Sunday, July 10, 2011

Summertime and the living IS


As Madi was being wheeled into her February surgery, Dr. Deeney announced, "I have great news. This is your last VEPTR surgery".
I guess he thought that would be wonderful. But, Madi being Madi, she started to cry. She thought it meant she wouldn't see her nurses, doctors, and child life specialists from Children's Hospital of Pittsburgh again.
Dr. Deeney assured her she has to come back for visits- but not surgery, and she eventually calmed down.
Leaving the floor after recovering was just like a movie. The nurses lined the halls and hugged her as she left...they have literally seen her grow up before their eyes.
I'd like to tell you I am relieved. Ecstatic. Over joyed. But I can't. I can tell you that the end of the VEPTR journey is simply a turn in this long road. Madi still has joint pain and swelling; she "sprains" anything and everything easily; her skin is still painful; her eyes still concern me... She is only 4'4" and will not be much bigger... and for all the wonderful, amazing, miraculous achievements...I still have "mama worry".
Madi is one of the first 100 kids EVER to have the Vertical Expansion Titanium Ribs implanted in her body. This procedure, undoubtedly, saved her life. Now, via facebook and twitter and social media onslaught, so many "newbies" to the VEPTR program reach out and have questions for us. They are nervous, scared...wondering. I distinctly remember that fear and those feelings, and I WISH I could tell them "it will all be ok"> But, I cannot. I do know that, for us, it was the ONLY way... and that everything we handle from here on out is just another step on her journey.
Middle school was "painful". High school looms next year. Madi is bouyant, joyful, a happy sprite of a pretty faced girl who loves music, voice, acting, art, dance and baby sitting. Like all other almost-14-year-old-girls she just wants to be accepted, appreciated and included. That is not always the story.
I realize, partly from working daily with teens, that her hurt feelings don't just stem from the things that set her apart from her peers-- there are plenty of bullied and ignored pre-teens and teens in this world who appear perfectly "normal"... but I worry about her more for her differences, lest they mask her exceptional ABILITIES.
But now, it is Summer. She just had a grand time in a performance of Bye Bye Birdie, was awarded THE highest honor in her Nana's name at dance recital, got an 89.7 overall grade point avg for 8th grade, and scored high in both vocal and percussion NYSSMA solos.
She is enjoying the pool in our back yard, babysitting, and her true friends... and has made many exciting plans for this SURGERY FREE Summer... so living IS easy.
Now, if I could just stop WORRYING!:)

31 Comments:

At 5:01 PM, Anonymous Kier said...

This post makes me so happy. I'm glad I got to watch Madi May grow up :) She's such a joy and like a little sister. <3

 
At 5:06 PM, Anonymous Anonymous said...

order ambien ambien withdrawal night sweats - treatment of ambien overdose

 
At 3:52 AM, Anonymous Anonymous said...

xanax online best way order xanax online - xanax you buy online real

 
At 6:51 AM, Anonymous Anonymous said...

buy diazepam diazepam for dogs fireworks - diazepam kidney function

 
At 7:46 AM, Anonymous Anonymous said...

alprazolam without prescription blue football 1mg xanax - where to buy generic xanax online

 
At 9:52 AM, Anonymous Anonymous said...

valium generic many valium 5mg get high - valium for sale in uk

 
At 10:53 AM, Anonymous Anonymous said...

diazepam no prescription diazepam to buy online - buy diazepam online no prescription

 
At 4:43 PM, Anonymous Anonymous said...

lorazepam without prescription ativan dosage per weight - buy cheap ativan no prescription

 
At 7:40 PM, Anonymous Anonymous said...

buy xanax online xanax .5 mg to get high - long will 1mg xanax stay urine

 
At 5:34 AM, Anonymous Anonymous said...

xanax online pharmacy one time use xanax drug test - xanax bars 2mg

 
At 10:30 AM, Anonymous Anonymous said...

diazepam 10 mg buy diazepam online usa only - diazepam dosage dogs anxiety

 
At 3:40 AM, Anonymous Anonymous said...

cheap generic ativan ativan kick in time - ativan visual side effects

 
At 2:45 PM, Anonymous Anonymous said...

lorazepam no prescription ativan side effects overdose - ativan dosage in children

 
At 8:20 AM, Anonymous Anonymous said...

lethal dose of diazepam diazepam 5mg/ml solution - efectos del valium diazepam

 
At 12:39 PM, Anonymous Anonymous said...

order ativan online ativan side effects iv - ativan sublingual overdose

 
At 1:35 AM, Anonymous Anonymous said...

alprazolam 0.5mg over counter drug test xanax - xanax used get high

 
At 3:19 PM, Anonymous Anonymous said...

order soma online carisoprodol 350 mg qualitest - erowid tramadol carisoprodol

 
At 1:11 PM, Anonymous Anonymous said...

soma carisoprodol soma medication picture - buy soma from mexico

 
At 3:50 PM, Anonymous Anonymous said...

buy valium online antidepressant drugs valium - valium how long does it last

 
At 10:45 AM, Anonymous Anonymous said...

order valium online no prescription pills similar to valium - valium pill chart

 
At 11:18 AM, Anonymous Anonymous said...

ambien pill generic ambien 10mg cost - sleep well herbal ambien

 
At 8:43 AM, Anonymous Anonymous said...

buy valium online types generic valium - buy valium online china

 
At 1:40 PM, Anonymous Anonymous said...

soma online soma medication effects - soma drug manufacturer

 
At 9:52 PM, Anonymous Anonymous said...

buy valium online valium 10mg equivalent xanax - buy valium online from canada

 
At 5:40 AM, Anonymous Anonymous said...

Nature Medicine Journal Author Instructions buy generic prednisone - cheap prednisone http://www.prednisone4sale.com/#cheap-prednisone

 
At 12:59 PM, Anonymous Anonymous said...

Drug Given Every 10 Minutes diflucan without prescription - order diflucan http://www.diflucansaleonline.net/#order-diflucan , [url=http://www.diflucansaleonline.net/#diflucan-without-rx ]diflucan without rx [/url]

 
At 3:25 PM, Anonymous Anonymous said...

6, buy cheap klonopin - clonazepam without rx http://www.klonopinsaleonline.com/#klonopin-for-sale, [url=http://www.klonopinsaleonline.com/#klonopin-for-sale]buy klonopin[/url]

 
At 2:17 AM, Anonymous Anonymous said...

Your current articlе hаѕ established benefiсiаl to me.
It’ѕ rеally usеful аnd you are certainly гeally well-infοгmеd in thiѕ region.
You get openеd up our face tо νarious thoughts abοut this kіnd
of subjeсt matteг with intriquing, notable and ѕolid
wrіtten сontent.
my website :: ativan

 
At 6:36 PM, Blogger Unknown said...

This comment has been removed by the author.

 
At 6:36 PM, Blogger Unknown said...

This comment has been removed by the author.

 
At 6:36 PM, Blogger Unknown said...

This comment has been removed by the author.

 

Post a Comment

<< Home