Tuesday, July 6, 2010

On my mind

In a few short hours (about four, more specifically), my baby will turn two. His birthday has obviously been approaching for weeks, and I've been just fine and dandy with it. For the last few days I've been drafting in my head what I'd post here to commemorate his second birthday - something positive and upbeat, something that conveyed how I adore him and how much his very presence has changed our family and opened my heart. And all that is true.

And yet.

As the day wore on today, as I herded kids and did chores and ran to the store to buy one last birthday gift for Finn, I felt myself feeling more and more out of sorts. Until finally around dinner time, the tears started, which I've continued to brush away on and off for the last few hours.

I feel sad, and I'm not sure exactly why. I don't think there's a simple answer. It's far more complicated than the usual bitter-sweet melancholy I feel with the turning over of years with each of my other kids. It's different with Finn. It's all so very different. And I guess that's the crux of it.

I think back to those early days and weeks, and how scared I was. What did the future hold for this tiny baby who came crashing into our family with his extra chromosomes, with his extra issues? How bad would it be, how hard would it be - for him, for all of us?

I even went through a fairly prolonged period of holding out hope that he would only be mildly affected by Down syndrome. Mildly affected. I was fixated on that notion for a while, I'm ashamed to admit now. I think it all started with him rolling over for the first time at three and a half weeks old - three and a half weeks! And it wasn't just a fluke, because he kept on doing it. So I grabbed onto that, hoping that it was a sign of things to come - that he would reach all of his milestones on time, or even ahead of schedule, that he would be the superstar kid who made it into the medical texts by having the extra chromos but none of the delays and issues typically associated with those extra chromos. I guess it was a coping mechanism - I created this fantasy as a means of coming to terms that my baby was different, defective in the eyes of the world.

But over time I figured out that his rolling over at three and a half weeks had no bearing at all on anything - except that he could roll over at three and a half weeks.

And over time, I adjusted, I coped. I accepted. I got to a point of knowing in my heart of hearts that I wouldn't change anything about him, not even that he has Down syndrome. I have come to believe that in fully loving him and accepting him just as he is, without reservation or qualification, means always having high hopes for him, but also accepting that he will have limitations, that there will be things he will never master - but that it's still possible to see the value and beauty of his existence.

So why am I feeling so sad and down on the eve of his birthday?

The delays have become more numerous and more apparent the older he's gotten. It's no longer abstract, it's reality. At two years old (okay, three and a half hours shy of two years old), he doesn't walk, he doesn't talk, and he doesn't eat table food. I know those things will come in due time. When is anyone's guess. I'm okay with it for the most part. I guess what's painful is just that every achievement is so hard won. There is so, so much patience required in parenting a child with developmental delays. And patience is most definitely not one of my strengths, but interestingly, it's not all that hard to be patient with Finn. But I wonder how patient the world will be with him.

And now, in writing it all out, I think I've gotten to the heart of it: it's still a hard world to raise a kid like Finn in. People like Finn are still viewed largely as less than. They are still marginalized. Prejudices and misconceptions about people with Down syndrome still abound. People still throw around words like "retard." I would venture a guess that a good deal of my own friends are still secretly glad that it happened to me and not them. It's still something people don't want to happen in their family.

I've changed. I believe I've become a more compassionate person thanks to the addition of Finn to our family. I believe my mind and heart have been opened to the plethora of differences in all people. At the same time, I think I've become more hard-hearted to small-mindedness. I've donned a new hat among the many I was already wearing: the hat of Advocate. Which means I have to speak up on behalf of my son and all people like him, even when it's painfully uncomfortable. The knot of friends who comprise my "inner circle" has shrunk, I'm sure because of changes I've undergone.

Sometimes I still feel scared, like I did back in the early days and weeks. The future is a huge question mark. It's not Finn I worry about so much. It's how kind or cruel will the world be to him?

So I rocked him tonight in the dark of his room for a long time, thinking "just a little longer . . ." holding him tight, and wishing I could protect him always.


The Sanchez Family said...

Oh tears Lisa. I know these feeling all too well. Happy early birthday Finnie!!!! We love you Finn and we love your Lisa!

Mer said...

Happy Birthday, Finn! Two years of being loved and joyful! I know he is so loved by family and friends and he is so lucky to have a lifetime of that! And Lisa - I know I will feel the same as Chase turns two (just as I did as he turned one) and all we can do is realize what a blessing these little boys are, how much joy and love they bring to our lives and the world, and how God is constantly blessing you through Finn and all the many other ways you may see or not even realize each day! Can't wait to see what these boys are doing when they turn 5, 10, and 20!!

B. McKenzie said...

Crying. I have had a hard few days where the tears won't stop. Our Jack is 1 year old and this happens to me every few months. I too wonder how the world will treat Jack and wish I could protect him from all of it. Hugs to you. Wish we could create our own little bubble sometimes, but I no that wouldn't be good. Hoping today you find some sunshine and I know at some point Finn will make you smile even as you are crying...Jack always does to me and it's a nice reminder that he is just fine.

Lisa said...

Happy birthday, sweet Finnian... And, Lisa, I'm with you. My biggest concerns now aren't with Sheridan's abilities, it's how others will treat him and react to him. I don't want people to pity him. I don't want people to be cruel. I've never in my life felt so strongly the need/desire to protect someone. But I know I can't, and I shouldn't. One day (unfortunately, probably many days in his life) people will treat him as "less than" - and he will have to learn how to deal with it. It breaks my heart, but I also know how amazing our children are. Anybody who gives them half a second will be won over.

Sweet Pea's Mommy said...

Well spoken! I completely know how you feel and I love how you wrote it! One of my biggest fears is that Sweet Pea only attracts people to her now because she is still an infant. What happens when she is much older and not the adorable little baby anymore? Will the world still love her? I know we will, but I really hope the world will too!

Happy Birthday Finn!!!!

Tara said...

I agree, Lisa. I want to hold back time and keep him small and cute and accepted. I am dreading the day when he no longer attracts attention for positive reasons. Right now, the world thinks he's adorable...and he is. But I am fully aware the day will come when people will look away and be uncomfortable in his presence. That is the part of the future that breaks my heart even now. Hugs to you!
(btw, feel free to use anything you see on my blog!)

MaggieMae said...

I shed tears understanding your fears too. Every one of us -- developmentally delayed, DS or not -- will face those who will ridicule and pick on whatever qualities they believe make them more and "us" less. Truth is, for every one of them, there are 10 of us who believe that our children with DS have changed the world for the better by positively affecting each and every person they touch... no matter how briefly. I went through the "mildly affected" stage and, truth is, to us, as parents, they are all mildly affected because they are more human, more alive and more like everyone else than not. My boys are 5 now. They don't do all the things that other 5 year olds do... but they do tons of stuff... and they do a lot that other 5 year olds don't. They are so much more compassionate and connected and loving. I don't know if that's the DS or just my boys. I don't care. They're awesome just the way they are and, like you, I wouldn't change anything about them! You know... in the end, they all walk and talk and it doesn't matter when they started!

Happy Birthday Finn! You're one lucky boy to have such a loving and caring and forward-thinking Mama.

Jasmine said...

Happy Birthday, Finn. Lisa, I'm new to your blog. Your love for Finn is so apparent.

You write with heart. Thanks for sharing.

Windmills and Tulips

Brandie said...

Happy belated birthday Finn!
When Goldie was a baby, a good friend told me that she would just be a baby a little longer than most kids. At the time it sounded nice, isn't that what we want? To hold onto our babies forever. But, the reality of it really stings sometimes.

Andrea said...

I love your honesty....it is so raw and real. You have an amazing way of sharing the tough spots. Happy belated Birthday to Finn! Hugs to you!