Kathleen shares her story about her families’ belief in a life with big possibilities and dreams - and not being defined by disability.
When Grace was born she was born with some issues, we didn’t know right away it took a few months. But for some reason my husband and I took on this belief that we were not going to be defined by whatever this was that was going on with Grace. And it was partly because at that time we had a three year old son and we just kept thinking like ok so we are going to have some serious issues going on with Grace we are going to have to give her lots of attention we get that. We understand, like we went to counseling and we understand we are going to constantly grieve the loss of her dreams or our dreams for her, etc. etc.
But we kept thinking we’ve got this three year old boy too, we can't just be focused on Grace. And we can’t define Ben by Grace. And I didn’t want to be defined by Grace. Like I saw myself having friends and connections and doing things that were unrelated to disability. So we really had this mindset that we can’t be defined by this disability. And I will tell you that it is profoundly hard to work against that because for my daughters condition there’s an organization out there, she has a neuromuscular condition so its MDA. So immediately, MDA gets involved right at the hospital, they want to be involved in your life and they want you to give money and all this other stuff, right?
And if you have someone who’s born with Down syndrome it’s the exact same thing, right? And I’m sure it is with autism and all of these groups. And I understand that all of these groups do really great work and some of them like the MDA fund a lot of important research for treatments and cures and all that stuff. So I am not down playing the importance of that, but what happens as a parent is you’re inundated from the get-go with ‘be a part of the disability community.’
And that was hard for us because we were thinking like ok, we are not this is not who we are, like we don’t define ourselves this way.
We had this belief in Grace from the get-go and I remember a doctor looking at me like I had four heads. And I told them all Grace is going to go to college and she’s going to do whatever she wants in life. We had these huge beliefs that Grace could do anything, in some ways it was bad because Grace isn’t going to college. And to have this mindset of that being what defines a successful life, is not good. If she doesn’t go to college that doesn’t mean she isn’t important or wonderful.
The good part of it is we just always had dreams for her. And we believed she could do a lot of things.
So we weren’t even in therapies and we love OTs, but you know you get to a point and you can’t applaud what accomplishment she just made, you immediately have to fix the next thing. But we wanted to be focused on the positive. And we would say often we don’t want to be the poster family for MDA, we don’t want to be the poster family for disability. And that’s how we lived our lives. And then after that, we found a school. And literally this school — I went in one day, they never looked at Grace in terms of disability. It just wasn’t an issue. Grace went in and she needed a walker at this time to go in. She went in with her walker and they did, I don’t want to call them interviews, but it was just to see if the child was ready to go to school at that point. And she went in with her walker and she did what most two and a half year olds do, which was cry like anything because their mom just left them and they’re in this room with all these kids they don’t know and never met before and these teachers.
They accepted her and I want to make sure I quote this correctly, but I remember going into school one day for these little teas that they do, it was a Montessori school, Mercy Montessori. And they invite you into a tea that your child does for you. I went in and we were sitting in this little circle in these teeny tiny chairs. And the kids are all on the floor. And Grace is on one side of me and another kid is on the other side of me. And the other child puts his or her (I don’t remember) hand on my leg and says “now she is going to need to use your leg to stand up so she’s just going to stand up that way.” I was like oh my gosh, like he didn’t say she can’t get up. What that little child said was this is how she does it.
And then I followed her to her work, which is what they call them at Montessori. And her partner said to me, it was a little boy. So you will see that I do it this way and Grace does it this way and we just both get it done. And it was amazing. Now one of the things that I did do is they asked me if I wanted to address the class, when Grace first joined and talk about Grace’s concerns or issues or anything. And I said no I don’t want to do that because then what everyone hears is that Grace can’t do this, or you need to help her with this and I just felt like everyone will figure it out.
Between the teachers and the students, they all figured it out. And it was just beautiful.
And we stumbled across that. We really did. We were just looking for Montessori setting because our OT said I think it would be good for her to be in a Montessori setting. So that’s all we were looking for and this is what we found and it was wonderful and it was in line with what we valued as a family, but we also failed.
So swimming upstream, we finally cave at one point. MDA said we’d really like to hear your family's perspective it’s a little different then a lot of our other families. And I thought well that’s fine we could do that because they’re letting us talk about our perspective. Well it was awful, and I had to cut it short because basically they wanted me to tell a sob story about our daughter in order to get money, right? And I hate it, I get it but I hate it. So the man came to our home and started to asking me these very specific questions that were to go down this sob story path. And I just had to say look we’re not going down that path. You either say what we want to say or we end it right here. So he let us say a few things and I think it was a very abbreviated I think film for what they were looking for. But we learned a really valuable lesson that you have to hold strong, you have to understand what other peoples’ values are, because even when you cave, maybe you cave into someone who really shares your values. But there are going to be lots of places where you feel like you’re going to cave and you do cave like we did, and their values are not our values and we didn’t get that. If we had gotten that, we probably wouldn’t have caved.
The other thing that I would say is, you know, as a family we do struggle. My husband worries about the finances, (I’m not crying I really have something in my throat) — I worry about the friendships, whose going to be in Grace’s life. We’ve taken Grace and Ben to several countries, multiple times. And Grace’s disability has never stopped us from doing anything. She’s had this amazing life and that helps move me upstream.
Where we are today is, we no longer have our dreams for Grace, we have Grace’s dreams for Grace.
Her dreams are to become an actress on Broadway. So we are not going to crush Grace’s dreams ever. She can try to do that as long as she wants. We will support her to the best of our ability to do that. Eventually she’ll figure out that, you know what, I just want to be in Cincinnati and if I can be in something related to theater and history I’ll be good. And I think she’ll come to that on her own. So we’re on this path now where she’s doing a lot of things around that.. She’s doing a one-woman show, that she and myself and some else has written, and she’s going to perform that hopefully in the spring. She’s doing this with an actress who actually was in the movie that’s just out with Robert Redford “The Old Man and the Gun” I think it’s called, and she works with Grace every week. Grace has invited her to go to some plays and she has gone to these plays with us. So this is a person who until Grace’s high school acting teacher gave me her name, she had no sense of anyone with a disability. But she understands what it is to be an African American woman in the theater. And so she knows how you can be marginalized that way.
We also - we support her to have people who know her.
So Grace today is in the church choir, she’s not in a special needs choir. She's probably not the best singer, in fact I’ve kind of thought she might be the worst singer until the other day and someone was a cantor and I though, yeah maybe not. She's working with Starfire to do a StoryCorps. So people are seeing Grace now as the person in the choir but also the person who is doing this StoryCorps thing. And when Grace is not at choir, people stop us on the way out of church, “Where’s Grace?” She’s missed when she’s not in choir. So those are really great ways of Grace being in the community.
So slowly but surely — Grace is in a valued role. And I think that’s all I wanted to say. That’s our family.