A parents take when a child has MS

A parents take when a child has MS

Everyday we live it.  We deal with the feelings, lack of feelings, the daily challenges and frustrations.  However how we do we affect our loved ones around us? I can’t talk about husband because I don’t have one anymore. I can talk about my daughter who takes on a big chunk of the weight because she lives with me but I’m not.  I want to talk about the parents. My parents divorced when I was 4. My mother remarried when I was around 7 but Jack (my stepdad) has been in my life since I was 4.  My dad had also remarried and divorced and remarried again.  His wife Susan has been around for 25 years.  In other words both mom, dad and step parents have been around since I got MS.

Going back in time 18+ years.  My first symptom with MS was optic neuritis. I went to a few doctors no one could find anything wrong actually one of the doctors said “for all I know it could be in her head”. Nice doctor!!! However he did do an MRI.  It showed on lesion. By itself they considered that inconclusive. When my major attack happened, my mom and Jack had to confront me that I needed a doctor this wasn’t “in my head”. They were going on vacation the following Monday, they never went. I was diagnosed with MS that week.

Over the years I have had roughly two attacks per year  some attacks I’ve had full recovery some I haven’t.  In the summer of 2014 I had an attack that I didn’t recover from. That was what really disabled me.  My  mom takes the brunt of my disease on  she hears the complaints, she hears the tears, the challenge of the daily life and the frustration.  My mom has empathy for the me she always has  most people have the sympathy.

When I first stopped working it was bitter sweet for me.  I was happy because my body was exhausted but sad because I loved my job.  We were in the doctor my mother, Jack and I and we were talking about no what to do now.  My mother said to the doctor “Jamie coming out of work was the best thing that ever happened for her.  I never realized how exhausted she was until she stopped working.  She says yes now for dinner.  She wouldn’t have the energy to do anything while she was working.  She spent every weekend on the couch”  now I knew this but I didn’t know she knew.  Yesterday in another conversation with the doctor it was a conversation about being in my shoes. I said “you can’t know what it’s like for me unless you walk in my shoes”  I meant how things feel the hands, feet, the numbness that never goes away etc.  the response I got shocked me “you don’t think your mother and I feel everyday what you go through? You don’t think we cry over how much our child was robbed of in this life?  You don’t think our hearts are broken over this?”. I was speechless for a second.  My dad has also said to me so many times. “Jamie my heart breaks for you”.

I want to tell you what I told Jack yesterday.  I don’t feel like MS stole my life.  This is the hand I was dealt.  This is the path I was given to walk down.  How do we know where my path goes? Maybe the universe has a big plan for me yet to come out and unfold.  Maybe I’m here to inspire people to be positive and be strong.  Maybe I’ll become a writer and reach other people with a disease and help them deal with things in their life.  Don’t look at me as poor Jamie.  I’m just on a different path.  Give me support not pity.  Give me love.  Maybe help do something that I can’t do for myself that can make my life a little easier with one less challenge but not pity.  Love me as parents do but don’t cry for me.  My path is different but I’m alive and I’m still on a path and for that be grateful.

 

 

One thought on “A parents take when a child has MS

  1. Powerful reflection. When you are diagnosed it impacts those who love you most. There is a real shift that takes place in the famoly. Especially the role we have with our siblings.

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