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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....

Thursday, January 20, 2011

Some Cuteness To Share

Timmy's Autumn Kindergarten Picture. Is he just the cutest?!

My 13 year old son, Zachary, was given a class assignment during the 1st. week of school. The assignment was for him to write a short biography about himself. This assignment was to help the teacher to get to know her students better. Zachary's teacher called me yesterday to discuss the paper that Zachary had submitted to her. She just thought that it was so touching, even though it wasn't exactly what the assignment that was assigned was suppose to be. When Zachary got home, I asked him why he hadn't followed the directions that the teacher had given him for his biography. With tears welling up in his eyes, he says, "I'm sorry mom! But my teacher has the next 9 months to get to know me. I feel that everyone should get to know Timmy too." All I could do was to give him a hug! What a loving and caring big brother Timmy has. Here is a copy of the paper that Zachary submitted to his teacher. I asked his teacher to email me a copy and she did. I worn you, this brought tears to my eyes. Maybe it is because I'm the proud parent of both of these special boys!
September 2, 2009
It was five years ago when my little brother was born. I was 7 years old. I remember he weighed 1lbs 6 ounces and he was only a foot in length. He was born 2 months early, so he had to stay in the hospital. I remember my mom sitting down with me and explaining to me that my little brother was very sick. And because he was so sick he had to be on a speical machine, which was helping him to breathe. I also remember her telling me that he had Down Syndrome, that his brain was abnormal, he has a small head, was born without any eyes, that he has diabetes and that no one was sure if he could hear. I started to cry and I asked, "Will he ever be able to play with me?" My mom told me that yes he would be able to play with me, but only in a different way. That no one was sure, but Timmy may never be able to walk, run or talk.
Being I was so young, my mom had to get special permission from someone at the hospital, so that I could go and see him. He was so small and was hooked up to alot of wires. I was so scared! I remember thinking, if I could have 1 wish, it would be for my brother to be on and to come home soon. My mom broought along a book for me to read to him. I don't remember the name of the book. I did have fun reading to him. And all of the nurses in the NICU told me I was so cute.
Four and a half months after he was born, it sure seemed a lot longer than that to me, the doctor's said it was ok for him to go home. While my mom was busy getting things at her house ready for Timmy to come home, I had to stay with my dad, at his house. When Timmy finally was home and I was able to see him, I asked my mom if I could hold him. She said yes. He was still very smal, weighing only 7lbs 2ozs. But I enjoyed holding him for the first time.

One afternoon when I got home from school, I noticed an unfamiliar car in our driveway. When I entered the door I found a strange person in out living room. I went to ask my mom who she was. My mom told me that we were going to have nurses to help us care for Timmy. I personally didn’t like this nurse, because she was boring, rude and never paid much attention to Timmy. All she did was read a lot. My mom didn't keep this nurse around very long.

The one thing that Timmy hates the most is having his teeth brushed. One morning not too long ago, Timmy's nurse told him it was time for him to get his teeth brushed. Timmy did what he usually does, which was to shake his head no. But this time when the nurse had him to touch the tooth brush he said "Oh man!" That was so funny!! It was also the first time that I had heard Timmy say something other than MaMa.

When my brother was born he had to have a tracheostomy to help him breathe, because both of his nasal passages were blocked. Two months ago he had a sleep study. When he came back the doctors had taken his trach out. I was so happy and proud of my little brother.
Timmy has alot of medical issues, I still enjoy playing with him. My favorite game that we both like to play is when I take him for a fast ride around the house, pushing him in his toddler rocker. We use to play a similar game, when Timmy was younger and used a baby walker. He just thinks this game is so very funny. I love to hear him laugh, because it makes me feel good to know that I'm making him happy.
I LOVE my brother Timmy!!!!!!!!


ANewKindOfPerfect said...

First off, that photo is so handsome. What a cute boy you have there!

Then the essay your older son wrote. What an amazing big brother. :)

Nancy @ momjustlikeyou said...

That essay is wonderful! Children like Timmy can teach us and our children a thing or two about the value of life and living. God bless your family and your sweet little boy!

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