I am a living breathing nightmare.
“I’m sorry you are living this nightmare”
That’s the only words I have for other parents when their children die.. I can even say it when its been years and years .. I am going to venture a guess.. by the hollow I see exposed when they know that I truly know.. think its still so very true.
Kids were really tired tonight so they all went to bed early. Gave Tony and I a chance to just watch some mindless tv..
Modern Family.. a comedy. Little girl wearing the same Belle costume my Jennifer wore on her birthday.. the one I had bought and saved for her.. knowing it would be the perfect birthday present. The day we found out she would die.
Then Criminal Minds… a character close to death.. I can’t help but tell him to go.. Tony can’t really get mad that I say it.. we both feel it.
Every night I nurse baby Charlotte to sleep and think (sometimes say) one day closer to you Jennifer. It actually helps to look at it that way. Like every contraction in labor … is one less you have to endure. Thats what life looks like inside my head.
I love my 3 living so I feel horrible admitting that.. .the pain is just so awful it makes me that selfish ,I would take her back.. in pain.. and I would leave them … in pain losing me.. the ache is that intense.
Sometimes though.. my mind wanders past my one step closer to her… amazing how songs constantly change.. That day. Listening to these lyrics before speaking at her services it was a song that spoke to me of strength.. now it speaks to my agony.
.. and when my mind wanders. And I think about how many more years.. years piled on top of years..
Last night after support group we went out for our usual dinner together. It was good. I was feeling really ok. For the whole day I had been feeling ok. Which was a complete high after the lows of mothers day, the 3 month anniversary and charlottes birthday.. as well as the anticipation of those 2 days… I was emptied.. and after that buoyed.. just above the water.
..til dinner. That young girl that I saw the first time we went out..she had a feeding tube and a bald head. Last night .. a shirt that proclaimed her use of radiation.
I so desperately wanted to go to her parents.. to connect.. to say I understand .. I am part of this cancer parent club.
I am their nightmare.
What could I say.. my daughter had cancer. .. oh what kind? DIPG. How is she?
So I sat. And cried.. lamenting that I was forced to join the ranks of these cancer parents.. but am unable to commiserate with them.
I lost so much of my identity when she died. Mom of 4. Adoptive mommy. Celiac mama.
Jennifer caused me to join so many clubs..the best one ever.. the most important one I have ever and will ever be part of..she made me a Mom.. Then adoption. . then celiacs. I was always open about our journeys.. always noticing other families in the same situation. Happy to share stories. It helped .. to connect.
Now .. this new club. Cancer mom.. I feel like the black sheep. I feel like I don’t fit in anywhere anymore..
I’m not just a mom anymore. I am a mommy whose kid died. I used to be a person who people came to.. for advice with all of the things we experienced. . and for raising 4 wonderful kids.. But not now..
..see now I am mother to dead kid.
That changes things.
The one thing we are supposed to do…the most singularly important job of a mom . . keep them alive.
Outcast in the cancer world..
and the real world.
.. . damn.. ..
I’m not just cancer parents nightmare am I
.. I am every parents nightmare . ..