Ivy was denied the three weekly Intragam and so her meltdown week continues. I’m disappointed. Mostly for Ivy because she feels awful for over a week before her next infusion and she just doesn’t know why. Mostly for Ivy because for that week before she has her next IVIG she starts to pick up all…
Category Archives: Day In And Day Out
Now I Lay Me Down To Sleep
Caring for a medically fragile child is one of the hardest things parents will ever face. Although keeping up with medicine schedules, feeding schedules, and all the required doctor and therapy appointments can be tough, the most difficult thing, in my opinion, is being afraid to sleep. Sleeping might mean that you miss the seizure…
The art of talking about your child
Oftentimes, people who don’t Max that well—coworkers, neighbors, acquaintances—ask questions about him. I’ve mastered the art of the succinct, upbeat response. Here’s how it usually goes: They say: “How is Max doing?” I say: “Well! He’s really coming along.” What I really mean: He amazes us each and every single day because he’s doing so…
Some Thoughts as Autism Awareness Month Comes to an End…
The month of April is coming to a close, and with it ends Autism Awareness Month. However, so many of us don’t have an end to Autism. It is an ongoing, daily struggle filled with accomplishments, setbacks, discoveries, joy and pain. It is a journey, and the topography changes moment by moment. However, it is…
Because We All Need One
Raise your hand if you are a parent of multiple children each with multiple special needs for which there are no medications, therapies, treatments or surgeries to control the bazillion issues pushing the entire family closer to the edge… …because I’m feeling whiny…like a complete flop…utterly exhausted… …and alone. Whether you are a parent of…
Blog Review
Hi de ho there! “Maddy” here, an interloper. I’ve nipped over from “home” to cast my evil eye over some blogs belonging to other mum’s of special needs children. So hold on tight as there will be none of that fluffy wuffy American type of kindly review. [Oopsie I meant Canadian of course!] Now you…
Blind Photographers
Think you can’t take good photos? Stop your whining…you have absolutely no excuse. Blind Photographers is a blog and photo archive of work by…yes…photographers who have visual challenges, including complete blindness. The BlindSighted Project allows members of Blind Photographers to explore challenges related to our eyesight, challenges that affect our image-making process. This project is…
The Rhythm of Silence…
For an entire week the words have refused to come. Every ounce of whatever limited writing essence I poses has been lurking in that maddeningly elusive corner of the brain where all similarly critical talents and vital bits of information vanish from time to time… The location of my car keys, the date of my…
How Does Your Garden Grow?
I orginally posted this on my blog two years ago. But, walking through my neighborhood Easter Sunday brought it back to mind, and I decided to share it here. As I was walking through my neighborhood last night, I wondered if I could divine anything about the people who lived in the houses by studying…
Request Permission to Abandon Ship
Although he lives with Autism, Asperger’s Syndrome, Mac is very verbal…actually eloquent in speech. However, he rarely verbalizes his thoughts and prefers drawing pictures to empty his mind. It is easy to see his mind at work as he sits and stares out a window, deep thoughts traversing his extremely bright mind…but I’m not often…