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October 31, 2016 / October 31, 2017

October 31, 2016 was the worst day of my life. Ryan and I were ushered into a small conference room. With our backs to one wall, neurologists, neonatologists, social workers, a psychologist, and palliative care specialists faced us. Behind them was a wall of windows looking out on the Children’s Hospital of Philadelphia’s atrium. In the atrium, children dressed in costumes and trick-or-treated around the hospital. Their laughter echoing through the space offered a surreal soundtrack to the family meeting where we learned Oscar’s prognosis. The neurologist spoke to us slowly and purposefully while the rest of the room stared at us quietly and blankly. He talked at us about children’s ability to smile and how powerful that is when there are no other abilities. He talked at us about quality of life decisions. He talked at us and kept talking. I don’t have a memory of the rest.

October 31, 2016.

October 31, 2016. Children’s Hospital of Philadelphia.

The room emptied and we were left there alone with the echoing, disembodied laughter. My sobs broke our silence. (“But, he’s just a baby.”) We were held prisoner in that room, not knowing how to escape or where to go. We called the psychologist. He came back, spoke with us for some time, offered us some literature; it was called Loving & Letting Go. He held the door open for us and we stepped out into another world.

To say Oscar’s first Halloween was not what we anticipated is a gross understatement. It existed in some alternate reality; the “Upside Down.” I was already broken before that meeting, but I don’t think I had a “breakdown” until after it. Somehow at some point we made our way back to Oscar’s bedside where this picture of Ryan and Oscar dressed in tubes and wires was taken instead of pictures of him dressed as Batman. That costume remained in the drawer in CHOP’s NICU. Days later we did put him in it for fear he would never get to wear a costume; my only memories of it exist in stills.

A year later, we are all in a different place and space. Oscar got to be Batman. And we got to be Batman’s parents. Oscar also got to be Oscar the Grouch and a skeleton. So, yes, we had three Halloween costumes for Oscar this year because now it is our holiday. It is not CHOP’s holiday. It is not epilepsy’s holiday. It is not cerebral palsy’s holiday. It is not cortical visual impairment’s holiday. We filled two weekends with every fall activity. We went to the farm and picked out pumpkins. We helped Oscar to draw on his and carved it for him. We roasted the seeds while roasting a Sunday supper. We turned off all of the lights, set our jack-o-lanterns out on the floor, lit them, and laid with eachother looking.  We watched The Nightmare Before Christmas cuddled together on our couch. Oscar had pumpkin puree for dinner. We marched in Nyack’s famous Halloween Parade. We went trick-or-treating. We ate Twizzlers and Oscar gnawed on his. We welcomed fall and slept under fluffy blankets.

Holidays are particularly difficult for those of us grieving, whether that grief be for a person that has died or for the loss of a life you planned for. I don’t claim to have it all figured out, but I’m attempting to embrace the hard times. Let the grief and the pain hit me like a tidal wave, hold my breath, and cling on to any life rafts that are floating by. If I come out the other side, I will be thankful for the rafts and thankful for the air in my lungs and thankful for another day to keep swimming.

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Thomas Wayne, M.D. (deceased), Batman, and Martha Wayne (deceased). Nyack Halloween Parade, October 28, 2017.

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Oscar, 1 year.

This has been the best and worst year of my life. I have felt tidal waves of grief as well as tidal waves of love. I have descended into the deepest valleys of sadness that I thought I’d never crawl out of and then ascended the tallest mountains of joy. I wandered aimlessly and pushed forward into an unknown future.  A part of me died and a part of me was born.

I have lived 365 lives this year; each morning I woke a different person. Some of them I remember, some of them I don’t. Some of them I wish I could remember, others I wish I could forget.

Oscar Dov Beckman was born at 7:31pm on October 7, 2016. Today he is one year old.  Today is a day we weren’t sure we would see. But, we’re here and we’re doing the best we can. Tomorrow is a new day; a new opportunity to be the best versions of ourselves. Thank you for teaching me that, Oscar. Mama loves you.

 

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September 17, 2017: Oskiefest!

September 17, 2017.

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The first (annual, we hope) Oskiefest was a reminder of everyone that has supported our family over the past (almost) year.

I continue to struggle to explain the personal transformation I continue to undergo. The only way I can explain it is I feel as though nearly all of me died in the final months of 2016. In 2017, once we were home from the hospital, I regained some sort of consciousness but I’ve had to learn how to live again though some sort of personal rehabilitation. I’ll never be able to accurately put it all into words.

Oskiefest happened because of the family, friends, and community of people that (both literally and figuratively) carried us the past year. We cannot thank everyone enough for their help celebrating Oscar yesterday and for reaching out to us to see how we’re doing. Feeling like people aren’t forgetting Oscar (or us) tightens my chest with every emotion imaginable.

Thank you all a million times over.

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Nyack, NY.

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#myyoungmouse #specialneedsparenting #specialneedsmom #disabilityawareness #epilepsywarrior #scn2a

 

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