contagious

Its not contagious. Thats one of the early things you tell a child about cancer. As their friend/sister is battling.. You can’t catch it from them.

Seems like a good thing.. But maybe not…

In New York we went to the American Museum of Natural History. One exhibit I wanted to see was the one on disease. I didn’t expect it to impact me so emotionally.. But it did. Silent tears fell .. just a few.. I remember I had my arms wrapped around me.. tighter and tighter… I guess thats what I do. I instinctively hold myself.. I don’t think I ever did that before..

is it you? do you make me do that now?

I miss the feel of her..
I miss the feel of her..

I had given Bridgette to Tony so I could really read each sign. .. and tears started to fill my eyes. So many thoughts .. anger and sadness piling up. And surprising me. I wasn’t expecting to have that reaction and I don’t do well with being out of sorts unwillingly.

 I held it together until I walked over to Tony and Bridgette. Then I surprised him with my need for him .. comfort. warmth. safety. He knows now when its just Jennifer stuff.. He just opens up and absorbs me. .. my grief and my physical weight. I cried in a corner with Bridgette in one arm..the other pulling at his back..

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This is my life now. The hope .. the drive and desire to put an end to the painful and deadly disease that stole my daughter.. and 7 more everyday since then. The number one disease killer of our nations children. I read this red sign first at the entry to the hall.. I was so curious what it would say about cancer..

But then I realized they were only going to highlight contagious diseases.. Ones that we are scared of catching.. Logically I get it. They can spread.. And frankly its easier to work towards controlling and ultimately stopping them .. It seems almost instinctual to be afraid of something that can be transmitted from one person to another..

.. Cancer though.. For some reason it seems ingrained in us that we can protect ourselves from it. That we have control over our fate. Not smoking.. eating organic.. etc.. And there is some level truth to that for adults.. Some..

Childhood cancer though there is none. There is literally nothing we can do to protect our kids from it. Maybe thats why its hard to talk about .. because that makes it so much scarier. Its really just shit luck. .. The worst kind of lottery for the 36 kids diagnosed daily..

THIS is what should scare us.

Cancer parents we know that. We know we can’t do anything to protect our kids. We know the chance of recurrence.. the limited options when that happens. Cancer steals that safety from us..

But the thing is it steals it from you too.. You just don’t know it.

and it should scare the hell out of you.

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Remember HIV/AIDS? How devastating and scary it was. The death sentence. Still no cure or vaccine for it. But look at what has happened with AIDS. .. A chronic illness now. Why? What made that change possible.. and quickly.. so quickly.. In my lifetime its totally changed. .. How?..

1.awareness aka fear.

2.money.

3.research.

Really I think its that complicatedly simple.

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 I looked at this picture and thought how archaic that treatment looked. How sad for those kids locked inside an iron lung. I longed for that kind of change. For my kids to grow up and look at pictures of the treatment their sissy endured.. just as palliative care… I want them to see those pictures with the same eyes I saw these.. unable to imagine that as a medical treatment.

If you read the words I shared from Lucy about her daughter Elayna.. (if you didn’t you need to. Seriously right now you need to) I want my children and my grandkids to not even be able to imagine the need to scrub toxic chemicals off their children skin. ..

I want change. And I want it in my lifetime. The question presented to me every single day is how much do I want it? How much am I willing to do?

Its easy for me though.. Because my daughter had her number pulled in the cancer lottery. ..

 My question to you is how much do you want it? How much are you willing to do?

We have so many options.. and are always open to more ideas if you have them..

My number one goal this year is to get more businesses involved and do more public speaking.. so if you have a group that you are connected with that has speakers think of me. Or if your company has a philanthropic component advocate for Unravel. .. Friends with a business owner.. perhaps we can find a way to work together. You never know if you don’t ask..so now I am asking..

Help.

  • Join team glitter.  ANY race you run can be part of team glitter.  Just pick your race and set up a fundraising page. HERE
  • Local? Run in our 5k (its for the whole family and I am so excited!!!) Sign up for our Golf Tournament
  • Get the kids involved.  Check out our kidvocate hall of fame for ideas: I will always wish I hadn’t put off teaching Jennifer to be philanthropic until she is older.. I am amazed at what kids are coming up with. Check it out
  • Volunteer with us. We have so many needs. And now an easy form to fill out so we know how to find you.. No geographical limits.
  • Interested in bringing Mamas Night Out near you. Contact Krista@unravelpediatriccancer.org and she can give you the information. But you get so much support throughout anybody could plan one.
  • Support Unravel while shopping or list your own direct sales business!! Stella and Dot, Jamberry.. etc.. HERE Or choose Unravel when you sign up for Amazon Smile.
  • Help spread the facts, these are printable statistics.
  • And we have LOTS of other ideas here too:  (from liking us on Facebook to donating your birthday)

i am sorry jennifer

every single day

i am sorry i lost you.

but i am more than that.

i am not JUST sorry

i am active.

because of you.

and i am sorry i waited..

until it was

you.

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..until there is a cure..

 

6 Responses to “contagious”

  1. I so hear you Momma…I am having a hard time with the “why my kid” these days…especially as my son comes home from college, my other daughter graduates from college, and as their lives move on, this Mom is still stuck in the “why” . I wonder what she would be doing now, who she would have become. It can be overwhelming at times. More to your point though, … it is so critical to make people AWARE that kids are dying every day, this is not just a little blip on the radar of unfortunate events, these are our children. Sorry to ramble, just having a difficult day. It is comforting if anything to know your story, your feelings, and your sadness as I am not alone. You are so very helpful to so many Libby. Thank you, I am inspired to do something, anything today to make a difference in honor of Jennifer and Ann. Peace my friend.

  2. Soon there will be a plaque about how cancer was claiming so many, but many people came together and beat it. Keep your head up.

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