Tuesday, January 6, 2009

A cure



A year ago I wished, even got a little hopeful that one day there would be a cure for RTS.
Some fabulous person would find a way to replace that protein, find a prosthetic piece for the missing part of that chromosome.
Of course I knew this was nearly impossible, I still hoped. A year later, if you ask me do I want to cure Alex of RTS, I'm confidant I would say no.
Now, don't get me wrong, I would love for the feeding tube to be gone, I would love for him to crawl, walk, say "up momma". I would love to not schedule at least 3 more surgeries for him, stop taking him to therapy, stop yelling "come in" for his in home therapists. The "side effects" of RTS are hard. I don't like them.
Our special "birds" talk with their hands, or a device talks for them, our birds talk with their eyes, and smile. Even in their silence they say more than the most educated man covered in awards, and diplomas. In their silence they are teaching the world. All the world has to do is see it.
So now I just take it day by day, loving him with his button and tubes, loving him in his silence, loving him and his stationary little self.
Alex isn't RTS, he is Alexander Jon Pruitt, with a head full of hair, gorgeous blue eyes, and a love for books. Would I change who he is? Would I take away that smile that melts my heart, would I change the boy who teaches me un conditional love, patience, endurance, and hope.
Teaches me to be content where we are, teaches me to see the world differently, teaches me not to take the small things for granted, the lessons he has, and will continue to teach this awe struck world.
NEVER! Alex doesn't need a cure, we all need to be a little more like Alex.

17 comments:

Anonymous said...

Your son is beautiful. His smile could melt many icebergs :) You are fortunate to call Alex your son, your miracle. Hoping 2009 brings you many more joys.

Smiles,
Lisa

mom2LEAA said...

Thank you for sharing your gift with the world. His beautiful personality can be seen through his smile and eyes. May you continue to educate the world about your wonderful son.
Cindy

Rebecca Jo said...

Your last sentence just made me want to cry... amen sister!

The VW's said...

All so true! The world is a much better place because of all the Alex's out there!

I can totally relate. It's difficult because the symptoms aren't fun, but the love and lessons learned from our children make it ALL worthwhile and then some!

Our children are NOT what their condition is, they are themselves and just happen to have these conditions. It bothers me when people say that Gavin is a Downs baby. He IS NOT a Downs baby, he HAS Down syndrome! He is Gavin and Alex is Alex! And, What wonderful gifts they are!

I love that picture of your precious gift! What a honey!

Anonymous said...

What a beautiful face you have, little man!

I love you,
Your nan

Lorelle said...

You have such a beautiful way with words. Love to follow your blog!

Ally in Wonderland said...

I LOVE that photo of him. I love that you can see him and not the RTS, that smile is so sweet!!!

TCM said...

oh how beautifully written! Thats one for the wall! I LOVE THIS PHOTO!!! Great Shot! You are so good at expressing your heart, love it, thank you for this.. can I copy and post on my blog! All need to read this! Love ya and I really do think you love turquoise looky here its the main part of your wallpaper... hehehehe

Anonymous said...

What a great post! When my daughter was first diagnosed with Prader-Willi Syndrome, I met other parents whose main, overriding concern was "how soon will there be a cure??" Well, maybe someday there will be something, but I agree with you - let's enjoy our children for exactly who they are, which is wonderful, beautiful people who can teach the world a thing or two about love and happiness.

Love that picture of Alex, he's such a cutie.

J. in OH

Shari said...

Beautiful post! I agree! Children like Alex can teach so many lessons that we can not. I have already learned many by reading your blog. Thank you for allowing me to come back and check on your little cutie and to pray for him and your family.

connie said...

I can't even imagine the world without Alex. Exactly Alex.

Or without you, Jessica.

I'm so grateful for what Alex is teaching us, and who you are because of Alex.

Finding Normal said...

Beautifully written! We are so so blessed, aren't we?

Anonymous said...

Beautifully said. RTS does not define who Alex is, nor does it define who you are - Jessica Mommy to Alex/RTS. You are simply Jessica Mommy to Alex. Period! I wish you a lifetime of blessing from your little bird! Thanks for letting us all watch the flight path from here...

Cathy said...

I think you spoke so many of our heart here in your post. No our special ones may not have RTS but would we trade one single ounce of who they are, NO WAY! He is so precious and you are so blessed to be called his mommy!

angie said...

Beautiful writing! I truly agree that our children teach the world lessons that they would otherwise not learn. I'm guilty that some days I do wish that RTS would go away...or be cured. I wish that Emma didn't have to struggle so much, but when I think about it...I wouldn't want to change who she is for a minute. They are miracle babies, and they shine!

Kelly said...

I feel the same way. I asked Billy the other day if he wished things were different. We both said no...because it would mean that we would not have AnnaKate the way she is...and that is who we love!
Kelly

Julie Keefe said...

I love this post. I often tell people that instead of what is 'wrong' with Soph is really what is right with her. I wouldn't change her for anything. Not anything.