I always tell people, love changes your situation. The kid may have whatever they have, but if you love that kid and you love yourself it gets to the point that it’s like, “Oh, I didn’t even know he has a condition!” You kind of forget about it.
Mother
Love them for who they are
At the end of the day, love your kid. Love them for who they are. Love them because they’re different. They’re special because they’re yours. You know, and that’s such a great thing. And like I tell people all the time: love makes things grow; love makes things change.
Mother
Challenge your child
I always challenge him every day. I say, “Come on Darius. We’re getting dressed. Are you going to help Mommy put one hand through?” He may put one hand through or not. But at least I asked him to do it. He doesn’t talk, but that doesn’t mean that I’m not going to talk to him. I talk to him and every day, and yeah, I expect an answer back. So, you have to just continue to challenge your kid and continue to expect more out of them. Never ever give up.
Mother
Parents are going to love their child no matter what. I think every family is different. Just do the therapy. Don’t fight over every little thing with your spouse because you are going to be tired. Ask a lot of questions. If you have other children don’t forget about them. It is really a hard balance, but you deal with it.
Mother
Engage your child
Don’t be afraid to take your kids out. Don’t let them sit at home. Take them out; engage them. Engage them whether it’s sitting in playground, whether he can get on the swing or not. Let kids come up and ask questions. Let them talk to your child. People always stare. Kids want to ask questions. Don’t be afraid to answer to answer questions. Introduce your child to others. If your child can talk, let them sit and talk because you never know what kind of friendships will develop out of that because you’ll develop that child’s personality.
Mother
You can never love a child too much
We celebrate Kayla every moment of the day. Some people call it spoiling, but I don’t think so. I don’t think you can ever love a child too much. What other people see as little milestones, we see as big, huge accomplishments, and we just celebrate everything she does. We’re proud of her and we tell her that. “You’re doing great.” And of course, she’s cognitively intact. She knows that there are children who can walk and talk and things like that, and I can see that she knows it in her eyes. So I say, “But you’ve done great. You’ve come so far, and you’re doing wonderfully, and Mommy is so proud of you.” I tell her every day that she’s my best girl in the world and I would never want her any other way.
Mother
Love your child for who they are. Don’t try to change things so that the world will like them. And be an advocate in a sense where the world will see your child for who your child is, and by the world, I mean their surroundings or wherever they are. Listen to your child. Ask them how they feel. I know some children can’t answer, but as a parent knows their child, they’ll always know what their child is feeling, whether they say it, or whether they can feel it, or whether they can see it in their eyes. A parent knows their child, so allow them to live life loving themselves and not trying to change themselves for other people.
Mother
Reach out to other families
When I see a family with a different type of wheelchair or some type of thing that my daughter can benefit from, I will ask where they got it from or how they got it, and that’s the main thing. Don’t hesitate to ask the other families where they got their resources from because resources are out there; they’re not going to come knocking at your door. You have to grab it, be proactive, and advocate to benefit your child.
Father
Nobody is perfect
Take the time out to just watch your child and study your child and be emotionally connected because you will learn, I think, so much from that; you’ll learn so much about what their body has given off. And be accepting of their faults. They have been diagnosed with something, so they are not perfect. They are going to be a lot less perfect than other kids. So nobody is perfect, but you can’t help your child until you’re accepting of the fact that something is wrong. So open your heart to it because you can’t get help until you do. You can’t accept and get help until you acknowledge that there is a problem.
Mother
Your life will be a struggle
Don’t give in. Follow your gut and just do not give in. Your life is going to be a struggle. You’re going to struggle for everything and you are going work very hard, but at the same time I think you’ll appreciate everything that you’ve worked so hard for.
Mother
As long as it helps you
People have even said to me, “Don’t take this the wrong way, but every time we think we have it bad or we’re having a bad day, I think of what you and your wife go through,” and they go, “I’m sorry.” And I go, “Does it help you make the right decision?” and they say, “Yeah.” “Then don’t be sad. Use it.” We have to live with what we have to live with. We deal with what we deal with. We can’t change it, but if it helps you, fine. Use it. You want a picture of us? You want him in the hospital bed? If that’s going to help you, so be it, as long as it helps you.
Father
Take it day by day
Cerebral palsy is different because at least we know what the damage is. The damage that has been done, that’s it. The only place you can go from there is getting better. People always ask us how we do what we do. Well, we’ve accepted it. The one thing we don’t do is look ahead. That’s one of the biggest things. If you look that far ahead, it’s depressing. Take it day by day. Take it week by week or as in the last two weeks for us, it’s minute by minute or hour by hour.
Father
Live for today
The more you look ahead, it’s very depressing. I’m sorry, but I don’t know how else to say it. When we’re gone, who’s going to take care of him? I can’t worry about that now or I’ll get ulcers. I try to prepare as best as I can. We’ve put things in place for that, but we can’t dwell on that. Live for today.
Father
Whatever challenges, gifts, and intelligence we have, we need to share it. Ryan certainly has shared his personality with us, but we also have to share whatever we bring to him. With me, it’s obviously my love, but also my advocacy for him through life to make sure he gets what he needs. I’m trying to foster that through my children, and I tell them all the time that “You’re family. You’re going to have to help each other when you get older.” Someone may fall on hard times in the family and I just want them to look out not only for him, but for each other.
Mother
Ride the wave
I think that CP, out of all the diagnoses, is not as bad as some of them. What is hard is you know you’re in this for the long haul. You know that things are going to get better, but you’re going be doing this for the rest of your life. So you’ve got to make the best of it. And the saying in our house is to “ride the wave.” Because when it’s good and things are good, you’re high. You know, you’re on top of the wave. Enjoy it. And when they’re bad and you’re drowning, you’ve got to come up at some point. Just ride the wave. It’s going to get better.
Mother
Chalking things up to illness
If you have a kid with some type of illness, you always chalk everything up to the illness and it may not be that way. She could be in a very foul mood because she’s 15 and that’s the way they are and not because she’s in pain or she has a brewing ear infection…
Mother
An eye opening experience
I remember when Katie was learning how to drive her powerchair at four years old. We were at the local mall and she was just spinning around in circles and had been doing it for a good five or ten minutes. And then we gave her the usual warning. “Alright Katie, we have things we have to accomplish today. I know that you enjoy spinning, but two more minutes and then we’re out of here.” Well, she continued to do it. What kid wouldn’t be defiant at that age? Especially a kid who all of a sudden has been given the ability to move. So we shut her powerchair off. She screamed bloody murder to the point where security came over. And some woman came up to my husband and told him that he was going go to hell and that you shouldn’t treat kids like that…It was just very eye opening because if Katie did not have cerebral palsy and had thrown herself on the floor and refused to move, any parent in that mall would have expected us to pick her up and get out of there. But because she’s in a wheelchair, they expect something totally different.
Mother
If we can do it, she can do it
Don’t give up. You know, just keep on going. I hate to use the word “fight” because I don’t think it’s a fight. I think you have to learn to advocate because I think whether you’re at the hospital or you’re dealing with school or whatever, it’s a team approach. You have to be a member of the team. You can’t be on the outside looking in because you don’t know when you’re going to need that person’s help again. Or how you may impact someone else…When Katie was little I may have seen someone talking to their child who was in a chair and looked similar to Katie and who knows? Maybe something clicked like, “Ok, we can do it.” And if we can do it, she can do it.
Mother
Everything will fall into place
The most important thing you can give your child is love. Period. Then the next most important thing to remember is that this is a CHILD not something broken that needs fixing. In the end, this is his reality and all that matters to this child is his immediate family and the love that is in it. The rest will fall into place regardless of what therapies or treatments the child gets or doesn’t.
Mother