Q&A: What's the hardest part about having a disabled family member?

I think the freedom, I was thinking of that last night. My husband and I used to take off, and take trips a lot, but it’s kind of limits us now. Although Sean’s more independent, we couldn’t be gone for as long a period as we used to because he might need something, or, you know, there’s just certain things he can’t do without help.

It’s the loss the mother feels and seeing a child suffer. You all want the best for your children. To see some of the loss, and it’s a harder life. To see him tired, he’s physically tired from breaking down his wheelchair, and dragging two-thirds of his body around. He’s not the same high-energy that he had two years ago.

When he was in his wheelchair? Accessibility. Over here, there’s a restaurant that, I won’t name the name, we couldn’t get through the doors in his wheelchair, and they would not make any accommodations for us. And it was when he was still in patient. And it’s hard, especially when your family member feels singled out. Then they feel like, “well, I’ve ruined everybody’s day.”  “I’ve ruined dinner, or I’ve ruined lunch.” Or they feel like everybody is staring at them. When he was waiting for his actual wheelchair, for his permanent chair, he was in a loner chair. So, it was bigger, and it was modified. So, I would stand to feed him because he didn’t have use of his arms, and he would be like, “sit down!” I’m like, “but I can’t, you’re tall.” And he was like, “they’re staring at me.” I’m like, “let them stare. You know what, just let them stare. That’s them, you’ re amazing. Let them stare. I don’t care, you shouldn’t care either.” You know, and the boys would be like, “dad, don’t worry about them. If they have a staring problem, I’ll go tell them, ‘don’t stare at my dad.’” I’m like, no, don’t tell them not to stare at your dad.”  You know, we feel like you’re on defense all the time, and I will defend that man till the day I die.

I think it’s difficult when we go in public and other people look at us as though we’re really different. And, I never thought that and I don’t think that. I don’t want other people to look at my dad in a wheelchair and think that we have such a difficult life. And, it’s just such a barrier for us because it’s not a barrier. We go out; we don’t just sit at home introverted, so I don’t want people to view us that way. I can sometimes just tell by looks—some people kind of look away, or stare a little too long, or try to hold the door. It’s a little uncomfortable because my dad can open a door—I know it’s polite to do that, but he can open a door and he can get himself to a table at a restaurant. So, I don’t want them to think that just cause he’s in a wheelchair he can’t do what everyone else can do, because that’s just not true.

I think that your life is different, and even if you take a vacation, you never really take a vacation.  I think that you still worry because there are all these little things.  My biggest worry is that if something ever happens, I just want to make sure that Patrick is taken care of.  So, there’s always that little thing in the back of your mind that never quite leaves you.  

Hardest part, I think, is traveling as a family, truthfully.  Not every place is accessible, they may tell you they are, but they’re not.  We found that to be very difficult.  We tried a cruise, which—the cruise part was wonderful—but, getting there and getting home was very difficult.  So that’s the hard part.

Listening to my sweetheart come down on herself is the hardest thing. I can't tolerate the fact that she can be so hard on herself. I'm not suffering that injury, but I'm watching her grow stronger every day. And for her to come down on herself, and not understand that she is getting stronger and better—I, it's just, it hurts, it kills me. And I think any other family member that sees that would feel the same thing. She's, she's got a disability, she's paralyzed, it hasn't made her a bad person, it hasn't made her a terrible person, it hasn't made her an ugly person. She's my same wife, only she has wheels. It's very easy to look at her and go, "I see what I see and I love you. Why can't you love yourself?"

The hardest part is working around my husband's schedule, and making sure that we're communicating our needs to our family and friends. They want to accommodate us, they want my husband there. They want to accommodate us; they want us at family events. And so, if it's an Easter dinner, "what time would be best for you?"—"what can we do to make it better so that we can all celebrate together?"

I will say that one of the hardest things, and I went through a phase as well, is that because her hands are very rough and they don't work, that sometimes when she touches you, it's not very comforting, which is a horrible thing, you know. And you kind of want to go like, "that," but, of course, you don't want to go like, "that," but sometimes you can't help it.

The hardest part is being that person that tries to stay positive all the time. And sometimes, you just can’t be positive, and sometimes you have to be realistic with the situation as well, and I think that’s my struggle.

I think the hardest part about having a disabled family member today for me I would say is managing expectations. It is really difficult to explain to people, or not really have to explain, but for people to understand that it might take a little bit longer for him to do things. We might be late a little more often and that he might not be able to make it to things sometimes because of secondary issues. And just to be understanding that there’s some things that come along with this that they might not know of or understand. But just to be patient with that, and just to not make that person feel bad for those things that they have to deal with that you might not know about. 

The hardest thing for me is that I don't want people to view him differently, and I know that people do. And, when we are together, when we go places together, I get angry when I feel that people are looking at him differently. It doesn't bother me if people stare a little bit or wonder, but it makes me angry when I feel that people are looking at him in a different way. We've been in crowded places before where people who can't get by will just push his wheelchair out of the way without asking him, and that has been the hardest thing for me is to see the public's reaction to him.

The event planning. You know, I mean, we were always, we had a lot of together family things. You know, now, because of the circumstances, a lot of those things are either, you know, greatly shortened, or, limited to what we can all do together. And, I think that's hard. But, you don't, you don't want to exclude, you want something that everyone could be accommodated for, and it's not always easy.

That hardest part is when new people come around.  Sometimes our children may not feel like rehashing the disability, injury, how it came about, and the highs and the lows.  They might not feel like that.  They just want to be accepted, and often times, new people really want to know, “What happened?  How did you get that way?”  I think that’s the hardest part, to have to navigate that.  We just moved, and I’m kind of having to navigate the neighbors asking, “What happened?”  My son doesn’t really want re-live that.  He wants to put it behind him and say, “I’m in a chair now, that’s how you meet me today.  I’m here in this chair, so that’s how you accept me.  Don’t worry about what happened.  Just take me now, or not.”  I think that’s the hardest part, new people.