SCI mom looking for someone in similar situation

I am a single parent and I am my sons caregiver.  My 19 year old son has been a c-4 ,c-5 quadriplegic for 4 years now. I am wondering if there is anyone out there careingfor a SCI patient?  Or anyone who is careing for their own child?  I can really use some help in trying to find some type of balance in all this.
Any help or advice would be greatly appreciated.

[scimom2005]

My daughter became a c-4 quad 6 years ago at the age of 16. she is now 23 years old. I am her only caregiver. My advice is to take each day as a blessing. I don't know the reason for your son's injury, but I do know that I could be visiting my daughter at a cemetary instead of taking care of her. If you would like to talk more, please feel free to email me -***@****

Sci Mom too

[scimom]

Hi.  Thank you for your reply.  I agree with what you said.  I to could be visiting a cemetary.  I am very grateful I am not!    It is hard to remember that sometimes.  Me and my son fight alot.  It seems we take our anger and frustrations out on each other.  I know we are just frustrated with the situation but it is hard.  It seems to be getting worse.  I honestly do not know how to find a balance between me and him.  I feel like I have to be selfish and demand a minute to myself.  
Do you ever get regular breaks?  What do you do for stress?  I love my son no doubt. I feel like he doesn't care about what I am going through because he feels he has it worse so what I am going through cannot be to bad.  It's not that it is absolutely horrible or anything.  In the morning is the worst.  Before I get him in his chair we argue about stupid little things and it makes me grumpy all day long.  He knows how to push my buttons I guess.  I guess other people really do not have this issue.  I just would like to find a way for us to not get angry at each other every morning.

[cead]

I guess I a m a bit late arriving at this post/subject.  Hope all is going better for you and your son these days.

I am also a single mom with an adult child.  Unlike you, who have only been doing this for 5 years, I have done it for my child's entire lifetime. 30 years+ without a single break or a single day off. It is a 24/7 job of dedicated loving care.  It is hard work but it is also the most rewarding job that you could ever do.  It does not get any easier to be a care provider as you go along in time.  You just adapt to your lifestyle and learn different coping skills.

You both have a great deal to work through.  You thought your son would remain active and healthy and so did he.  What a shock to both of you. This does not just entail care giving on your part.  It entails entire lifestyle changes for both of you.  The more you show your son that you resent doing this, the more he will argue with you .  That is natural human nature.  He is testing you!  He feels bad.  When you argue, you force him to perceive himself as a "burden".  As the previous poster said "what if he did die?"  What if his perception of feeling like a burden led him to commit suicide (heaven forbid).  What if he just simply gave up?

Like it or not, it is what it is.  You have to come to terms with it.  It is going to require that you change your life in so many ways.  You will find that old friends suddenly do not call to ask you to go places with them anymore.  Well, they were never REALLY your friends so get over it. You will find that as time goes on you will spend your time with new friends. Those friends will have disabilities or children with disabilities.  What you are going through now is that you are still attempting to live between two worlds. Your old "normal" world and the world of people with disabilities.  You are attempting to combine them both but that is impossible or you will tear yourself in two. Eventually, you will find that you have to make a choice. Your old world or your new world.

I can tell you that this "new world" that you have begun to enter is a beautiful world.  It is much more beautiful than the one you are leaving behind with the friends who you are about to permanently lose. Your new world is a world that is many times more beautiful and REAL and has so much more technicolor than the old one. You will grow to love this world of people with disabilities and that is when you will find your "job" fulfilling and rewarding and not just "work"

Think about this...If your son had remained healthy and active, you would have just assumed that that was the natural course of things in everybody's life and you would probably now be going out to work at a stressful job (if you could find a job in this job market or had not been laid off) and complaining about that (not saying that you are a complainer, just using as an example) or something else.  It is just human nature.  You would never have been exposed to this world of people with disabilities.  You would have missed so much wonder and beauty in your life and that of your son's.  

God has His reasons for everything that happens in each of our lives.  They are not our reasons. It is not for us to try to understand His reasons.  Our job is to accept His will.  If you can do that and offer your trials as penance and sacrifice for the will of God, you will find this road to be a very extremely easy one to navigate.  He will always console you and He will always give you whatever you need or ask for and make your "burden" light.

You and I probably perceive this somewhat differently because your son was once "normal" (for lack of a better word).  My child was born this way.  I never had high hopes or expectations for 13 years which were suddenly and abruptly ripped away.  However, I have had to worry about medical issues and possible death.  That is a much harder option to carry around inside.  And that is what the last mother was trying to tell you in her post.  Be thankful for every day and every minute that you have with your son.

It is not easy never to be able to go to the hairdresser or market or places that people take for granted without also having to load a wheelchair into your car and the time it takes to get ready to even get to those places in the first place.  that won't change.  When people pressure you to do something and you just cannot fit it into your schedule, you just need to know how to say, and firmly mean, these 2 phrases:  (1.) "my plate is full" and (2.) "NO".  After that, go out and have some fun with your son and laugh with one another and be fun with each other just like the old days.

You had high hopes and expectations that were suddenly snapped away from under you.  That is the same thing that your son is probably feeling too.  You both need to heal and then go on to a new and more beautiful world and lifestyle where you will see the beauty in people as God sees us.  From the inside.  When you arrive in that place, you will never look at people the same way again. And you will enjoy every minute of every day even if you never have another single break or alone time again in your life.  You just cannot live torn between two worlds.  You need to make a choice and then go on.  You are here now!

If you ever want to talk about coping skills or anything regarding disabilities, or just vent or anything feel free to give me a jingle. we all need to vent at times.

You are NOT alone!

Cead