Saturday, March 15, 2008

Moving the Goal Posts

When a child is born, his parents begin to dream about his future. What will he be like, what will his interests be, will he be a good student, will he play sports or be in the science club, who will he take to the prom, what college will he go to, will he go to college at all, what career will he choose, who will he marry, what will his children look like... So many questions, but really, so many fantasies. After all, at the end of the day don't we all gaze at our babies in open-mouthed wonder, knowing that they embody unlimited potential, embody everything that is good in the world? We tremble at the privilege of watching and guiding them as they grow towards that potential. We begin to imagine the wonderful life they will lead, the things they will do. The details are fuzzy, like an out of focus photograph, but we can make out the highlights - high school, college, a career, marriage, then later grandchildren...

Having a special needs child turns all that on its head.

Instead of "what dress will she wear to the prom?" you might have "will she understand what the prom is?" Instead of "who will he marry?", you might lie awake at night asking yourself "will he ever be able to develop a significant social relationship?" Instead of "who will walk her down the aisle?" you might ask "will she ever walk?"

There are an infinite number of special needs out there, an infinite number of questions to ask. What they all have in common is the way they move the goal posts. The way they force you to reevaluate everything you took for granted, ever since you were young and playing house with your dolls. Barbie was never in a wheelchair, Ken was never autistic.

I have a special needs daughter. I am one of the lucky ones. Maya's challenges, while not easy for her or for us, are still fairly mild in the grand scheme of things, and most critically, they are thought to be surmountable. Sometimes, during the hardest times, it's difficult to remember that, but it's true. My questions are of the "when will she be able, or even want, to make friends?" variety, not "will she live to graduate high school?" or "will she ever be able to speak?" My heart breaks as I watch my daughter struggle to do the things that come so easily to others, but we have reason to hope. Reason to believe that with the right support she will be able to overcome most of her challenges and live an independent, fulfilling life. What form that life will take we can't know, and I don't really let myself dream about that right now. Twenty years from now Maya will be 24 years old. I don't know whether she will have served in the army like all of her classmates*, then followed along on the ever popular post-army round-the-world backpacking trip before returning to start college. I don't even know whether she'll have classmates who are on that path, or whether she will have remained in the smaller cocoon of special education, unable to return to the mainstream despite all of our efforts and dreams. Right now I'd settle for being able to have a real, two-way conversation with her. One she is able to sustain for more than a minute or two.

I've moved my goal posts. That's what I know how to do right now. I can't ask the questions so many others take for granted. I can only wait, and watch, and support, and love. And hope. Always hope. Hope that she can make it to the other side of the rainbow. Hope that wherever her rainbow leads her she is happy.

* Israel has a universal draft. Boys serve three years in the army, girls serve two.

This post has been submitted to Scribbit's March Write-Away contest, on the theme of "The Next Twenty Years".

28 comments:

Domestic Spaz said...

Every time you post about Maya I can't help but think how lucky she is to have you for a Mom. Your support for her shines through so brightly in every entry.

Marie said...

My son doesn't qualify as special needs, but I've had to move my goal posts anyway. It's funny how even the simplest expectations can take you for a ride sometimes.

Laura said...

This post was wonderful. Before my twins were born I was told they may not be normal and I mourned that loss. We have not dealt with the uncertain I was worried about but is those dark moments I can understand a glimmer of what you are speaking about. As mothers we want to be able to make our children's lives the best possible. What's hard is realizing its not us who has the control. I am hoping you will find so many things you never thought she could do and that it will likely be by your grace as a mother she got there!

Susan Helene Gottfried said...

Fabulous post, Robin. Like Marie said, I think we move our goal posts to adjust for our particular children -- and we should. We want to highlight their strengths and let them learn to bolster their weaknesses, regardless of their educational needs.

grace said...

What a lovely post. As a mom we always hope for the best for our children, whether they have special needs or not.

This post is a winner Robin!

Anonymous said...

quite inspiring.
as the mother of a child with diabetes, i can relate to a lot of this.
as my mom said to me once 'it's sink or swim and i'll be damned if i sink'
so we adjust our expectations, and put in more time and effort. dont have a choice really.

--chanie

Scribbit said...

Oh you always have such wonderful entries, it makes it hard not to drop hints to the judge!

Lis Garrett said...

I've asked many of the same questions with regards to Jacob, mainly concerning the social aspects of his life. I definitely wonder about the future . . .

Shannon said...

Beautiful post about your precious Maya. You are a wonderful mother to her. Motherhood is unpredictable in so many ways. When that baby swims around inside your belly, only good things come to mind. Little does that new mother know the challenges ahead, some more challenging than others. Moving the goal posts so that our children can kick a field goal is the best thing we can so for them and for ourselves. Setting us all up for success, whatever that may look like.

Phyllis Sommer said...

such a beautiful post. hope -- that is all any of us can ask for.

laughingatchaos said...

Yes, the goal posts are all over the place. I'm tired of chasing them some days. I just wish you and I lived closer together 'cause I'd love to sit and drink wine with you. Maya is so lucky to have you...as difficult as it is to be you. {hugs}

Kelley said...

and that is the name of the game babe. Yeah the goal posts have changed but what an adrenaline rush!

Tonight I am rejoicing. Something that most people would never understand. Boo at 9 years old, put himself to bed for the first time ever. Complete with nappy and bedtime routine. All. By. Himself.

and there are the tears again. The happy tears.

Life is weird huh?

Robin said...

Oh Kelley, that is phenomenal! WTG Boo!

Irene said...

Yes, it is funny how much a special needs child can completely change your life and your priorities.

Our big accomplishment/goal with Caroline is to make it another year without a major health scare and/or hospital stay/ surgery. Every year we can do that is a BIG deal.

Christine said...

Robin, what a beautiful post. As others have said, Maya is so fortunate to have you as her mom.

I love the analogy of moving the goal posts...it can be used in so many areas of life.

Thank you for the inspiration.

Sara Rose Tutus said...

I love your way of thinking

Lea said...

You are such an inspiration... Maya knows her goal posts and you are right there with her, discovering her way in life... you and Maya are just amazing...

Fairly Odd Mother said...

Yes, Maya is very lucky to have you as her mom. You always are such an advocate for her and really are helping her in so many ways.

Lori said...

Congrats on winning the Write Away contest!

Summer said...

Congrats on the win Robin. Excellent post.

dieMutti said...

I really enjoyed your post... it really reminds me of what's important in life. Congrats on the win! (And thanks for the comment!)

Heather said...

Beautiful. Congrats on the win!

My Ice Cream Diary said...

I'm so glad that goal posts are moveable even in my own family. This was a lovely post and worthy of winning. Congrats!

tjhirst said...

Your comment, "Sometimes, during the hardest times, it's difficult to remember that, but it's true." are what make this a winner to me. You write the realistic story with all its ups and downs, and both are essential to see the truth, aren't they?

Roses Are Red, Violets are Violet said...

congrats! what a lovely, thought-provoking post!!!

Holding It Together said...

Congratulations on your win, and thanks for stopping by my blog.

I think your post for this is wonderful - one of the women who has helped me a lot over the last few years always comments on how parents of children with special needs celebrate every accomplishment, no matter how seemingly minor.

Your analogy about moving the goal posts makes me think of how many more goals our kids are going to score!

Sonja said...

So beautifully said. Thank you for sharing your insights. They were very uplifting.

Mary@notbefore7 said...

Beautifully written.