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My Pitty Party Poem


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I finally mustered the courage to put this on here after reading Tuesday's post about feeling aslmost normal in the winter time. I did the same thing with my son - on his first bad day this year all I could say to myself was "I almost forgot that he was sick" - it sent me into the same mourning period as when he first got sick but with some added vengance against summer time(I was 5 months pregnant when he got sick I and am 4 months pregnant now 2 years later)- anger is certainly easier to handle than sadness. A bit of history - we live in Virginia and last year was the hottest summer ever and we were new to this and we didn't cope well - He got very depressed - we have a plan for this year. I have never publicly shared any of my poetry because it didn't pertain to others but seeing how many people feel the same way about this on here gives me reason to share - THANK YOU all for your strenth and courage and sharing of such an emotional experience in your lives. This is about my 14 yr. old son with POTS.

I Almost Forgot

November, December, January - what wonderful days they are

The oppressively hot Summer seems so very far

Frolicking through the snow that others hate with a passion

Put the spring back in his step in a seemingly odd fashion

The sadness and the worry were replaced by so much joy

And I almost forgot that he was a very sick boy

Sweet fruitful spring, how I used to love you so

With your gentle inviting coolness and the joy of watching things grow

But now I despise you - not for what you have done

But for the dread that you insight over a battle that can't be won

"Hurry up and fix the riding mower Mom, It's almost too late"

He prepares for the onset of his unavoidable fate

Headaches and fatigue with a constant stomach ache

"Mom, I don't know how much more I can take"

I Curse You vile malicious summer time!

The way you ravage his precious body should be a crime

Last year you broke his spirit and robbed him of his hope

But this year will be better because we have learned to cope

Hurry back old man winter with your theraputic snow

So I can see my sweet boy smile as he waits on the ground below

Kyler's Mom

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Kyler's Mom,

Love the poem! Once again, I say my son is the odd ball. December through March are horrible for him and he does so much better in the spring and summer. It's not that he spends a lot of time outside in either of the seasons, but he seems so much closer to normal in warmer weather.

We look forward to spring and summer. His school has given us ESY (extended year services) to help out over the summer since he doesn't get much work done over the winter.

Christy or Cody's Mom

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Love the poem. Christy, you're not odd, winter was horrible for us also. SOMETIMES he did get out and did enjoy a couple of times sledding but it was very rare. Mostly he couldn't get off the couch. I wonder how he will cope with hot weather. Not good, I am guessing. We see now that last summer he had trouble being outside doing his mowing jobs and it puzzled us, now we know it was pots, even then.

Isn't is strange how some are so severely impacted by weather? Some can't take cold, some can't take heat.

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Beautiful poem, Kyler's mum, it brought tears to my eye. You express so beautifully the strong and deep love you have for your son. I really relate to this poem as I am a bad in hot weather, better in cold weather Potsie. (It's cold here in the Southern hemisphere where I live and I am loving it). I also find writing poetry therapeutic and transformative at times. I hope that having a medium by which to express your deeply held feelings is a source of comfort to you.

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Beautiful poem and what a loving and giving mother you are with the depths of heart and soul. Tears are running down my cheeks as I had a bad weak since the weather is warmer here in the North. I don't tolerate heat well and can't wait for the cool weather again. Thank you for sharing as it expressed exactly how I am feeling with not looking forward to summer months. :( A great big hug to you.:)

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Thanks for the poem, as I sit here too sick to go out to my friend's house today, ha, I can relate..i'm so angry at it.. i know to expect it, but i'm still bitter/frustrated. I've been feeling awful with the heat this week. I haate the warm weather, and when people walk around so happy and say isnt the weather great, ha, i know it's not their fault, they're normal, but i just want to scream! lol;-)

Each year, I feel it gets worse for me, my body has a harder and harder time... the dizziness/faintness is at an all time high right now..though i'm never symptom free and my symptoms were still disabling in the winter, it just gets almost impossible to manage in the summer.. i already had to break out the cooling vest indoors:p

Hang in there, and hoping for cooler weather soon!

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I really feel for you caterpilly, mwise and other potsies who are going through such a hard time with spring going into summer. I wish I had superhuman strength to blow the cold antarctic winds from the south right up to you. I'm the same caterpilly, even in the depths of winter I am not symptom free, but at least I feel a bit more comfortable. I really hope it is not a bad Summer for you guys this year.

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So beautiful, KM- brought tears to my eyes.

I am one of those who feels so much better in cold weather too- but my body is getting sicker with even that. My vasoconstriction is awful in cold weather. My fingers and toes sometimes even turn black.

Heat is awful for me too :rolleyes: I'm Goldilocks. Everything has to be just right.

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Thank you all for your love and support. This is so difficult to deal with-I wish that it was me and not my son that had this. We were supposed to go to a cook out today at a lake and he had plans to stay in the water and play games inside in the ac if he felt bad but he went to his bf's bd party yesterday and he is too sick to do anything today - he didn't even participate in the sleepover part bc their house has wimpy AC. I wish that we could just live in Alaska every summer and here in the winter - maybe we will win the lottery. I feel like the good weeks are over until about late October but I am going to do my best to make them as good as they can be. Hoping and praying that everyone feels better. Thank you again for understanding and listening to my emotional rant.

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