The other day, my daughter Lizzy and I were out to lunch with my parents. I was having so much fun watching her tell our favorite waitress what she wanted to order.
"That one," Lizzy proudly says as she points to the macaroni and cheese with hot dogs. This is the whole reason we're having lunch at Friendly's instead of someplace my parents and I would find a bit more appealing. My daughter loves their mac and cheese.
I coached Lizzy to use her words and not just point. Despite having to deal with many more tables, Maureen* waited so patiently for every word to come out of her 12-year-old mouth. Then she lavishly praised her for doing such a great job.
Once lunch was finished and Lizzy had just as much ice cream and hot fudge on her dress and face as she did in her stomach, Maureen came back to our table to bring the check and chat a bit.
Eating out can be a bit of a hassle for anyone with kids, but when you're the parent of a special needs child, restaurants can be particularly stressful. Maureen is also the mother of a child with special needs, and she's always been wonderful and supportive to me through the years we've been coming here.
My family has known her for so long that she was very excited to share with us that her daughter, Jane,* got engaged and would be getting married soon. My parents and I smiled and let her know how thrilled we were for her family when Maureen said something that literally took my breath away.
She said that Jane had always made it clear to her future husband that she came as a package. It meant so much to her that the man she was marrying understood and was OK with the fact that she would take care of her brother when her parents could no longer do it.
Maureen saw my reaction and the tears that fell down my cheek and smiled.
"Kathy, it's all good. It's what she wants and how she feels. You know your boys feel the same way about Lizzy. It's what's important to them."
I do know my boys feel the same way about their sister. Especially our oldest son, Tom, who has been telling my husband Joe and I that he would make sure he and Peter took care of Lizzy when we were gone ever since he was about 7.
I've always had mixed feelings about the devotion Tom has to his sister. Of course I think it's beautiful. But we've been very clear that Lizzy is our daughter and our responsibility. Though we are deeply touched by his desire to always be there for her, we have been so careful to never give him the message that he has to ever alter his life because Lizzy has special needs.
Yet despite this, I know that he feels differently. The idea that he would one day tell his future wife that if she wants a life with him, she'll have to accept the fact that his sister could one day be his, and their, responsibility, scares the hell out of me.
For me, it's one more reminder that we are not a typical family. Other parents talk about the day their chickens finally leave the nest, but I know in my heart that that day may never really come for us. At least not in the way I thought it would when Joe and I started our family.
I always describe myself as being a special needs mom, but in reality we are a special needs family. We have not had to tell our boys to feel responsible for Lizzy, they do that because they love her. I will do all in my power to make sure that our daughter is well cared for even after we are gone so that our boys never feel they have to help her. But it does warm my heart to know that they want to. As my friend Maureen said, it's all good.
*Names have been changed.
This piece has previously been published on http://mydishwasherspossessed.com/2014/08/wake-get-love-amen/