Wednesday, January 18, 2012

Thank you...

Usually I try to be a little funny each week while addressing something that truly bothers me.  Although my husband says I am, in fact, not funny. 

This past week the world lost a very special little boy, so I'm not feeling so funny.  Tripp Roth was a precious 2 year old suffering from EB.  If you've never heard of EB, epidermolysis bullosa, please take a moment to do a bit of research (yes this week comes with reading assignments). 

It's basically a terribly painful skin disease, but that description really doesn't do justice to the amount of suffering these children go through.  In some instances it is lethal, with children not living beyond their first year of life.  Tripp was diagnosed at birth with junctional EB, the worst of the worst from what I can tell.  His doctors did not expect him to live beyond his first year, but he defied odds and lived to the tender age of 2 years and 8 months, just 4 months shy of his 3rd birthday.

I have been following his mother Courtney's blog since this summer.  I have had many people, including my husband, ask me why I read such depressing, sad things.  Here is my response:  it makes me appreciate every moment with my children.

At 7:00 a.m. I get up with both of my children as one of them always wakes the other up no matter how I try.

At 7:30 a.m. I feed Claire breakfast.  I try to entertain Zora as she glares at me angrily because she knows whatever I'm cooking, she's not getting.

From 8:00 a.m. until 11:00 a.m. I continue to try to entertain both Zora and Claire and teach them important things like their ABCs, 123s and how to remove tomato sauce from t-shirts. 

At 11:30 a.m. I prepare lunch for Claire while Zora again plots my demise knowing she won't be having what we're having.

By 12:30 p.m. Claire is down for a nap having been read two stories, tucked-in under 3 blankets, and kissed and snuggled by no fewer than 2 stuffed animals.

By 1:00 p.m. Zora is finally starting to nod off after her feeding frenzy.

At 3:00 p.m. the girls are back up and ready to re-destroy the house until Daddy gets home and we all eat dinner...again while Zora gnaws on her arm indignantly.

Claire bathes after dinner, we all play and then Claire retires at 7:30 p.m.  Zora stays up to party all night with us.

Did you catch all of that?  No where in that description of my day did I once worry if my child would make it beyond their next birthday because they are battling a deadly disease.  There is never a point during my day where I cannot hold my babies, tickle them, squeeze them and kiss their cheeks.  My life is gloriously uncomplicated. 

I read blogs like Courtney's to pay homage to a mom whose struggles are so beyond my own that I can hardly comprehend what her days must have been like.  My brain will not let me attempt to understand what she must be going through now.  The thought of losing a child rips at my soul like nothing I've ever felt.  But I read on because I feel that it's important to support fellow mom-types, hell, fellow human beings. 

This woman buried her child today.  She cared for him every day until his death.  People talk about living every day to its fullest and bucket lists.  This type of tragedy laughs in the face of such frivolous ideas.  How about just living each day?  This poor child knew nothing but pain and suffering and as much as his mother wanted her child with her here in this life, she knew that in death he would find peace.  Can you imagine?  Hoping this for your child?  I can't speak the words, let alone type them. 

So this week, I want you all to take a moment to appreciate the life of this child.  I want to thank Tripp and Courtney Roth for helping me appreciate my children just that much more; for helping me appreciate my simple life for a moment.  Television is not lethal.  Television is not even on my radar this week.  This week I am trying to hug my babies more than they can stand.  I am trying to kiss them until they push me away.  I am daily saying a silent thank you to a little boy who took his last breaths and made me appreciate each of mine.

Rest in glorious, painless peace Tripp. 

1 comment:

  1. I have been following Tripp's story since you brought it to my attention, and I was sad to see that he passed this weekend. I've found myself in the same frame of mind in recent days-- my children are not in pain like Tripp was, and no matter how the little quirks of a day might irritate or worry me, it is nothing compared to what some parents must attend to.