Jan 31, 2011

Wishing for Joey


Rebecca of Just Another Blog emailed me a couple of weeks ago and asked me if I would be willing to help her share some news. 
Rebecca's son Joey was born with Neurofibromatosis along with an array of other associated health problems.  Neurofibromatosis is a disorder that causes tumors to grow on various types of nerves and anywhere on or in the body. Rebecca often shares honest emotions and frustrations of dealing with the many uncertainties of Joey's health on her blog. 
Joey is three years old now and much of his life has been challenging as a result of his health, but his beautifully positive spirit endures. 
Rebecca's fierce determination to help Joey in every way possible has never been dampened by the unknowns. 
Today it is my pleasure to have Rebecca talk a little about Joey. She is going to share with you some exciting news for a little guy that has endured so much. 

Please welcome Rebecca. 


In her own words...

***
By Rebecca of Just Another Blog:

My family and I belong to a club.  It's a club that can be quite costly of your time, of your patience, of your ability to remain upbeat and cheerful.  The club is not something you pay monetary dues to be a part of and is a club that nobody wants to be a part of.  Once you're in this club, you're basically in it for life.  It's the club of There Is Something Wrong With My Child.

As some of you might know, my son Joey was born with a few problems.  You can read a little about it here and here.  Unless someone comes up with some miraculous cure we could still have a long road ahead of us.  I say 'could' because that's the thing with all that ails Joey.  We could go a long stretch of time without a single problem or we could wake up tomorrow with a dozen new problems.  How's that for certainty?

What is certain is that he has a million dollar smile and his attitude is the very best ever.  Joey is always so happy and outgoing and just in love with the life he has.  He does not let anything slow him down.  He just keeps on going and laughing about it along the way.  Joey is truly amazing. That's the first thing that the therapists from First Steps said when they came out to meet him when he was just 13 months old.  That's what the teachers and staff at his preschool tell me almost daily. They tell me this like I don't already know.  Trust me.  I know it all too well.  He's my bright and shining star.  He's my little man with a big heart.  He tells a joke that makes you laugh just as hard as if you just heard the funniest thing ever, even though, you didn't understand a single word he just said. It's all in the delivery baby.  And he delivers!

Everything happens for a reason.  I know this.  Sometimes we are smacked in the head with things that need attention RIGHT THIS VERY SECOND.  And sometimes, things just nudge themselves into your life a tiny little smidgen at a time.  They whisper a very distant and faint 'look at me' while you are busy dealing with the demons in your life.  It's one of those moments when you are just too busy to pay any attention to the small little voice and by the time you're done slaying that dragon you forgot that there was ever a whisper.

But one whisper turns into two which turns into four and then eight and after that sixteen and before you know it you actually remember that there was a whisper that started way back when.  But gee-whiz what was it and why did it seem important.  Everyone is happy.  Everyone is getting by just fine despite the troubles that bust down your protective walls.  We always pick up the pieces and move on and focus on what is important.  Each other.  Together we are strong and together we are blissfully happy.

But that whisper remained persistent.  She whispered when I read various blogs, she whispered when I signed up for a Covergirl thing on Facebook, she whispered in requests for donations that we got in the mail, she whispered when I watched television, she just kept on whispering until one evening after being told about yet another surgery.  Another surgery after we were told almost two years ago that this should be the last we need to do for his leg.  Another surgery for a newly diagnosed problem.  Another day of needle pokes.  Another day of possibly spending the night in the hospital. Another day of nurses.  Another day of doctors.  Another day of waking up every 2 hours just to be sure.  Another day of taking the routine and pitching it out the window.  Another recovery that involves strong narcotics.  Another bump in the road.  Another round of picking up the pieces. 

I couldn't figure out if I was pissed or depressed.  Sometimes I just can't tell the difference.  I had to do something.  I had to get my mind off everything.  I had to escape so I got online where minutes waste away into hours in the blink of an eye.  And I saw my whisper again.  I read it and I heard it. It was a small ad on the side of one of the pages I was reading and I clicked the link and said, "I'm going to do this."  I clicked on 'refer'.  I filled out the boxes.  In the comments I just put "Over the course of almost four years my son, Joey, has been diagnosed with the following; Neurofibromatosis Type 1, Psuedoarthrosis of the tibia, Plexiform growing on his head/neck, lower extremity valgus.  At one point we were worried about an optic glioma but an MRI found a perfect optic nerve but did find sphenoid wing dysplasia."  And then I clicked send.

I received a phone call a few days later wanting to know the telephone of Joey's doctor.  I chuckled and asked which doctor.  I told her a little about all of them and we went with the orthopedic.  I think I gave her the pediatrician's number too.  A couple of days after that someone called me and told me that Joey qualified to be granted a Wish.

And now?  We are waiting for the Wish Team to call us to schedule an appointment to talk with Joey.  They will play with him.  They will ask him questions. 
 They will show him books and photos of what is possible and then Joey will Make-A-Wish.

***


p.s. Rebecca promises to keep us updated on her blog as details develop. 


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14 comments:

Rebecca said...

Thanks for helping me share the news!

Take Care~

Caroline said...

It was my pleasure, Rebecca. I am so happy for him and can't wait to hear what he wishes for!

Tina Michelle said...

I am so happy for you and for Joey. He so deserves a wish.

Tina Michelle said...

I am so happy for you and for Joey. He so deserves a wish.

Michelle Pixie said...

I am SO excited for you all! :)

amber said...

Oh Rebecca, that's fantastic! You guys definitely deserve some happiness - I hope Joey gets a fantastic wish!

Anonymous said...

What a wonderful, touching story about a strong and brave boy. Thanks for sharing and I am so happy to hear of your son's wish!

Susan Anderson said...

Can't wait to find out what Joey's wish will be! And I am so grateful to organizations like the Make-A-Wish Foundation (and the people who donate to it) for making the lives of ailing kids and their families brighter every day.

=)

Rebecca said...

Thanks to all of you for your kind comments. Don't think for one second that your powerful prayers and kind words don't make a difference because they do. A huge difference.

Natalie at Mommy on Fire said...

What joy! A wish! I love Make a Wish for this very reason.

Caroline! How are you? We have lost touch and I'm sorry. I saw you on Jenny's (Southern Institute) blogroll and hopped over to say hello.

Hope you are well!

Unknown said...

Aw, the little trooper sure deserves a big, shiny wish. :)

Lynn said...

How awesome! I can't wait to keep updated on what his wish will be. Good for you for putting yourself out there and making this happen!

Claudya Martinez said...

I'm so happy, I'm crying tears of joy. Thank you so much for sharing this with us. I'm so excited for Joey I can hardly stand it.

Liz Mays said...

This is so touching and absolutely wonderful!!! I'm thrilled for you!