“I don’t want to live until I’m 100.” One said.
“Oh, me either.” Replied another. Both shared their own beliefs for saying so.
I found myself bristling. Actually jealous. And how silly of me. Who gets to choose how long they live? But what I found myself upset about was how they could take this longevity for granted. I have a child, that even as independent as he becomes, will always be vulnerable. Always.
Who will look after him when I’m gone? Katherine and Elizabeth have already volunteered, but I’d like them to have their own independent lives as long as possible. To grow into their own adult lives without the concern of caring for their brother until they are much older.
I thought deeper on my internal reaction. If I had said something out loud, they would have apologized profusely. It would have turned the light-hearted conversation into something deeper. They would have been “educated” but would have felt “bad.” These were not people who needed to be educated. They understand Wil and love him. But they aren’t living this daily life like I am. There is a time for educating, and there is a time for not educating.
There is absolutely a lack of awareness in what we do as parents of our kids. All of the extra work involved, the daily aspects of life we must consider, and the future aspects of life. Sometimes we just get tired. Tired of explaining; tired of people not understanding. Not because they are bad people, they simply don’t know. With all of this within us, it’s easy to get angry when people simply don’t know.
I have worked with many “new” people who don’t have the knowledge I do, but they put themselves in the crosshairs of tired parents to learn. Rather than beating them down for not knowing, I am grateful they chose a profession of helping.
When Wil was in preschool, his speech therapist didn’t have much experience with Down syndrome as just previous to Wil entering school the kids with special needs went to Chelsea as they had a developed program. I could have gotten frustrated with their lack of knowledge, but instead we watched the videos together, and learned together, and I’m very grateful to say this speech therapist and I have a very strong bond, and she works with Wil in high school now. The colloaboration and learning together, has been a huge asset in Wil’s life and in his success to this point.
Even when you are challenging a boundary, have respect where another person’s ideas are coming from; ask questions rather push your agenda. Find ways to collaborate. Certainly there are those out there that don’t care. Or even worse, those that pretend to care, say what you want to hear, then go do their own thing. It makes my stomach drop.
But as Mr. Rogers said, look for the helpers. I could have wasted my time beating this person down, and those fights are necessary, but I have found focusing on the helpers is what gets Wil what he needs. I put my focus on collaborating with them. Growing my relationships with them. Showing my gratitude for them. And through all the bumps, the helpers have stuck by Wil and my sides.
We all have things we fight for. But some fights aren’t worth the energy. I’d rather choose my moments to decide when bringing up certain things are just for a fight, or are they truly worth making the change.
No one knows enough to know everything. You or anyone else. I have just as much a duty of being open as anyone else. I’m not more “right” because Wil has Ds. And just as much of a duty to listen and understand where others are coming from instead of always pushing my agenda. But I do have a duty, like any other mom, to raise Wil the best I can. And I would love for him to be a helper, by being a collaborator and realizing he doesn’t stand on a special pedastal just because he has Ds. He stands there because he was a good person.
I hope to live to 100 to see it.