There are those days where I wish I could do more for my son. At times this is not feasible.
My son is mentally disabled (he has Down's syndrome). As he gets older, the demands he's placed upon our family have become increasingly difficult.
Remy is fifteen now, practically a man. He's not a child; yet his mind tells the tale. Because of one lousy extra chromosome, our son is mentally disabled for the rest of his life.
He may be fifteen, physically; mentally, he's a six year old boy.
Remy only says a few words; when he does, his speech is hard to decipher. He is just learning how to read/write.
He spends his days watching game shows on television (he doesn't go to school since his school burned down a few months back; it is up to us to try to teach him). If bored, he will spend hours tearing the house apart. Often, when he gets angry, he becomes violent.
Remy has serious issues with his heart: he's been in and out of the hospital for most of his life, has had several major surgeries that warrented many hours of worry and lengthy recovery.
He's nearly died several times during and after surgery; it's only by a miracle that our son is still here.
At night, Remy uses oxygen to help him breathe. He has asthma and if it isn't his heart, it's his breathing that gives him the most trouble.
Because of his fragile health, I can't really leave my son's side. If I do, it is only for a few hours. At times being with him is enough to drive me crazy because Remy is often so unpredictable in his behavior.
When I do leave my son, it is to go to the store, to the bank--you know, the usual errands. All the time I am out making my rounds, my mind always wanders back to my son: is he still breathing? Is his heart okay?
Does someone know what to do in case he should happen to have difficulty in breathing or his heart decides to stop?
Does anyone know the number of the local EMS unit? Do they know how to do CPR or are they licensed to do so?
What would happen if they were to make a mistake and for some reason, my son (God forbid!) ends up dying? What would I do then??
This is why when I am out, I have a friend who's a nurse stay with Remy, so she can keep an eye on him while I am out of the house. I wouldn't trust a normal person with my son because for one thing Remy isn't like most teenagers. Remy is seriously handicapped, both mentally and physically, requiring constant supervision.
Most people wouldn't know what to do if Remy were to get sick. I do, and so does my husband and our older daughter, Rochelle, who is nineteen. When Remy or Georg aren't home, I am; if I am not there, it's Ellen Genucci, my nurse-friend, who watches over my boy.
She has the medical training to deal with unexpected crises that may happen. With her expertise in caring for children with special needs, I feel very confident in Ellen's abilities. I trust her judgement and her skills as a nurse/caretaker.
I wish I could do more to help my son; however, a person can only do so much before they go crazy.
At times I get so frustrated with Remy I wish he would die. I've considered placing him in a home or residence for seriously handicapped children/adults, especially when he has one of his temper tantrums or misbehaves.
I know my son needs me. I realize this. Remy is an adult; however, his disabilites make him seem much younger; caring for a child/young adult like Remy is difficult at best.