Calvin turned 4!! And I’m calling this my 22q awareness post for this month 🙂 My oldest son, Calvin, was born with 22q11.21 Deletion Syndrome – meaning that he is missing a teeny tiny section of genes on his 22nd chromosome. 22q DS is not all that uncommon, and has gone by several different names… Continue reading CalBean Birthday!
It’s the 15th! On the 15th of each month I try to do some kind of awareness post about Henry’s syndrome: Dup15q. It’s a rare genetic disorder characterized by an extra piece of the 15th chromosome. Here are some of my other Dup15q posts: Rare Disease Day: Get to Know 22q and Dup15q Henry’s Dup15q… Continue reading 15 Super Special Things About my Son with Dup15q Syndrome
I used to work in a school where “HMP” was code for “High Maintenance Parent.” It was not a compliment. (And no, nobody ever called a parent that to their face. That I know of.) I think of being “high-maintenance” as being impatient, inflexible, and demanding. I think of HMP’s as being people who get… Continue reading DMEs and HMPs
The type of speech therapy that Calvin does is called articulation therapy. He needs help working on pronouncing sounds and words. His language and vocabulary seem to be pretty on track for his age. He talks in full sentences, he carries on conversations, he can go on and on about his favorite dinosaurs… the only… Continue reading Memory Game Articulation Practice
Somebody loved the train at the park yesterday! Henry was doing so well when we first got to the park. He watched Calvin ride the little kiddie boat ride. He was all right as we waited in the long line for the train (well, as long as Mama was holding him). And he was so happy… Continue reading Take the Hard Things with the Happy Things
When I spotted this popcorn cherry blossom tree craft from Glued to My Crafts on Twitter this week I was like, we have to do this! It fit all my craft project criteria: Easy [check]. Seasonal [check]. Developmentally appropriate for at least one of my kids [check]. Safe for Henry [check]. I already have all… Continue reading Popcorn Pear Tree Craft
The other day we pulled out our little collection of insect toys and made a Play Doh and Duplo garden for them. We talked about how the bees and butterflies would be looking for flowers, we did some little bee dances as we pretended the bees were flying back to their hive. And we talked… Continue reading Caterpillar to Butterfly Craft
Happy Easter and Happy Spring from Calvin and Henry! We had a rainy Easter weekend, so the boys put on their rain coats and boots for their egg hunt. Henry can’t actually walk very well in his boots, so we hid his eggs up on the porch where it was dry. I can’t get over… Continue reading Spring Things
Recently I was reading a post from one of my favorite bloggers about her sweet new baby boy and about letting go of grief tied to her experiences with her older son with cerebral palsy during his infancy. And I felt a familiar pain in my chest – not in my actual physical heart, but… Continue reading Letting Go of Things Not Meant for Me
I love finding adults with 22q deletion who are out there giving us a glimpse into their lives by sharing their stories, and giving hope to moms like me raising young kids with 22q. Which is why I’m so excited to introduce Amanda Ripsam! Amanda is a writer, motivational speaker, and 22q advocate. On her blog, Mommies Quiet… Continue reading Meet Amanda! Blogger & Motivational Speaker with 22q Deletion
Surprisingly Special 