So I’ve been trying to think of how to describe Rowenna as a big sister but couldn’t come up with the right words. It recently occurred to me that my own expectations and surprise had been getting in the way of that. Rowenna is big sister-ing in her own way, just as she always does. […]
And Then There Were Two
It’s Mother’s Day, and it seems like there is so much I could say about the unexpected challenges and surprising joys of motherhood. I could talk about how this is a day I feel the keen sting of loss. I could talk about my two sweet girls and how proud I am to be their […]
Light and Dark
I live with a ray of sunshine. When she smiles, she smiles with her whole body. Light just pours out of her and her enthusiasm is contagious. She never fails to have a smile, a pat on the cheek, a hug for those she loves. But lately it’s been hard to live with her constant […]
A Day in the Life
In honor of World Down Syndrome Day (3/21), bloggers have gotten together to provide a glimpse into the lives of their loved ones with Down syndrome. It’s a blog hop, so if you’d like to read more, please check out the other participating blogs! (links at the bottom of the post) On school days, Rowenna […]
Sweet Afton
Little Sister is here. Her name is Afton Mattea-Mary, named for a beloved folk song (you can listen to it here, lyrics are a poem by Robert Burns) and for two people who have supported us and loved us unconditionally through it all – my brother, Matthew, and my grandmother, Mary. I can never fully […]
Retard, Revised
Today is Spread the Word to End the Word Day. I’ve revised my post from last year to include a challenge. In short, I’m tired of people defending their use of the word. I’m tired of people thinking it’s ok. And I’m past the point of wanting to be nice about the whole thing, asking […]
The IEP: 4K Edition
Tonight was the main event: the IEP for Rowenna’s 4K year. Honestly, I was nervous. After the surprise announcements from both of her teachers that Rowenna needed much more support than we realized, we had trepidations walking into a meeting where we thought we would essentially end up disagreeing with all suggestions. I’m also 39 […]
Together
Nearly 8 years ago, I promised hubby in my wedding vows that no matter where we lived and no matter our circumstances, he would always have a home. For me, home is not really a place, a physical spot, a hook to hang your hat. It’s a feeling of belonging that can be created no […]
Call to Action: ABLE Act
See this lovely little girl? I would love to save for her future, just like parents across the country save for their children. The problem is the way our service system currently works. If she comes into more in cash assets than the federal government allows, she will be stripped of her access to Medicaid […]
Sucker Punch(es)
A post in which we receive some very unexpected news. We’ve tried to create a team with the people who work with Rowenna at both schools. I regularly speak with her teachers and therapists, we use the communication notebook to some extent, and I am at every drop off and pick up possible to remain […]
