Running out to the store just to get milk with a child in a wheelchair is not as easy as it seems and is avoided at all costs!
My back, arms, and neck often hurt or are soar and it is just part of life now. I remember one of Brendan's PT's telling me that one day my body would start to feel it from lifting him and all his equipment. I didn't think that day would come so fast.
Weekly 45 minute one way commutes to therapy have become part of my routine and I don't even think about them anymore.
I have constant guilt when I don't exercise and stretch him everyday but sometimes the days get away from me.
Family vacations have to be thought about before booking because we can't just go anywhere. Not to mention there is only two of us and 3 of them! Maybe that will get easier as the girls get older.
I recently realized I need to start asking for handicap accessible rooms because recently we were placed on the 2nd floor and carrying his wheelchair up a flight of stairs should never happen again if at all possible.
When I had my first child I had no idea how many times in one week I would have to bring my kid to the bathroom and I honestly don't look forward to how many more times that count will become over the years.
Last night I wished out loud to my husband that 'he could get his own pajamas on'. I did not feel like doing it at all! I realized this dream is far off when he couldn't even get his shirt off.
Our library is NOT handicap accessible yet we are going today because all 3 kids signed up for the summer reading program. I don't feel right bringing the other two to pick out books without bringing him. Sooooo we go today which means I have to carry him down a flight of stairs and then carry his walker. Why not add to my soar neck today?
Wheelchairs effect everyday activities and decisions. Walkers effect everyday activities and decisions. Having a child with a disability effects everyday activities and decisions but I will continue to try and do everything I possibly can with him because I want him to experience life like every other child.
I think I will just have my husband go grab that milk for me! :)
It was Thanksgiving day back in 2002. I was only 23 years old and my life forever changed on that day. I had a placental abruption and Brendan was born at 33 weeks. He lost oxygen during delivery due to incompetent care but was a fighter and turned 17 this year. My journey in life over the past 17 years took many turns I was not expecting but I try to stay strong and have my husband by my side even when I am not.
Well said, I am feeling you and the back and arm and neck pain. I never thought arms could actually hurt and be sore! Never! I guess I found out, huh? The bathroom deal, as we have talked before, has totally overwhelmed me. Emma is doing ABR therapy, and her hips and pelvic area are under construction, so to speak. We have been advised to not have her weight bear for the time being while we do those exercises, etc.
ReplyDeleteSo, now, going to the bathroom is a pain. She cannot really stand up or at least is not supposed to, so it is so hard to get her shorts and undies down so she can go. I have no thoughts on what to do about it either. But, it is a back breaker.
Today, I had to wait for my niece to get here. She is helping me this summer. I had to wait so I could take a baby gift to the post office. How crazy is that? It is like 100 degrees here in KY. I didn't want to have to lug Emma out of the house, then lug her out and lug out her heavy chair, just to run in a mail a package.
I totally get how you feel. But, let me tell you. I think you are doing a fabulous job, and all that you help Brendan do now will lead to more independence for him later. So, hopefully, it won't be like this forever.
Hugs. You are great and Brendan is lucky to have you. I just wanted you to know that I totally get you. You are not alone.
Thanks Amy I am glad you understand. I totally understand you waiting to mail that package. It is just like the milk sceniero. :) Good luck with the bathroom. That sounds back breaking. I love that he can basically stand up with a little help so I can pull down and up his pants.
ReplyDeletehey guys I am the disabled person lol and having to use my body differently has given me alot of pain to I am fully functional for the most part but just mobilizing in abnormal gait paterns does it too I really hope that things get a little easier soon and amy good luck with emma and the bathroom that has got to be tough
ReplyDeletelol Jenny. I am sure it is difficult for you and on your body. I always worry about his pain levels. He tolerates pain very well but that makes me wonder how much pain he is in on a daily basis. I see it in his face sometimes. I don't love him any less even with all the life changes. I wouldn't change anything because Brendan is Brendan. I would change it for him....to make his life easier but that's it. I can handle it! :)
ReplyDeleteThis blog echoes my own mother's thoughts.
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