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: 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
I used to think that when people had children with severe disabilities, it would be something detected in the womb, or shortly after birth—that it would be obvious that something was wrong. But this was not at all the case with our son, Asa. Asa is the third of three boys. He was born after a mere two hours of labor, a big healthy baby weighing 10lbs exactly. I remember a hospital staff member saying, “Congratulations—you have a toddler!” For
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,
My daughter is watching me parent a special needs child, even when I don’t think she is. She sees me with her brother. She sees me cooking and cleaning. She sees me all the times I say I can’t play right now. But mostly, she sees my disappointments even when I think I’m doing my best to hide them. The other morning was one of those moments. First, I got the call canceling the appointment for my son that I
