a miracle. So far God has listened to my most desperate prayers because Seamus is still with me, which has been a huge blessing.
I would have liked to have another child, but Diane didn't give me a second chance. She didn't want to be responsible for his care any more when he got diagnosed, so I have had to become his mother as well as be his father. I have had to give up my job as an executive in a law firm; I'm now making far less than I used to when I was working, and I have had to pinch just about every cent or dollar I get. Caring for a child like Seamus is NOT cheap by any means, but loving family members and church friends have reached out in love and have made sure that I have all I (or Seamus) could ever need. Their love and generosity has been nothing short of incredible!
So that's how it stands at the current time: making sure my son is comfortable and stays healthy, meanwhile, showering him with all the love and support a father can muster. Seamus enjoys having me here and he loves people: he is a people pleaser, as people have come to find out. They soon forget of his problems when all they have to do is hear him laugh or see his megawatt smile.
Just keep me and Seamus in your prayers; it isn't easy being a single parent anyway, but especially to a child like my son. It's only by God's grace that I've gotten this far and every day I pray for more strength because I certainly cannot do it on my own! I would greatly appreciate it and so would Seamus! Thanks in advance!
~Chad C. Monahan, Nyack, New York.