This past week was all about running.. moving..Both physically and emotionally. Preparing for our first go as Team Glitter at the She is Beautiful race and launching our first Mama’s Night Out in San Jose put me in work mode pretty much full time.
This morning though I woke up in pain. My body telling me it was time to slow down a little. For the little one growing under my heart and for the one I have always carried in my heart.
.. It was a beautiful weekend though. . But I miss her right now. Doing events with her so present for so many.. it somehow makes her absence so palpable afterwards. Like I got to feel like her mommy again for a little bit..only to wake in the morning to an empty pink princess covered bed.
i miss you baby.
It was the perfect race for us as Team Glitter to get the chance to fundraise over 56,000!! Because it was uplifting and empowering two of the things I most want Unravel to be.. I look at it this way… Pediatric cancer sucks.. but doing something about it doesn’t have to and I hope that everything we do as a foundation embodies that. .. And well.. the whole pink thing didn’t hurt either.. I was lucky enough to speak the race founder at the very end of the event and I actually choked up a little! Those that have been reading /know me know how rare that is.. But I think it was because the whole experience was important not just for me as Unravel founder getting the opportunity to support people in raising that kind of money, but also for me as Jennifer’s mom and for my Jonathan too…
Tony had told Jonathan that I would be gone for a night and he said he wanted to go with me. We talked about it.. I explained to Jonathan where I would be and what I would be doing and he still was very insistent on wanting to go. So I packed for both of us. It helped. Because really if life had gone the way I always imagined it would I would have been doing this race with Jennifer. So thinking about leaving already had me feeling emotional. Having a little talkative companion on the drive was good for me.
We spent the night in a hotel with our friend the night before. For a 5yr old staying in a hotel is pretty awesome so he was excited. We walked to dinner and sat outside. He sat by himself and ordered his own meal. He loves to feel independent.. strong .. mature. He is so incredibly loving and loyal to those he loves.. its crucial .. especially in this new role of oldest to be able to find his independence. He does well.
We went out for cold yogurt and then back to the hotel for bed. I told him it would be a early morning and he went to bed easily. My girlfriend and I stayed up and did our nails and just talked.. about all sorts of things.. but we always kept coming back to Jennifer. I appreciate those times so much.. late night talks about my girl.. breathing life into her again .. the only way I can.. Through memories of her..
I crawled in next to my sleeping boy under the covers. And I silently wept as he snuggled in next to me. Remembering my time with Jennifer for those 7 weeks in treatment at Stanford.. our shared bed. .. I long for those nights again. I desperately wish I could wake up again in that time.. time that she was scared and struggling.. but here. With me. So much in that time was so impossibly hard on her. I wanted to save her from it all.. but now that she is I often find myself falling to sleep wishing for somebody to just save me.
He woke up 5 minutes before my 6am alarm even went off.. he was ready! We got dressed and headed out. He was so cheerful for the early hour. But once we parked.. and started the walk towards the race he seemed to pull inward more and more. We got there and the crowd was already sizable. A mostly female crowd covered in pink..
We made our way to the Unravel booth and Roar by Katy Perry started playing. .. Right after diagnosis we changed the words to the main part of the chorus to our Jennifer anthem.. what our hope was for her.. What we hoped she would do to DIPG. She loved it.
“You’re gonna hear SISSY roar”
She will.. but not the way we wanted. I can’t wait until he can understand that she is roaring still.. those cells of her he peered at under the microscope .. They will roar and roar and roar until DIPG is defeated.. Never good enough for us.. far too late for our family.. But I want him to know she is roaring the way we all tried to help her too.. just not the way we wanted her to.
It was too much in that moment. I walked away mid conversation.. dropped our bags for a friend to put away and carried him off.. Just a moment of respite.. of ackwoldgement .. That yes this is hard.. but yes we can do it.
We came back and he asked me to pull out the camp chair we had packed for him to sit on. Her bright pink chair. He pulled me close and said he was glad we brought that one.
And he sat while I worked. I wanted to feel her.. a connection to her that so many had already shared they were feeling.. but I didn’t. It reminds me of Fluttering last September. She was so busy trying to make other people feel the gift of her support.. I missed her a lot in that month.
thank you for encouraging them Jennifer. thank you for continuing to give to other people.
Then the race was starting.. I knew I couldn’t run it.. My pregnant body can still Cross Fit but running has proven to be fairly painful. I wanted to walk a little bit.. He decided to stay back with Fairy.. I’m not sure what happened to him.. That fragile tightrope of emotion he was balancing on broke and I got a call that he was crying pretty hard.. and nobody could settle him.. Luckily I had packed Jennifer’s iPad (here she is using it to talk to him) and they seemed to calm him until I made it back..
..after getting a bit turned around and finding my shortcut back was actually the 10k course!!! **note to self never listen to a Irish woman ..especially one you are related to!** I made it back to him. He was relieved.. but calmer than I expected.. and the iPad was nowhere in site.. I wasn’t sure what had happened. .. I told him I was going to go into the crowd and had out Unravel brochures and he wanted to come. So we did.. my boy and I ventured out.. and the sky opened up. A light rain. . I smiled. Thinking how much I love to run in the rain.. My most favorite time to run..
All these woman getting to experience that ..
I hope some of these people that got handed a pink and gold trifold actually opened it and read it.. I hope they can join all of us in Team Glitter to not just be sorry .. but be active. He pulled on me often. Wanting to just keep moving. He was cold but refused the jacket I had packed.. He had a picture of sissy on his back and didn’t want to cover it.
We returned to the booth and a friend working it came over and told him his visitor was back.. Seems when I was gone a little visitor had come to visit him. I won’t share what it is.. because I think its his message from his sister.. I think it will be for the rest of his life.. And thats his story to share.. or not. But he excitedly lead me over to see..
And for the first time that day .. that I assumed would be so emotional for me.. I cried. I picked him up and cried as his little beaming face happily looked at me and hugged me with all his might.
I didn’t feel my Jennifer.. but being the incredible big sister she will always be.. she went to him. And that was the best thing she could have possibly done for me that Sunday morning.
thank you sissy miss
I noticed a woman at the booth with a shirt that I can now recognize as shirt supporting a child with cancer. Her baby has neuroblastoma.. but is holding steady with it. I took Jonathan aside .. I showed him this healthy smiling baby and I said this baby is our why for today. He is living with.. surviving with cancer.. What we are doing with Unravel will help make more it so more kids have the same outcome as that adorable little baby.. he took a deep breath .. put his head on my shoulder and asked to go to the beach.
He never used to like it.. But he now seems to really enjoy it. So I promised we would. We ended up going to the Boardwalk. Ive never taken any of the kids there.. I planned to .. But I always seemed to have a kid that needed to be home for nap… and really no rush.. I had time right?
..wrong.. i was wrong honey.. I’m sorry .. you would have loved the Boardwalk.
We walked.. did a ride and then asked to go on the sky glider. This boy that hates most rides asked to go o the one that carried you over the entire boardwalk. We got on.. I gripped him the whole time.. so nervous the whole time.. But he seemed to really enjoy being higher than the birds and so close to the clouds. We finished and headed to the beach. He immediately melted in. .. crept closer and closer to the ocean. Asked for help to dig a hole deep enough to bury him. It sent unintentional chills down my spine .. bury me .. how much simple words carry so much weight now.
I always write her name in the sand near the ocean.. He did too this time.
We played a video game.. I gave him another piggy back ride to the car and we headed home. When we got here it took him 5 minters to get from the car to the door.. I asked if he wasn’t ready for our special time to be done.. He wasn’t. So we took just another minute together and joined his brother and sister, ready to be done with our private time, with each other and with his other sister too.
..until there is a cure..