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 we can, 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. This weekend I was reminded of the fool’s errand it’s been.
Yesterday our 17-year-old, Tom, 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 sounds of the mower.
Once Tom finished his job, he looked around and realized that his father and sister were nowhere in sight.
That is when my son bound into the house screaming.
“Lizzy. Lizzy. Where are you? Lizzy.”
“Tom she’s not here. She’s outside with Dad.”
“No. No she is not. They are both gone.” He was now very upset and clearly panicked.
“Honey calm down. Dad probably just took her for a walk around the block.”
“Mom how do you know she didn’t get out on her own and he is 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. As if on cue the front door opened and Lizzy and Joe walked in happy as two clams.
After the crisis, such as it was, passed, I sat down with Tom and asked him why he would panic 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 off of our property and down the block. But we had always stopped her before she was able to get very far.
It’s also true that because of Lizzy’s very limited 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 get that far from our sight, why on earth did her brother think he needed to be so responsible for 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 rendered speechless. Is he insane? Calm? Calm? Me?!! 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 all even.
What about the 60 extra pounds I have 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, or worried over whether the brain damage that has been picked up on five MRIs but still has no name, will finally get a name and with that a prognosis that could be life-threatening?
Then there are the calls I have fielded through the years from teachers and professionals when her behaviors have been out of control or the visits to doctors to adjust her medications to help control those behaviors. How could my very intelligent son have missed all of this?
All of a sudden the answer flashed in my very thick head.
I have 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 have always done it through a filter. Me.
I realized that in my attempt to normalize our complicated life with Lizzy, I have been cutting Tom off from pieces of myself. In doing so, I haven’t stopped him from worrying about his sister, I have just given him the impression that I’m not worried about this perplexing and difficult situation. As he sees it, somebody should worry and he steps in. I have to give the kid credit for trying. If only the solution were that simple.
Aw, Kathy you constantly amaze me and seriously you are a wonderful woman and mom. Also, it sounds like Tom is an amazing young man and brother, too. I can only imagine how it hasn’t been easy for you with Lizzy over the years, but you always do your best to put your best face and feelings forward. Again, my hat is off to you and sending some more hugs to you today, too!! 🙂 <3
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Thanks so much sweet friend! xo
I so appreciate your response: calmly asking him “why” and letting him express this need to care “enough.” Such understanding on your part to know he needed to talk as much as you needed to listen. You’re a good mom.
I never knew this burden of yours until I read this, but your strength and resolve really does shine through those darker moments.
Susan thank you so much! xo
Kathy – Siblings of children with special needs have an inheritant love and bond with their brother or sister, and feel a deep sense of responsibility for them. I think Tom would have felt that way no matter how much you and Joe attempted to hide your fears about Lizzy. The other thing is, Tom and Peter may have been too young to fully understand what you and your husband were going through…Peter may still be too young, but Tom is now old enough for you to be perfectly honest with him. The bottom line is, you wanted to give your boys as much normalcy as possible, and there is nothing wrong with that. In fact, it only reaffirms what I have always felt about you,…that you are probably the world’s most amazing mother!
Lisa thank you! You make a great point about that fact that they were younger and that now that Tom is 17 he is more ready to know those sides of me. Love you Lisa! xoxo
Ha – I had to laugh at the part where he calls you calm and you think, “Are you insane?” You’ve obviously raised your kids tremendously well. You’re an amazing mom!
He really shocked me with that one!! Lol! Thank you so much! xo
Kathy I can so relate I have had to start explaining more to our 7 year old about her older brother because she is starting to notice the differences. There is no handbook on special needs parenting so you can only do your best.
You are a fabulous mom!
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You are an amazing mom too!!!! xo You are so right, there is no handbook on how to manage a family when one of the members has special needs. Thanks! xoxo
This is amazing. You are too.
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Thank you!!! xo
It’s difficult isn’t it. You don’t want to overwhelm, but you don’t want them to think you don’t care either.
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Yes it is a tough road to walk. I think if I had to do it again I would do it the same, I don’t think kids should have to deal with all of the darkness and fear. But I did wonder if I did too good of a job since Tom was still clearly stressed. If only I had gotten my Special Needs Parent Super Power manual!! Lol! xoxo
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First, I had no idea you had a special needs child. Second, kudos to you for handling this all so well and keeping your worries from your kids. I’m glad you were able to talk to your son about his feelings. It must a be a tough situation to navigate, but you seem to be handling it with grace. Hugs to you!
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Thanks so much Kristen! I’ts funny you say you didn’t know, I do walk the line to both write about our life as a special needs family but also make sure to write about us just as a family, so some people see me as a special needs blogger and some have never read those pieces and see me only as a parent blogger. Thanks so much for your support! xoxo
This is a very powerful post. Not having sibs for my special needs Kiddo, it’s not a struggle I have on my plate. Kuddos to you for expressing it so well.
One of my twins has very limited speech and his siblings always worry about where he is and try to do my job of taking care of him. It’s just automatic with them. I need to have a conversation with them as well. Thanks for this post.
I have twins as well (6 yrs old). One is severely disabled, but her brother has watched us over the years through therapies, etc. and was always included. Today, he won’t let her Out of his sight1- that bond is so tight. When he sees me stress of little things he calms me down!!!!
Wow, what a wonderful son. How lucky Lizzy is. She has a loving, kind, compassionate family. That will help her greatly in life. Really touching.
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Kathy, I think this is so interesting and a great post. Tucker doesn’t have any siblings at home (he has 1/2-sibs that are much much older) so I’ve never really had to have a conversation like this but I am starting to see more and more that he notices differences – both between him and typical kids and between him and kids who have more issues than he does. Poor Tom to have been so worried! You’re an awesome mom.