Tuesday, September 4, 2012

The first day of school

I planned on writing a post that reflected on our experience when Ty had his first major surgery in order to continue recapping his journey during childhood cancer awareness month, but I think I need to save that one for tomorrow and share something else that is very timely. 

I recently became friends with another mom who is walking in the same shoes.  She posted something on Facebook this morning that I wholeheartedly relate to, and I am so happy she did because it opened my eyes to why I have been feeling so depressed these past few days.  Her words allowed me to come to terms with my own feelings around the fact that school starts tomorrow and that makes me really sad. I want to post pictures of Ty on his first day of Kindergarten wearing a new backpack, a handsome outfit, standing in front of a yellow school bus.  This should be such an exciting time for us, and sad too, as we see our baby boy growing up and going off to his first day of school.  Never did we imagine that we would instead be living a life stuck indoors on the couch in front of the TV, our time otherwise consumed with doctor's appointments and hospital stays.  Ty will be getting tutored at home instead of learning in a colorful, bustling classroom. 

When I read the post (repasted below) I realized how much it hurts to see all of the recent pictures posted to facebook.  I am so happy for all of the kids, and the photos truly do make me smile, but they simultaneously make the wound on my heart bleed just a little bit more knowing how different things are for Ty.  I share very mixed feelings of overwhelming gratitude and bitter sadness. 

When I was pregnant with Michael I had an online community support group of moms who were all pregnant with babies due in December 2005. I became friendly with many of them and they have been an amazing support through pregnancy and it's been wonderful keeping in touch with all of them and watching our December '05 babies grow up. I truly enjoy every picture and story!

Typically I can push to the back of my head that Michael is so different from them. He's not only sick but he's delayed in SO many ways. Today, and over the past week or so, I've watched picture after picture go up of all of these babies starting Kindergarten or 1st Grade, depending on the cut-off date for that school district. I knew this time of year would bother me but I didn't realize just how much it would bother me. I'm so happy for our friends, the kiddies and their families but my heart is broken just a little more because of all of Michael is missing out on. He longs to go to school with Katie and the kids he knew in nursery school.

I know we're lucky. I really do. Michael is here and his disease is stable but with all of the delays and problems he's been having the team and I don't think that a classroom is the best place for him right now. He can't handle it. Yet, we're lucky. So very lucky because this year alone there are over 2,500 families whose children can't go to school because they are no longer here because of cancer.

PLEASE help CONQUER KIDS' CANCER so we don't have more of these years for Mikey and for all of these kids who are in the hospital or getting chemo on the first day of school. PLEASE help CONQUER KIDS' CANCER so we don't have more than 2,500 children less in the world to start school each year.

I share all of these sentiments.  Our stories are all too familiar.  Mikey even goes to the same doctor at Memorial Sloan Kettering. 

I wish I didn't become aware of the horrors of childhood cancer through experience.  I wish I had instead become inspired by another brave little fighter that was not my own.  My child is the first pediatric cancer patient I ever met, and now I am aware of hundreds of them.  I follow their websites and I keep track of their facebook pages.  I recently checked in on a child who was enjoying a happy, healthy and cancer-free life just two weeks prior only to learn that she has since suffered a relapse and was in a coma.  A painful reminder that this could be Ty in two weeks. 

Today is day four of Childhood Cancer Awareness Month.  I hope that by sharing Ty's story this way I can help raise awareness among normal, healthy families  so that some day my own family can be normal and healthy again.  I should note that I use the word "normal" very loosely.  Can any family really be defined as "normal?" :)

Ty on his first day of preschool last year.  He was so excited. 

1 comment:

  1. I am thinking of you and your family and all the families suffering from this horrible disease. I am sorry that you are not able to experience the joys of Ty's first day of Kindergarten. It just plain sucks. I pray for Ty every day. He is loved by so many. I hope you can take some small comfort in knowing that.

    Ann from Buffalo