Putting things in perspective. That is how I live my life. Not having oodles of extra money, but having caring friends and family. Not being model thin, but having good health nonetheless. Brady having Williams syndrome, Brady not having anything worse.
Our PT is going to a funeral this weekend for a nine-year-old boy who died after a two-year fight with leukemia. So, when he was seven, his parents were told their son had cancer. It's so hard to fathom they were given this news about their little boy. It certainly reminds us all how lucky we are.
I think I touch upon this topic frequently in my blog because not only is it so true, but I am almost ashamed of people telling me how great I'm doing with Brady, how proud they are of me. I DO appreciate all the good thoughts, (and sometimes I need encouragement) but what other people go through are ten times more than me. I am just doing what ALL moms do, special needs kids or not; they take care of their family.
My heart goes out to this boy who lost his battle and his family. Please send your prayers. Thank you~
It has been a strange couple days. We've been getting ready for school starting tomorrow, little projects around the house and setting up the Fall calendars. Nothing really out of the ordinary.
We get up in the morning, I sit Brady in his highchair, hand him his Poptart and he starts eating it. As the day progresses, I may bring Brady into the living room amongst all his toys (I have found leaving them all over the floor is much easier for him LOL) and he crawls from toy to toy, bangs on the ones to elicit songs, climbs up onto the scooters to move the steering wheel back and forth like he's driving, scoots over to the fence to tease the dog for kisses.
For lunch, he devours cream cheese on crackers, scowls at me when I give him baby veggies, opens his mouth wide for pudding. Manages to get Oreo slime in his hair, on his arms, behind his neck. Throws a fit when I clean him up. When he goes into his crib for a nap, he stands at the end and calls for half an hour.
When I need to start dinner, Brady will get some fun exciting Wiggles time - he sees the opening credits and smiles big, some kind of excited laugh comes out. He plays with his toys, sporadically turning around to the TV to watch the Wiggles dance and sing.
Wait a minute... can it be... he's acting like a... toddler?? Wow... it just all of a sudden hit me that he's acting more toddler-ish than baby-ish. His low tone has held him back for so long, but it is now an area that has progressed significantly. I feel like some weight has been lifted off my shoulder, that as his third birthday draws near, it will not be the same this year as it has been.
Tom and I were married in 1995 and had our first son Michael in 1998. Our second son Brady was born in 2005. Within the first month, he was suspected to have William's Syndrome, a genetic condition. Official diagnosis came three months later.
Williams syndrome is a rare genetic condition (estimated to occur in 1/7,500 births) which causes medical and developmental problems.
Williams syndrome is caused by a spontaneously occurring deletion of 20 genes on chromosome #7, including the gene that makes the protein elastin, which provides strength and elasticity to vessel walls. The heart and blood vessel abnormalities are caused by this lack of elastin. Most young children with Williams syndrome are described as having similar facial features. These features include a small upturned nose, wide mouth, full lips, small chin, and puffiness around the eyes. Blue and green-eyed children with Williams syndrome can have a prominent "starburst" or white lacy pattern on their iris.
The majority of individuals with Williams syndrome have some type of heart or blood vessel problem. Typically, there is narrowing in the aorta (producing supravalvular aortic stenosis SVAS), or narrowing in the pulmonary arteries. There is a broad range in the degree of narrowing, ranging from trivial to severe (requiring surgical correction of the defect).
Individuals with Williams syndrome have a very endearing personality. They have a unique strength in their expressive language skills, and are extremely polite. They are typically unafraid of strangers and show a greater interest in contact with adults than with their peers.
(adapted from the Williams Syndrome Association website)