As Baby Tula, we get the wonderful opportunity to meet many families across the world with different stories on how our baby items become a precious resource in their homes. Through our journey, we met Vicky Martin, a mom of two young boys, Isaiah and Jacob. Her older son, Isaiah, was diagnosed with Osteogenesis Imperfecta, which is a genetic disorder that causes the bones to be fragile. We wanted to introduce our community to Vicky and have her share some thoughts on how parents can stay positive, in particular, if their child has special needs.
I’ve always been a positive person, but there are times that I let my worries take over. During those times, I step back and look toward at least one of these three ways to get back to my happy self again.
1. Find your community. Thanks to social media, it is easy to feel less alone with a rare condition.
My husband simply searched the words “Osteogenesis Imperfecta” on Facebook right after we heard those words from our high risk doctor for the first time; we were connected to groups of parents of kids with OI and adults with OI almost instantly. We went from knowing no one to knowing hundreds of people affected by OI. Thanks to the hashtag #OsteogenesisImperfecta, I have connected to quite a few members of the OI community as well. I have made life-long friends not only for my son so he doesn’t feel alone with his condition, but I’ve also made life-long friends for myself. We lift each other up, offer advice, and just chat.
2. Remember that your child is more than the condition that s/he has.
We raise Isaiah with the mentality that he has OI, but OI does not have him. He is still a little boy. He goes to preschool and loves everything musical. One of his favorite things to do is read, and if he falls in love with a book, he’ll memorize it so he can read it independently. He loves to watch sing along videos and pretend to cook us hot dogs on his little plastic barbecue. He loves to shop, specifically at Target, but he may have gotten that from his mama…ha. He’s the best big brother his 8-month-old brother Jacob could have ever asked for, he always wants to hold his hands and loves to make him laugh. OI is just one part of his life, just sometimes it plays a bigger role in his day than others.
3. Find time for yourself.
This is true whether you’r parent to a child with special needs parent or not. It’s very easy for me to lose myself in my kids. I am constantly working to make sure they are safe, happy, fed, loved, etc… that I often completely neglect myself. Finding time for yourself is crucial. It’s not always easy, but I am slowly learning to trust others to care for Isaiah and his brother.
I have learned so much since becoming a mom, far more than I ever expected thanks to OI.
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