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Thread: The Coming Home..what about me?

  1. #21
    Quote Originally Posted by Sarah's Mom View Post
    Sharon, I understand exactly what you are going through. Sarah's (C6/C7 incomplete) accident happened on her 19th birthday (12-20-08) and my life is still wrapped up with every aspect of her care. I feel almost desperate to help her - the feeling of knowing that this is the one thing that I can not change has been so hard on me. My heart hurts all day/every day wishing that I could change this madness for her.

    My daughter went from an independent working young adult who was nearly ready to enter the world on her own, back to totally being dependent on me once again. Lucky for all of us, I have been married to a wonderful man for nearly 5 years and I do not know how we could have come this far without him. He has been a big part of Sarah's progess to this point.

    My boss always says...."sometimes it takes a village" and that is so very true in our situation at home as well. We have all worked together to help Sarah and do what we need to for her to get the things that she needs to continue to improve and regain her independence. It has been 15 months now and this past Saturday evening was the first time that we ever left her actually alone and up in her chair - her friends arrived about 2 hours later. Until that time, she always had someone with her. I must say, I did not have any guilt. I actually felt good about it - and of cousre, she was fine. She is finally getting strong enough to figure more out on her own - plus she will try harder (big eye opener for me). Without CC, I am not sure if I would have been able to leave that evening. (I do not post a lot on the site but I read posts all the time. It has truly been a blessing for me personally.)

    What everyone says here is so true. It does get better and things get easier. You make the adjustments and do what you need to do for everyone. Your son is so much younger than Sarah and his youth is on his side as well. With your strength, he will progress quickly and you will be able to get a new routine where you can get your life back on track too. I have been told a thousand times that I have to think of myself also. You need to do the same.
    I was 21 when i got injured and became a C-6 quad. After about 5 months in the hospital, i was released and had to move in with my mother and her husband. My sister basically lived there to. They of course were all very eager to help in anyway possible and i did need a lot of help given the injury was still so new, but in retrospect, i probably allowed them to help more than absolutely necessary which i think slowed my ability to get more independent.

    When i found an apartment to move into about 2 1/2 years after my injury, it was by far the best thing for me becoming vastly more independent and allowed my mother to get back to a more normal life. Living on my own again along with my young daughter being their a lot at the time, i found that many of the everyday things that i'd previously asked for help with, i could do instead myself with practice until it eventually became fairly easy. When forced to try and do tasks instead of having someone near by that can do them much easier, i found ways to do them if physically possible.

    I'm not trying to imply that you're doing to much for your daughter given i know absolutely nothing about your situation involving your paralyzed daughter, i'm just saying that in my situation in retrospect, i was more capable of things back then than i thought because others around me were always there willing to offer their help.

  2. #22
    I just wanted to post an update since you have all been so kind and helpful. Thank you for validating all of my feelings, I feel much less crazed!

    Since this original post Robbie had some setbacks, a UTI that had him hospitalized but we've got it under control now, we are back in PT and I feel like we have made trememdous progress in the past few weeks.

    I am learning to let go and let Robbie do things for himself, we've both been surprised at all he can do with his strength returning. Some of the things he has learned since he is feeling better are: pulls himself into the car alone (including his long crazy legs), new bath is done so he does his bowel program and shower alone, he is dressing himself more often, playing with the dog more, the list goes on and on...it feels so good for all of us.

    Also, his best buddy has gotten comfortable with having Robbie at his house, they have played basketball, went to a bonfire and also gone to the movies. His friends can now take apart the w/c and one of the dads has helped drive him around. It feels strange to me to let him go and I worry a lot but I know we both need it. It makes Robbie feels so normal!

    This week he is going to get into the pool for the first time at our therapy center, he is looking forward to that.

    I went out for a glass of wine with girlfriends one night, left Robbie home with his 16 yr old sister. I wasnt very comfortable but everything was fine at home. They both want to be trusted with our new lifestyle and enjoy some time away from me as well.

    I do feel somewhat sad, out of energy, uninterested in socializing with others...it might be depression, Ive struggled with that before when i got divorced, I dont know, we shall see.

    Thank you all for your friendship!

  3. #23
    Sharon, It is fantastic he is able to do all of those things. Even with the two step forward one step backwards trials he has had. Having a good friend like he does must make a huge difference in how he feels.
    I hope the glass of wine you had with your friends was a big one.
    I understand how you feel about getting out. It seems the conversation always gets back to Dave. I feel distracted and have a hard time even concentrating on the conversation. Hopefully that gets better.
    Again, very impressed with all he is doing!!!

  4. #24
    [QUOTE=Sarah's Mom;1192268]Sharon, I understand exactly what you are going through. Sarah's (C6/C7 incomplete) accident happened on her 19th birthday (12-20-08) and my life is still wrapped up with every aspect of her care. I feel almost desperate to help her - the feeling of knowing that this is the one thing that I can not change has been so hard on me.
    It has been 15 months now and this past Saturday evening was the first time that we ever left her actually alone and up in her chair - her friends arrived about 2 hours later. Until that time, she always had someone with her. I must say, I did not have any guilt. I actually felt good about it - and of cousre, she was fine. She is finally getting strong enough to figure more out on her own - plus she will try harder (big eye opener for me). Without CC, I am not sure if I would have been able to leave that evening. (I do not post a lot on the site but I read posts all the time. It has truly been a blessing for me personally.)
    This has made me so, so, sad. We're in the year 2010. I was injured at 16 in 1970 and am a 5-6 inc.. This far post injury I was driving a car, pulling my own chair in and out to take a high school class offered at the community college so I could move into a dorm in the State University System. I went on dates to dinner the movies or both. My 1st summer out of rehab I was swimming in my Aunts pool. I went out with friends on weekends, took younger sisters shopping at malls, etc. I loved being home alone which was seldom as I was one of 7 kids. When I was, I enjoyed making stuff to eat cooked the way I liked.
    My Mother had one of the 1st Cable TV talk shows, ran for political office,
    my parents hosted dinner and coctail parties frequently. My Mom took the younger ones to the town beach and sat in her beach chair with her "summer lady beach friends". My Dad did take the younger 5 camping cross country at National Parks during which time I stayed home with Mother.
    Why can't she do her care? I could and did though got help Christmas morning because everyone entered the living room at the same time. I didn't want to hold up the little ones anticipating Santa in those pre-dawn hours.
    I was to niave to think I may not be hired cause I was a quad nor did I ever think i'd live with my parents forever. I moved out at 19.
    Has our society changed so young adults live home longer? Have mothers' planned 'play dates' and been overinvolved in older childrens' after school activities?
    I never saw someone in a w/c on TV but also was to busy to watch it. I did get involved in w/c sports. There I met my 1st friends not able bodied. As a group they all worked at being all they could be.
    Your daughter will feel like she can do nothing if in all this time she has only been alone for 2hrs. Please, she needs to be living the life of a young adult. She needs to learn not to be dependent on only you. Check into county or state caregivers to give you a break and help her learn how to direct her care. Ideally, she'll one day be like your friends kids. Showing up for Thanksgiving, sometimes borrowing money or chatting on the phone about her new heart throb.
    Last edited by dash; 05-18-2010 at 05:14 PM.

  5. #25
    I can somewhat relate to your situation. I am a professional caregiver so to speak but I know how life can get thrown upside down to have to care for someone. I love my job and would never trade it in but I just wanted to let you know I'm with you.

    Please keep your chin up. Your son is worth it. Be proud of our accomplishments and determination to help your son get through these heart breaking times.

  6. #26
    Good to read the update Sharon.

    My son was injured three years ago when he was 14, he's now 17 and doing great. It's a long road to travel and really hard as a mom. I promise it gets better. Little setbacks here and there will happen, but things get into a rhythm and you will find a new normal. The first year was/is a blurr -- so many appointments, PT, swim therapy, school, etc.

    I recently went back to school and am able to juggle the caregiving and parenting. School has energized me!

    Take care!
    Ugh, I've been kissed by a dog!
    Get some hot water, get some iodine ...
    -- Lucy VanPelt

  7. #27
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    great news!!! i know i have mentioned this before but try checking out wheelchair sports. it may be a good thing to get him around kids his own age who are also disabled. i think there is wheelchair racing and wheelchair basketball in your area. you may want to check with organizations such as http://www.spinabifidaassociation.org (most kids who are in chairs have SB but their events are open to all). it's also a way to connect with other parents who are in a similar boat as you and be another outlet for your son. the spina bifida chapter here does a weekend camping trip, bowling, pool parties and of course wheelchair racing trips too across the nation. two of our racers have gone on to be paralympians! also, don't forget to push education. sports was my outlet to get out of myself, education is my way of really defying sci.

    hope things get easier and please know your son can have a "normal" (what the heck is normal? to me it's living life to its fullest with a dab of crazy and cayenne pepper) life. get married if he wants if he finds someone, can have kids etc. all of those are possible and having u behind him 100% = teh awesome.
    "Smells like death in a bucket of chicken!"
    http://www.elportavoz.com/

  8. #28
    For those of us who rehabbed in the earlier days, I wonder if we came out of rehab stronger and more independent. My rehab was 14 months and the quads, If I remember, did around 18. It was no cake walk by any means, but seeing now that many only get weeks in rehab and then are sent home, how can they possibly be ready.

    Your post brought back good memories Dash. They told us to get on with life and we did. The first year sure sucked, I agree. And it did get better, much better.

    It sure sounds like Robbie is on track. Congrats, has he gotten into any wheelchair sports yet.

  9. #29
    A friend of ours just signed Robbie up for an annual membership with Sportable, the local group that organizes disabled sports, they have many options we will be checking out soon.

    The big news is Robbie got in the pool yesterday for the first time, he LOVED it and got a great work out!

  10. #30
    Quote Originally Posted by Patrick Madsen View Post
    For those of us who rehabbed in the earlier days, I wonder if we came out of rehab stronger and more independent. My rehab was 14 months and the quads, If I remember, did around 18. It was no cake walk by any means, but seeing now that many only get weeks in rehab and then are sent home, how can they possibly be ready.
    I think you're exactly right, My daughter spent 8 weeks in rehab but when she came home she was still weak and had to rely on myself and her sister for dressing, bathing, toileting, ect. for the first month. It was overwhelming for everyone involved. I still help her with some things but she's still continuing to get stronger and more independant.
    I'm not trying to criticize her rehabilitation program, but I do think it's unrealistic to expect someone (especially a teenager) to leave rehab and be even close to "ready" when they're still less than 4 months removed from their injury.

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