An Uncommon Love Story

Every now and then, you hear a song and the lyrics strike you in a way that you takes you to a place, a memory, a feeling that you are hearing in a song something that exactly matches an experience you’ve had. When you are in love, you hear this in many of the love songs and it fills you with the warmth of a loving hug.

I am in love but not the kind of love that these songs were written about. I am lucky to be in love in an uncommon way. I am the parent of a daughter with Rett Syndrome named Stephanie. When she was born, there was nothing obviously wrong with her. She hit all of her early milestones although just barely. She was such a happy, calm, and easy baby that I thought life just didn’t get any better. My heart filled with the love that every parent knows when their baby is born. But, at 8 months old, she missed her first developmental milestone and we were asked to take her to a pediatric developmental specialist. After just a few minutes with her, he announced to my husband and me that she was on a development path that strayed from the typical one. When I asked him when she would get back on that typical path, he said “Your child will never be normal.” My world came to a halt.

My husband’s reaction and mine were different. As he carried out to the car, he was weeping. My numb feeling from the stunning news was turning into anger because of the audacity of this so-called doctor for presuming that he knew more about Stephanie than I did. During the following months, that anger slowly turned into the resignation that he did know more than I did. There was no denying that something was terribly wrong.

Rett Syndrome is especially cruel. It allows the parents to believe that everything is right. It allows the child to develop the ability to roll over, crawl, maybe walk, pick things up with their fingers, feed themselves, maybe start babbling or talking. Then little by little, it takes most of that away leaving behind a person trapped in a body that won’t do what she wants it to do, replacing her hand use with a repetitive hand motion that is the hallmark symptom of Rett Syndrome.

I remember driving to work realizing that I no longer knew what the future was. When I looked out in time, I only saw a dense fog. Stephanie wasn’t going to go to Kindergarten to make new friends on the slide or swings at the school playground. She wasn’t going to be invited to slumber parties, giggling all night and having pillow fights. She wasn’t going to hold hands with a boy and go to the prom. She wasn’t going to graduate, go to college, fall in love, get married, or have children of her own. My grief had taken hold of my soul, causing me to suddenly start sobbing just at the sight of another child running to her mom and giving her a big hug. It was a devastating time of my life.

Eventually, as the years went by, the grief subsided. It’s not like I don’t still see how different my life is from my friends and neighbors. I do. I was able to find peace with the fact that my “normal” is not the same as their “normal.” I just needed time for the world to shift so that I could see that everything I was so upset about were things I wanted, but may not be the things that she would have wanted. I wanted her to graduate high school. I wanted her to go to college. I wanted her to give me grandchildren. Every day, Stephanie has a smile on her face more than anyone I know. I now feel like I see things more clearly and just need to help her do the things that make her happy. I’m where I’m meant to be and this is our love song.

 

I See The Light – from the Disney movie Tangled (https://www.youtube.com/watch?v=k_k3FRAwYC0)

All those days watching from the windows

All those years outside looking in

All that time never even knowing

Just how blind I’ve been

Now I’m here blinking in the starlight

Now I’m here suddenly I see

Standing here it’s all so clear

I’m where I’m meant to be

And at last I see the light

And it’s like the fog has lifted

And at last I see the light

And it’s like the sky is new

And it’s warm and real and bright

And the world has somehow shifted

All at once everything looks different

Now that I see you

All those days chasing down a daydream

All those years living in a blur

All that time never truly seeing

Things the way they were

Now she’s here shining in the starlight

Now she’s here suddenly I know

If she’s here it’s crystal clear

I’m where I’m meant to go

And at last I see the light

And it’s like the fog has lifted

And at least I see the light

And it’s like the sky is new

And it’s warm and real and bright

And the world has somehow shifted

All at once everything is different

Now that I see you

Now that I see you