When our son was first born two days past his due date, at only 5 pounds, 1 ounce, we didn’t think much of it. We both come from long lines of people with short statures and petite frames. Then the weight gain just didn’t happen and the weekly height/weight check-ups came. And the specialists kicked in around 9 months, when his development also started to fall behind. Neurology, endocrinology, gastrointestinal, MRI, numerous urine collections and blood draws, you name it.
And every single test came back “normal” for 18 months.
With our yearly deductible well since met, we decided to get in with the geneticist for a last ditch effort for an answer to his struggles. Thankfully, we were able to get in and the doctor had an idea of what he might have. For the first time in 18 months, we thought there might finally be an answer. And there was, after 3 weeks of waiting. One week before Christmas, one month before his second birthday, we got the first of many answers since then.
Zachary has a rare genetic abnormality called Potocky-Lupski Syndrome. When we got the diagnosis, we were the only family in Minnesota with the diagnosis, but there’s an extensive network of other families we connected with through FaceBook. A shared blog where families shared their experiences was found and provided so much encouragement to my husband and I. We became educated as quickly as we could, so we could start to better advocate for our sweet boy.
He had started various therapies at age one and they added more and more as they saw need. He began to grow and develop new skills, slowly, but steadily and with lots of hard work by all. Now two and a half years since his diagnosis, he’s become a big brother and a fast-walking, music loving boy, whose speech is improving every week. Since then, we’ve added another child to our family, who is typically developing.
Now we need to learn how to support and advocate for her, and learn a whole new way of parenting. She’s been in our family 14 months now, and I’m still learning how to parent a typical child and a child with special needs equal, but differently. That’s just part of what makes me an Extra(Ordinary) Mom.
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Each person’s experience and perspective parenting a child with extra needs is unique. We know our children are special, but it can be hard to assert that we too are something special. It isn’t just about the “extra” things we do for the kids in our lives, it’s also about what makes each of us the people we are as individuals. Your experience and your story are worth sharing. Submit your (Extra)Ordinary Stories to ExtraMomsBlog@gmail.com.
(Extra)ordinary moms 