my role

Everybody has a skill a talent.. something that is special and unique about them. A way for them to give back..Everybody has a story to tell and I am able to tell my publicly. .. But at the center of it.. My truest calling.. now.

I am a cancer mom.. but specifically one to a child that was on hospice and died.. one that is dead. And that’s where I am most useful. That’s where I can help.. it is my role and my place in this world.

just1
Sissy’s place

 

At first it was parents with teenagers that were really screwing off.. I could talk to them from the child’s point of view.. I could share my story and my success in overcoming it. Then it became  infertility and adoption. I used to be good at talking to people and helping them through those darker times.. especially transition times.. during a miscarriage or starting a more invasive path to try to get pregnant.

Now a new role.. that I know is my place.. that I know is what I am good at. I never had time to make “cancer mom” friends while Jennifer was sick. But now I have quite a few. . It happens during hospice or right after their child passes away. Somehow I am just good at that time.

Tony preparing her morphine. Jennifer is thanking him the only way she could..
Tony preparing her morphine. Jennifer is thanking him the only way she could..

I don’t think I am helpful.. I know I am not as comfortable while a child is in the middle of the battle for their lives.. But once the battle is winding down.. once the battle is mainly within the parents shattering hearts.. I am good. I am helpful and I am confident in that.

But its hard.

I hear them.. knowing they want the answers for what to do.. or even whats happening to their child. Is it seizures? Is it muscle spasms? What I really hear though is the screaming underneath all those questions and attempts to figure it all out.. I hear the agony in wanting to be able to keep their child out of pain.. and the fear that in all likelihood.. they won’t be able to.

I think for most parents.. at least the moms that I talk to.. The underlying question at some point stops being how can I save them and simply becomes how can I help them?

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Such a twisted question. So wrong. And so cruel to do a parent.

But this is childhood cancer. This is what isn’t being funded. 

I drove by a planning meeting for Relay for Life today… I saw the signs all over. And I wanted to go in to be sure they did it in honor of adults only… since thats who the money goes towards.. Less than one cent of every dollar they raise will go towards pediatrics.. The governments cancer budget.. less than 4% of that money goes to save these kids.

..knowledge is like glitter it sticks with you.. Spread the glitter.
..knowledge is like glitter it sticks with you.. Spread the glitter.

Our kids.

My daughter..

A beautiful and incredibly generous young lady Lauren Hill #22 just beat cancer forever. It’s a big deal, SHE is a big deal.. its been on ESPN.. LaBron James has tweeted about her, actually to her.. I read all of that and am grateful and frankly happy for her parents that so many are honoring their daughter.. but then I hear my phone buzz or I check my Facebook messages and I remember.. so many other children.. and parents are in the depths of it right now.

…and I remember..

Kids are dying.. day after day after day.. The statistics just keep piling up.. What does that number need to be to matter enough?

For me its one. Its her. My Jennifer Lynn.

I just wish it wasn’t.

I wish I fought for her before I knew she needed me to. We have a posting we share on FB that for me sums it all up. Donate like your child has cancer. Thats it. That says it all for me right there. Donate time. Donate money. Donate resources. Donate your voice,  like it was your child.

Donate Like Your Child Has Cancer

Because Oct 25th it wasn’t mine..

And today is some other mothers last day to say it wasn’t hers.. And all I can do as that reality washes over me is hope that I would never be a real help to them.. that that mom won’t be the one making my phone buzz one day..

its you

to me you will always matter

you will always be more than just another one

its you.

and I am sorry.

forever.

just2

…until there is a cure..

 

12 Responses to “my role”

  1. Jennifer will continue to matter and inspire us who do not have a child in the fight. Thank you for continuing to share your girl with us, and helping inspire change. It is happening….slower than we ever want….but it is happening, and Unravel is at the forefront.

  2. Beautifully said Libby. You are helping so many families. You have such an incredible way of sharing your heart in these posts. Love you all. #love4JLK #until there is a cure #unravel pediatric cancer. JLK never forgotten.

  3. Libby, You are amazing, a natural healer for those in need. Thank you for your gift of sharing Jennifer and her memory with us.

  4. So many things in this most recent blog struck me…. the pictures…. everything you said…. the glitter is sticking on me…. I need to do MORE! I WILL DO MORE!!!!

  5. Change will come. You are making a change. You are doing amazing. Jennifer will never never be forgotten. She will always be remembered. For them because of her. Love to you all. #LOVE4JLK ♡

  6. Those photos are heartbreaking. The one of Jennifer and Tony really stabbed me in the gut. No parent should have to go through the hell that you two have been through, but sadly, they do…all the time. It is disgusting that we, as a country, don’t do more for pediatric cancer research. Thank you for reminding us all of that. If only people wouldn’t close their eyes and ignore it. I know it’s not a pretty picture to look at or a pleasant story to hear, but everyone SHOULD donate like it were their own child. If I had the money, I know I would. Right now, I am pledging to donate time. Spreading the word on Facebook and offline as well. Everyone should do the same. Time doesn’t cost a dime, but could save lives. God bless you Libby, and your family. Love4JLK…forever.

  7. Your strength and determination drive me. Your blog, from the very beginning of this sad, heart-wrenching, UNFAIR, journey has helped me deal with my own loss. You helped me understand that its ok to be pissed off, to cry, and to not allow others’ judgement of my grief change how I grieve. Now you have taken on a new role for me, I look to you for strength to advocate and raise money so that I can help in the fight. You share your life and your experience and I know the knot in your throat is there, that chocking knot that won’t let you breath when you try to explain why this fight is important, why it has to happen, and who’s behalf you’re fighting for. But you go on, and your voice is loud, and your presence is mighty… Thank you Libby.

  8. Libby, you are stunningly beautiful, inside and out. Thank for leading the way in this fight. Jennifer’s glitter army is right here by your side!

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