I wish by Paola Jofre
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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.

http://www.mhaus.org/presidentsblog/post.cfm/ma...

Tags

doctor, malignant, hyperthermia, blue, fun, girl, children, laugh, boy, sun, child, ice, sad, tears, test, fall, heat, cool, running, cry, play, angry, sick, awareness, information, muscle

Comments

  • © Karin  Taylor
    © Karin Tayloralmost 6 years ago

    i love the way you’ve captured the joy of this moment Paola, and if i think too much on the subject, my eyes well with tears….for i cannot imagine the heartache you as a mum must feel, having to restrict your littlies from activities they want to do, and are watching their peers….only when they are older will they really understand, just that it was as hard for you, as it was for them…. my heart just goes out to you all, and i hope the frustrations will be eased in a paramount way shortly, with news from the tests…answers, reasons and more understanding of the kids conditions, can only ease the stress and bring relief… I’m thinking of you all, you beautiful family :) xoxxoxoxo all my love xxoxoxoxox karin

  • :o) thank you Karin :) I really try not think about it to much otherwise i would spend my time crying…today was an emotional day..i had a meeting to prepare for the school meeting tomorrow for my oldest Child Napoleon and Mason and Ireland came up and I broke down….I have been keeping it in …i don’t want them to see how much it hurts…if they see me strong then they will be strong…during the summer Mason had a close call and I did not hold steady…he felt it from me and started to panic…stress is not good for them it can trigger an MH attack … i had to calm him and me down and cool him down as fast as possible…he kept crying out “will i be okay” he looses it more than Ireland and gets very scared …since then though we are much more careful…everyday we learn something new and figure out a plan…this helps him to stay calm and helps me as well……it is really hard to watch familes and children having fun outside…but i try very hard to make it fun for them inside….Ireland loves to put on magic shows,color and play chef…Mason loves to watch football,write and bug his older sister :) after today i just really needed to get it out and my art is my outlet….thank you Karin….your comments truly mean a lot to me :)

    – Paola Jofre

  • Lam Tran
    Lam Tranalmost 6 years ago

    Fantastic capture my friend, Excellent use of image and great treatment, well done my friend, Great poem too.

  • Thank you very much Lam :)

    – Paola Jofre

  • kazcook1972
    kazcook1972almost 6 years ago

    Your words match the image perfectly Paola!! It must be so very hard for you as a mother, but I am hopeful for you that the doctor finds you some answers and that all will improve in the future. How very horrible it must be for kids knowing that they’re not able to join in with games and fun with their friends. They may not understand your actions now Paola, but one day in the future they will appreciate how you looked after them :o)

  • Thank you so much for your kind words Karen :) We take it day by day :) and always practise “better safe than sorry” winter is here now so extra care is given so they do not overheat in there snow gear…i still go to school for recess so he can play…infact today after weeks of them being so sick he was back in school and got to go out to play….i was in the mix and ended up being Mr.wolf with Mason and his friends…he had a blast and I was at ease knowing that i was there to make sure he would be okay and also watch to see how his body reacts…….I pray that the doctors find nothing and they out grow this :)…….but for now….the doctor has written up the letter to the childrens hospital and we wait….thank you Karen and I apologize for the delayed reply…….i have not had much time…..they have been sick and Mason just had his 7th birthday on the weekend and i have also been working on my book…….so much to do …so little time :)

    – Paola Jofre

  • Keith Reesor
    Keith Reesoralmost 6 years ago

    My heart and prayers go out to you and your family. There is always hope. Wonderful image and poem!!

  • Thank you very much Kreesor for your kind words…..you guys were there and are there for me when i am feeling overwhelmed by the situation……..it means alot to me :)…I am really happy hear at red bubble…..a wonderful group of supportive friends :)…

    – Paola Jofre

  • flower68
    flower68almost 6 years ago

    so touching.sorry for your troubles.

  • Thank you flower for stopping by and your kind words :)
    I was having an overwhelming day when i made up this image…..sometimes it feels like too much……but i belive that everything happens for a reason and they will find answers….they will be okay……they may not be able to play outside in the sun….but they will have fun :)

    – Paola Jofre

  • kdm22222
    kdm22222almost 6 years ago

    wow…what an amazing piece you have created of such a loving and touching subject…Im sorry for the srtruggles and sorrow…

  • Anthony Mancuso
    Anthony Mancusoalmost 6 years ago

    wonderful image and treatment Paola, excellent work. Great writing too!

  • georgiaart1974
    georgiaart1974almost 6 years ago

    Very excellent!!

  • Solomon Walker
    Solomon Walkerover 5 years ago

    lovely work!

  • susi lawson
    susi lawsonover 5 years ago

    Bless your heart, had no idea you had these personal challenges going on n your life!
    They are blessed to have a Mum with such a good attitude and positive outlook…
    wishing you and your children a wonderful future together.

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