My attempt at writing a poem :) I wrote this for my little ones and thought it was fitting for the image and how they felt that day and everyday and how I wish i could do more for them.
I wish I could take it all away
I wish I could take the sadness away
I wish I could let you run and play
I wish it was not this way
I wish I could make it go away
Wipe your tears and be brave
Tomorrow is another day
Close your eyes run and have fun
Laugh, tumble and play in the sun
Hush little one no more tears
You must be brave no fear
It will get better, there will be answers
Life will be better for you and your baby sister
I took this shot of my youngest (in the red hat) at a recent field trip. I had to go on the field to make sure Mason was taken care of because they cannot afford extra help for him. I took this shot because of what I felt at the moment. I was sad, jealous of the other children being able to run for as long as they could and just have fun while Mason and Ireland watched. I could see Mason getting excited and ready to jump in the fun and he did and I let him for one quick short run. I felt bad for them and felt even worse when they gave me a look that said how much they hated me at that moment. I gave them a look “I know, I love you and I truly wish it wasn’t this way” Mason and Ireland have Malignant Hyperthermia. They have a severe sensitivity to heat and excercise which can be fatal if they are not cared for. We are not able to go out to play in the summer. They cannot participate in sports. Mason can only participate for no more than 5 to 8 minutes of gym class. We have been in contacted with a doctor who is going to help us get answers. Their is a possiblity that we are dealing with more than just MH but it could also be just a mutation. We are waiting to see other doctors and hopefully soon find the answers. Until then we do what we have always done to keep them cool and teach them how to be aware of themselves and their body and know when to say when. What is needed though is awareness and having people speak out about what they are experiancing (MH patients). If you are interested here is a link to some info on MH.