We want to say a big congratulations to the winners of our Global Genes Project June Poetry Contest!
Congratulations to our First Place Winner—Julia Boonak!
Julie’s poem (which you can read below) was a great poem displaying the theme of perseverance. Her prize pack includes a $50 Target Gift Card, a Global Genes Hat, a Global Genes Pin, Global Genes Sticker, and Global Genes Ribbon.
Our Second Place Winner goes to — Cath Hammond!
Cath’s poem “Guts” is a strong entry describing a child’s fight against rare disease. Her prize pack includes a Global Genes Pin, a Global Genes Sticker, a Global Genes Hat, and Global Genes Ribbon!
Our Third Place Winner goes to—-Kristen Craig!
Her prize pack includes a Global Genes Sticker , a Global Genes Hat and a Global Genes Ribbon.
Thanks to all who entered and stay tuned later today to see what our July contest will be!
Perseverance
By Julia Boonnak
My
son
climbs
mountains
every day. He
doesn’t know any
different and he doesn’t
have a choice. He hasn’t got
a big roar but a tiny little voice. He
finds life easier when it’s full of fun and
play. He shines like all children do and does it his way.
Rare
disease
families climb
mountains every
day. We are required
to work harder and be better
than our best. We learn to be
nurses, therapists, mentors, coaches,
there is no time to rest. We advocate for
research and we want it straightaway. We’ve
got each other to share with and you know what? We’re OK.
A
rare
global
community
climbs up mountains
every day. Roped to courage
up in front and fear pulls back the
rear. Never give up searching but the
end may remain unclear. Slice feet, cut legs,
draw tears you sweet but wretched pathway. You’ll
never take our hearts our hope and you’ll be beaten someday.
___________________________
Guts
By Cath Hammond
I’ll tell you what gets me. It’s the
Courage of the child. It’s the
Hands-down iron-clad soul of that kid.
Ever
Undefeated. I know her. I see the
Clutching forward. I hear the
Strangled little moans and whimpers. But
She
Is still bang up for it. Swallowing back the
Treacherous sounds of complaint.
Busy busy busy.
She puts punch into the word
Tough. She is the child of my heart
All my pride and joy. Nothing like
Her. Guts
Like you’ve never seen, that kid. I see
The smooth little fists clench. The cheeks
Pale. And then it’s just pushed
Back.
Back to playing, climbing, reading, painting,
Riding, making a mess and pestering
That Poor Dog.
In the midst of all my fears for
The future. For her little life
I can see that this brutal, humiliating
Disease
Is giving her an incomparable gift. She
Is bombproof. My beautiful baby. Pain
Will not fell her. Disappointment does not claim
Her.
She is incomparable, indefatigable, unbeatable
Brave, beautiful and brilliant. My bookworm. My
Unstoppable force.
Love her.
_______________________________
Untitled
by K. Craig
Today is a good day, I really must say
Sinuses dry, no need for my spray.
Joints a little sore, but only so slight
Take the dog for a walk, yes I just might!
Into the shower, my head does’t hurt
I would even call this an energy spurt
Put on my clothes, dry my hair
Look out world I am almost there
Loot at the TV it’s covered in dust!
It will take just a second, clean it I must
A quick brush and dust up my nose
Now, I need the spray I suppose
For just a minute I need to sit down
I am going to do it, I’m going to town
Isn’t there something I needed to do?
Oh no, that’s right it’s a day for Sub Q.
Get out the meds, hook up the hoses
Today is no longer, smelling like roses
I just need to lie down and go to sleep
When did the fatigue hit me so deep
The headache is now smarting
Infusion site swelling and itching is starting
I’d better call mom to pick up the kids
As my great day just hit the skids
Home from school my teen runs in
Apparent great day, I can tell by her grin
She stops short at the sight of my pump
And I see her shoulders slightly slump
I’m sorry Mom that you have to go through this crap
I wish I could give those globulins a slap.
Don’t worry about anything Mom, take it easy, just rest,
I’ll clean up, because, as you know, I’m the best.
The phone rings and she says, I can’t my mom’s sick
Then she hangs up with a soft little click
I tell her I’m fine, it’s ok I want her to go
She smiles, shakes her head and tells me no
There will be other days I can go to the mall
Today I need to be here in case you might fall
She cuddles up next to me, jokingly gives me a bump
My eyes well up, in my throat there is a lump
Mom, you have always been there for me
It’s my turn to help you, don’t you see
Now be careful I just might make you smile
I want to hang out and chill for a while
There are days that this illness, I really despise
When I see the worry in my daughter’s eyes
She will be leaving for college real soon
I have CVID but she still thinks I hung the moon.
Even though things didn’t exactly go my way
Today was a good day, I really must say
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