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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....

Monday, November 23, 2009

A Change of Heart

This morning Timmy's CAP-C case manager stopped by to drop off a belated birthday gift for Timmy, before she headed off to the hospital to undergo surgery to repair a torn rotator cuff in her shoulder.

This was such a wonderful gesture, being that buying gifts for her clients isn't something that she typically does. Because she feels that if for some reason (finances, illness), she is unable to purchase something for one of her clients it would be unfair to that person.  

I guess like the majority of people in which Timmy has come in contact with, he has stolen her heart strings and wrapped them tightly around his little finger.

Timmy's amazing strength and willingness to fight and overcome illnesses and obstacles in his life, his ability to give love without a single spoken word or gesture, his personality, his bright smile that will light up any room and his contageous laughter is sure to steal the hearts of anyone.

Once Timmy's CAP-C case manager had left, Emily immediately volunteered to help Timmy open his present. By this time, it was time to put Emily on the school bus. So we promised that Timmy would wait til this afternoon to open his present, so that she could be there to help.

On Mondays and Wednesdays, Timmy and Emily arrive home from school about the same time (1:30-1:45PM). Today Timmy arrived home about 30 minute before Emily. Once Emily got home she immediately wanted to sing Happy Birthday To Timmy and help him to open his present.

Emily insisted that everyone participate in singing Happy Birthday. If she caught someone not singing, if someone sneezed or coughed, or spoke to another person, she would start singing the Birthday Song from the beginning. After 4 attempts, we FINALLY got the song sang to her satisfaction.

Once the present was opened, As an adult, I'm ashamed to admit, my very 1st thought was a very ungrateful one. "What in the world is a non verbal special needs child going to do with a set of Walkie Talkies?" I can't explain why I had such an ungrateful thought. Honestly, I'm not typically an ungrateful person. I can usually find the best in anything and anyone. I knew that the gift was bought with a lot of thought, by a mom who understands disabilities. Timmy's CAP-C case manager has a son, who has a visual impairment, developmental delays and other special needs.

It was at that moment that I had a virtual slap in the face or a bump on my noggin. Of course, Walkie Talkies are a perfect gift for a non verbal special needs child. How? Well, with the help from an adult or a sibling, the vocalizations that Timmy makes, even though they aren't words, CAN be taken as conversation. And the holder of the 2nd Walkie Talkie can carry on a conversation with Timmy. Which hopefully will help him to understand the pattern to a meaningful conversation and possibly pick up new words.

At about this same time, I guess it was the force of the virtual slap or bump on my noggin that gave me two ideas for uses of the Walkie Talkies. We have a baby monitor in Timmy's room, Unfortunately his monitor doesn;'t have intercom capabilities. So if one of us happens to be downstairs with Timmy while the other parent is upstairs, one of us has to come to the bottom of the stairs and yell up stairs to have questions answered. The same goes if both of us happens to be upstairs and one of Timmy's nurses has a question or concern that needs addressing.

Timmy's monitor is always on if one or both of us is upstairs. So we could use the Walkie Talkies to talk to each other while still being able to tend to Timmy's needs and not having to run to the stairs and yell up to have questions answered.

The moral of this story is; When someone does something nice for you or someone that you love, instead of being ungrateful and finding faught in the gift; Look closely at the gift and try to find something positive within it. If you look long and hard enough, you will surely find something positive that will truely turn our ungrateful frown upside down. SMILE!

1 comment: said...

Donna, thanks for sharing this post. I have to admit I've done this plenty of times. Owen's family (Nathan's dad) in particular always give Nathan non-special needs toys and I always just give them away without finding a use for them. I'm gonna have to look harder this xmas :-)

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