June 20, 2011

Fourteen Years

Fourteen years ago I walked down the aisle on my father's arm, into the arms of the only man I have ever loved.

I was so young -- just a few weeks shy of my 22nd birthday. If you had asked me at the time, I would have said that was too young for most people to be married.

But not me.

Because I was sure.

Sure of myself and sure of my love for this person I had pretty much been infatuated with from the moment we met.

We dated for four years before we married.

We waited another six years before we had our first child.

We both had advanced degrees. We had finished our educations while living in our first marital home -- a cozy apartment hundreds of miles away from our families, from everyone we had ever known, in a place where we could be on our own.

Just us.

Just us and our persnickety cat (who is, amazingly, still alive today at the age of 16).

Just us and months of snow and freezing temperatures. (But who cared? We were young and in love. Who needs extra blankets?)

Just us and the relatively worry-free existence of two young adults with plenty of confidence and little to fear.

The years went by and we moved closer to family; and he started talking about having children. I wasn't quite sure I was ready, but I knew I wanted to be a mother. And then came one frustrating day in court as a rookie deputy prosecutor, and I thought to myself, "What am I waiting for? Why not? I want to be a mom. Who knows how long it might take? I love this man and trust him with my life."

Nine months later, Daniel was born.

Nothing changes a woman's life like becoming a mother. Nothing.

And that goes tenfold -- no, a thousand-fold -- when something is wrong -- very wrong -- with your child.

When he was born, Daniel was simply beautiful.

He still is.

I remember when the nurse was cleaning him, and my husband was practically bursting with pride, I asked, "Does he have ten fingers and ten toes?", which was my way of looking for some assurance that my baby was OK.

I knew that, sometimes, babies are not OK.

Daniel had ten fingers and ten toes. He had a mess of hair and a hearty yell. He scored a 9 on his first APGAR and a ten on his second. He could grab onto your finger with amazing strength from the second he came into the world, and he could darn well eat enough for three average babies put together.

But he was not OK.

Almost eight years after my son's birth, I know too much about too many things I wish I had never given thought to -- autism, lymphatic malformations, ABA therapy, crappy insurance companies, apraxia, heartache, loneliness, disappointment and fear.

If I try to look on the bright side -- and that can be a struggle when the brightness seems more like a dim glow -- I also have learned what its like to have a friend who is one of the most giving people ever to walk the Earth, and I have had a year of therapy that has helped me deal with one hell of a lot of anger. I think I have picked up some much improved listening skills, too, if I can toot my own horn for a bit.

Fourteen years after putting on that dress and walking down the aisle, I am still married, and I still love the man I married.

But things are so much different than they were in that cozy Midwest apartment.

So much has been lost ...

Some days I feel like I am barely functional. I feel like I have all these balls in the air, and I never learned to juggle, much less catch. I still mourn the dreams that I had for my son, whose future most assuredly will be worlds apart from how I pictured it that day I peed on the stick. I struggle with how to maximize his potential, with how to make his days as happy as they can be, given how difficult this world is for him. I struggle with how to make my daughter's life as "normal" as possible, with how to make sure she is not overlooked, with how to foster a loving relationship between her and her brother that will last a lifetime, because Daniel is going to need Olivia for so much after I am gone.

I struggle with a lot of other things as well... so many very painful things, none of which I ever dreamed would be a part of my life's story.

With all that said, I don't think I am in much of a position to give anyone any advice on anything other than this:

If you find yourself dealing with a disabled child, the greatest gift I think you can ever give to your spouse is to say, as often as you can, "I love you." Take him or her in your arms and tell them, "It will be OK. And even if it is not OK, it will be OK. Because we will make it OK. Because I love you. And I will never leave you or this child. No matter what."

Say it in some form or another as often as you can, even though there will be times when you don't feel it -- when you are struggling with the weight of fear and sadness and even anger.

Both parents need to say it, because each will need to hear it. A lot.

It may not be enough. But, maybe, if you say it enough, it will be.


  1. Very well written. So many times parents become fixated on the child and the thousands of thoughts/issues/feelings that come with taking care of him, that the parents often end up forgetting about each other. I try to say it often to my husband, but it'll never be enough. Thank you for the reminder!

  2. Ditto that! Beautifully written. My marriage did not survive Autism and statistically I think mine is the norm. Still, I live in this world of Autism. I enjoyed reading your blog, thank you!

  3. leah, you are such a beautiful writer. i can relate to much of what you've written. life throws curves and sometimes i feel like someone played a dirty trick on me. i still believe God plans to do something magniificent with these life stories, yours and mine.

    thank you, my friend, i will take your advice and hold tightly to it.

    love you. truly.

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