Tuesday, March 15, 2016

The Road

Getting a prenatal diagnosis of Down syndrome was painful. I had already started to picture what life with my new baby was going to be like and I knew Down syndrome was going to change this imaginary life I had started planning in ways I was initially resistant to. I was going to have to deal with things I never wanted, walk down a road I never dreamed of going, and it was painful to have to face something new, to walk an unfamiliar road I didn't plan for. 

It's wasn't until I was actually on the road that I realized what it was really like.  That while covered in bumps and cracks and at points gapping pot holes that threaten to ruin you, there was so much more. With your head up and eyes not fixed on simply the road, you notice it is lined with roses and lilies and sweet berry bushes, and huge oak trees that shade you, and comfortable benches were you can rest. More importantly, it is scattered with travelers you didn't even know were down on that road, that help you over the pot holes, and point to the flowers and keep you so deeply engaged in conversation, community and laughter that those cracks and bumps that once looked so ugly and terrifying, hardly are noticed. And then to top it off, you have a pretty amazing person right at your side the whole journey, someone who you realize is a person separate from the bumps and cracks, who is the heartbeat of the road but not the road itself. With your head up, you can see them for all they are- an individual not a diagnosis, a personality not a stereotype, a unique and precious irreplaceable person in your life. 

It takes some effort to realize all this road has to offer. You have to lift your eyes up off the road. That can be easier said then done. I believe in a God who has a rhyme and reason for everything, a God with a master plan for a greater good as well as a plan for each and every life. Lifting my eyes up to Him comes naturally for me and therefore seeing above the road quickly came in view. However, not all people have a hope in a big picture plan. A plan or purpose above a different or difficult road is absurd, impossible or merely wishful thinking and therefore there isn't much motivation for looking up. I regularly make the mistake of reading comments on threads I know are bound to hurt me. I try to put my self in others shoes, understanding why they come to the conclusions they do because of the way they think, and when their thinking is very different then mine their thoughts are bound to sting my heart. Whenever someone posts something pro life regarding to babies with Down syndrome, there is always a nay sayer spewing comments with the "r" word, "burden" and inevitably the argument that it's not a life worth living, for baby or parent. And then often I find myself writing lengthy replies to their comments, hoping to show them another view point of the road, but then deleting them before ever posting. I reread what I typed, put myself in their mind and figure out exactly how they will argue back at me and because our core beliefs differ too much, my logic will never seem like logic to them.  I know my words will not change this persons perspective because they have their head down.

I wish I could say simply having a child with Down syndrome forces you to lift your head up, but that is not always the case. There are families who do view their child with Down syndrome as a burden, or regret having to care for an adult child. But it's a choice to keep your head down. I can't wrap my mind around not choosing to lift my head up. There is so much commotion and so much to see off, over and on the road! I live to wake up each day and see my Fiona. Her presence energies me while at the same time my love for her nearly paralyzes me. If my head was down I could be consumed with how far behind she is compared to other 5 year olds, how tiring and aggravating it is to have to fight for her to be included in the schools and for her to receive the type of education that will help her to be her best. I could be saddened by how her friendships are different then other 5 year olds, or her relationship with her brothers is different then it probably would be had she been born with 46 chromosomes. I could fear the future, knowing she may never live completely on her own, and that financially we will possibly always have to care for her, or someone else will. Many days, I do walk the road with my head down, caught up in these very real aspects of the road. But then maybe it's the smell of the roses, or a traveler's shoe comes into view, or more often then not God simply grabs my chin and pulls my head up where I see how much she has learned from last year, what all she has overcame and accomplished and how much her teacher adores her and invests in her. How nearly everyone who spends time with her adores her and invests in her. I see my three kids together, laughing and playing and my boys patiently waiting and helping their sister in the unique and perfect siblingship they have exactly how it is. I remember how lucky it is that my husband and I may never know the pain of empty-nest syndrome and look at the future with joy that there is a chance I may wake up every day of my life and be greeted by her smile.  And because I have faith in a God who is looking out for me, I have full confidence that he will provide for us- it may not look how my American standard of providing looks, but He will no doubt provide what we truly need. 

I am pretty passionate about the lives of people who walk down the Down syndrome road because I have experienced it first hand and can tell you from the road there is so much beauty. But I also know there are people on this road who are experiencing it nearly completely different then I. I don't think it has anything to do with the road, I think it's merely a perspective. You don't have to be on the road to have a perception of it- some people's perception of Down syndrome has slowly changed in the last few decades as advocates from the road have spoken out. We know people with Down syndrome are capable of so much more then they were once credited with when the right support and love is in place. From the government to churches to other private organizations to the Internet and Instagram, support in the US is endless, if your head is up you will find it.  And while I wish I could instill the hope of God in everyone, it is even getting harder to deny that a life with Down syndrome is worth living simply by all that we now know is possible. Organizations like rubysrainbow.org show us that people with Down syndrome are capable of post secondary educations, fulfilling jobs, and some times independent living. You will never be able to argue with someone who can't see the whole picture, but you can encourage them to lift up their head. 

I don't expect the human race to ever get to a point where one is happy to find out their baby has Down syndrome. It is not an ideal road to go down, and because of that there will always be an initial disappointment and pain. But I do hope that the human race grows to a point where they can overcome their selfishness and see what beauty there is in embracing a seemingly more difficult road. Especially the Down syndrome road, man it is almost always a sunny day over here :) Almost. 
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