Here's what I want you to know...

I want you to know that Sam is alive.

I want you to know that we're "fine."

I want you to know that Sam sleeps peacefully, and comfortably for a few hours at a time, and then he stirs and makes simple, whispered requests for food, positioning changes, and trips to the bathroom that we struggle to understand.

I want you to know that if you had told me that he would go from eating sitting up in a chair unassisted, walking with help, and standing at the toilet to pee, to not even being able to hold his head up and peeing in a diaper in less than 24 hours I would have told you to go fuck yourself.

The hardest part is watching Sammy, my vibrant, active, smart, creative, compassionate, 8-year-old, be altered by this killer. 

The hardest part is not being able to honor his requests. "Can we get up and start our day?" "I need to go pee." "I just wish everything was normal." "I want to go home." This-lying on the couch all day, sleeping, taking sips of soup and tiny bites of McDonald's soft serve ice cream (McFlurry)-is our day, baby. It's okay to pee in the disposable pants (diaper), Sammy. I wish for that too, Little Guy. We are home, sweetheart.

The hardest part is knowing that this will not end with recovery. There will be no awakening beyond the half-open eyes we see now. There will be no physical therapy or occupational therapy or speech therapy or IEP or...

I also want you to know we are grateful for your help, and we are comforted to know that you are holding us all in your hearts. 

Please remember that there is still so much work to be done in the childhood cancer arena. While I am still mothering Sam I need you to continue that work for me. Raise awareness. Tell people childhood cancer is not rare (1 in 300 kids will be diagnosed. And if you think I'm being alarmist, Google, "childhood cancer blog," and start reading). Tell people childhood cancer research does not get enough funding from public or private sources. Tell people we need treatments specifically for kids that are effective for their cancers and less toxic. Refer them to Alex's Lemonade Stand Foundation for information and ways to help. Send them over to The Truth 365 for facts and an action plan. Tell them to check out St. Baldrick's.

Whatever you do, please check out an organization before you start donating, volunteering or referring other people to it. Check them out on Charity Navigator and figure out how much of the money they raise actually goes to childhood cancer research. 

Whatever you do, don't support the American Cancer Society as a means to supporting childhood cancer research. Please read their report and this article.

If we arm ourselves with anger, information, compassion, and vulnerability, I believe we can make a difference.



Remember Sam's song, Rocket Ship, by Chris Beland? Here's the video. 


Comments

Post a Comment

Popular posts from this blog

Let it Go

Image
We had no plans for Passover. No one wants to do anything. My mother has always hosted the Seder and led the planning, and this year, as her voice broke, she told me she didn't want to do it. I offered to do something, anything, even just a nod to tradition, in our home. No takers. So I let it go (go ahead and sing. I am one of 4 people on the planet that has not seen this movie. We no longer have a child of the age that enjoys animated features). Passover 2012-Pre-Diagnosis We used to be the Friday night service type. On a regular basis Abby, Sam and I would attend shul. Sam sat with his friends in the front row, and Abby and I sat with my friends, the parents of Sam's friends, right behind them-within shushing and blessing distance. Three times a year we hosted oneg Shabbat after services in honor of our children's birthdays (Oneg Shabbat means joy of Shabbat so we brought snacks and treats because food = joy, right?). We always had cake, and it had to be from costco. Whe...
Read more

Birthdays & Black Holes:

Image
Today our son Sam would have been 12.  When I originally sat down to write this blog I had plans to make it cheerful or at least upbeat�really.  After all, a birthday should be a celebration of life.  But the truth is�that�s really not where my heart is right now.   The struggle between how you�d like to think and feel�in contrast to the reality of how you think and feel having lost a child so young�is palpable.  Bereaved parents don�t want to be �Debbie Downers�; we don�t like feeling sad; but sometimes that�s just our own personal reality.  The �new normal� as they say. Don�t get me wrong.  There is a lot to be thankful for and, perhaps even more so than others, bereaved parents are indeed thankful for what we still have�our other children, our spouses, our family, our friends, a very supportive community, an opportunity to do good and make a difference�the list is quite long.   Yet, there remains a hole in our hearts�a hole in our lives�that...
Read more