I hate these words “lets get some lab work.” My daughter, Mary, is a terrible stick. Her blood flows sooo slowly. Her veins collapse and they are hard to see in the first place. There has been one person at the children’s hospital that has been able to stick her on the first try, but do…
I got the job. Now what?
Introductions are hard. It’s easy enough to say, “Hi, my name is Debbie.” but where do you go after that? After 40 plus years of living, there’s a lot more to add. And boy can I add it! I love to talk, which I guess transferred into a love of writing at a very young…
Special Needs Special Abilities
Lots of folks have disabilities. I have dyslexia and am ADD. I have a lack of ability to gain some skills the way typical people gain skills. My daughter has CP she too has the lack of ability to gain skills the way other typical people gain skills. Neither my daughter nor I have a…
Doing the Best I Can.
I didn’t wake up on time this morning. I managed to get breakfast made and get my daughter dressed so I could drop her off at school. I didn’t have time to make my husband’s lunch. I dropped the family mini-van off for service and hitched a ride back home with the courtesy shuttle. My…
When imitation isn’t flattering
My two year old has been in a stage of imitating everyone around her lately. As these things go, I find it pretty adorable. Until she tries to imitate her six year old brother. Not so cute anymore. Her brother, Will, was born with a rare chromosome deletion that few kids in the world share. There are…
This Everyday Love
Every night it’s the same thing. At bedtime, I climb into my four year old son’s bed next to him, cover him with all his blankets, and have this conversation: Me: “Thanks for a great day today!” My son: “Thank you.” Me: “What was your favorite thing you did today?” My son: “My favorite part…
Special Exposure Wednesday.
There is nothing better than a pre school disco, a sausage sandwich and the company of your twin brother to make your day and even though you’re exhausted within the hour, you still class is as ‘the best night EVER!’ Got something to share? Why don’t you join in this Special Exposure Wednesday. Please remember your…
The Winds of Change Have Brought Us Here
“The winds of change….” Whomever wrote this line was unaware of its reach. For many, the winds of change have been far from subtle. Days previously filled with negotiating steps connected in a direction neatly if not roughly planned. Sights seen, destination set. Brightness abounds, formulations and readjustments or tweaks occur only as needed. You…
4 Keys to More Time This Holiday Season
Holidays can be hectic. But nowhere more so than in families with special needs kids. I mean, seriously, how do we mix Burl Ives, Christmas cookies, and caroling with incontinence PT, psychiatric appointments, meds adjustments and therapeutic parenting?! Come take a peek and find out!
That Fateful Day
It started as a textbook pregnancy. It ended with the emergency transport of our four day old comatose baby to neonatal ICU at the University of Minnesota. There we discovered that our Melissa has rare metabolic disorder. This was the first day of what would be my 21 year journey as the father of a…