Wow, two years of (knowing about) KAND. Colbie is all of a sudden 3 1/2 years old. She isn’t one of the babies of the KIF1A group anymore. New little ones have been diagnosed at an even younger age than she was and older children and adults have received this difficult diagnosis since then too.Continue reading “2 Years and the Race Against Time”
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Dear Diagnosis, It’s been a year.
Dear Diagnosis, …it’s been a year. I’d love for this to be a parting letter, but unfortunately we are stuck with you. So, instead I’ll reflect on our year together as much as I can. And I say our, because you have affected all of us in some way. I’ve felt this day approaching forContinue reading “Dear Diagnosis, It’s been a year.”
Blessed, Not Balanced
I am so blessed, but I also I believe it’s okay to say “it’s hard” and still be grateful and acknowledge that. I’ve learned a lot in less than a year since Colbie’s diagnosis. A lot about genetics, rare diseases, disabilities, therapies, neurology, insurance, etc. More than I ever thought I would need to. Honestly,Continue reading “Blessed, Not Balanced”
My Colbie Lies Over The Ocean
When Colbie was an infant all 6 of us would sing our own rendition of “My Bonnie Lies Over the Ocean” with Colbie’s name inserted. “Bring back, bring back, oh bring back my Colbie to me, to me…” It was simple and fun, but I can’t sing this song anymore without getting teary eyed. WhoContinue reading “My Colbie Lies Over The Ocean”
One(ish) in a Billion
The other day, another KIF1A mom and me texted back and forth about everything from the pathetic current condition of our hair to the fact that our children may never walk. These jumps in conversation are normal for us. For the past few months, we have shared so many concerns, reached out for random advice,Continue reading “One(ish) in a Billion”
Highs and Lows
Some days I feel sad. Really. really. sad. Sad that I can’t make everything better for Colbie. Sad that nobody can YET. Sad to keep hearing “we just don’t know much about this rare, awful disease.” Sad because of the unknown and the horrible possibilities that come along with this KIF1A (KAND) diagnosis and sadContinue reading “Highs and Lows”
Karaoke For Colbie
Whenever the song “I Love Me” by Meghan Trainor comes on, Colbie will start “dancing.” The first time she did this I almost cried. It was a simple head shake that some would’ve taken as her saying no, but we all knew it was her attempt at shaking her hips the way we do forContinue reading “Karaoke For Colbie”
Big Sisters
When we told the kids we were expecting, the girls screamed and cried tears of joy. When we told them the baby was a girl, they jumped up and down and shed more happy tears. It was of course, much harder telling them their baby sister had KAND. There were tears then too. But, IContinue reading “Big Sisters”
Super Colbie!
Anyone who knows Emerson knows what a loving heart he has, which makes him a very sweet and patient big brother who is always willing to help out. Colbie LOVES wrestling and playing with him so much and they really are adorable together! I often hear him making her giggle in the car and sheContinue reading “Super Colbie!”
Colbie’s Lullaby
We often joke that Colbie likes her big brother Dominic more than any of us, but she has a way of making each of us feel special. Either way there is no doubt that he adores her just as much. The other day, Dominic said to me, “Mom, I didn’t cry when you first toldContinue reading “Colbie’s Lullaby”
Care for Colbie 