Friday, October 14, 2011

Life is Normal

I think about Down syndrome all the time. Because it is on my heart. And thoughts will pop up through out the day- worries about the future, sadness about delays- but being 100 percent honest, I don't usually think about it pertaining to my daughter. It doesn't consume me. I don't look at her and think every time, "She has Down syndrome" Sometimes, yes I do. But the majority of the time, everything seems normal. And it doesn't make me sad anymore to say "My daughter has Down syndrome" because I now understand my daughter isn't Down syndrome, she is Fiona. Crazy, right? That I didn't always understand that. But in the beginning it is hard not to let the diagnosis define, even through the crazy amount of love you are feeling.



The only time I really think about it is when other people notice the delays. When I am confronted with that "how old is she" question. Today, a doctor guessed she was 5-6 months. And I smiled and said, "No she is 14 months". His response was "I am sorry". I still don't know what he meant by that. Was he sorry he guessed wrong? Was he sorry because he then knew something was,  per say , wrong with Fiona? Peoples first response is to be sad. To pity. Smiles turn to frowns, shoulders sink, its like I just told then she was going to die in a month. When I hear of someone just getting the diagnosis, my first uncontrolled response is excitement. They say the baby has Down syndrome, and I smile. Because their world is about to be rocked. In so many amazingly, hard, wonderful, painful ways. The best feelings in life are the ones that are felt the most passionately. I came across this quote today and fell in love...

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen."Elisabeth K├╝bler-Ross

We scream from the mountain tops how the harder path taken is so much more beautiful. But its really not something you can understand fully until you let yourself go down the path of the unknown (whatever that struggle, pain, or different thing may be in your life). In just one year, Fiona has taught me to love deeper, hold tighter, work harder, be stronger, and be comforted in the fact that God is in control. Sometimes you need something to shake you to wake up whats inside of you. And if we could go back in time, stop that extra chromosome from attaching to her cells, I am not so sure if we would like to be "normal" (although I would love for my daughter to be truly healthy). Maybe, I am just saying that I want the best for my daughter, but who is to say this isn't the best? Not normal, yes, but you've yet to convince me it could be better. Beautiful people do not just happen, they are formed and molded perfectly by the Hand above, put in specific circumstances and given specific strength. Its a beauty that is so stunning, it changes lives. 

Open your mouths to taste, open your eyes and see... how good is God. Blessed are you 
who run to Him. Psalms 34:8


4 comments:

  1. I could not agree with you more on all you said. What a journey we are on...

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  2. What a blessing...your thoughts remind me of a quote I heard on the radio this week...God does not protect us from what will perfect us...I am sure Fiona is perfecting you daily as you posts are definitely challenging me. I know my kids perfected me, especially with an ADHD child. You learn to love them for the person they were created to be, not who we or the world think they should be.
    We have a friend that has a Dance weekly for special needs adults. I love to go help and watch the joy and freedom as they dance, laugh and sing with each other.
    Keep writing and blessing...
    Love to you all...

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  3. Shannon, I cant even tell you what reading your post do to me. They are simply beautiful...And they are straight from your heart which makes them powerful and moving. I don't know anyone who writes quite as eloquently as you do...And I mean that!!

    Loved this post...And I loved that quote!

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