Tonight is the first night of Chanukah. My kids are eagerly awaiting sundown so we can sit around the table to light the candles and of course open presents. When I was a kid, I didn’t like sharing the fact that we were Jewish. In the small town where I grew up, we were one…
Category Archives: Day In And Day Out
Special Exposure Wednesday
Ivy and Noah celebrate turning five. Oh what an amazing five years it has been. I have been a little bit wistful this year. Remembering how they started life on the outside. Remembering the night they were born. Marveling at everything, at them. It will be strange, I think when they go off to school…
Lean on Me — A Caregivers Anthem
Music—the soundtrack of my life. Certain songs hold special meaning because they deliver a timeless message. The 1972 chart-topper LEAN ON ME by Bill Withers is one of those songs. Caregivers, listen closely. Then reach out for help when your load becomes too heavy to carry alone.
Who Needs Sleep?!?
Sleep is for the Weak. Yes. Someone knew what they were saying when they developed that title for a book. For 6 years, we didn’t sleep. I mean…Didn’t. Sleep. That’s part of the unofficial, official symptoms of Landau-Kleffner Syndrome (epilepsy). For us, it means putting J to sleep for 2 hours, he wakes, tosses and…
Part Two – Helping Special Needs Siblings Thrive
Plugging my younger two kids in to other things they love breaks my heart. It means having them, with their playfulness, normal range of emotion, and snuggliness out of the house, leaving me with only the most challenging kids. It means being in the place I least prefer and that can make me really mad. And lonely. And resentful. Unless I actively grieve in healthy ways…
Dark and Light
I often talk to new parents (mostly Moms) of children that have been diagnosed with Cri du Chat like Olivia. That’s the whole reason I started this blog. When I first found out Olivia’ diagnosis, there was so much darkness. I couldn’t find my way out. I went on the internet and only found a…
Therapy tools (part one): speech
I’m going to use my next couple of posts to talk about the tools we are using with J. I am in no way a medical expert or therapist; I’m only sharing what we have found to assist my daughter. At 20 months old, J is at a 6-9 month level for speech. She knows…
Addressing “The Look”
We’ve all experienced “the look” from folks whose mothers apparently didn’t teach them it’s not polite to stare. Sometimes it really bothers me. Sometimes not. Recently, I had the opportunity to unofficially analyze the look and figure out the difference…. for me! I spent a day at the Bronx Zoo with my 3 beautiful children —…
Smooth
Is it Saturday already? At times, this week has flown by. And at others, it has dragged on. Especially from 5 a.m. to about 11 a.m. on Tuesday morning when Tim had surgery on his foot. He plays in an adult soccer league and a week ago Tuesday, he got kicked in the foot. That…
Equipment.!
Equipment. ! We’ve been waiting since the beginning of July for a piece of equipment to be approved by medicaid. Today I called to check on it. I know I probably should have done it earlier, but really it’s not unusual to wait for this company. To get my son’s Wheelchair it took 9 months…it…