Her birthday. The second one we have endured since losing her. The anniversary of her terminal diagnosis. DIPG. The same day and the second we have faced without her.
We escaped with the kids. It seems to be the only way I can even begin to imagine facing these huge milestones. To the beach, a beach house that friends of our family open up to us.
I like being somewhere she was. Being able to remember her in one corner. .. or on the stairs or sharing a meal. She was here with us once. Alive and whole.
We mostly escaped social media and our phones on the trip. But Tony and I each took a few moments of solitude to escape into the digital world. We saw post after post about our daughter. About moments and memories people made with their children .. because knowing a family was enduring a birthday without the girl was a stone cold reminder.
I think for Tony it was humbling .. . To know she was so very missed and loved by so many people. And to see her over and over again. The impact she has had.
For me it was such a mixed bag .. I loved. So much. To know she was remembered and not forgotten. I know how happy it would make her to see families making memories.. No into yes moments on what should have been her day full of yeses. I know she would want to help other kids .. so knowing the work being done at Unravel was shared because of her.. That would make her happy.
So I appreciate that. The only gift I can give her.
I hated it too. Im scared to admit that. Because its wasn’t a good day for us. Not a day full of smiling joy filled yeses. It was clenched teeth.. and a tired coming from my depths. It wasn’t a day full of appreciating the children I am so lucky to have.. It was a day that left me longing for the one I lost.. and simply just for my bed. To escape this never ending nightmare.
So I looked at other peoples joy and I wanted it to be me. I wanted to be able to absorb it. To soak in my children. 5 living loves in honor of another child’s birthday.
I was jealous. Cold bitter humiliating jealousy.
Because this mom I was asking for others to be in Jennifer’s honor I wasn’t. I couldn’t. It was like I forgot how to be.
I feel like I let her down. And them down. And me down. Because I know better how precious this time is with them. An unpromised gift.
I am sitting here now. In what was her room, that we are transitioning to be Bridgette’s room.. I sit here with a empty crib.. next to a tower of storage boxes filled with never outgrown 6 year olds clothes and a sound machine playing. It will one day break but I will leave on until then, the sounds of the ocean that she and I listened to her final days ..
I love that noise. Its powerful and relaxing all at once. I am grateful for the beach. Because this week it allowed for memories to be made for us in the days leading up to her birthday. There were smiles and laughter ..
But I still felt trapped by my sorrow. A friend who lost her son described it as having your feet and arms tied and being thrown overboard. I think that’s about a perfect description.
Fear. helpless. Paranoia. struggle. Dark.
I can’t believe we have missed 2 birthdays. I don’t know how I will survive this year after year. I’m not even sure that I can. ..
Oct 28th. Her birthday and the anniversary of her diagnosis is just the kick off .. We have Halloween and the holidays to endure … all to be capped off by the 2 year anniversary of her death. And right now it just seems daunting. An insurmountable mountain of pain.. during the times that I more than anybody should know to appreciate. ..
you would be 8.
i look at your barbies ..
with the feet and hands chewed to bits
what would you have wanted?
you should be 8.
..until there is a cure..