For parents of SCI kids

[carbar]

I often think that being the parent of a kid with paralysis must be far more heartbreaking than actually being SCI oneself. I wonder if a Mum or Dad ever truly accepts the situation. No matter how much pride and joy your child brings you, do you always have the deeper feeling of 'if only' and all the other possibilites that might have been?
I am putting a poll out just to see how many parents come to the site, what age their child was when injured and how (illness/accident), but of course comments on any of this would also be very welcome.
I had my accident when I was 44 - still a child in the sense that my parents were still alive. My Mum though was in an institution with Alzheimer's so she knew nothing of it, and my Dad died 4 months after my accident. I only spoke to him on the phone from hospital & rehab (he lived in Canada) but I know he was deeply hurt and confused by my news. I don't think it contributed to his death, but I know it gave him so much more to worry about and a regret that he couldn't be with me.

[BeeBee]

My son was 17, 2 weeks away from his senior year of high school. It is almost 2 years past, now. I'm not over it at all and I don't know if I ever will be. THere have been successes in his life, since. Some made sweeter by overcoming the SCI to do it (graduating with his class, for example), but he still didn't play football, can run and get the mail, bound up the stairs to his girlfriend's dorm room.
Oh hell, now I'm crying again.

[Shannon]

I often think that being the parent of a kid with paralysis must be far more heartbreaking than actually being SCI oneself.

I often think that as well. Last year my daughter was the age I was when I was injured. I don't know how my parents handled what happened to me. I know my dad lives with a ton of guilt because he was wearing a seatbelt, but us kids weren't. I'm not sure about my mom, but I know my dad has been torn to pieces about the accident, even now, nearly 28 years later.

My grandfather never came to see me in the hospital after the accident. He couldn't bring himself to do it. Prior to the accident, I was Grandpa's Little Girl. One time I got a day pass type of thing from the hospital and so my parents took me to my grandparents house. My grandpa took one look at me and cried out. I can't remember what it was he said, but it was something like, "Why God?". Then he just sat in his chair and cried and cried. Never even got out of his recliner. He lived for a few years after that, but he was filled with so much sadness whenever I was around.

[Robynbird569]

My daughter was 3 years of age at the time of her accident due to a gun shot wound. You wonder if mom or dad ever truly accept the situation, I never gave it a thought. All I knew what had to be done when I heard the dreaded news was to help her both physically and most of all mentally to get her through her life. I knew that my life and esp. her life was taking a much different route and me being a blubbering idiot or whining about how she was compared to now was not going to do any of us any good, esp. her.
Oh yes, there were times, mostly in the beginning, I use to wonder the "what ifs". Like what if I stopped her from sneaking downstairs to her brothers room and made her take her nap like it was intended. But then I think, what if I lost her, and that is the most devastating thing I would have ever had to deal with, if I would have made it.
Everyone is different and everyone handles things differently. I made a vow that my daughter would never ever see me cry because she cant walk. I feel that if she does she will think that something is wrong with her. Yes she knows that she cant walk, but to her thats "ok". I told her and showed her that her legs don't make her.
In my mind, I felt I had to be strong so she can be strong. Strength, both mentally and physically is what is going to get her through life.

[carbar]

Thanks BeeBee, Shannon and Robynbird for your comments.
Lots of different reasons brought me to set up this poll. I have no kids so am a complete outsider from that perspective. Over time here at CC I have read threads by others that got me thinking about this, and more recently through another site that I initiated I have begun to hear from parents and family of SCIs who are so very keen to find a cure for their kids. I find this side of the whole SCI nightmare very interesting because sometimes as a SCI one gets so wrapped up in the details of what you are going through yourself, what you have lost, what you have to deal with, that it is not always evident that family, and in particular parents, have to deal with an enormous amount too. The emotional toll on parents must be staggering.
I hope others will take part in the poll, and comment.

[Cripply]

My mom is devastated beyond recognition. Of course I prefer having SCI rather than my kids. My mother keeps repeating she should have had the SCI.

[Auntie]

I voted for my sister. Her daughter is/was at the time of her accident. She fell off of her horse barrel racing. I know my sister would give her own life just to let her daughter walk again. She so much wishes it was her dealing with SCI than her baby.

I think one of the biggest differences in dealing with your own SCI vs your childs is the determination to do everything possible for their recovery. I think you accept their injury but you always feel like you need to do more and turn over every stone. For my sister she feels so incrdeibly helpless that she is going the extra mile with the things she can. Not sure if that makes sense......

I think when it happens to your child you grieve twice, once for you and even more for them. There is no greater pain than the pain your child experiences.

[darkeyed_daisy]

Until my daughter got older, I never thought about what my mom went through when I had my accident. I keep trying to picture if I were in her shoes.....
The night I wrecked I had lain in the road all night long before someone found me. My mom was pulling out of her work (she worked 11:30-7:30 third shift) and she saw my wrecked car come by on a flat bed truck. I can only imagine her frantic ride home to discover it was indeed my car on the truck as the police was waiting in her driveway to tell her to go to the ER that I had been in a wreck.

I can't imagine and hope I never have go through what my parents went through while I was in the hospital and rehab. I really do appreciate all they have done for me though because I probably wouldnt be where I am today without them. As any parent would say I would rather be hurt again than to see my daughter be put through the pain and agony of this injury.

Robyn you must be so strong.......You are amazing. You are exactly right about strength and determination....

We cant live in the what ifs though.......I can only imagine the what if I had bled to death on that road and missed watching my daughter grow up. I can't live that way......I have to think there is some reason I was left here.

I guess as a parent you do all you have to do whatever it may be to help your child.....I guess none of us plan the what ifs that happen. I know my mom sure stepped up when I was having my pity parties and let me have it. I guess that is what makes me as strong as I am.

[lway2002]

ooooppps

[Mombo]

It's been 2 yrs. since my son (22) was hurt. I will never accept this! I/we are learning to cope with the heartache. As a parent, the "What if's" never end - it constantly runs thru my mind. I have met several couples who have children with SCI's and all of us came very close to divorce. At first, it brings you closer then the grief just tears you apart. I would like to know how many other parents have divorced or came close to it. It is so sad what this injury can do to a family. We have to hang in there and never give up hope!

[NJenn]

I really admire Robyn's take on this. She sounds a lot like my own mom. I think one reason that SCI and other injuries are so traumatic to families is because you see what life was like before. I have been disabled since birth; my mom knows no different. She had to raise me on her own and "make it work." I'm sure there are times where she's felt sad and guilty, but I've never really seen them. I guess I'm grateful for that.

Another reason why able-bodied people have such a hard time coping with disability is because it's hard for you to see that using a wheelchair isn't nearly as tragic as you think it is. There's no way to explain this to you if you haven't been there yourself. Your children's lives have taken a course far different than what you would've imagined, expected or hoped for but that doesn't mean that all is lost. A life spent using a wheelchair or another mobility device is still a life worth living. I came into this world weighing barely 2 pounds and not breathing on my own. Really, I shouldn't be here. But life with a disability is better than no life at all. Spend two seconds thinking about the alternative, and you'll be thankful for what you have.

[carbar]

NJenn, I agree with a lot of what you say. Looking at the poll, I suppose that the parents/families of the 50% group of 16 & older accidents must in many ways have it the hardest. At that age a parent has been through so much with the child, crossed so many thresholds, and is on the verge of seeing him/her become a young adult - that to suddenly have all that crumble must be an enormous shock and adjustment. Of course, life does go on, and life can be very good and very happy, but it is not as it should have been or could have been. Loss is there no matter how well you adapt to it, and opportunity/choice does diminish no matter how much you want it not to.

[john smith]

I fall into the category of having a child 16+ who was injured. It has been 3 1/2 years. I am such a different person now. I continue to feel my family has been swept up in something akin to what refugees must feel. All the underpinnings of a life are loosened by this kind of trauma. The history of all the nurturing and the pain associated with the wonderful memories just continue to tug at you. I'm OK, but momentary breakdowns are common and, in a strange way, motivating.

I believe adjustment will come for me but I'm not there yet. I also believe restorative therapies are possible. It is infuriating that the hope of solutions is denied due to a lack of political will. In fact, I do not want to be well adjusted as long as there is work to be done.

SCI has to be fought on so many levels: emotions, finances, health, spirit; socially all your personal relationships change. All my friendships are different and many acquaintances have gone to the wayside. LOL. They are probably tired of hearing about Noah and hope and cures and all the other baggage we now carry. They can't relate and I don't care so I've become a little isolated.

That is why CC is so special. The peer group and community understanding is muy simpatico. I don't know what I need but I know I find it here.

John

[IanTPoulter]

Our daughter was 20, it happened almost 9 months ago. She was a pedestrian got hit by a truck. For the first month we didnt know whether she would live or die, that was the hardest. We had been to hell and back before her accident with other personal issues so this should have been the straw that broke the back of our marriage. It didnt, we have come out of it stronger. My daughter will never see me pity her or cry for her, Ive been through that and thats not what she needs now, that would put an unbearable burden on her to cope with our grief. She has all our love and support, we dont look backwards. Many of the things john put in his post I feel too.

[macska]

My son was 17, when in September 2002 he was robbed and shot in the back. Almost four years later, still frozen in time somehow....
I can relate to all your comments about the aftermath of this tragedy.
Never have I even come close to be able to move on, to not feel the whirlwind of emotions day after day.
Group Hug