Alex’s Journey to Camp Cheerful UPDATE July 9

Alex’s Journey to Camp Cheerful UPDATE…

I want to thank all of the wonderfully generous friends who supported us in our fundraising to send Alex to this special camp.  Unfortunately, life had other plans for the time being.  Due to fairly dramatic health issues (more on that later), I am unable to accompany Alex to Ohio, so we are postponing his experience at Camp Cheerful until next year. I did return all funds raised, to their respective contributors, due to the change in plans.  Alex is disappointed, but he is very vocal about wanting me to get better.  We are working at getting new therapists on board for him, locally and hopefully camp will be in reach next summer and I will be 110% again!  Thanks again to everyone who continually roots for Alex.  Alex is well aware of the love everyone has shown us along our long journey.

xo

B

Alex is my amazingly brilliant, funny, sweet kid who has Asperger Syndrome. Asperger’s is a neurological disorder, it is a developmental disability.

Alex is almost 7 years old. There is a summer camp (Camp Cheerful) in Ohio specially
designed for kids with Asperger’s. It includes things like Occupational
Therapy, which would be a huge help to Alex. The camp would help give
Alex the tools he needs to face his daily challenges, which are more
than most adults could tackle every day.

Here’s a wonderful description of Asperger’s Syndrome that recently aired on the PBS show “Arthur” (the meat of it is only until around 2:45… so if you aren’t into Arthur please don’t feel you need to watch all 7+ minutes!)

For a more straight facts, less dramatized (less animated) description please visit AANE’s AS facts. For our personal experiences please read the Asperger’s entries on my blog

Love and peace,
Bek, Jeff, and Alex

Now I Lay Me Down To Sleep…

3 days old, first time I was allowed to hold him....

(I chose these image from the NICU… They don’t quite feel like a fit for the post but they kept hollering at me..)

I can only imagine how it feels to lose a baby.  Even during our ten days in the NICU, the deaths of the tiny patients were not spoken of, for us outside that baby’s family, it was marked by the absense of an isolet or incubator that was crowded with doctors and loved ones only hours before.  We knew, all the parents knew, that we were fortunate as it wasn’t our baby. But it could be. In the NICU the emotional stew that you live in is a lifetime of emotion and stress in a matter of weeks or months…It’s a lifetime compacted into a tiny room and a tiny plastic box with portholes, wires, tubes, and distressing alarms.

A little over 24 hours old...Finally got to see his face in person (the nurses gave me a polariod to have in my room a few floors away while I got the rest of my IVs)

But we were lucky.  I don’t think I will ever forget how lucky we were that Alex was ok. My mother was annoyed when I mentioned other babies in the NICU, who were there before Alex and stayed long after he came home, or who “disappeared” overnight-focus on happiness, she would tell me.  I truly believe that the stark contrast of what we had, and what could have been- what was a reality for many people, makes me appreciate Alex’s survival much more.

Since Alex’s birth and many changes in the life of our family, I have, in my journey, seen friends and family lose children at all stages of development, at all ages.

I can only imagine the loss of a child. I am grateful that I can only imagine it.  Perhaps I am not imagining it accurately, but I know my love for my son, and how the possibility of losing him has felt, and the helpless, drowning sensation that his distress, prematurity,and neuro issues, and the two miscarriages before my pregnancy with him, have impacted me on so many levels…  I can only extrapolate and the place where I wind up is stifling, hot and humid, very dimly lit…I imagine it to be like a vat of a viscous substance- like molasses- drowning, muscles aching as they try to move, there are no words, but by some cruelty you can still breathe, even if it’s hard and physically hurts….I can only imagine that the reality is much more terrible that what I can imagine. My heart goes out to anyone who has experienced the loss of a child, their baby, at any age or stage.

My cousins Aimee and Julie, just introduced me to an amazing organization that helps parents who are facing the death of their baby remember their child.  The site for Now I Lay Me Down To Sleep has much more detail about the program.  Here’s a paste from their about me:

“This is the place where the Now I Lay Me Down to Sleep Foundation gently provides a helping hand and a healing heart. For families overcome by grief and pain, the idea of photographing their baby may not immediately occur to them. Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of this organization. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives.”

I checked out the site and I really wanted to help, to honor the families that I know that have lost a baby, which is why I’m trying to help spread the word…

They are currently running a fundraiser to support the NILMDTS mission. Our cousin Jaime  is participating in a national model competition that benefits NILMDTS.   Please consider visiting the image gallery and voting for our lovely Miss Jaime while supporting a wonderful cause.

You can see Jaime’s picture and vote for her by visiting:

National Charity Model Search benefitting NILMDTS

Every vote cost $1.00 and every dollar goes to a charity group close to our hearts, Now I Lay Me Down to Sleep (www.nilmdts.org). Jaime also has the opportunity to have a photo shoot with a renowned photographer if she is in the top vote count by March 15th, 2009. Please be generous and vote by then if you can! You can continue to vote until April 2nd, 2009 to give Jaime the chance to be the National winner!!

Thanks a bunch….

Hugs all around…

xo

Bek