How’s your Wednesday? . #specialneedsparenting…

How’s your Wednesday?
#specialneedsparenting #specialneedsmom #disabilityawareness #cyclicalvomiting


One year. Year one.

We didn’t know if we would see a birthday. When Oscar was three weeks old, we were told to contemplate “quality of life decisions.” A few weeks later, doctors found pneumatosis intestinalis during his gastrostomy tube placement surgery; a terrifying discovery every doctor at the nation’s best children’s hospital was baffled by. At two-and-a-half months old, Oscar was loaded into our car and we took the leap – fumbling with our first solo medication administration and tube feeding on a machine we’d never used while driving at night in Philadelphia traffic with a seizing baby. A few months later, we sat through Oscar’s fourth spinal tap, so sure that he wouldn’t wake up from the anesthesia. A week after that, we slept overnight in the Post-Anesthesia Care Unit (PACU) because, again, it was taking far too long for Oscar to wake up from a procedure. A few weeks later, we sat in the Emergency Department of our small, ill-equipped local hospital while Oscar vomited non-stop and without reason for hours. But, passing out asleep as a result, Oscar woke up in that hospital room – smiling.

This has been our year with Oscar. Terror met with joy. Depression met with elation. Watching a fragile infant who rarely open his eyes develop into a boy that continues to defy the odds. To quote Oscar’s Early Intervention speech/feeding specialist: Oscar has “the biggest smiles in all of Nyack.” To me, they are the only smiles in all of Nyack. The only smiles in all of the world.

Ryan put together this video of Oscar’s first year; it’s beautiful and painful, just like our lives now. The soundtrack is Keeping Warm by We Were Promised Jetpacks; it’s a song that Ryan listened to each time he met me at a doctor’s appointment before Oscar’s birth. Now, “the chances of being born are so slim” and “take heart in being born” cut deep in new ways as our family (both biological and chosen) suffer incomprehensible losses. Thank you for your continued support; our family loves you for it.


Oscar’s first year from ryan beckman on Vimeo.


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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