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Celebrating the Journey of Inchstones instead of Milestones

Paul was diagnosed with a deletion of STXBP1 in the Fall of 2010. At that time we were told by the geneticist that he was one out of two children in the world to have STXBP1. I felt isolated and lonely. I started a FB page called Sir Sweetness Paul in 2011 in the hopes that others with STXBP1 would find us.

During that time I enjoyed reading blogs by parents of children who had disabilities. I came across an article by Rachel Zook in 2011 called, “Learning to Enjoy the Inchstones.” She talks about looking at a baby book of “milestones” that her daughter was supposed to reach and at what age. She finally got tired of looking at what her child couldn’t do, and decided to rejoice in the progression her daughter was making, no matter how slow. She coined the term, “inchstones.” That changed my paradigm of thinking as I watched Paul develop milestones behind schedule.

I decided to be his personal cheerleader and celebrate each inchstone he had! Paul started rolling at 13 months old, he clapped for the first time when he was three years old and he also said “momma” for the first time with intention, he sat unassisted for 5 minutes and started being able to feed himself his bottle when he was four years old. When he was five years old he learned to use his hands more and was able to hold and play with a stuffed animal. Currently, he is 7 years old and we use a device which is helping him learn to crawl. We mourn when he loses an inchstone, like saying “momma.” I hear it maybe twice a year for a few days then that skill is gone again. When it comes back we rejoice and do the “happy dance.” We never give up on him learning more inchstones or relearning the ones he has already mastered.

STXBP1 Disorders is introducing you to a person with STXBP1 each month, called the STXBP1 Squad. In part we started the Squad because no one needs to be alone on this journey. We all can cheer on the squad as they reach new inchstones. It’s all about the process and celebrating where your child is at now. Do you have any #stxbp1inchstones you’d like to share?

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