It's Saturday night and we just returned from a wonderful marriage retreat. I had no intentions of blogging tonight- I don't have any new pictures of you to share, except a few random cell phone ones from the past few days.
For the past two years blogging has been more of a way to advocate for Down syndrome, rather than process my emotions. When I began this blog, the latter was the norm...I wasn't writing for anybody but for me, and most of my posts were letters to you. Things changed over time, as I got past the processing stage. In fact just a few days ago I wrote about the gift of special needs, and how I am very much at home here in "Holland." And I meant it.
But tonight I'm writing to you again...
Because out of nowhere, it hit.
The comparison bus.
And I didn't see it coming, which is probably why it hurt so much.
I'll backtrack for a moment...we came home earlier this evening after being gone for a few days. After hugging all of the kids and spending some time with them, I brought you upstairs to our bathroom. I took your diaper off and sat you on the potty. I didn't devote much time to potty training yesterday and today (because of the marriage retreat) so I didn't anticipate success. But to my surprise, your diaper was completely dry - and you had been in it for five hours. Two of those hours were spent in the car, and you'd had quite a bit to drink. I told you what a big girl you were for staying dry, and you beamed up at me with your million watt smile- and promptly filled your little dinosaur potty up with five hours worth of pee. I could not believe you did that in less than a minute, and that you knew what you were doing- you clapped for yourself and pointed to the toilet paper and said "please" as clear as could be. I put brand new big girl chonies on you (with birds on them, for my Lilybird) and called Daddy in for a potty party. I was elated- my little girl was far exceeding what my original expectations were, and I was so high on that feeling.
I took you downstairs to help you show all the kids your new chonies and tell them about your big girl accomplishment. Everybody cheered for you and high-fived you, and all the while I was thinking- take that, Down syndrome. Our kids are more alike than different, and look what happens when you expect instead of accept - you kick the typical Ds expectations to the curb.
I left all of you in the living room and went into the kitchen to open the mail from the past few days. There were four envelopes from the Down syndrome clinic in Portland, where you spent half a day a few weeks ago being evaluated. I opened each envelope, fully knowing what each one would tell me...after all, much of the information they gathered came from my own description of what you can and can't do. We took you to be evaluated so that we can have a record of how you're developing over the years, and we get excellent feedback from the team there on how we can better help you to achieve our goals. So I knew what to expect....
But out of nowhere that hideous bus hit me full force.
Standard Score - 64
Percentile Rank - 1
Test Age Equivalent - 1 year 9 months
Standard Score - 74
Percentile Rank - 4
Test Age Equivalent - 1 year, 11 months
Total Language Score...
Standard Score - 66
Percentile Rank - 1
Test Age - 1 year, 9 months
Based on formal and informal observations, medical record review, caregiver report, and clinical assessment, Lily presents with mixed receptive-expressive language disorder and a phonological disorder.
I already knew this. I already knew you were not talking like a typical three year old, that compared to typical children your age, you are severely delayed. We have children your age and younger at church who I see on a regular basis - who are talking in full sentences, communicating wonderfully, stringing words together...our own grandson is a year and a half old and has a vocabulary twenty times what you do.
I knew this.
So I have no idea why seeing that data on paper hit me like a ton of bricks, but it did. Daddy came in the room and asked what I was reading- suddenly I couldn't see the words on the paper, couldn't get the words out of my mouth to tell him what I was reading. "What is it?!" he asked, his voice tender and full of concern.
"I knew this," I choked out. "I don't know why it's affecting me like this. I know she has Down syndrome - I know she has these delays."
My hands were shaking as I read the other reports, detailing your other delays...Visual Motor Integration, age equivalent 15 months....Grasping, age equivalent 7 months...
My three year old is grasping like a 7 month old.
My beautiful, bright, charming little girl is an infant.
You didn't somehow defy your diagnosis, you didn't prove all the statistics wrong and exceed everybody's wildest imaginations, you are doing exactly what any other child with Down syndrome your age is doing.... you have profound delays.
They didn't tell me anything I didn't know. I live with this every day, I know you better than anyone else.
So don't ask me why seeing that information printed out on a piece of paper hit me like it did, but it did.
I hope nobody tries to tell me to "accept Lily for who she is", because I have. Or to "celebrate what she is doing", because I am. Or to know that "God made her who she is", because I absolutely believe that with all my heart. I love you more than anybody else does, and I treasure you as one of my greatest gifts. You are everything to me- everything.
And that's why this hurts so much.
I don't want my little girl to struggle. What mother would? I want the best for you, just like all of my children. I don't look at you any differently, and think "well that's okay that she can't tell me that she is afraid of the dark right now, or that her throat hurts right now- after all she has Down syndrome." I want so much more for you.
And this is where I go back to the beginning, back to that place where I sort through the mountain of emotions pressing in on me, threatening to overwhelm me...
...and I stop the bus.
Deliberately, immediately, stop the downward spiral of pain that will inevitably continue without a conscious effort to end it.
Because you know what I've found, dearest Lily? It's just an illusion.
That dark phantom, barreling down the highway of my mind, ready to knock
me off guard again, sending me careening wildly to the place of grief I
thought I recovered from long ago? It's just a mirage. It has no more
hold over me than I will let it, and with the flick of a little switch
in my brain called will, combined with a sucker punch of faith - it's gone.
I wrote those words in June of 2011. And they're just as true today.
These emotions, this downward spiral, does not have to own me. Those envelopes, those honest and accurate assessments of what you are doing right now, did not change who you are. Maybe they spelled it out in black and white for me, and maybe they made things a little bit more real because they were someone else's observations and not just mine.
But you are still Lily, and Down syndrome doesn't define you. You have strengths that can't be measured by a set of standards in a book, you have value that is so far beyond what anyone could record by checks and percentages.
So what if you grasp like a 7 month old at age three? We observe that, we look for ways to teach you how to grasp things better, we find things to work on to increase your finger strength, and we roll with it. I'm not going to see these comparisons as anything other than a framework for how we can help you better, and at the end of the day you are loved, and you know you are loved, and if I have to hold your hand to draw a circle when you're fifty-five, what will it matter?
You're not a "typical" three year old, may never be a "typical" anything.
You're my Lily.
And right now, my spunky little girl is chattering on your sissy's cell phone in the other room, laughing hysterically with that imaginary friend you just called, and you are loving life.
And in a year or two, or maybe even three or four, you'll tell me when you're afraid of the dark, or that your throat hurts, and I bet you'll even get that pincer grasp down too. But even if you don't, I'm going to stop that freaking bus every time it tries to hit me.
Because in the end, you are happy and you are loved and you are my Lily, and I don't want to miss one single beautiful moment of who you are today by grasping at who I hope you become.
Finally brethren, whatsoever things are true,
whatsoever things are honest, whatsoever things are just, whatsoever
things are pure, whatsoever things are lovely, whatsoever things are of
good report; if there be any virtue, and if there be any praise, think
on these things. Philippians 4:8
Loving my perfect Lily,