What's Your Disability?

There was a moment when Beatrix was just a few days old and in the NICU that I distinctly remember. I was filling out insurance forms, and I paused on a question. I turned to Joel and asked, "Is Beatrix disabled?"

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It seems pretty silly now, but it hadn't occurred to me up until that point that just by her diagnosis with Down syndrome, alone, it meant that she was disabled. I looked at my newborn, and she was just like any newborn, unable to hold her head or roll over. But, she could cry to let us know she had a need to be met, and she could make sweet little baby faces. She had a great ability to grab hold of that OG tube in her mouth that she hated and rip it out, on multiple occasions. Still, to the insurance company, the state and the doctors, she would not spend one day of her life without the label of "disability."

When I was pregnant, Joel and I had hoped for a time that by some miracle, she would be born and not have Down syndrome, like the tests showed. When it sank in that the diagnosis was real, our hopes changed to, "maybe it won't affect her." Call it ignorance or denial, but when Beatrix was born we we're ready to take a "wait and see" approach to her Down syndrome.

We learned, though, that her Down syndrome does affect her. Even in the NICU, the disability was tangible. You could hold her and feel her low muscle tone. While most infants retain some of the fetal position stance after birth, her arms and legs splayed out wide in her crib. She struggled to maintain her oxygen levels and had an oxygen tube for a while. And she was born with duodenal atresia and hypothyroidism, which are common in children with DS. As she has grown, she has met milestones later than most. She gets multiple therapies a week to help her progress at what comes easily to typically developing babies.

I'm still not convinced, though, that as a parent I should take her Down syndrome as a foregone conclusion.

Down syndrome doesn't mean that she 100 percent CAN'Tor WON'T. Beatrix came home from the NICU at 1 month old and less than a week later learned to roll over, much earlier than most babies who do not have a disability. I can show you tons of examples of people who are born with disabilities who accomplish amazing things, to become athletes, business owners, philanthropists, artists, wives and mothers. I read just last night about a doctor who has a form of mosaic Down syndrome. His parents we're told at birth about many things he would likely not accomplish.

I have spent a lot of time in the last year thinking about disability. Before Beatrix, I don't think I thought much about it at all.

A couple months after Beatrix was born, my two eldest children started speech therapy. Rhys was having trouble being understood in his preschool classroom, and Isabell was falling behind in learning to read and write, because of how she incorrectly pronounced some words. I found myself again filling out forms about my children's disabilities, even my "perfectly abled" children. I often look for meaning in the occurrences of my life; this time, I think God was telling me to put things in perspective.

I started to think about how anybody can have a disability. Don't we all have inherent parts of our personalities that we struggle with? I also started to wonder how much it all matters. I have every confidence that Isabell and Rhys will overcome their disabilities to learn to speak well and read well. Shouldn't I feel the same way about Beatrix's disabilities? I have every confidence that she will learn how to walk and run, and speak and read. She can and will discover all sorts of abilities that are unique to her and make up the person she is to be. A book that I read when I was pregnant with Beatrix highlighted story after story about children with Down syndrome who had special abilities to read people's personalities and relate to them on a deeper level than most could. One little girl in the book was able to make a breakthrough with her little friend who has Autism and who had never interacted with another child before soon the two we're off, running and playing together. It makes me wonder what kinds of abilities Beatrix will have.

While it's important that we are aware of disabilities so that we can get the help needed to overcome them, I also think we need to focus on abilities, too. My team at work spends time on personal development where we have identified each of our personal strengths. We discuss the unique ways that we work best and how these traits support the work we do. I love this idea of focusing on our talents and honing our special abilities, rather than always trying to overcome our weaknesses. I know that my desk and my house always get messy, and I struggle to be organized and keep things in order. This disability is something that I need to work on. I employ different methods at work to keep track of my deadlines and deliverables. And, at home I have enlisted the help of our niece and our nanny to keep things clean. I could probably spend a significant amount of time battling this weakness, and maybe, just maybe, I could overcome it to become neat and tidy. Yet, I would still be that same messy person on the inside.

So let's address the disability, but let's FOCUS on the abilities. That's what these many accomplished people with disabilities have done. Whether it's turning your special hugs into your own signature brand for your restaurant, or you can make warm blankets filled with love for sick kids in the hospital, or you have a beautiful eye to see an interesting perspective on nature, or you're a tough-as-nails Mixed Martial Arts fighter. We all have gifts to share with the world. We just need to find them and cultivate them.

Posted in Health and Medical Post Date 06/07/2020


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