Tuesday, January 6, 2009

Nostalgia for the "lost" time

If you have ever been devastated you will know that the feeling is quite physical.

When my heart was crushed, I was grasping a desk- unable to stand on my own strength. Im sure this must have been the geneticists' hundredth "brain damage" diagnosis, but it was my first. Not twenty seconds earlier, I had been told that my only little girl might never walk, talk or lead an independent life.

A knife to the heart would have been much less painful.

I was suddenly swept away with an avalanche of emotions: terror, grief, anger, confusion and despair, just to name a few. I was also faced with a very important decision. How would I choose to see my daughter? Should I set myself up, and hope? Or should I accept the diagnosis and make the best of what I had?

I cannot tell you that there is a formula. This is a highly individual choice in every situation. I did what most parents would have done in a moment of fear and despair: I prayed. I prayed and prayed until I felt that I had heard some indication on what I should do. After a few weeks of emotional wrestling with God and logic I came up with a decision that would direct my steps for the years to come-

I would NOT believe Katy's prognosis.

I believed the medical causes, and I would follow the instructions to a "T." The diagnosis was a fact. The prognosis was not. Who was to know the outcome? A doctor?

I was Katy's mother. I was the one appointed to teach her and believe in her. The doctor was not there to witness the sheer joy that my husband and shared as we discovered that we had conceived in infertility. It was MY joy to live. It was MY blessing to have. Now that I had it, I wasn't going to allow a prognosis to determine the way I would raise my only baby. I would set the standard high- and Katy would reach it.

Because I believed in God.

Because I believed in her.

Through pain, suffering and great sacrifice, I poured myself out on her. As she seized- I told her that she did not have epilepsy. As she lay absent- minded, I told her that she was an explorer and a discoverer. As she shook with instability I would tell her that she was going to be a ballerina. I wont go into the story of her development- its all recorded here on this blog. What I do want to talk about was the uneasiness that Ive lived with on a daily basis.

All want-to-be moms dream of holding their baby's and kissing their foreheads. We say that we wish they were little forever- but thats not true. If any mom hears a doctor tell her that her child will never grow up to be independent- she will be crushed. She will go through a process very similar to mine, and make her own decisions based on what she believes is best for her and her child. But every single (loving) mother wishes for her child to thrive and conquer the world.

Since my decision to believe in Katy's developmental recovery I have been on a milestone lookout. Every time she reaches one, a burden is lifted off my heart. That's when I look to the next challenge- and once again- I find myself nervous for her. It has been something I have learned to cope with on a daily basis.


As of today, Katy has reached most of the important milestones. She responds to social interaction, she can focus her attention on a task for an appropriate period of time, she has learned to walk (MAJOR MILESTONE), she has developed a sense of humor, has learned to use objects as tools... the list goes on. All we are waiting on is speech- and she is still within good time.

My heart is a lot lighter today than it was at the time of her diagnosis (about two years ago). In fact, mostly I feel like Im fluttering through the day on a pink cloud. The nightmare has passed and my daughter is making it.

As I watch my three year old climb into a chair to play video games on the computer I realize a bittersweet truth- Katy is no longer my baby. She's my little girl. I don't know how it happened. It all went so fast, yet so slow. Her entire infancy and toddlerhood, Katy fought like a brave little soldier. Her battles were not in vain- they have brought her to where she is at today.

Nevertheless, once in a while, I feel a little sad that we didn't get to stop and enjoy the first few years. But maybe nobody does. Maybe everyone is a little bit like me- always looking ahead- until the past is just a memory.

May 2009 be the year to stop and smell the roses. I cant wait to enjoy my little family!


Patyrish said...

I admire you so much, you know that right?

I also get sad that we too did not get to enjoy those first couple of years, they were all a crazy blur of hospitals, surgeries and illnesses.

I feel like that time was stolen from her, from us.

Katy is amazing and I am touched and in awe of her....and her awesome mommy.

Eudea-Mamia said...

Excellent post.

And this, this I'm going to have tatooed somewhere...

"The diagnosis was a fact. The prognosis was not."

No truer words written, my dear.

Yesterday I was so proud of myself - I had one of those small, "OK, we are so going to make it" moments.

I made my first, from scratch, Lo Pro sugar cookies. And baby, they ROCK!!

I wanted to tell a friend. Someone who would understand this hurdle for me. But I knew no one would truly understand - I should have come here.

Thanks for that. Hugs to you.

tara @ kidz said...

I LOVED this post. You are a stellar mother.

I'm wondering if it would be okay for me to share this on the kidz blog. I believe there are many mothers who would benefit from this story and your perspective. Just let me know.

Love to you and your sweetie!

Amy Kate said...

You are truly amazing, and so is Katy. I just started reading your blog today, and love your perspective and insight and energy. Katy's got to be amazing -she's yours!! Keep up the good work, mama!

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