Grief in my Gratitude: My Son is Turning Five

Five years ago,  with only a few hours of labor, my son came into this world. He was bigger than his sister, quieter than his sister, and in that brief perfect moment that he entered this world, our family was complete. On his first birthday, we had a big party, just like we had done for his sister. I jokingly would say it was to celebrate us as parents making it a year because, after all, “these kids will never

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Anticipatory Grief: Sibling Perspective

Community Submission by: Ameera Rey One minute you are laying in bed. Eyes closed. Trying to go to sleep. Then you have an out-of-body experience. You are in the hospital. A doctor has just walked in and told you the person you love so much is dead. You are sobbing. So extremely angry. Angry you couldn’t save him. Angry you couldn’t protect him. Angry his body was riddled with a disease that stole his life. You’re so angry that you

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A Testimony of Strength

For a year and a half, I worked out in the room attached to our playroom. There is a sliding glass door that leads into a mostly glass room which looks out into the backyard. This also means anyone who is in the playroom can see me peddling away on the Peloton. Over the last year that everyone has been home, there are days my husband would say, “take a ride,” and if you need exercise as I do, many

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Missing Puzzle Pieces

My son is like a puzzle. One with no directions, no picture, and guess what, it’s missing a piece – or in his case 3 pieces. Sure, we know where the missing pieces are, or should I say aren’t, but it impacts other puzzle elements as well. There are days I look at my son, and I wonder, does he know he has an itch? Do you ever have an itch and think about it? I do, now, at least.

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Triggering: Why is your child hurting you?

“What did you do?” It is often asked in one form or another when people find out my son bites, kicks, and hurts, it most cases, me. See, people assume that I must have upset my son. After all, why would he hurt me? But the reality is, I am fortunate because I realized I was doing nothing wrong. Let me go into my exact thought process. At first, I thought it was my fault. That my son was trying

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2020: Glimpse Into the Life of a Special Needs Family

The world stood still for a moment as the freeways were silent, the skies empty of any planes, and the sidewalks were bare of any people. The uneasy calm mixed with fear in the air was a feeling I had known all too well. It was the feeling I had when we got our diagnosis. I was in a pure daze during that phone call. The world lost all sound, and it felt as if I was all alone, even

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An Outcast In My Own Family

One night I was sitting on the floor near my son as he rolled around chewing on a book, and I realized the rest of my family was laughing and having fun at the kitchen table. It was the odd moment where my life sort of flashed by, and I realized I always was the one to step back to “do the right thing” so others could enjoy themselves. I was the one who left early to get a child

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A Day in the Life of a Special Needs Mom: Pandemic Edition

Community Submission by: Anonymous It’s 8:00 a.m. and I am awakened by the sound of J, my youngest son, kicking the wall next to his bed. I am so very tired. I feel like my actual soul is exhausted.  I unzip J from his special bed, which keeps him safe at night. His whole room smells like pee. I sniff his sheets. Despite the fact that I washed the bedding days ago, it all needs to be washed again. J, age

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To All The Mothers I Have Been Before

Community Submission by: EllieEllie is a lawyer living in Baltimore with her husband Mark. They are parents to six year old Molly and two year old Lila, who has Lamb-Shaffer Syndrome. To follow her story, sign up for Ellie’s newsletter. To the mother of the two year old, worrying about whether to have a second baby… I see you.  I see how worried you are, about having a second kid and what if that child isn’t healthy?  What if they

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It’s Okay to Not Know How I am Feeling – and Still be my Friend

What kind of friend am I? I am always busier these days. I have children, so I can’t do anything for myself during “normal” hours. I’ve moved three time zones from one set of friends, two from the next, and I somehow need to make new friends where I live now in the middle of a pandemic. I don’t want to be a bad friend, but the deck is stacked pretty high. I am busy, stressed out, my life consists

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