I woke up this morning and the ache… the hole in my heart and my life was palpable. I have cried often I have cried hard today.
My boys and I painted rocks with nail polish to take to her. They seem to have a want and a need to go daily right now. And then they wanted to paint their nails.. to paint my nails.
Jonathan knows just what to do.. exactly the way I used to do it with his big sister. Its been well over a year since he has seen that happen. But he remembered.. I was happy and I was devastated.
That’s me. One giant walking contradiction. One giant ball of dueling emotions.
So often feeling depleted of any true emotion but feeling such tenderness for my surviving 3. I feel like I cannot wait to die.. to get to be with my Jennifer again but trying to absorb every minute I have with Jonathan, Nicholas and Charlotte. I feel so angry that this happened. I feel so sad that this happened. I feel weak and I feel powerful. I smile often while fighting unseen tears.
But right now looking at a blinking cursor I am simply sorrow. I miss my daughter so much. Its hurts now physically somehow. Like my heart is literally aching and literally broken and I can feel just where.
I never knew pain like this existed. I never knew people could withstand this kind of onslaught. Day after day.. And now I am learning it will be year after year.
A year . Damnit. A whole year. Since I held my daughter. How much would she have changed in these 365ish days that have passed. Nearing the end of first grade. She would be reading. No longer could Tony and I spell words we didn’t want the kids to know we were saying. Would she have wanted a whole new hairstyle? What would her favorite song be?
would you still call me Mama?
Those never to be answered questions are devastating. And such a cruel thing our minds do to us. Wander away.. imagine the what could have beens.. but never will be’s.
But this is our life now… always questioning who we all could have been.
This is a two fold posting.. because I had to walk away.. and grieve the way you always imagine you would. Uncontrollable. Grief.
Today was full of counter emotions too. Of hope and despair all rolled into one. It was the time I cried in public today.. The time I saw tears fill my Jonathan’s eyes as he placed his hand on my leg. But he shook his head no to taking a break.
We were at a local school listening to a presentation given by 3 students about childhood cancer.. about Unravel and about our Jennifer.
It was incredible. And meaningful and so so wrong. My Jennifer dancing away in glitter on a screen in front of all these kids. There to teach.. to show and to hopefully give them the drive they need to make a difference.
See we failed. All of us did. Because things haven’t changed for kids with cancer.
If its not a grim prognosis, like ours with DIPG with somewhere between 300-400 kids diagnosed every year in this country but still always terminal.
Then it is a grueling treatment with unending side effects one of which is a much higher likelyhood to develop secondary cancers from the treatment. Girls that get radiation to their chest are more likely to then develop breast cancer than woman with the BRCA gene.. the one Angelina Jolie has that caused her to choose to get a double mastectomy.
But these kids were told .. led by 4 beautiful girls. Three 4th graders and one forever 6 year old have the opportunity to succeed where we haven’t. To stand up and make a change happen. To start working to change these statistics.
They are doing a coin drive at their school. All inspired and put together by a little girl who knows what happened to Jennifer. That sees the injustice and decided to do something about it. She sees how we failed.. how we allowed this to happen by our lack of action and she .. at 10 refuses to do the same.
The possibility I see from children like this is limitless. Because she inspired 2 friends to organize this with her.. and together they will no doubt inspire countless other kids to do what is right. To take care of each other. They helped us today. My boys .. seeing that their sister is remembered.. that she matters. That we matter, it impacts them.
I hope with everything in me it continues. I always say it falls to parents of cancer free kids to create the change.. but really it will fall to our kids. One day they will inherit all of this. And I see they want better than what we have provided for them when it comes to pediatric cancer.
So I promise to support any kid of any age that wants to make a difference. A grade schooler.. a middle schooler a high schooler or a college kid. If they are local I will do my best to be there to help and support and if its a distance we can supply the tools needed. If we just simply support them and empower them .. they can do great things.
..because inherently children aren’t just sorry they are active. And because Jennifer… my Jennifer she would have been one of the greats.. Just another unanswered question that floats around in my head… I don’t know what she would have done given the opportunity to live but it was have been spectacular. ..I know because what she is doing in death is breathtaking.
All of this was today was one inspiring young girls idea .. for them because of her..And as for me and us..
i am so proud of you buggers
because i know you were there today
i know you helped
i know for you its simply
for them because of them.
…until there is a cure..