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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 23, 2010

Who;s Sentimental?

Meet Scratchy Bunny
Timmy received Scratchy Bunny for his 1st Easter, at 5 months of age. Timmy hasn't been seperated from Scratchy Bunny over the past almost 6 years. He sleeps with him and plays with him during the day. Scratchy Bunny has been with Timmy during every hospitalization and sleep study. Scratchy Bunny is made from a rough, coarse material. I believe this is one reason that Timmy loves Scratchy Bunny so. Over the past almost 6 years, Scratchy Bunny has had to undergo many repair surgeries to help keep him in tact.

Tonight Timmy and Daddy are at UNC for a sleep study. Dr. Z (ENT) requested the sleep study to make sure that Timmy is doing well at night with his breathing, before he takes Timmy into surgery in early April to surgerically close Timmy's trach stoma.

This time Scratchy Bunny did not go along. This was my decision. I now feel so terribly bad, because I feel like I have let Timmy down by having him to leave his favorite toy which has always been with him behind. I know that I'm the only one who feels bad and is upset that Scratchy Bunny isn't with Timmy. Timmy has other stuffed toys which he likes just as much as Scratchy Bunny. He has a soft giraffe and 2 GUND stuffed toys, a tiger and a monkey. Both the tiger and monkey are made from a coarse, rough material, but not the same as Scratchy Bunny.

Timmy took Melman, his giraffe along with him tonight for the sleep study. When Daddy called, he said that Timmy was all tucked in with Melman and on his way to dreamland.

So why do I feel so terribly bad? Maybe it is because I'm scared to pack Scratchy Bunny away. I'm afraid that if Scratchy is packed away I'm also putting away apart of Timmy's past in which has been physically and emotionally difficult at times, but yet precious and rewarding. I fear that if I do give in and pack Scratchy Bunny away, I'm admiting that I'm willing to let my little boy grow up. That I'm mentally and emotionally ready to completely put the past behind and dive head first into a future with Timmy which will most likely be filled with uncertainities and no true direction. Scratchy hasn't only been Timmy's security toy, but it seems that he has been mine as well.

So will I give in and pack Scratch away? Right now I'm too upset to answer. Maybe tomorrow or one day in the near future both Timmy and I will together agree and put Scratchy away. But for now Scratchy is awaiting Timmy's return laying on Timmy's pillow.

After dinner and a bath, Emily and I spent some much needed and deserved quality time together. We read Emily's school library book, which Emily really enjoyed.
The book is about a little boy who made a sail boat from a pencil, a cork and some cloth. The boy took his boat to the lake one day to play. He held tightly to a string which was attached to his boat. A storm came up and he accidently let the string go. The storm took the sail boat far out onto the lake. Where the small sail boat encountered many different larger boats. A fishing boat came along and helped the small sail boat back to shore, where it was reunited with the boy. The samll sail boat and the boy both were so excited to once again be back together.

After reading the book, we cuddled and rocked while watching what seemed like a zillion episodes of SpongeBob! That is one CRAZY cartoon. Emily went to bed without any fussing or excuses for needing to get up.

The perfect endong to a beautifully warm day!


ANewKindOfPerfect said...

Maybe Scratchy doesn't need to be put away, but just put up on a shelf? That way he could still be in Timothy's room and life and just not be as handled.

I hope his sleep study went well!

sugar magnolia said...

Just found your blog...I love it! My daughter, age 3 1/2, also has a trach, hearing aids and a g-tube. Miracles of miracles, we haven't used her g-tube since last July and are getting it out this July. I am praying her trach comes out then too. I read your blog posts when your son's trach came out...and cried! It's my dream, to, to take my daughter to the beach...we live so close! Your son is amazing, and very inspirational. I will be following your blog now for sure!

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