Shielding Them From the Dark
As the parents of a daughter with significant special needs, my husband and I have always tried to shield our two sons from some of the darker realities of Lizzy’s issues.
Still, we remain as open as possible so they can feel close and connected with her and her care.
If that sounds as if it might be impossible to accomplish, it is.
Four years ago, I realized what a fool’s errand it was.
Our oldest, Tom, was 17, and was mowing the lawn. Joe and Lizzy were also in the backyard, and at some point they decided to take a walk around the block.
Although Joe told Tom what they were doing, he must not have heard him over the lawn mower’s engine.
Once Tom finished his job, he looked around and saw his father and sister nowhere in sight.
He bound into the house screaming.“Lizzy. Lizzy. Where are you? Lizzy.”
“Tom, she’s not here. She’s outside with Dad.”He panicked. “No. No she isn’t They’re gone.”
“Honey calm down. Dad probably just went for a walk with her around the block.”
“Mom how do you know she didn’t get out on her own, and he’s out looking for her?”
“Because I have been married to your father for 23 years. Trust me, if there was a problem, he would have gotten me.”
We both started to laugh.
On cue, the front door opened and Lizzy and Joe walked in happy as clams.
After the crisis passed, I sat down with Tom and asked him why he would panic so much over his sister’s whereabouts.
There have been a few times where Lizzy did try to make a break for it, thinking it might be fun to cross the street and join the neighbor’s pool party or follow a butterfly down the block. But we had always stopped her before she was able to get far.
It’s also true that because of Lizzy’s inconsistent speech and penchant for being in her own world, I don’t really want to think about what would happen if she ever did stray from our house.
It’s because of these very real fears that we have alarms on our doors and windows. We also have a fenced-in backyard and locks on those gates.
With everything my husband and I have done to ensure our daughter’s safety, as well as never really letting her out of our sight, why on earth did her brother think he needed to be so protective of her?
I really wanted Tom to explain this to me.“I’m sorry mom. I know you and dad take really good care of her. But I worry so much about her. I don’t know how you stay so calm all the time.
Why don’t you ever worry about her?
How do you do it?”
I looked at him and was speechless.
Was he insane?
Didn’t he realize that I have not had a peaceful night’s sleep in years because I spend most of them worrying about my daughter.
On nights I’m not worried about her, I worry about him and his younger brother, just to keep it even.
What about the 60 extra pounds I had been walking around with for the last eight years?
What about the weeks Joe and I have spent panicked over her latest blood test results?
What about all my worries that her disorder will begin an irreversible, or fatal, decline?
There are the calls I’ve fielded through the years from teachers and professionals when her behaviors have been out of control.
Then there are the doctors’ visits to adjust her medications and control those behaviors.
How could my son miss all of this?
The answer flashed in my very thick head…
I’ve gone out of my way to hide my darker feelings and panic from both of our boys.
We have given them the facts about their sister’s issues and always let them in on the important information that has come our way about her.
But I’d always done it through a filter: Me.
In my attempt to normalize our complicated life with Lizzy, I cut Tom off from pieces of myself. In doing so, I hadn’t stopped him from worrying about his sister, I just gave him the impression that I’m not worried about this perplexing and difficult situation.
From that day on, I started being a little more open about my feelings.
By doing so, both Tom and Peter started feeling a little more comfortable expressing their feelings about Lizzy. Especially when she is annoying them like all sisters are required to do.
Written by, Kathy Radigan
Kathy Radigan is a writer, blogger, mom to three, wife to one, and the owner of a possessed appliance. She is the creator of the blog, My Dishwasher’s Possessed! Kathy’s work has been featured in HuffPost, Scary Mommy, Her View from Home, Yahoo, Thought Catalog, Grown and Flown, TODAY Parents, Romper, and many other online publications. Her new project is sharing her experience as a parent to a daughter with special needs on The Special Needs Nest on Facebook.
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