We are a baseball-loving family. I’m a born and raised San Francisco Giants fan and my parents are die-hard Giants fans. My brother played ball from the time he was tall enough to bat off a tee until he started high school. James didn’t necessarily grow up a baseball fan, but was converted while we… Continue reading No Night Games for Henry
One of the things we miss most about our home in California is how close we were to the beach – just minutes away! But one of the things we were looking forward to in our new area is being able to go to beaches where the water is warm, unlike the northern California coast.… Continue reading A Day at the Lake
I’m a day late on my Dup15q awareness post for this month, but I’m excited to share with you a beautiful guest post from another Dup15q mama, JiYoung. On her blog, My Special Life, JiYoung shares her thoughts and experiences as a parent to her young son Lucas, born with Duplication 15q Syndrome – the… Continue reading The Hero’s Journey – Guest Post from JiYoung
Calvin’s evaluations last week went just fine, and this week our therapy schedule feels a lot more manageable. In fact, it’s actually not bad at all. I just had a bad week last week with being worried about the evaluations. I also realize that all last week I was staying up too late watching TV… Continue reading My Favorite Time of Day
We moved here in December and after the evaluation process with our new early intervention organization and new therapists and new insurance, blah, blah blah, Henry’s in-home therapies are finally starting this week. He has been in feeding therapy since about February, and Calvin’s process with the public school district went a little faster since… Continue reading Therapy Schedule in Full Swing
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
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
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’ve shared about how my second son’s diagnosis of Dup15q syndrome was difficult for me, and the things I wish I’d known in those early days of coping with such surprising news about my baby boy. One of the things that was, and still is, difficult about being a parent of a kid with a rare… Continue reading How Instagram Helped Me Embrace My Son’s Diagnosis
I have a vivid memory of driving to the hospital to have additional blood tests done on my tiny baby, Henry, and thinking to myself, I wish I could reset and start over. I was thinking of how I used to reset my Super Mario Brothers gameboy game and start all over from the beginning if things… Continue reading Henry’s Dup15q Diagnosis: 3 Things I Wish I Could Have Told Myself
Surprisingly Special 