Monday, November 16, 2009

A real boy, one with no strings.......


Those of you familiar with the blog world have probably been following sweet Stellans story and his mom MckMamma, and have rejoiced in his amazing recovery. SVT free, and alive!!!! AMAZING! I recently watched the family reuniting at the airport, and in a snippet of the interview his mamma said "its like he is a real boy, one with no strings". OF COURSE I know what she meant, he can now play, sleep, learn, and grow without the wall of SVT waiting to come crashing down on him. OF COURSE he was a real boy when he had his medical special needs, but it got me thinking about the way people perceive our kids with special needs. Yes, everyone knows they are real living breathing people, but because they may not interact the same, or may be "tied" down with equipment, or maybe only had a few short breaths on this earth, they aren't really living, and have a less meaningful life. How does the world perceive those with disabilities.......

I will admit that I understand what MckMamma was saying, the "experience" we all hope for when we are pregnant isn't to watch our baby die, or have medical procedures and hospital stays, our experience doesn't include geneticist and their diagnosis. We hope for the typical "rose bud lip" experience, and for most people that's what "real" is. For some of us we experience another story, that is very much real, I do remember wishing in the NICU that I just wanted to do it all over again, I didn't want to move forward in this journey, I remember seeing pregnant nurses in the NICU and wishing for their story instead. Those days of wishing are long gone, this is our very real life, and, Alex is very much a real boy, and those "strings" called RTS, are not going to make his life any less real, in fact he is going to impact the world with his strings more than he would had he just had "rose bud lips"!

6 comments:

Our Journey said...

beautifully written!! thanks for sharing! i cant imagine life without the RTS strings, they have made us all better people and enriched our lifes with awesome friends, therapists, drs and so on!!

love the picture!!!

Jacqui said...

Beautiful and true words - he will indeed impact the world, in fact he already has.

Finding Normal said...

So true.
I'd type more, but my girl and her strings are sitting on the couch with me and I feel the need to hold on! Wheeeeeee!

Kelly said...

What a different world it is!

Your words lifted me up today...I needed it.

Kelly

Myssie said...

Alex is already changing the world! I thought the same thing when I watched the video of Mckmama but you put it in to beautiful words where as I would have just said a curse word!!

BUT...let's remember, if we had no RTS in our lives we wouldn't have each other in our lives!! Love you girl!

Ps. my word verification is: hisboob Hehehe...she said boob!!

connie said...

Amen, sister.