We left the house exactly as scheduled, which in itself was a miracle, arriving as requested 30 minutes prior for check-in at the hospital. Everything was going smoothly thanks to pre-check-in via the phone, and we were sitting in the radiology waiting room a full 10 minutes early. Our appointment was for 8:00 am, and I thought, man, we might be out of here by 9 o’clock. Before I get too deep into this story, let me tell you a
The first time I heard the term hypotonia, it didn’t even register. I focused on the shots and answered questions at that checkup when our pediatrician uttered a word I never heard before. I must have missed it. After all, humans do that. We use context clues, and if the word doesn’t seem too alarming or concerning, we tend to assume the meaning and move past it. My husband heard it, and he must have started to do research and
Community Submission by: Leslie Mehta Leslie Mehta is an attorney. She lives with her husband, Tarun, and two daughters, Brooke and Blair, in Richmond, Virginia. You can follow her advocacy journey at www.prettybrooke.com, on Facebook at pRETTy Brooke, and her YouTube channel of the same name. I met Tarun Mehta in law school. Five years and several bar exams later, we married near my small North Carolina hometown on August 11, 2007. Rarely did we discuss having children. We were
Community Submission by: Kelda York Kelda York is married with three children and lives in NH. She is a pre-school teacher, an avid cook, and enjoys a good novel. My son has always kept us on our toes, even before he was born. There were concerns over a heart arrhythmia, which was detected at 16 weeks of gestation. He decided to join us 6 weeks early and spent weeks in the NICU to fix some lung development issues (his heart
When I heard the word “advocate” for the first time, I assumed it was very political. I am not political, I reasoned, so therefore I couldn’t be an advocate. Yes, I vote–but running for office is not in my future (although I have learned never to say never). Little did I know that being an advocate was not limited to politics. It is so much more. It is giving a voice to the voiceless, or those who are barely heard.
Dangerously Mobile – One who can move their body, but has limited awareness of the implications and boundaries of their movements. Think about it like this. Imagine you are on a boat. The boat is moving. It’s moving fast. You are trying to gain your balance and walk from one end to the other, but the waves are unpredictable, and it feels as though the ground is always in motion – because it is. Slowly you are making your way,
I used to joke that I had no idea how to wean a child without being pregnant with another one. Our oldest was nearly two when, in the second trimester with his younger brother, my body shifted its focus to the baby. My milk supply dwindled, and my son lost interest. It worked out brilliantly, without requiring me to take a tough stand. This was especially a relief because we have always called breastfeeding “boobies,” and our oldest was an
We know these people exist. The people who think that children like mine are drains on society. That if you don’t have something to offer the world, your life has less value. What we don’t typically see is someone posting their opinion on social media and not expecting that there will be repercussions for their words. The other night while scrolling on Facebook, I came across a post. Screenshot after screenshot of horrible, disgusting, “freedom of speech” arguments, stating opinions
Just weeks after our diagnosis, wound still fresh and raw, I took my son with me to the store. I was standing in line waiting my turn, him in the cart looking at me while smiling sweetly and slouching over from the lack of core strength, when the employee behind the counter said, “he is so cute!” I politely smiled, said thank you, while inside my heart dropped. My head, it retaliated with, “will you think he’s cute when he
Our son, Asa, turned five this week. The best picture I could manage of him (and his Covid hair) with his cake is this one. Here is what is going on in this picture: Asa does not know he is turning five. He does not know what a birthday is. He does not know what “five” is. He does not know what a number is. Asa has no idea the object on the table is a cake. However, like every
