When My Angel Meets a Milestone, I’m Grateful Despite Our Obstacles
A parent's perspective on Angelman syndrome achievements
I’ve been so focused on my 12-year-old Angel’s communication skills that a really big milestone snuck up on me. This Thanksgiving, as I reflect on the things that I’m grateful for, Juliana’s ability to get into the car independently will be among them.
A famous quote notes that, “Life is what happens to us while we are making other plans.” John Lennon even wrote these words in a tribute song to his son. There are many theories about the meaning of the quote, and some have a negative take on it. However, I think about the good occurrences that pop up as I’m working on something else.
While I have been busy helping Juliana advocate for herself and make choices, life happened. We haven’t purposely been practicing Juliana’s skills getting into the car. Climbing into the back seat just naturally evolved. A few weeks ago, I intended to help her into the car as usual. But before I realized it, she had climbed into the back seat and sat down as if she had been doing it all her life.
When Juliana outgrew her booster seat, I started to creatively help her maneuver her way into the back seat. At one point, I even used portable steps to help her navigate the tricky transition. I drive an SUV, and my husband drives a Jeep. Both cars require a large step up to get into them. Angels don’t have the best balance or motor skills, so it’s an endeavor that takes a lot of effort.
When Juliana was lighter, it wasn’t a big deal. But when she hit 50 pounds, I stopped lifting her and figured out a way to support her weight while she pulled herself up to take her seat. I knew this was the type of long-term adjustment we would need. When Juliana reached 70 pounds, my husband was still trying to lift her into the car. Injuring his back made him realize that this was no longer a smart move.
What’s the big deal?
A reader once asked me for suggestions to get her adult Angel into the car without hurting herself. Weight and abilities matter as a child with Angelman syndrome ages. Some may read Juliana’s accomplishment and miss the significance of getting into a car independently.
When my Angel meets a milestone, the challenges of Angelman syndrome get a tad bit easier. My quality of life depends on how I work with what I’ve been given. Juliana getting into the car without assistance is a huge deal for us. But I’m not just grateful for the big milestones. I count my blessings with the smaller wins, too.
Years ago, after attending an outdoor picnic with other Angelman families, I was in awe when I saw a teenager with Angelman syndrome get into the car by herself and put on her seatbelt. I remember wondering if Juliana would ever be able to do something like that.
Now she can.
Life is what happens while you’re living with Angelman syndrome. Even with the obstacles it brings, there is still plenty to be thankful for.
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