This year I am asking each kid to tell me 2 things they love about each of their siblings and 1 way they feel muscular dystrophy has affected their lives. I am going to type exactly what they say, so this year its 15 things
Madi:
what I love about Kelsey
1.Her sweet
2.and she plays with me
What I love about Robbie
1.He's sweet
2. and he plays with me
Muscular Dystrophy
Um..what? I don't know what that is.
Robbie
what I love about Kelsey
1.she helps me with homework some times.
2.she plays minecraft with me
what I love about Madi
1.she watches T.V, with me
2. she loves me
Muscular Dystrophy
I can't run that fast
Kelsey
What I love about Robbie
1.His smile
2. the way he talks when he plays video games
What I love about Madi
1. how playful she is
2. How much she likes to cuddle with me
Muscular Dystrophy
How it affects the way people treat Robbie and us.
Friday, February 14, 2014
Monday, February 3, 2014
The question...
We were on our way back form a Christmas party. I was with my youngest two, Robbie and Madison, in the back seat of my parents car (jeep,sorry Dad). Robbie in particular had a million questions, for some reason he was really concerned about oxygen levels in the car. i'm not sure where he comes up with this stuff. Then it happened, "Mommy do some people die from some types of muscular dystrophy?"
I paused, panicked because honestly I thought we had years of research and medicine before I would have to answer that. I thought I wouldn't have to say "Yes sweetie, sometimes from some types." but I was wrong because that's what I had to say that night. Shelby and I from beginning have decided never to lie to him about his condition but let me tell you everything in me wanted to lie. I can even justify if I try a little but I knew I couldn't.
I hate that I couldn't give him another answer because he deserves a better answer. He deserves to hear No not anymore. All kids deserve to look forward to a long happy life even if thats not how it turns out. I think I worried about at 7. How to get my brother out of my room because he just could not play barbies correctly, how to get those cooked carrots down if we had pot roast for dinner, how to finish math facts quickly, pink shirt w/ black hearts or black shirt w/ purple hearts?
Mortality was never a fact of life for me as a child. My Grandpa passed away when I was 4 and I think on some level I still thought he was hiding under my Grandma's bed when I was 18. it is a fact of life for all 3 of my children. Forever, some day, when we're older are not terms we do not use very often around here. It's to hard and way to sad to consider those times so we keep our thinking in 1 year time frames.
I had to stop writing this for a few days because I was really struggling with whether or not this was something I wanted to share. it was such a quick but deeply personal moment in this journey. After much thought I decided to share this moment because I want and strive to be honest on here. So many times we try to sugarcoat the bad things so they are easier to swallow but in my expeirence that rarely works for me.
For my family we decided the best way to face what is in front of us is being honest and fighting together. This isn't to say my way is the right way for everyone just that it is the right way for us.
I paused, panicked because honestly I thought we had years of research and medicine before I would have to answer that. I thought I wouldn't have to say "Yes sweetie, sometimes from some types." but I was wrong because that's what I had to say that night. Shelby and I from beginning have decided never to lie to him about his condition but let me tell you everything in me wanted to lie. I can even justify if I try a little but I knew I couldn't.
I hate that I couldn't give him another answer because he deserves a better answer. He deserves to hear No not anymore. All kids deserve to look forward to a long happy life even if thats not how it turns out. I think I worried about at 7. How to get my brother out of my room because he just could not play barbies correctly, how to get those cooked carrots down if we had pot roast for dinner, how to finish math facts quickly, pink shirt w/ black hearts or black shirt w/ purple hearts?
Mortality was never a fact of life for me as a child. My Grandpa passed away when I was 4 and I think on some level I still thought he was hiding under my Grandma's bed when I was 18. it is a fact of life for all 3 of my children. Forever, some day, when we're older are not terms we do not use very often around here. It's to hard and way to sad to consider those times so we keep our thinking in 1 year time frames.
I had to stop writing this for a few days because I was really struggling with whether or not this was something I wanted to share. it was such a quick but deeply personal moment in this journey. After much thought I decided to share this moment because I want and strive to be honest on here. So many times we try to sugarcoat the bad things so they are easier to swallow but in my expeirence that rarely works for me.
For my family we decided the best way to face what is in front of us is being honest and fighting together. This isn't to say my way is the right way for everyone just that it is the right way for us.
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