The Grief that Evolved into Light

As I stated in another blog, the first person I ever met that had a child with Down Syndrome told me "it's a grief that never really goes away."

On hearing this, I remember I found it hard to associate "grief" with a living human being.  Wasn't grief something you did when someone died? It seemed weird to me you could experience grief about other things.

But what is grief really? It is, to me, in a nutshell, about reconciliation of loss.  It's about getting acclimated to someone or something that is gone, and moving on.

According to my friend, when having a child with a disability, that "moving on" wasn't possible. 

Let me tell you first hand: my friend was wrong.

My grieving process started while Mishayla was still at UCLA. As I said before, after about six weeks of running from the high desert down to Los Angeles, which is a 100 miles per day trip, I was exhausted.  Since I could call the NICU 24 hours a day, at the urging of my worried husband, I started to go down to UCLA only 3 times during the work week.  Tony went down with me on the weekend, so at least I was there most of the week.  But I could no longer go everyday. 

So on those days I was home, I was alone.  With Tony at work, and Jared at school, I had time on my hands.  I had an old antique oak desk at the time, and it faced the wall.  I would sit there, and I would contemplate.  It became my grieving place.

It would be more accurate to say, that I tried to get my mind around what had occurred, and what the ramifications of it would be.  Sometimes nothing tangible, or useful, would even come into my head. I was so overwhelmed by it all I just sat there.  I felt like I couldn't move.

I got to thinking one day; what did I really know about Down Syndrome? It was 1999; a few years before the internet really took off, so in order to get information, I would need to get a book.  I went to the local Barnes and Noble, and browsed the limited titles that were available.  I found one book called "A Parent's Guide to Down Syndrome: Toward a Brighter Future by Sigfried Puschel.  I would later learn that Puschel was one of the leading experts in Down Syndrome.

I bought the book, not even opening it till I got home.  At my desk, I opened the book.  What I read made me sick with fear.  I had no idea in the world children with Down Syndrome could have so many problems.  Everything from the stuff Mishayla had, like bowel and heart anomalies, to trouble hearing and deafness, eye problems, joint and bone problems, spinal abnormalities, and eating problems.  This was on top of having cognitive difficulties. 

So even with everything that was happening with Mishayla, there was a great potential for more problems.  All kinds of problems, problems that were not minor, that would need treatments and surgeries.  I felt as though the future looked pretty bleak.  I was filled with a sense of hopelessness.

All parents want to leave a legacy for their children.  They want their children to take something from them, and have it when they are gone, something that is a big part of that parent's humanity, a symbol of their times and existence on earth.

For me, that was my books.  In this room, with my desk, I was surrounded by case after case of books.  Jane Austen, Mark Twain, Charles Dickens, Nathaniel Hawthorne.  Some were bound in leather; really good stuff.  I had been accruing this collection for nearly 20 years, and they felt like a part of me. They represented something I loved, and a dream I had. I had gotten halfway through an English degree in the mid 1980s before Jared was born, and I still had that dream of achieving that goal someday. 

So I felt they were a symbol of me, of something I felt was important.  And I wanted that part of me to survive.  For my kids to, maybe not love it the way I did, but to at least have an appreciation of something I had a profound passion for. 

And I had given birth to a child that would be lucky if she could ever read anything at all.

I felt it was like a cruel joke.  God was up there laughing at me.  You vain little fool.  Nobody will care about you when you are gone; nobody will remember, especially your disabled child, if she even lives that long enough to see you grow old.

At the time, in my troubled mind, I didn't even think that while Jared was not one to read these books, he would probably one day have his own children, my grandchildren.  Or I could pass the books onto friends.  Or I could donate them. The fact that Mishayla couldn't read them was not the end of the world.

But it felt that way, that day, that moment.  And that is grief. 

A process had begun, of letting go of old dreams, and making new ones.  And it hurt like hell.

As time went on, I continued to have these little moments every now and then; these moments that would rush at me, leaving me shocked and breathless, and filling me with a crippling, profound sadness.

Another one occurred after a performance.  I had a been active in a local choir that performed a few times a year. In this particular year, four of us, including the choir director, were performing a quartet.  It had taken me weeks to get my part down; the harmony was abstract and difficult for me.  I was actually scared I would get out there and choke, but once I hit the stage, it was like magic; everything fell into place, the harmonies were perfect.  The song went off without a hitch.

I had loved music as far back as I can remember, and I always wanted to sing.  Very few things give me more pleasure.  I first sang in front of an audience at the age of 12, and it was an exhilarating experience.  I was hooked.

I was in choirs all through junior high and high school, singing in groups and as a soloist.  I had gotten away from it for a while, and had returned to it just before I got pregnant. 

Anyway, after our quartet was done, I was just sitting backstage, watching another soloist perform.  One such soloist was a 13 year old girl, with long golden hair.  She walked up to the microphone, opened her mouth, and began to sing "Somewhere Over the Rainbow." For her age she was extremely poised; her lovely soprano floated over the stage. 

As I was sitting there, enjoying this, recalling my self singing at that age,  it suddenly occurred to me. 

My daughter would never be able to do this, would never be able to enjoy performing or singing, or any of those things.

I felt the tears fill my eyes, the lump in my throat was strangling.  I got up, and ran out of the stage door into the green room, sobbing.

When I got there, the theatre house manager was there, who was also a good friend,  Of course, with the state I was in, she wanted to know what was wrong.  When I told her, she just looked at me.

"Cyndee, you don't have any idea what Mishayla will or won't do at this point.  Whose to say she won't ever sing? You just don't know what will happen."

Of course my friend was absolutely right.  But in the grips of that grief, you sort of lose prospective. 

And as the years have unfolded, I have indeed learned that, just  like any child, what a child with a disability can do is limitless.

There is no doubt Mishayla inherited my love of music.  At her age, I would sit with the headset on, playing James Taylor and Carole King and Chicago and Elton John for hours (yes, I grew up in the 70s!!) Now she has her MacBook and loves Lady Gaga, Kelly Clarkson, Rascal Flats, and Carrie Underwood.  Not to mention Adele!! She is as glued to her music as I was.

And a few months ago, she performed with the 7th grade choir.  She was shy, telling her father "Dad, I don't think I can do this," but once she got with her friends, she was fine.  She didn't sing a note, but she stood with the other young women in her class, and was surrounded by the music she loves. 

She will probably never be a soloist.  But she still is able to enjoy music.  And the truth is, she is not me. She would not have been me, even without the disability.  Our children have their own path to cut through in their lives. 

Mishayla, of course, does read.  And she enjoys books.  I read to her extensively, and her teachers say that it shows.  She may not read Faulkner, but then, a lot of people are glad they never have to read Faulkner.  As long as she is reading something that gives her pleasure and challenges her mind, what does it truly matter?

Many times, parents with children with disabilities put their expectations lower than they should be.  Mishayla has surprised us time and time again with her abilities, far beyond any of our expectations. 

And that is the key.  You need to throw away the expectations.  Don't make them too low, or too high. Take one day at a time. And just see what happens, making the adjustments that are best for your child, who is truly unique beyond measure.

I think this can also be true when it comes to medical diagnosis.  It is fine, and truly, essential, to know about your child's diagnosis.  But I wouldn't borrow trouble.  If your child doesn't have ear or eye problems, there is no need to believe, just because of the T21, that they will get these problems.  Focus on what is important, that is, what your child actually has.  And again, take things slow.  It's very easy to get overwhelmed.

I am pleased to admit that don't have those moments anymore.  And yes, they do go away.  They grow into something much deeper, much more endearing.  They are filled with hope, and with light.  The light my daughter gives me has made my life rich and blessed, and a better human being than I ever would have been without her!! She is truly my greatest gift!!

Mishayla fishing at Forest Lake, 2011