Friday, June 05, 2009

Heart Connect..

For such a rare disease, I am amazed at the connections I have made with other families going through what I am going through. The internet is an amazing thing.

A few days ago, I got to meet Bennett (or Benney as Brandon likes to call him...hope you don't mind Ken...and he keeps singing BaBaBaBennie and the Jets) and his parent's Ken and Jen. The IS family is a close knit community. I stumbled across his blog page (Blogzilly) from a link on Danielle's blog page (Dear Trevor). I was immediately drawn to his blog. They are new to the seizure world. Their son was diagnosed with Infantile Spasms about 3 months ago.

I felt connected to this family. Their pain so new and so raw...brought me back three years ago when Sophie was first diagnosed. My heart ached for them. I wanted to take away their pain. Ken is so incredibly open and honest with his feelings. He has the ability to pour his heart out and describe them so well with words (something I wish I could do). He tells it like it sugar coating.

Bennett is the most adorable little boy. He was napping when we went to visit. Sleeping peacefully in the metal hospital crib with his head covered with leads and all wrapped up in gauze. After awhile, he woke up with a smile. Such a precious smile...melted my heart. Makes me long to meet my little boy and hope that he is half as cute as Bennett.

There is just something about meeting another IS family. Can't describe it. I am not the touchy, feely, huggy kind of person when it comes to people outside my immediate family but I wanted to wrap my arms around them and tell them that is was going to be okay. Okay in our world can take on so many different meanings but I just feel deep down in my heart that Bennett is going to beat the odds. I hold on to that hope for this family because I know how easy it is to lose it.

Bennett is here for the standard testing...24 hour video EEG, PET scan and the much awaited appointment with Dr. Chugani to see if he is a surgical candidate. I am sure they are on the edge of their seats, trying to stay calm, waiting to see what the future holds for their son. So please keep them in your thoughts and prayers.


Holli said...

How often is it that people keeping in touch via the web just happen to be at the same place at the same time? I think it's awesome you all got to meet. Makes me wish I were there too meeting all of you!

I'm anxiously awaiting "the word" from Ken. I doubt he will post it anytime soon with the visit and the drive home and all. Praying for good news!

baby trevor's mommy said...

I remember when I met Jen Smith & Mike B at the FDA hearing. Our connection was SO powerful...that I have chills talking about it. And as cheesy as this many ways I am closer to my IS family than some of my own.

I am SO happy (and a smidge jealous) that you guys were all able to connect!



Liz, Maddie's mama said...

I feel the same way (close to IS families I know via the web) and we have only been at this a few months. Through your post, you have just given me that same hope that you wanted to pass on to Ken and family.

Some days I can feel that acceptance and calm in the posts on the blogs of other IS families much further down this road than we are, but sometimes the continuing struggles being discussed scare me. Knowing that while sitting in the hospital watching your child recover from brain surgery you feel like you can tell "newbies" that it will be okay is very comforting.


blogzilly said...

It was an experience that I will nevewr be able to put into words, and its funny, all the opportunities to in person fail. You just sort of know, and feel it and recognize it and don't acknowledge it.

But it's there.

You guys were so...

...trying to thing of the word I need, hold on.

You guys were so...genuine. So a pair of sneakers I have had for years. That's gotta be weird to hear from a stranger, but I swear its a good thing.

Anyway, our news was really no news. I posted about it, but not a lot of detail. Not an absolute candidate with 100% certainty, but not irrefutably no either. They found stuff we didn't know was there, that was major bummage. But there is still hope. Always hope.

Wash away my troubles, wash away my pain...
I can tell my sister by the flowers in her eyes
On the road to Shambala
I can tell my brother by the flowers in his eyes
On the road to Shambala

Bronx Cataldo's said...

Its heart breaking to find out that another child must endure the Infantile Spasms seizures. We are still seeing them but it usually means that Finnian is comming down with something. We are going to try Banzel to see if it will work on the other seizures he has.
Soooo happy the Sophie is not having seizures since her surgery.

Colby said...

I am so happy y'all got to meet....My friends with special needs children? Even though I haven't known them NEARLY as long as most of my "normal" friends, I STILL feel the stronger connection with my special parents....These connections y'all are making through these sites will carry you through for the next 25 years and beyond....Keep cherishing and protecting these relationships!!