I have been following this blog and today's post on what do you see, sounds like I wrote it...ok, better than I could write but it says what I think :)
Posted: 14 Nov 2008 04:47 PM CST
WHAT DO YOU SEE…
*when a tiny baby sucks its bottle and swallows?
I see something my son may never be able to do.
*when you take your child’s temperature?
I see 97.6 because my son’s brain no longer understands that it’s a degree colder than it should be.
*when you see diapers at the store?
I see that the largest size is a 6 and my son is already wearing a 5 and I wonder what we will use when those don’t fit anymore.
*when you get an invitation for extended family campouts each summer?
I see a list of campouts I will be lucky to go to because I somehow have to schedule them between therapies and doctor visits and work and all the responsibilities of caring for a special needs child.
*when children are making their Christmas lists each year?
I see hours of wandering through the stores hoping I can find something that Samuel can enjoy or even begin to interact with.
I see a myriad of worries like how will I lift a full-grown man when I’m 70 years old and what will happen to Samuel when I’m not here to care for him anymore.
*when you see the latest fashions for your child?
I see shirts that need to be extra long to cover Samuel’s g-tube when he’s arching his back, pants with drawstrings because his waist is so thin, socks that need to be tight because he will kick them off and shoes that need to be soft because he likes to kick me .
I see beds that Samuel will roll right out of or beds that he will inadvertently hurt himself on. I see beds that need to be adjustable for when he is sick and can’t swallow or breath well and beds that need to lay flat for when he is healthy and wiggly.
I see the one birthday party invitation that Samuel got last year from his friend at preschool. I see a little 5-year-old boy who saw nothing wrong about inviting his immobile, nonverbal friend to come to his party – a little boy who actually insisted on it. And that warms my heart.
*when you walk in your house?
I see a walker, a stander, a wheelchair, a bath seat, a therapy table, a crawling slide, floor mats, therapy balls, communication buttons, switch operated toys and a 42 inch long, adorable red head in a padded crib that is soon to be too small.
*when you get in your car?
I see a huge car seat, a huge stroller, an oxygen tank and an emergency pack full of extra diapers, clothes, medications and feeding supplies.
*when you see a full bathtub, a toddler eating peanuts or a kid’s backpack?
I see 3 different ways to sustain an anoxic brain injury and I obsess worry about it.
I see people who don’t appreciate what they have – the ability to stand, to walk, to talk, to contribute to life. I see people who are forgetting how fast things can change and how quickly that can be taken away.
*when you get your health insurance bill?
I see a bill large enough to be a house payment that I prioritize high above my house payment because even though I can’t afford to pay it, I REALLY can’t afford NOT to pay it!
*when you see a child staring your way?
Almost always, I see someone with genuine concern and curiosity about my son. Children’s hearts are so pure that they literally just want to know what Samuel CAN do. They never ask about his inabilities. They just want to know what his ABILITIES are. And they want to know them so they can interact with him. The thing I love the most is they aren’t afraid to just ASK.
*when an adult is staring your way?
I see someone who has had too many years of worrying what to say and how to say it and how to be politically correct. Honestly, I wish they would just ASK because I can see them staring – no matter how sure they are I can’t.