Living with Paralysis and Four Kids by Bill Cawley

Living with Paralysis and Four Kids by Bill Cawley

Posted by Community Admin on Feb 24, 2016 9:20 am

I am the lucky and proud father of 4 awesome kids: Liza Jane 12, Lincoln Jix 11, Mary Kate 10, and Hugh Douglas, 6.  I am also a C6-C7 quad after a diving accident 24 years ago down on the Jersey Shore.  I use a manual wheelchair and am fortunate to have enough dexterity in my hands to live independently.  My hands are pretty impaired, but I can dress myself for example.
My wife and I met and got married well after I got hurt.  We started having kids right away.  I think all new dads are worried about being a good parent. My situation elevated that fear to a whole new level. I knew this going in, but when you have your first child in your arms, it becomes so much more real. I wanted to be a regular dad and do all the same things others dads do.  I didn’t want my kids constantly saying:  “no we didn’t do this or that because my daddy is in a wheelchair.”  I didn’t want them missing out on stuff because I was in a chair.  I knew I would work hard to avoid them feeling that way, but I had sort of accepted that if I couldn’t do something with them then it didn’t count.  That I wasn’t a regular dad.   

However, my understanding of what a regular dad is started to change when I stopped thinking about what I thought my kids wanted, and started to listen to and see what they acutally wanted from me. I started to notice when they asked me to do stuff with them.  

They wanted me to read them a story.  If they wanted to do a puzzle, they would grab one and, instead of doing it on the carpet, they would climb up on my lap and spread it out on the kitchen table so I could do it with them.  When we went outside, they would play on the driveway instead of the grass.  

 It all came together for me one day when we were at the Jersey Shore.  We were at the beach and my two oldest children, who were then probably five and three years old, were building a sandcastle.  In all honesty, it was just piles of wet and dry sand all mashed together.  I was out in the sand but couldn’t help them build it, but they didn’t care.  They were telling me where the drawbridge was, where the knights and princess were, about the horses and farm animals, etc.  They just wanted me there to share the experience with them.  It didn’t matter if I built it.  It only mattered that I was there to enjoy it with them.

They won’t remember if you built the castle, if they sat on your shoulders at a parade, if you rolled down a hill with them at a park, or if you laid down with them when you put them to sleep.  If you are there, they will remember you were at the beach, the parade, and the park and that you put them to bed.  What they will remember is that you were there with them.  A real dad is there, encouraging, supporting, laughing, teasing, pushing them, and comforting them whether you are in a wheelchair or not.

Bill Cawley
Manager, Peer & Family Support Program

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Re: Living with Paralysis and Four Kids by Bill Cawley

Posted by rookie992 on Feb 24, 2016 2:35 pm

I enjoyed your article on being a dad to your four children. I am a C5/C6 quadriplegic raising my three grandchild (ages 12-14). My grandson plays basketball, football, Xbox, and he is involved with other activities in our community. The two grand-daughters enjoy cheerleading and they are involved in their acting classes at school. They let me know their schedules and I am there for support for each of them. To tell you the truth, I don't know who gets more out of it. I think I do.

Edward L Ebron

Re: Living with Paralysis and Four Kids by Bill Cawley

Posted by rookie992 on Feb 24, 2016 2:42 pm

I meet to write grandchildren in the first line of the second sentence. Sorry about that.
Edward L Ebron

Re: Living with Paralysis and Four Kids by Bill Cawley

Posted by Bill on Feb 29, 2016 3:42 pm

Hey Ed,

I know you are enjoying the grand kids activities and get so much out of them.  I have no doubt they are getting as much or more from you being there..................

Thanks for sharing

Enjoy all  those activities and take care,

Re: Living with Paralysis and Four Kids by Bill Cawley

Posted by Dan Gottlieb on Apr 13, 2016 3:48 pm

hi Bill,

Dan Gottlieb here. My story is very similar to yours in that our bottom lines are the same, but the path differs. Unfortunately my little girls were 5 and 6 years old when I became a quadriplegic. So they experienced the trauma of losing the father they had before. Making matters worse, back then rehab was 6 months. So I was out of the house for quite a long time.

Nevertheless, my emotions were similar to yours. I felt terrible guilt about what I couldn't do with them and I felt grief about what I couldn't do for them. For decades I thought about the volleyball games and teaching them to ride bicycles and drive (to be honest, I'm kind of glad I couldn't teach them to drive. It would've scared the hell out of both of us!)

And then when Debbie was about 35, we had a heart-to-heart talk. I cried bitterly as I told her about how I had felt all this remorse for all of these years.and then it was Debbie that cried. She told me she cried knowing that I carried this pain for so long. She said I was better than all of her friends fathers because I could sit there with them and listen. And read stories and help with puzzles in the same way your kids helped you Bill.

She thanked me for something I hadn't even thought about. She thanked me for letting her help with my life . Wheen she opened doors for me or opened a straw or even helped zipper my coat, she felt so good that she was able to help her daddy. All these decades later, I can see how that informed her life. So much of her life now is about helping people when they have difficulties.

I haven't even talked about my older daughter Ali. But although she is not one to talk about feelings and her inner life, she has devoted her professional life to caring for animals and trying to change the world so that they can survive all of those thoughtless humans!

talk about hidden benefits.

Re: Living with Paralysis and Four Kids by Bill Cawley

Posted by Aaliyah on Sep 26, 2017 6:29 am

I am sad to hear about your problem. I can just hope that God help your family. Will surely remember you in my prayers.
Rehabilitation Center 

Re: Living with Paralysis and Four Kids by Bill Cawley

Posted by KMGross on Sep 10, 2018 1:57 pm

My situation is similar. I have three boys, all post injury. I have had some of the same worries/regrets Dan expressed. I cannot throw the ball with the kids or do some of the things others do but I try to be present for them. I do not miss a game or school function, I set aside time for each of them to talk about what they are up to. Sometimes I just get "everything is fine" or I learn more about Fortenite than I want to but sometimes they engage.

Re: Living with Paralysis and Four Kids by Bill Cawley

Posted by Dan Gottlieb on Sep 10, 2018 3:13 pm

you have a wonderful opportunity to teach your sons what it really means to be a man. Years ago I gave a talk at grand rounds at one of the teaching hospitals near Philadelphia. I sat in the back of the lecture hall just listening before I went on stage. About 10 rows in front of me, a urologist raised his hand and said: "how do I tell my patients that they are now half a man". That's the mentality too many men grow up with. If being a man mean strong, then consider this: strength is not about physical power, strength is to be comfortable with your weakness, vulnerability and dependency. To go past the shame and insecurity and live life fully.

Let's teach our sons and grandsons that being a man means being patient and devoted. That being a man means loving with open arms and an open heart. Being a man is having the courage to say: "please help me" when you need it. Most important, you can teach them that regardless of your body, you have the ability to be happy and make the world a better place by helping others.

I think back to that urologist often. Of course I was angry at him first. But now I feel mostly sadness because if he feels most of his manhood is in his penis, he will never feel that he is good enough. I wish for youand your family great happiness


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