Wednesday, January 9, 2008

"I...Want...Flowers"


This handsome young man is our son, Jonah. We named him after our favorite prophet. As you can see, he is on a wheelchair and has a trach. He was born with a rare disease called Myotubular Myopathy. It effects the muscles. He is perfect, only weak. He needs help breathing and he eats with a g-tube. We are honored that God gave him to us. He obviously is our pride and joy.
In this post I want to honor my mother, she is wonderful. Not only did she give me a kidney a few years ago, she has been instrumental in helping us care for Jonah. I would like to share with you all, a poem I wrote for her.
"I...want...flowers", he signs, while we are on our way home from the hospital.
He presses his small fingers to his nose,
Wrist red and swollen from the three blood tests,
And pretends to smell imaginary Buttercups.
He inhales them tiredly,
Drained from the bloodletting,
The turnicate,
The second stick of the needle after the collapse of the first vein.
At the hospital my mother and I watched helplessly.
It is a chore to extract his blood.
It turns and twists within small tunnels.
The needle searches as if for a rare nectar,
As if he were a flower and the syringe the tongue of a butterfly.
That would be fine,
Except this one stings as it drinks him.
He sat still as they pricked his hands.
I remembered how he looked up at my mother,
Face turned to a frown, a wince, and then the quiet gasp
As they pulled out the stopper
Slowly bleeding him into the plastic vial.
Now exhausted,
He sits in his wheelchair, strapped to the van his grandmother drives.
He asks her for flowers...
And my mother stops.
Stops as if the world depended upon it,
Stops as if it would somehow save his life.
She pulls over to the side of the road,
And in her dress
Bends down properly...only because it is proper to bend while picking flowers...
And hands him three Black-eyed Susans.
And I saw for the first time that day,
His face opening up towards my mother...
As if she were the sun, and he a Lily of the Valley.

16 comments:

Anonymous said...

Hey Jennifer
I love the poem!!! It's so sweet. I almost cried. Almost but then.....beep..beep..beep...LOL:) But seriously, its beautiful. I didn't know you were a poet.

Portia

Mrs. J.D.Darr said...

Portia,

You're such a sweetheart!

About the serial killers...I will not let this blog make me forget to do my o.c.d. before I go to bed! :)

Anonymous said...

Dear Mrs Darr
I read your poem this morning (found by Google Alert for "Myotubular Myopathy") and cried. Having a son with xMTM myself, it hit a real note with me : you have very cleverly and articulately captured the brave spirit of our children, our determination to go to the ends of the earth for them: the compassion we feel. This poem is simply amazing, and really really beautiful. With your permission, we would love to include it on our website, as a tribute to Jonah: http://www.myotubulartrust.com

One day, we hope that children like Jonah won't have to suffer from myotubular myopathy, and that a cure or treatment will be found.

We wish you and your darling son all the very best.

With warmest regards,
Wendy
Parent and Trustee,
Myotubular Trust
A European Charity registered in the UK No: 1113809
contact@myotubulartrust.com

Mrs. J.D.Darr said...

Oh Wendy,

Thank you so much...you're making me cry. You are more than welcome to include the poem on your website. I will visit it myself and I will email you! :) Thank you for taking the time to read and write. I will be praying for your son in my daily prayers, if you don't mind. May God bless you and yours, Jennifer Darr

Toni said...

Hello Jennifer

Wendy Hughes just emailed me about your website and I thought I would just drop you a short note to say I had visited.

Thank you for saying the Information Point can share your wonderful poem, I will try and get something posted in the next few days and if you would like me to set up a page for Jonah as well, just give me a shout.

Take care

Toni xx

The Information Point for Centronuclear and Myotubular Myopathy

http://centronuclear.org.uk

Anonymous said...

Hello Jennifer

Wendy Hughes just emailed me about your website and I thought I would just drop you a short note to say I had visited.

Thank you for saying the Information Point can share your poem, I will try and get something posted in the next few days and if you would like me to set up a page for Jonah as well, just give me a shout.

Toni xx

The Information Point for Centronuclear and Myotubular Myopathy
http://centronuclear.org.uk

Mrs. J.D.Darr said...

Toni,

Thank you, thank you, thank you! I am honored that you want my poem on your site! You can absolutely set up a page for Jonah! He would be honored.

Thank you again! and God Bless,
Jennifer

Anonymous said...

Hello Jennifer

Thank you for signing my guestbook.

I have set up a page for Jonah at http://www.centronuclear.org.uk/theinformationpoint/jonah.html today with a link back to your blog. I hope what I have done is okay for you but please let me know if you want me to make any changes.

If you want to expand on what I have written, please go ahead and jump right in. Personal experiences are a really important part of the website, not only do they provide much needed information but at times, give hope to those that may have lost it.

Thank you once again for allowing me to set up a page for Jonah and for allowing me to share your beautiful poem with the world.

And give Jonah a big hug from me in the UK too.

Toni xx

The Information Point for Centronuclear and Myotubular Myopathy

http://centronuclear.org.uk

Mrs. J.D.Darr said...

Toni,

I gave Jonah a great big hug from you :) You did an excellent job with the poem! It looks perfect. I will put a story for you when I get everything together! Thank you again for including us on your web site. Would it be okay if I asked you to email me an email address that you want me to send any notes to? :) And blessings from the USA!

Jennifer

Toni said...

Thank you Jennifer.

You are welcome to email me at toni.abram1@btopenworld.com or centronuclear.org@btinternet.com.

Looking forward to hearing from you again soon.


Toni xx

Mrs. J.D.Darr said...

Toni,

Thank you! I will be writing soon!

Anonymous said...

Hello Jennifer

Thank you for the second poem. It is also beautiful.

You sure know how to tug at the heart strings.

Thank you once again for sharing. I have updated Jonah's page and added the poem this evening.

Much love.


Toni xx

http://centronuclear.org.uk

Anonymous said...

hello jennifer,
i found your poetry on the myotubular trust website. the way you describe your son is beautiful, the small details and intricacies spot on. i lost my two year old son who had mtm this past summer, but your words make me feel like he is right in front of me. thank you.
kim

Mrs. J.D.Darr said...

Oh Kim,

I am so sorry about the loss of your son to mtm. I pray that God would bless you, keep you, and give you grace. That I was able to minister to you with the poem, humbles me. I am honored that you were touched by it. Kim, I will include you in our prayers, and I pray that you include us. At times Jonah's future overwhelms me, and then I remember that Jesus teaches not to worry about tomorrow, each day has its own troubles. And that God gives us grace just for the day. "His mercies are new every morning." Our comfort is, that our boys are safe with Him. With all of the medical advances, I worry Jonah will outlive me :) and then I think, "Who will take care of him with his trach, and g-tube, he is so helpless." But, again, I must trust. Kim, God bless you. Your sweet son forever lives in your heart...and in Heaven.
Love,
Jennifer and Jonah

Anonymous said...

I stumbled upon this today....
wow wow wow..... I miss you all.
Tell Jonah aunt Laura loves him and wishes she could bring another ballon to him and the boys are so big he would not even recognise them. Maybe he can come to Nathans graduation this year.
Love you,
Laura

Anonymous said...

Thanks Jen. My shirt is totally wet with tears. I miss you guys more than can be measured. Thank you for everything.

Love,
Lene