A few people have asked me if I’ve stopped blogging. The short answer is “no.” The long answer? I don’t have time. And when I do have a spare moment, I don’t have words.
I want to write. It’s my release. It’s my “thing.” I’m just having a hard time finding the words to describe life right now.
It’s hard. Everything is hard.
I guess you could say I’m stuck in neutral.
I want to move forward. I just can’t. I keep pressing the gas pedal but nothing happens. The only movement is outside my window. People, even friends, are passing me by.
At least that’s how it feels…
Don’t misunderstand me. This journey we’re on is an absolute blessing. But, I’m not going to sugarcoat things. Raising a child with Down syndrome is not easy. We live in a strange world of joy and isolation.
Almost 6 years old, our daughter, Willow, is full of spunk and personality. She’s fun and always up for an adventure. The downside is that requires almost constant supervision.
Willow thrives on attention. Good or bad. She also does not understand danger. Hence, the locks and alarms on every door of our house. I feel like I’m always on high alert. My nerves are shot. My body, exhausted.
I’m not complaining. I’m just explaining.
This is life, right now.
I know it will get better. As the saying goes, “it’s just a phase.” Almost every child goes through a stage like this. But, with Willow, it’s different. We don’t know when it’ll end. We also don’t know how to approach it. Her brain is different. There’s beauty in that, but also mystery. Telling her that it’s dangerous to run away doesn’t work. Disciplining her doesn’t necessarily work either. Remember what I said about her thriving on attention?
While I fill my brain with books and blogs written by parents who’ve traveled the road before me, I find myself struggling to focus on anything else. Of course, life doesn’t care that I’m stuck in neutral. Dinner still needs to be made, clothes still need to be washed, friendships need to be maintained and my other children need to know they’re not forgotten. I suppose I should mention my husband too. He can’t just be the guy who brings home the bacon.
Overwhelmed, our family started the process of applying for a disability waiver back in April. The waiver will allow us to get respite care as well as a GPS tracker for Willow to wear. We’re doing everything we can to ease my anxiety and keep Willow safe. We’re blessed to live in a state that offers help to the disabled and their families. Unfortunately, the government doesn’t always move quickly. It’s mid-July and we’re still waiting for the final stamp of approval.
Once again, I’m stuck in neutral. How I long to move forward.
I want to write.. I want to go places.. I want to make friends.. maintain friends.. talk to people. I just don’t know how right now. Our life is so different at the moment, I don’t know how to do “normal” things.
So “yes,” the blog is still up and running. Instead of a shower, I’m obviously writing this update today. But truth-be-told, this will likely be my last post for a few months. My attention is needed elsewhere.
As I mentioned earlier, raising a child with Down syndrome is not easy. It consumes you at times. But, honestly, I count myself blessed. We might be in a hard place right now, but the joy is not lost.
You can’t expect life to be easy when you’re raising a world changer.