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…
Monthly Archives: November 2010
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…
I’ll feel better…
…After I talk about this. I need to preface this post by saying: I promise not all of my posts are serious. This just effected me so much and I feel the need to talk about it. You’ll understand this post more if you read THIS post first (don’t worry, it’s short). On Monday morning,…
Happy Birthday Precious!
Precious turned 5 this week. Her birthday party took place last Sunday. We booked it a local grocery store which runs cooking classes for kids and adults. The kids made pizza with their own dough and toppings, then fruit salad, then cupcakes that looked like reindeer. The cupcakes became their loot bag. While the pizza…
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…
Dear Little One
Sometimes you can’t move forward until you go back, and I have realized that I have skipped so much of my journey with my daughters, just jumping in here without mentioning where I have been. One of my biggest challenges was the transitional time when Zoe was growing into a child with visible disabilities. This…
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 —…