Mom's Story: Retuning Home
Since this whole thing started I have been involved with
Chris’ recovery. I kept notes of what seemed to work and what
didn’t. I also wrote down my ideas of what may help and was
worth a try. After coming home we have been involved with allot of
things that are working, the notes that I kept are now being put into
action.
Chris and I were going to the gym twice a week; I would stand behind him most of the time to make sure he is putting equal weight on each side. We both laugh about this because I have spent hours, watching his butt! Chris walks everyday, normally about two miles around our neighborhood, and he recently joined a gym. I tolerate what has come to be known as “Rap” therapy. Singing or even humming improves the total voice, so speech improves. His choice of music is not always what I want to listen to but as long as he is willing to sing or Rap I’ll deal with it. It has helped in many ways, he now has a rhythm in his voice, his speech is getting faster, and he is able to hold his breath longer to support his speech. The big joke is: he couldn’t sing before his accident and he can’t now either! It’s allot easier to work on his arm and hand during normal use, every chance I have for him to open a can or jar it is therapy, and I don’t mean use the electric can opener! This has caused some flying corn and soup a few times, All I can do is smile, give him a towel and say “more therapy, clean it up”. (I get cussed at for that one!) He brings in the groceries, carries his own food and drink, ties his shoes, buttons his shirts, rake’s up the yard and anything else that needs to be done. Clonus, spaticity and tone are still big problems and causes difficulty at times. When it gets to the point of frustration or anger he asks for help, I’ve learned not to offer unless he asks. He still has a way to go but it’s getting much better. We are both looking forward to an appointment with a doctor who uses “Botox” for the reduction of tone and spaticity, he will be seeing him hopefully in January. The results of this treatment could help Chris not only have better control with his arm and hand but allow him to run again. I’m trying not to get overly excited about the possibilities but there have been wonderful results with other patients.
The toughest part is the emotional. I decided that everything about me and who I am, is based on, what I have done, and what I do. I knew that the only way to help Chris have a sense of self was to for him to start to replace the things from his past with new things for his future. We both are working on this project; we have both started making lists. 50 things I’m proud of, 50 things I regret, and 100 things I want to do. This project has helped in many ways; it has aloud Chris to have pride in what he has accomplished and to see what he is truly capable of doing, it also has made us be very creative in finding new ways of doing old activities. One thing from his “want to do” list, was drive, we started about 4 months ago (June 2001) with just backing in and out of the driveway and little by little he got better and better! He now is driving on his own and pretty much anywhere he wants to, within reason. I won’t tell you that I haven’t been nervous over this one! It’s been like letting a baby bird try to fly after they have fallen from the nest! (Chris never had any seizures or blackouts so this has not been an issue) I do insist that he call home on a regular basis, so Chris got a cell phone. Well in fact he has had 3 cell phones, the first one got run over when it fell out of his pocket at a Burger King, the second got stolen off his pocket while at the beach with friends. So now he’s on phone THREE! Chris is really good about keeping in touch during his day, and it’s a darn good thing I think I would worry myself to death! Chris had one thing on two lists, running, he was always proud of the record times he ran and he so badly wants to do it again. Physically he can’t yet so we found a way for him to replace the old with something new, bicycling! He can ride with the same feeling of speed, and freedom. There are races locally where he can fulfill the need to compete. Another thing from his list is he wants to jump again, most would say this is a crazy thing to even consider, but we have at least checked into the possibility of tandem jumping in the future. Just getting him to see that he can in fact do things he loves has helped his emotional being. There aren’t nearly as many outbursts of anger over his “condition”.
It's currently October 2001 and we have been home now for about 6 months, this is the hardest thing I will ever go through in my life or at least it feels that way. An injury like this takes it’s toll on everyone, family members and friends all react differently, many are full of suggestions and some don’t know what to say. I find myself repeating what Chris says all the time, “You just don’t understand.” This attitude hurts those who love you, and creates a distance. I have been told I am obsessed, well in a sense I am! I have spent hours researching the “treatments and cures” there are as many opinions as there are injuries and yet no two injuries or opinions are the same! Like any other parent who deals with a sick or injured child I want to help him in anyway I can! I try so hard to help him regain his life but then I wonder if I am doing what’s best. I helped him learn to drive again, then wonder if it was too soon? I encourage him to go and meet new friends, then wonder if they will hurt him or take advantage of him in someway? I want him to grow and be independent again, but I also want him to stay here with me, coddle him and keep him safe. You see it’s a roller coaster, a battle, it’s finding the balance between what’s best for him and won’t hurt him. I know you don’t learn to walk without a few bruised knees, and you don’t make it through life with out disappointments, but I also know he’s had more than his fair share of both of those! I will finally close with a few things that I realized during all of this.
Chris and I were going to the gym twice a week; I would stand behind him most of the time to make sure he is putting equal weight on each side. We both laugh about this because I have spent hours, watching his butt! Chris walks everyday, normally about two miles around our neighborhood, and he recently joined a gym. I tolerate what has come to be known as “Rap” therapy. Singing or even humming improves the total voice, so speech improves. His choice of music is not always what I want to listen to but as long as he is willing to sing or Rap I’ll deal with it. It has helped in many ways, he now has a rhythm in his voice, his speech is getting faster, and he is able to hold his breath longer to support his speech. The big joke is: he couldn’t sing before his accident and he can’t now either! It’s allot easier to work on his arm and hand during normal use, every chance I have for him to open a can or jar it is therapy, and I don’t mean use the electric can opener! This has caused some flying corn and soup a few times, All I can do is smile, give him a towel and say “more therapy, clean it up”. (I get cussed at for that one!) He brings in the groceries, carries his own food and drink, ties his shoes, buttons his shirts, rake’s up the yard and anything else that needs to be done. Clonus, spaticity and tone are still big problems and causes difficulty at times. When it gets to the point of frustration or anger he asks for help, I’ve learned not to offer unless he asks. He still has a way to go but it’s getting much better. We are both looking forward to an appointment with a doctor who uses “Botox” for the reduction of tone and spaticity, he will be seeing him hopefully in January. The results of this treatment could help Chris not only have better control with his arm and hand but allow him to run again. I’m trying not to get overly excited about the possibilities but there have been wonderful results with other patients.
The toughest part is the emotional. I decided that everything about me and who I am, is based on, what I have done, and what I do. I knew that the only way to help Chris have a sense of self was to for him to start to replace the things from his past with new things for his future. We both are working on this project; we have both started making lists. 50 things I’m proud of, 50 things I regret, and 100 things I want to do. This project has helped in many ways; it has aloud Chris to have pride in what he has accomplished and to see what he is truly capable of doing, it also has made us be very creative in finding new ways of doing old activities. One thing from his “want to do” list, was drive, we started about 4 months ago (June 2001) with just backing in and out of the driveway and little by little he got better and better! He now is driving on his own and pretty much anywhere he wants to, within reason. I won’t tell you that I haven’t been nervous over this one! It’s been like letting a baby bird try to fly after they have fallen from the nest! (Chris never had any seizures or blackouts so this has not been an issue) I do insist that he call home on a regular basis, so Chris got a cell phone. Well in fact he has had 3 cell phones, the first one got run over when it fell out of his pocket at a Burger King, the second got stolen off his pocket while at the beach with friends. So now he’s on phone THREE! Chris is really good about keeping in touch during his day, and it’s a darn good thing I think I would worry myself to death! Chris had one thing on two lists, running, he was always proud of the record times he ran and he so badly wants to do it again. Physically he can’t yet so we found a way for him to replace the old with something new, bicycling! He can ride with the same feeling of speed, and freedom. There are races locally where he can fulfill the need to compete. Another thing from his list is he wants to jump again, most would say this is a crazy thing to even consider, but we have at least checked into the possibility of tandem jumping in the future. Just getting him to see that he can in fact do things he loves has helped his emotional being. There aren’t nearly as many outbursts of anger over his “condition”.
It's currently October 2001 and we have been home now for about 6 months, this is the hardest thing I will ever go through in my life or at least it feels that way. An injury like this takes it’s toll on everyone, family members and friends all react differently, many are full of suggestions and some don’t know what to say. I find myself repeating what Chris says all the time, “You just don’t understand.” This attitude hurts those who love you, and creates a distance. I have been told I am obsessed, well in a sense I am! I have spent hours researching the “treatments and cures” there are as many opinions as there are injuries and yet no two injuries or opinions are the same! Like any other parent who deals with a sick or injured child I want to help him in anyway I can! I try so hard to help him regain his life but then I wonder if I am doing what’s best. I helped him learn to drive again, then wonder if it was too soon? I encourage him to go and meet new friends, then wonder if they will hurt him or take advantage of him in someway? I want him to grow and be independent again, but I also want him to stay here with me, coddle him and keep him safe. You see it’s a roller coaster, a battle, it’s finding the balance between what’s best for him and won’t hurt him. I know you don’t learn to walk without a few bruised knees, and you don’t make it through life with out disappointments, but I also know he’s had more than his fair share of both of those! I will finally close with a few things that I realized during all of this.
- It’s a waste of time to spend you life wondering “why” leave those questions to your higher power.
- We were all born and we will all die it’s the journey in the middle that matters.
- I am a Mom it is who and what I am everything else about me could in fact change. I have a controlling personality and this accident was one thing I had no control over. I insisted on what was best for MY SON, for this I am proud and have no regrets.
- The word T-I-M-E is a four-letter word, it sounded like swear word to me and I hated hearing it, but time does heal. Life has to be lived it is not enough to just exist or function, try to remember to “dance like no one is watching.” And make your life “the thrill of victory” don’t ever allow “the agony of defeat”.
- Next time you see someone who has a disability remember a smile doesn’t just change your face it changes your heart.