“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Tuesday, April 30, 2013

The Reality Is....

I've had something on my mind this morning. As I was scrolling through my Facebook feed when I got up, a link to an article a friend had posted last night caught my eye. It was a blog post written by someone who I am sure is more professional a writer than I am and who has been a parent of a little girl with Down syndrome slightly longer than I have. The title itself put me on edge somewhat, "My Child with Down Syndrome is Not a Gift From God." Of course, I had to go read it. There were some things I STRONGLY disagreed with.
Now, don't get me wrong. I fully believe that every parent has a different journey. I believe that all of us were "given" a child with Down syndrome for different reasons, despite the fact that sometimes its difficult to completely grasp what exactly those reasons are. And I totally get that our kids are not all the stereotypical angels full of nothing but sunshine and never ending joy. I live myself with a very real two year old hellion, who has the most magical smile, but who can also go from sweetness and light to a biting, kicking, smacking, temper tantrum throwing heathen in the blink of an eye.

 Lydia is, without a doubt, equal parts her father and myself. The good, the bad and the sometimes ugly. Down syndrome, while a large part of who she is essentially, does not in any way DEFINE who she is. She is, simply, herself. However, where I beg to differ with the a fore mentioned article is here: While she is equal parts her father and me, she also possesses her own qualities that are MORE than anything we could have ever given her. And I have to believe in my heart that God, in His infinite wisdom, bestowed and polished those qualities within her which would give her those things she requires to overcome the unique challenges she has faced, and will continue to face, in her life.

No one wants to hand their 13 lb six month old over for open heart surgery. No parent wants to sit in a waiting room for 8 hours, jumping every time a nurse or a doctor passes by, waiting impatiently for the news that all is well yet fearing the opposite. No parent in their right mind would choose that for their child, or themselves. However, having walked that path, I can say without a single shred of doubt that those hours in surgery, the painstaking process of repairing a tiny heart which would not have continued to beat without those surgeon's hands, without that ordeal, without the painful and long recovery filled with set backs, none of us, including Liddy, would be the same people we are today.
No one wants to watch their child struggle through hours of therapy to do the things that other children do without careful consideration and tons of practice. We work UP to major tasks that come so easily to other babies, younger than she is. I wouldn't have chosen this for her...However, it was the life given to us and her drive, her stubbornness, her sassy attitude give her the motivation to try hundreds of times if that's what it takes...and it makes the accomplishing that much sweeter. I've been the mom of a typical developing toddler and I can guarantee that, although the accomplishments were exactly the same milestones met, those accomplishments were, while causes for joy, never celebrated the way they are now. Maybe that makes me less of a mother to my son than I am to my daughter in your eyes.  In my eyes, it was all a matter of simply lacking the perspective I have now.
No one wants their child to be stared at, made fun of, or hurt. I choose to believe (and more often than not, I'm right) that Liddy gets stares where ever we go because, let's face it. She's gorgeous. She's captivating. There's a magical quality within her that makes people every where stop and gather near her for just a glimpse of her heart stopping smile or a bright bubbly "hi".

That's, again, part of who she is...the precious imp with the alabaster skin of her great-great grandma, with the big blue eyes of her mama, with the same nose and mouth as her brother but with a smile entirely of her own. Will she have her feelings hurt at some point in her life? More than likely. Just as more than likely some day some little punk is going to tease her for the very thing I revere so much in her, her uniqueness. But I hope, with all of my heart, that the self confidence and acceptance of herself that we are fostering in her now will carry her through those hard times. And if not, then she will always have her mama to cuddle her and remind her how very much she is loved. For exactly who she is, Down syndrome and all.

So with all that being said, I agree to respectfully disagree with the author who believes that her child isn't a gift from God. It's completely within your rights to believe that. As for me, I fully believe that my child is. One given to teach me, and so many others, lessons we never even knew we needed to learn before her existence. And for every single thing she has taught me...patience, unconditional love, confidence, pure unadulterated joy, heart ache, faith, tenacity, and the power of God's infinite grace....I am immensely thankful.


  1. Liddy is beautiful and every inch a little person in her own right and knows her own mind! Her spirit and character will carry her a very long way :) x

  2. I'd almost think you were writing about my little Alexis! <3

  3. I agree with you 100% and feel the same way about Kannon! We are blessed :-)

  4. Heidi, beautiful post! I haven't read the article you are referring to yet, but I agree with everything you said. Liddy is getting so big! That picture of her in the carseat is priceless

  5. I totally agree! Gabby had a speech therapist that once told me that the reason Gabby has DS is because that is my punishment for my sins. Of course my response was "So when they continued asking him, he lifted up himself, and said unto them, He that is without sin among you, let him first cast a stone at her" John 8:7 KJV. Needless to say she never saw my kids again!


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