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?