Follow-up No. 1

There are several of the "themes" discussed in the article that I posted about in my last blog entry that are worthy of follow-up as they relate specifically to my life and Jack's life.  This follow-up post relates to the theme titled "Conflicting Social Values" and the belief that your child's life is devalued.  My experiences deal more with people not acknowledging Jack as a human being despite the fact that he is right there in the room with them.  This happens quite often when dealing with medical professionals.  I've left more doctors in this City because of the way they have treated Jack.  I've also noticed a huge difference in the way Jack was treated as a baby versus how he is treated now that he is older.  In particular, by those who cared for him when he was a baby in the PICU and when he returned to the same PICU for his spinal fusion surgery seven years later.

Jack was an adorable baby.  He was the "star" of the PICU during the many months he lived there and not only did the doctors and nurses adore Jack, the parents of other kids in the PICU would stop by Jack's bed on a daily basis just to get a glimpse of his smile.

Seriously, could you resist this face?

And, I can assure you his smile was just as bright with an ET tube shoved down his throat!  Jack never lacked for acknowledgment or attention during his early days in the PICU.  The day Jack bailed from the PICU, many notes of love were left for him in a journal that I asked everyone to sign.  Here are just a few of the messages written by the doctors, nurses and RTs who cared for Jack:

"Jack, I look forward to coming to work so I can see you! Seeing you always keeps my life in the proper perspective because even after all you have been through ... you always have that perfect little smile ready to cheer me up! You are just the most wonderful baby boy ...."

"Jack, I will always remember coming into work and looking forward to seeing your absolutely adorable smiling face and your big bright eyes."

"Sweet, Sweet Jack, this old place is going to be a little less bright without your sunshine smile that you were so generous with.  It's has been a wonderful blessing to have known you and your mama.  You are definitely a little angel sent from God to remind us why we do what we do."

"Jack, you are a beautiful baby and I love to see you smile! I am so happy to see you go home, although I'll miss our kisses! You are so sweet and I couldn't forget you or your happy disposition.  Stay happy and smiling forever."


"Jack, what are we going to do without your smiling face? You are so precious and I will miss you terribly.  I'm sad for us, but happy for you."

and they go on and on .....

Then Jack grew up and his disease stole some of his "brightness" and tempered his smile.  He's still the same sweet Jack, but so many people don't see it -- won't see it -- because they can't look beyond the tubes and the paralyzed body to the little boy who lives in there.

When Jack returned to that same PICU, where many of the same people who wrote those notes still work, he didn't get quite the same reception.  The care he received was excellent, but it didn't go beyond that.  No more "hi sweet Jack, how are you doing?" These same people walked past his room and waved "hi" to me, but didn't come in the room to see Jack.  They too couldn't see past what his disease had done to his body ... and his smile.  It broke my heart.

Shortly after that PICU stay, I had a discussion with one of Jack's former doctors regarding this change in attitude towards Jack.  Here is what he shared:

"I totally believe you can see a difference in attitude of nurses caring for him now compared to when he was a baby, but frankly, with chronically ill children - communicative or not - as they get older they get less "cute".  Heck, it's why so many people go into pediatrics in the first place.  Sick adults are just not as much fun as sick children. And, whether it's inherent in our programming or not, the younger the child, the "cuter" they are.  So, perceptive people like you with children with chronic conditions perceive the difference in attitude. But, it does not mean that people care less -- it's just different."

Incidentally, this is what I love about this doctor  - he is as forthright with me as I am with him (and we've had some great discussions as a result).  He listens to what I have to say, but he still tells it like it is - always in a supportive way. He acknowledged what I already knew and I respect him for that.  But, it still bites and it makes me sad for Jack.

And mad too.

And it's why we stay away from hospitals and doctors and people in general.  It's why we keep Jack safely cocooned at home surrounded by people who can see the sweet little boy underneath his paralyzed shell. It's where Jack is treated like a human being who can see and hear and as someone who has feelings and an opinion.  We stay secluded at home because it's where people aren't afraid to talk to Jack even if he can't talk back.   It may not be the "right" thing to do, but it's what we do.