I started off this letter to you on a different note. Something happened last week that had me thinking. Actually, it happened three times in a row, when you and I were running errands...and it usually takes at least that many times for something to lodge itself in my brain as annoying or disturbing.
But halfway through this post, I looked over at you playing with your toys, and you flashed me that million-watt smile...and I changed course.
Because life is full of glass-half-empty situations, and if I wanted to, I could devote an entire post to each one. I could see a syndrome, or a symptom of a syndrome in every entree our day dishes up...or I could look at perceived problems as opportunities to grow or learn or change...or maybe even help others change. A glass half full if you will.
So I'm thinking instead about last night, and how your brother "rescued" you from nursery at church. He heard your cries just before the service started and approached my piano with a worried look on his face. "Lily's crying, can I go get her?" he asked, and I couldn't refuse. The nursery worker knew you would be fine, and she tried to set your brother's mind at ease about letting you stay...but he held his ground and told her, "Lily's not like our other babies- she needs her family more."
You know what is amazing, sweet Lily? It wasn't that long ago that Tyler wasn't so sure he was ready for the special needs card. He didn't start the day seeing the glass half full, and it took a little bit of time for him to see that love doesn't just add, it multiplies. Those tender words he repeated to me on the way home from church last night made my heart swell with pride. Your other siblings chimed in about how much you love them, and how obvious it is that your prefer your family over others. That dependency isn't a burden, it's a blessing, and there is something so powerful and beautiful about being needed.
And it's all about perspective, isn't it?
Which brings me to the glass half empty story.
We were in the line at a clothing store last week, checking out...you were in your new sling, cozily attached to me at the hip, gazing shyly at the sales girl, when she asked the inevitable question: "how old is she?" Followed by the inevitable "wow, she's so tiny!" after I gave your age. Which is not something that I find negative. Growing up I was always the smallest in my class, so I was well versed in appropriate responses to statements like that, thanks to your Grammi. "Good things come in small packages" was always on the tip of my tongue, and the older I got, size didn't really seem to matter to me as much as it did in those elementary school years.
So the shock over your size had nothing to do with what rubbed me wrong. Likewise, it didn't bother me in the slightest when the sales woman (or the other two that week) pressed with her questions, "Was she premature?" or "Were all of your children tiny?" or some other query. Each time I weighed it out...as always...to tell or not to tell? It is still awkward for me, not because I have a problem telling people you have Down syndrome. Not at all. It's just that I really don't want to make an issue about it. I really just want people to see you for who you are, and see you as a baby first, and not a syndrome.
But the problem solver in me won out, and rather than leave an unspoken or carefully disguised question lingering in the air, I answered it. "She has Down syndrome, and she's got the Rice genes at play too... so that makes for a very tiny Lily." I said it with a smile, not a trace of sadness or remorse, but without fail, the veiled pity began...
"Oh, well she is cute anyway!"
"But, she sure looks happy!"
and every now and then the one that cuts...
"Oh, I'm so sorry."
You know what I want to say, Lily?
Please don't be.
I am not grieving, I am not happy-in-spite-of, and most of all I am not sorry.
And you know what I want them to say? What I wish was on the tips of strangers' tongues, just as readily available as my good-things-small-packages response?
"She's so cute, what's her name?"
"My daughter is 18 months old too"
"I love her eyes"
or any other normal response to a cute little girl staring shyly at the attendant. Minus the pity.
But you know what that extra chromosome brings?
Because I was there once too, Lily. I gave the conciliatory words, in just the right tone of look-on-the-bright side, and I may have even patted myself on the back, figuratively speaking...because I really did think I was doing a parent of a child with special needs a favor. But because I hadn't walked in their shoes, I didn't have a clue. And neither did that sales clerk, or the umpteen ones before her...
That we don't love in spite of...we just love.
And while we may go through some additional challenges in life thanks to that extra piece of genetic material, like squeezing extra therapies into our daily routines or facing extra health concerns...we wouldn't turn back the clock and be without our children if you paid us.
So what's a mama to do? I can see it either way. I can see a lifetime of unintentional hurts and slights on the part of those who've never walked this way before...or I can take those moments to help someone else see that my glass isn't just half full, it's overflowing.
"Oh, don't be sorry!" I smiled at that well-intentioned, but misinformed salesperson. "Lily is our greatest blessing! She's brought more joy to our lives than we ever thought possible!"
And as you beamed that million-watt smile back at her I do believe she saw the glass half-full as well.
Loving you always,