Sunday, January 6, 2013

My Bubble

Maybe it's because I have the most amazing friends. Or because my family is close knit and supportive. Maybe it's because Elijah really is just that special.

I can't feel sad that Elijah has Down syndrome.

I'm not depressed and I don't feel like I'm missing something, or that he is missing out on being something he's not. I sometimes wonder if I am living in a bubble. A bubble of denial?

I read an article last night that a fellow Mama who has a child with Down syndrome wrote. She wrote about Chronic Sorrow. I don't even know if chronic sorrow is a real term or if she is just describing what her experience feels like. She said she never, ever grieves who her daughter is, but only grieves the child she is not. She grieves the person her daughter cannot be. Her article resonated with a lot of people. So, why do I not "get" this? 

I have another child, who has all of the potential in the world to be anything he wants. My son, Christian doesn't currently have any obstacles that will prevent him from doing whatever he sets his heart on. Elijah does have obstacles, and he may have more as he gets older.  Yet, it couldn't be clearer to me that Elijah's purpose is just different than Christian's. Elijah's purpose on this earth will not be about inventing something cutting edge or leaving an intellectual footprint the size of Big Foot. He will not become President of The United States or a Brain Surgeon. As a society, it seems that we rate our intellectual abilities as the best and most important- as the only things that truly matter or "leave a mark"? Is it a wonder that suicide rates are so high? What about the people who make us feel amazing? What about the muses? What about the people whose purpose is to inspire? I know some very, very intelligent people and their intellectual successes don't necessarily make them happy. Their intellectual successes don't even seem to be part of their true purpose in life (or they just haven't discovered how to use their intelligence for that.)

Don't get me wrong: I get scared sometimes. I worry that once I die, that Elijah will still need help being cared for and I worry that it will be a burden to someone. Christian? But, I also know that times are changing. Science is changing. Attitudes are changing. My husband and I are still going draft a living trust with a special needs clause written into it-because we never know when our time is up. Alongside my fear though, I also have hope. I have hope that both of my children will experience true joy and happiness in their lives...whatever that may look like for each of them.

I know that I may get a little flack for this post, because I realize that to some I may sound like a "Pollyanna". (Did I just date myself? For the record, I don't even actually know who Pollyanna is or why we refer to her. I only know that people conjure her name when a Too good, Goody-Two-Shoes is in effect.) So, I want to clarify that I may not feel the same as some because all we are dealing with for Elijah is an extra chromosome. Many people who have Down syndrome also have a variety of other obstacles: medical conditions, sensory challenges, other diagnoses. I wonder if the compounded effect of additional issues is what creates the cocktail of chronic sorrow? I also know that my nature has always been to focus on the positive, which frankly isn't all that difficult to do when it concerns my Elijah. I wanted to share my bubble about this because I think there are a lot of people out there who are very sad about their children with special needs...maybe even rightly so...but I also know that these same people LOVE their children and want others to know how special they are. I want to share my bubble because having a child with special needs is not always hard. Having children at all is hard. The special needs part doesn't always make that especially so. I think more people need to know this. People need to know THIS, because 92% of the people who get a pre-natal diagnosis of Down syndrome abort their babies. It is my belief that a large, if not majority, of these abortions are because of a lack of balanced information. The doctors are the worst source of information. Google searches are second runner up. The real stories from real families are the only true picture. The real story is that it's not always easy, but it is always worth it.

For now, I'm going to float around in my bubble. Maybe one day it will pop, but maybe it won't. Maybe it will be like one of those Gymboree Bubbles that never pop. You know the ones that just land and stay there until someone pops it? Only mine could theoretically float and land under the couch, living for eternity with the dust bunnies that reside there...


Hailey M. said...

Jen, I don't think you're being a Polyanna at all. You are blessed with two wonderful sons who are different (as all siblings are) and will do different things with their lives - but they will find in their own time what they value and they are already more valuable than anything else in the world to you! I had a conversation on my trip back home that really made me think - I went through school as a "gifted" child - well, this person thought I was wasting my gifts staying home with Hugh. I feel so blessed that my parents always taught me my "gifts" were just like someone else being tall, or having brown eyes... I didn't earn them and I didn't owe anyone anything because I had them. I don't think I'm wasting my gifts at all, right now I'm living the life I love, and the happiest kids I went through "gifted" education with aren't necessarily using their gifts, either. (I'm sure the math genius who runs the cupcake store keeps great accounts, but...) We have what we are given, and we have what we make of it. This past year I was "gifted" with a child and I'm going with that for now, and I feel great about it :)

Jen Currier said...

Thank you Hal! I also don't think you are wasting your gifts!! I think there is a big difference, as well, between using our gifts and figuring out our "purpose". Usually our gifts seem to have something to do with our purpose but are not the whole picture. To me, finding our true "purpose" is a near life-long search, that often isn't about our "job". Well...this is my philosophy anyway. :) oxox

jennifer Dickenson said...

Love the bravery and the honesty! I came across a similar expression in a magazine article I read years ago when my oldest was a baby. It was written by a mom of a child with Down Syndrome who expressed what you just did; that she felt no sense of loss when it came to her special needs child. Challenge and fear? of course, but not loss. She was adamant that nothing was missing or "wrong" with her child. She expressed that if anything her child with Down Syndrome (she had several children) ADDED something unique and powerful to their family that she treasured and wouldn't trade for anything. In other words, even if she could, she wouldn't wish her child to be "normal" because that one extra chromosome is part of the unique miracle that is her daughter. That inspired me so much and has stuck with me over the years. You inspire me lady! Keep sharing without apology from your honest heart. Your perspective is of great value because you are every bit as much of a unique miracle.

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