Thank you


I wanted to first thank all my new followers (guess that is what you call you all)? I was and still am in shock of all the hits I had this morning and last night.

I want to be an encouragement to each and everyone one of you.  Some have asked me to talk about my struggles of what its like to live with SB.

Let me give you quick background. I was born with the most severe form at L4-5. I walk with braces and crutches. I don’t have bladder or bowel issues. Have always been able to go the bathroom on my own. Yeah I go more then the average person but its just a way of life and my parents and I just have learned to live with it. My boyfriend also has learned that as he says “its just the way I am wired”.

Is having SB a struggle oh yes its a struggle but I was brought up in a home that allowed me to try anything that I wanted too.  I learned  how to drive a car at the age of 19 out of necessity  to get me back and forth to work. I graduated from high school at the age of 18,  I was in classes for people with LD issues, back when you were in a classroom with all students from the ones who did not care about school to those like me with LD issues. It was a struggle but I did really well, I could have done well in the regular classroom if I had support like they do now a days.

I love sports so I tired several sports for winter I learned how to snow ski, in the summer I was involved in a disabled rowing/sculling team.

I did not have many friends through my life but there are a few that have stuck by me.  I recently at the age of 39 have my first boyfriend.  He is so awesome.  Some people think its weird to search for your spouse over the internet but I have to say it was the best thing that happen to me.  No he is not my spouse “yet” but we are taking it slow. We were matched 3.5 yrs ago. Met in person for the first time in October 2009. We instantly clicked, we get along so well. What Email and IM allowed us to do is to get to know each other on a deeper level before actually meeting face to face..now you probably are wondering why I mentioned this? Its because this is a struggle that I have had all my adult life. Guys were just not that interested in me. When my boyfriend and I finally did meet we spend the entire day together he came to NC to visit me. He saw the struggles that I deal with all day long. I struggled at times with steps and he felt helpless..his words. He did not know what to do. I told him in the beginning that my life is full of struggles and that I adapt. I also told him that if I need help I will not be afraid to ask for it.

This is where I think most parents of older children need to allow your kids to explore and try and do things for themselves..yes it will be tough to watch them struggle but you need to allow them to struggle so that when you are not around, they will be able to figure out how to do stuff.

I am not sure I answered any ones questions today. I have to really start to think about how I do things and get those down on paper.  So that I can share the struggles and accomplishments with everyone. Please feel free to comment and ask questions I want to make this as open and positive as possible..I was talking to my boyfriend and tell him about what I wanted to accomplish here and he is so excited for me.

Blessings everyone have a great week

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5 Responses to “Thank you”

  1. Kim Neely Says:

    Hi, do you have a name or nickname I can call you by? I hope you don’t mind me sharing your blog with some online friends. Mainly moms with young children and babies, and the long term is so hard to grasp for us.

    I find it sad that you didn’t find a partner until later in life. I’m 40 now, and I had thought you were much younger by the way you referred to your boyfriend.

    Did you live at home with your parents for an extended period?

  2. Kim Neely Says:

    I wanted to ask, have you ever had bladder or bowel issues? Did they get better, and do you get your bladder and kidney’s checked now and then?

    • Marie Says:

      I never have had what you would call bladder and bowel issues. I have my own as far as having to go the the bathroom (bladder) alot more then someone else. I am able to go like any average person can go. no need to cath. Don’t have my kidneys or bladder checked. Don’t really have a SB check up..Just pretty much go to the regular doctor if I have a problem and if a specialist is needed will go to one.

  3. Elizabeth Keicher Says:

    Hi Marie – I’ve been checking out your blog thanks to a fellow mom’s recommendation from the SB group. I have a 7.5 month old daughter, Emily, who has SB (L5). We have been cathing since birth. Like Kim, I have a lot of questions about my daughter’s life as an adult. I appreciate your willingness to share your experiences and speak openly about SB. Do you have a shunt? My daughter had a VP shunt placed when she was 17 days old – I do wonder about long term management/issues with knowing the shunt is working.

    If you don’t mind I’d like to put a link on the blog I run for my daughter, to your blog here. Not only myself but family and friends would like to know more about adult life with SB so your blog could be very helpful.

    Elizabeth

    • Marie Says:

      yes please feel free to link my blog to yours. I am delighted that I can be of some help to young parents and give you all a perspective of what life living with SB is going to be like. I am shunted have been shunted since I was 7 days old. Had my first revision at the age of 18 yrs old and for about 1.5 yrs after that I had them every 6 months until things settled down. Again thanks for your comments and questions

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