Thursday, February 2, 2012

Glee-full Pain

The ball is rolling. I don't know if you notice, maybe you feel like I never stop talking about Down syndrome and Fiona, but I feel like the intensity that leads me to writing about it comes in spurts. Right now I am on a spurt. And with World Down Syndrome Day just around the corner, I don't think this ball is going to stop any time soon. So bare with me through my rants and deep reflections on life in the upcoming weeks.


I couldn't control it. It came over me so quickly, I immediately buried my tears in my hands and cried deep, heaving sobs until it was gone. " I didn't ask him what I really wanted to ask. I didn't ask him if he didn't want to go out with me because I have Down syndrome". God, it hurt so bad. I knew the words were coming, I had already seen the Glee episode once, but as I re-watched it last night alone, the words hit like a sack of stones, shattering every ounce of strength I had in me. These are the things that suck. Some day, at some point, someone is going to love who Fiona is, but they are going to not fall in love with her because of who she is. And its not because they are mean or cruel or even ignorant, its because Down syndrome makes her different, and her mental handicap will make her relationships with people different. It puts her on a different level on how people interact with her, even people who love her deeply. Just as you don't treat a child the same as an adult, she will always be viewed on that level. And as she grows and longs for independence, through the teenage years when we are all so defiant and want to take on the world, I know the fights and struggles that are ahead of us.These are the things that make me want to just run to a field and scream the pain out. The unfairness, the whys.  I no longer fear that Fiona wont be loved or that she will never marry, that misconception was quickly brought to light moments after really researching about Down syndrome, but I do fear the pain she will endure with most people loving her differently. I feel like a little kid throwing a temper tantrum in front of God and Him waiting patiently to comfort me again. I know His answers. But sometimes it just sucks.




My motherly instinct can sometimes be my worst enemy. The ability to protect my kids from this kind of pain is often out of my control, but I long to control it. If I could have Fiona, but remove her extra chromosome, would 1? Would she want to? There is a lot of pain and hardship on this road. But its only a part of the terrain. If I let it define the road, I would miss a lot of the beauty that grows along the path. This little poem says it best.



Down syndrome sucks. I know, I seemingly contradict myself all the time. Wasn't I just saying not a few days ago how I truly thought our world was a better place with it? And it does make our world better. But it does suck. No matter what beauty or blessings it brings, it undeniably is a harder road with many hurdles of pain. It is really hard for me to see older people with Down syndrome. The tears almost always build up behind my eyes- drunk tears, the ones that make you laugh as the fall from your eyes. Beautiful pain. See, for every person I see with Down syndrome, I see Fiona. The orphans over the world tossed into institutions at 5 years of age, I see Fiona. The 16 year old who wants to be asked to prom, I see Fiona. The 40 year old who's still under the care of her mother, I see Fiona. All the people with Down syndrome doing amazing things, I cry seeing them too because I know the extra work it took to get there. Its the reality of the hard parts of her life and they hit like a bus. Life is a LOT better for Fiona then it ever has been in the past, but its never going to be normal. I always know this, and it doesn't change the fact that she deserves every opportunity possible or that there are going to be sooo many more good moments then bad, but its painful to think about those negative things that come along with the extra chromosome. It just it.

I have been having the privilege to partake in a Beth Moore women's Bible study at my church, and came across this passage during my homework this past week,

Instead, God chose things the world considers foolish in order to shame those who think they are wise. And He chose things that are powerless to shame those who are powerful. God chose things despised by the world*, things counted as nothing at all, and used them to bring to nothing what the world considers important. - 1 Corinthians 1:27-28


* also translated those who are low born.


Its what I have known in my heart, but now I have it in His words. God has a purpose for Fiona, and I can tell you that she has already fulfilled it. And she will continue to pour blessings and open eyes to every person who enters her circle. My dad said it best, "Anyone who would consider Fiona as foolish, powerless, despised or counting for nothing has never met her. She has and is touching lives on a daily basis. Those of us who know her are better people because she is in our lives."


Can you send me a message, a comment, if Fiona has softened your heart or opened your eyes or given your strength?











7 comments:

  1. Another beautiful post, Shannon. I want you to know that although we are not very close, you and your family are always on my mind and in my prayers. Fiona is such a beautiful little girl who is going to have a life filled with love and happiness. You are all an inspiration to me. When I was pregnant I remember thinking often, "I hope that I am as good of a mom as Shannon. She is super mom!" :)

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  2. I am so sorry my friend. I know exactly how you feel because I have said it many times to myself...Down syndrome sucks. But, I am a couple years ahead of you on this road, and I will tell you the road only gets better. I used to get so upset and cry a lot at night about how much this sucked. But, as the days go on, God has made it right. My days of feeling that way are so much less. Yes, my Kristen's future may never be "normal" and I am so okay with it now. Fiona has already grabbed your heart, and it only becomes more intense as the years go on. I never thought it was possible when Kristen was Fiona's age, but it is. I look at what Kristen has already taught me, others, and that I know she will live a fulfilling happy life. Remember, it is not our dreams but theirs. Kristen will have dreams and she will live them...I do know that. Sometimes, as a mom, that is the toughest thing to remember. I love how honest you are in your feelings because you are not alone, and that is what I want you to know. I completely understand.

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  3. I am so sorry my friend. I know exactly how you feel because I have said it many times to myself...Down syndrome sucks. But, I am a couple years ahead of you on this road, and I will tell you the road only gets better. I used to get so upset and cry a lot at night about how much this sucked. But, as the days go on, God has made it right. My days of feeling that way are so much less. Yes, my Kristen's future may never be "normal" and I am so okay with it now. Fiona has already grabbed your heart, and it only becomes more intense as the years go on. I never thought it was possible when Kristen was Fiona's age, but it is. I look at what Kristen has already taught me, others, and that I know she will live a fulfilling happy life. Remember, it is not our dreams but theirs. Kristen will have dreams and she will live them...I do know that. Sometimes, as a mom, that is the toughest thing to remember. I love how honest you are in your feelings because you are not alone, and that is what I want you to know. I completely understand.

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  4. That scripture brought tears to my eyes...I reread it a few times. I have never come across it before. It's beautiful!!

    And I am sure Fiona has touched countless hearts...More than you will ever know about :)

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  5. Such a beautiful, beautiful and resonant post. That episode hurt my heart too. I've only recently been following you and Fiona, but know that you've both already touched me. And I feel exactly the same way about my own little Cora.

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  6. I love this post! I am still baffled at how much Down syndrome does really suck but at the same time how beautiful it is. I'm coming to the conclusion that I will never understand and that is okay. Fiona's beauty and smile always brightens my day!

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  7. Although distance separates us, Fiona and her hold on your heart, tugs at my own daily. Through your pictures, words and family, I am lucky to have a better understanding of a special community. Fiona is a gift from our Lord and I'm forever grateful to watch her grow.
    The Glee episode was a reminder of some pain associated with Downs but also the TALENT and SIGHT Lauren Potter has.
    LIFE is what you make it. Fiona makes life wonderful.

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