Saturday, June 4, 2011

She should have been...

I met a beautiful little girl tonight. She had silky, curly blond hair held up by a pink barrette.

Her chubby little legs were showing beneath a beautiful white two piece sundress and her feet were sturdily held in a pair of crocs.

Long and lanky, this gorgeous little angel was effortlessly running around, playing happily and smiling intelligently at the world. Her dark brown eyes sparkled with mischief and her curly head whipped back and forth quickly as not to miss a thing.

As she ran in circles around my Chubbs, I curiously asked the mom- "How old is your little girl?"

while holding carefully on to my stationary 16 month old who was slowly perusing the crowd, her cognitive delay subconsciously affecting her response time to the noise and excitement.

"16 months"

As we discussed further and I discovered that her baby was actually two days younger than my little girl, it was all I could do to keep tears from welling up.

Yes, I long ago accepted that my baby has Down syndrome. Yes, I know this is God's perfect plan for our lives.

But that doesn't make it any easier when every once in a while, I am reminded of how it should have been.

Addison should be running around. She should be communicating and be just like that responsive as that didn't-miss-a-thing child. She should have Aaron's thick, curly hair. She should be tall and slender. She shouldn't have constantly crossed looking eyes. We shouldn't have to wonder if she understands basic commands and statements. She shouldn't still be using mostly a bottle. She should be super smart and already figuring out ways to outwit her outdated parents. Her blue eyes should shine with intelligence. Her chubby little hands shouldn't be so small, and her tiny feet should be big enough to hoist her body around easily as she runs from activity to activity. She shouldn't have to work so hard to do the littlest of things. Her future shouldn't consist of such worry and fear.

She should be the perfect daughter that I first envisioned when Motherhood first approached me. She should be the perfectly lethal combination of my husband and myself with the promise and potential to go farther than our measy Master degrees. She should have the normal number of chromosomes with a normal body built and designed for becoming a mother herself someday. She should be a combination of every Disney princess in training, prepared to be beautiful, smart and ready to rule the world.

But that's not the way things happened for my daughter.

When I hear the name "Addison" the tall, slender beauty that I used to imagine has been replaced by a new image.

The image of a little girl with a warm smile of happiness that obliterates her entire face. This same smile is enough to take away the worst of days and the biggest of nightmares. The stress flies away, the heartache ceases. Because you were just graced by a Chubbs' smile.

If the smile manages to turn into a "bass face" where the mouth opens in mock fear, every tooth is shown off while the eyes widen in play, hoping for a similar face in return from you- well, then you have been placed inside her circle of trust, a place desired by many.

Blue eyes that melt your heart, round cheeks mostly flushed a slight red, fuzzy strands of hair, short limbs that work extra hard, teeth sharp enough to take down a trained attacker, tiny hands curiously exploring the world around her, toes with an extra space, a heart of pure gold...

This little girl is getting stronger by the day. She works harder than anyone I know to drag her belly-scarred by a g-tube-off of the ground and high enough so that she can practice taking some steps. Every muscle is used, every limb engaged in the taking of these difficult steps as she seeks her next step towards independence.

She loves, she hugs, she chuddles, she bites, she is naughty- little miss chubbs has more personality than she knows what to do with.

No, things are not as they should be.

They are better.

I didn't realize that I would be given a new dream. A dream to help my little miss chubbs achieve her personal best. A dream to understand true acceptance and pure love. A dream in which I use my fighting, competitive spirit to help make this world a better place to live for those whose lives don't fit the norm. A dream in which my selfish desire for "the perfect child" is replaced by the humbled awe of the gift that I have been blessed with. A dream in which I learned that intelligence comes in many different forms.

Addison- I see a beautiful little girl with potential, intelligence, grace and beauty- who somehow miraculously happened to be given to me.

My little girl isn't the one running circles around the playground, masterfully talking, laughing and communicating.

My little girl is the one sitting silently in the middle of the circle, watching slowly and bringing smiles to faces, love to hearts and the ability to see beyond the physical/mental constraints that so many of us hold perfection to.

No, things are not as they should have been.

And I am thankful.

When I see that child two days younger than Addison, exemplifying everything that she should be, yes my heart will initially sink in self pity and sadness. But one glimpse back in my baby's face, I am reminded of it all once again.

I truly have the perfect baby.

side note: I think they would do well to make a Disney Princess who didn't follow the normal of perfection...A Chubbs McPhee...anyone???


  1. Deanna,
    I say this often on your blog...but it needs to be repeated!! I have never met you, but I am moved by your faith in God and the gift He has given you. Yes, Chubbs is a gift... But I mean your gift of sharing your feeling as you do! Someone who is hurting will come across this at the right moment...and you will have been used by our Creator to comfort where comfort is needed! Thank you for your heart! Chubbs is PERFECT!!!!
    Tammi Cartwright

  2. You and Aaron are totally blessed to have the angel that God as given you! She is amazing! Thank you for sharing your and her story with us! I have not met her and have not seen you since you were a little girl at Mt Carmel yet your writings make things feel like we see each other regularly! You have been a blessing to me and my kids as we read about the wonderful things God has done in your lives and the precious one "chubbs". She is AMAZING!!!!

    Wendy Watkins Stinson

  3. It is still hard sometimes. Once in awhile I let myself think about what my household would be like if Calvin didn't have Ds. He might be crawling everywhere, playing with his brothers more, etc. etc. But, then I would have what I do, and I don't know that I would want to live without that either!

    Yes, a disney movie with McPhee would be great!

  4. Aw, this made me all teary. There are still days where I sit and think "Really, did this REALLY happen" and then I look over at Russell and I just could not for the life of me picture it being any other way. I love him so much and all of this was just meant to be. Beautiful post Deanna.

  5. Thank you for your wonderful post and for sharing. I am looking forward to meeting Miss Addison when I can come up your way again.

    I am in Louisville grading AP U.S. History exams and am reminded that in the academic world, all are not equal in ability and opportunity either. I have graded some papers for ESL students for whom writing three hours is a triumph of spirit.

    I'm glad you were able to get away to Maine.

  6. There are times the "should have been" creeps in, but I am quickly reminded of the things I would be missing out on if that was how things had turned out!

  7. You and your daughter are such an amazing inspiration to me these days. I just wanted you both to know that.


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