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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Tuesday, February 2, 2010

What Is Normal?

Now that I have had the opportunity to calm my serves, relieve some stress and dry my tears, I find myself asking, What Is Normal? Does Normal apply to what the parent(s) want and feel is best for their disabled child? What the child who is disabled may want or feel is important to them? Or for what society as a whole feels a child or adult with a disability should be to fit into society?

The dictionary's defination of Normal is as follows;

–adjective 1. conforming to the standard or the common type; usual; not abnormal; regular; natural.
2. serving to establish a standard

The Biology, Medicine, Medical defination of Normal is;
a. free from any infection or other form of disease or malformation, or from experimental therapy or manipulation.
b. of natural occurrence.

This past week has been a week from HELL for me, mentally and emotionally. I/we want so bad for Timmy to have eyes so that he fits into the "norm" or what society sees as normal. If for no other reason so that people don't point, laugh, ridacule and stereotype Timmy when we have him out in public. But who is really getting hurt here? Who's feelings are we really trying to protect, ours or Timmy's?

Different people including doctors have their own opinion as to whether having artificial eyes are strictly necessary, so that the face doesn't become deformed. Or if it is strictly cosmetic and an esteem booster. We are torn as to which opinion is true. We definately don't want to withhold treatment if it is possible it may cause Timmy's face to become deformed. And if it is strictly cosmetic and an esteem booster, who are we really helping here?

Timmy received his left artificial eye on Jan. 25th. The first couple of days went well. He kept the eye in place. On Wednesday Jan. 27th, with a big yawn, Timmy managed to pop the eye out. Timmy's home health nurse was able to get the eye back in without any problems. Sometime after Timmy was put to bed on Thursday night or early Friday morning upon Timmy's awakening, he manages to get the eye out. So Timmy's nurse was unable to get the eye itself back in, but managed to get a conformer into the eye socket to help hold the eye socket open. Throughout this entire process Timmy is screaming and crying in protest. Does replacing the eye or the conformer hurt? Or is the screaming and crying only in frustration and our "Drama King's" way of seeking sympathy? I don't know. It is possible it could be a little of both, but being that Timmy is unable to tell us, we can only assume that yes trying to replace the eye or the conformer may be a bit uncomfortable. We were able to keep the conformer in place and we replaced the conformer with the eye Sunday morning. During this process Timmy screamed and cried. Late last night after we put Timmy to bed or early this morning the eye came out. We were unable to get the eye back in, but managed after an hour of off and on trying, we finally got the conformer in. While at school, just before it was time to come home, Mr. Hands (Timmy) used his finger and poked the conformer out once again. His nurse tried and was unsuccessful to replace the conformer. When they got home, Dad put a call into the Doc. But being there is an ice storm, they clinic is running a skeleton crew and Timmy's Doc and his fellow was unavailable to offer any advice or suggestions. Being the pack rat that I am, I had saved previous conformers that had been placed during surgical proceedures but had subsequestly along the way been poked out by Timmy or worked their way out on their won, due to the body rejecting them. Through some screaming and crying from Timmy, myself and Timmy's nurse managed to get the smallest of conformers back into his eye socket.

Being that the eye or the conformer has been removed and replaced sooo many times in this past week, Timmy's eye is all swollen and red. I ask myself what are we accomplishing by causing him pain, discomfort and trauma?

I usually see myself as a mom who is strong willed, stubborn, with lots of determination, and the will to keep trying until I succeed. But this past week I now see myself breaking down. I see a  mom who is weak, complacent, meek and full of irresolution and doubt.

Am I causing my son to hate me? To associate my presence with pain and trauma? I don't want this. I want my son to trust me. To know that I am here to protect him from hurt and harm. To know that I LOVE him with all of my heart, body and soul, unconditionally, just the way he is. So why are we putting Timmy through all of this?

I'm sure that Timmy could care less what society thinks about how he looks or who he is. Timmy is a little boy, who is very happy, with a big bright smile, a funny disposition, a great personality and the BEST son that any parent could ever dream of or want.

As for society, why should we have to try to change our disabled child, to make him look normal so that he fits in? Because society as a whole is cruel. Only in a perfect world would society accept, embrace, educate, and learn from those who are different. Not look down on those who are different with scorn and pity. It is heartbreaking and a shame that a small group of people has to change for the majority just to be accepted in society and be thought of as "normal."

Timmy has an appointment with his occular Plastic Surgeon on Feb. 8th. At this time we will discuss our options and the pros and cons of continuing with trying to get eyes for Timmy.

In the meantime I ask that you please pray for my/our mental and emotional sanity. And that Timmy truly knows that I/we do LOVE him.

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