May 11, 2010

RegRETT Syndrome

To the chagrin of tomorrow's self, I owe it to Nora to open the doors for a minute tonight.

Tonight we went to the painter's house, had dinner, and stayed late playing games. It was pushing 11pm by the time we got home. Coen was fast asleep and there was much to carry in. The snow was falling steadily (in May!) and the ground was a muddy mess.

Kristy headed to Coen's room with our sleeping adventurer. I carried our stuff in and went back to the cold, semi-dark van for my little Rett girl. As I slid the door back, the lights came on and lit up little snow flakes that drifted down to melt on her cheeks. She smiled the biggest, crinkly-eyed, toothy smile at the snow and her daddy and snuggled up to my shoulder in the short, cold trip to the house. There was no accusation in that smile.

I thought about her hopping after the other kids all evening, nobody playing with her. Her younger brother keeping up with Haley and sharing toys and laughing together. Nora, content just to be around the others. While mommy and daddy had fun with their friends and brother played with his friends Nora explored, alone, a world she can barely interact with. Later, while she enjoyed her bottle of warm Almond milk, warm drops replaced the chilly snowflakes on her cheeks as daddy's regret and guilt overflowed.

I wrote these verses for Nora shortly after we found out she had Rett Syndrome. I don't claim that they are good but they are inspired by a little girl who can walk through walls.

My little tree, in verdant grove it grew.
It seems that nature dealt a loser's hand:
For though the trees around stood tall and true,
mine struggled to survive upon the land

To other trees, new growth was easy play.
For mine each tiny branch was hardly won
It pained to watch the struggle every day,
but joy, we shared, at trials overcome.

Surrounded by the tall, the strong and free,
my tree, both sparse in leaf and frail in root,
may not produce in size or quantity.
Yet still, it grows the sweetest kind of fruit.

18 comments:

Gramma Myrna said...

What a wonderful and hard post. I too love the unaccusing way that Nora always looks at you and smiles. No matter if we have stepped on a finger (because she loves to be right at your feet in the kitchen) or if we just haven't taken the time that we should to cuddle her. She is always patiently waiting for the attention she knows she'll get. We're so fortunate to have her in our lives. She teaches us so much. I love her sweet smiles and cuddles.

Mo said...

What a beautiful and touching post - I'm quite teary after reading it, and touched by your honesty through it. So many life lessons we are learning from Nora and also from your little family. Hugs and love to all of you, Mo

Wifey said...

This one made my heart quite achy. I love the verses and couldn't put it into better words. I'm glad I have a husband who can speak my mind better and more eloquently than I ever could.

Thank you,
Wifey

Carin said...

The love your family shares is incredible. What a touching post. Your daughter is an amazing girl, and you are both great parents, never forget that part. Do we always get it right? wouldn't that be nice. I have no doubt you are both incredible parents and don't give yourself enough credit. Because really.... it's not every parent who can fly over their kids SuperMom style or play the guitar and sing to their children.

Anonymous said...

I love your poem and I hate your guilt, but what parent doesn't have guilt that they aren't doing enough for their kids? I have no doubt that God hand picked you two because you are the best parents for Nora! I pray for strength for all of you to keep giving her what she needs and envy the time you have with her and the lessons she teaches so sweetly!
Aunt RN

Carolyn said...

I also have some tears in my eyes after reading your post. I love the way you are loving 'our' Nora...Give her a big hug from me!

Anonymous said...

What a precious post....yes, one to bring tears... Thanks for your honesty which helps us to understand Nora and your situation a little bit more. Linda

Gamom said...

Thanks for the post. I can see that smile and those eyes. I love that Nora communicates, without words and without gestures. your verses express exactly how I feel about Nora. I hope my heart and mind are open to all that she has to teach me.

Larry and Glenda said...

Lucky, lucky Nora to have you guys for parents......

Jocelyn said...

That's a very nice poem.
None of will ever know exactly what it is like being Nora's parents...I think you guys do a wonderful job. She is one of the happiest little kids I've ever seen.

Michelle said...

This poem is so personal, beautuful, and painful.I can't even find words to express much, but thank you for posting it. So many of us think of ya'll so much. Nora certainly is fortunate to have you for parents. I'm sorry for the ache you feel as parents.I love the sweetness and adoration in your description of her.
Love, Michelle and Morgan

Anonymous said...

Wow... Mo called to tell me I needed to get on and read your latest post, and I'm glad she did. Words can't realy add to what others have already said, but just wanted to send a hug your way. Your openness and honesty is and will continue to be an asset to Nora and Coen. You amaze many of us and leave us feeling humbled by your parenting.....
Much love and care, and thanks for this touching post.
Justin & Melody

The Rancher's Wife Kate said...

My thoughts have been expressed by so many others. We love your little family, and can't wait to see all of you at Chug hopefully.

Anonymous said...

Thank you for this very touching post and all your honesty.

Ralna

Sandy said...

What a gift you have in being able to express yourself and share with us. Nora is unlucky in some ways, but she is very lucky to have such loving parents.

ant Vik said...

Special needs kids just seem to have the greatest parents. It seems that God had a purpose, and will continue to teach all of us through your little girl. Thanks so much for this post!
Vicki

Christa said...

What a wonderful post. I just shared a little tear with you and understand more than words can say that feeling of guilt and regret. But Nora seems like a wonderfully happy little girl and I have no doubt that while she got the short end of the stick genetically, she has a huge blessing in her parents. I think God gives us more strength than we know to deal with every day. Thanks for sharing your heart.

All American Family said...

What a wonderful, heart-felt post. I just found your blog this week from Crystal Cronk. She and Warner live about 15 minutes from us now. I met Kristy, Nora, and Coen last year at Texarkana. Our daughter, Lia, is only a month younger than Nora, so meeting her was extra special. I have thought about all of you so many times over the last year but didn't know how to contact y'all just to let you know I hadn't forgotten about your little family. I'm so glad to have found your blog now and will continue to enjoy watching your kids grow. Nora (and Coen) have cheerleaders down in Texas!