I have two new favorite words to describe our situation with Elise. After honestly acknowledging some of the very real difficulties and the overwhelming joy of having a special needs daughter brings, two words really seem to explain it quite well: constant and complexity. I think complexity is an obvious choice, the doctors appointments, therapy schedules, trying to communicate, arrange baby-sitting, and seemingly ad infinitum; yes complex is a good word. I suppose constant probably sounds rather obvious as well, it really is never-ending and the daily complexity associated with Elise is dauntingly constant, yet normal.
This is going to sound silly, but in some regards it is much like cutting your fingernail too short. Is it going to kill ya? Nope. Is the pain constant? Yep. But even that constant insignificant problem is mostly forgotten until it gets hit, or you bump it, or try to throw a baseball.
Years ago I actually did clip my fingernail too short. It wasn’t a big deal, but it was a little annoying. One morning the alarm clock (or Mom’s voice, I’m not sure which it was) said it was time to wake up. That morning my finger hurt, and there was nothing worse than having to milk the cow with a fingernail cut too short. I know it sounds ridiculous but anyone who has ever milked a cow knows what I’m talking about (yes you can call me a baby). Nevertheless, that morning I told my twin brother Aaron my constant yet small problem and pain. To my astonishment Aaron said something like, “Sorry, I know what that is like, I’ll milk for you today.” I was flabbergasted, it’s not like I was sick or dying, it was just a stupid, simple fingernail, but he milked the cow for me. I don’t know if Aaron remembers doing that, but I’ve never forgotten his unexpected kindness.
With our constant complexity there have been so many who have helped and blessed us in amazing ways, just to ease, for a moment, the constant pain. These tender mercies come in the form of someone asking sincere questions about Elise, a shoulder to cry on, flowers dropped off at the house, a kind phone call, taking the kids for the weekend, the kindness and understanding of dear friends who have asked questions, who have seen me cry, who withheld judging the cleanliness of our house or the coherence of some sobbing sentence. Family members who call, and even friends who “share” and “like” not to mention those who just show love and kindness to Elise.
So to me, raising a child with special needs is like that fingernail. At the start it seemed more like a throb but over time the pain continues to dull; however, there are strong reminders all around that make you wince when it gets bumped, and those reminders seem to be everywhere. Here’s a few examples:
. . .
Who is that girl I see
Staring straight back at me
Why is my reflection
Someone I don't know
Somehow I cannot hide
Who I am though I've tried
When will my reflection show
Who I am inside..
When will my reflection show
Who I am inside...
While her reflection does portray her perfection, I sometimes wonder what she thinks and of course I think regularly about who she really is inside. Since then I added that song to my running playlist and it really motivates me to run even faster! (Which isn’t that fast in case you were wondering).
Well I could go on and on, but there are daily reminders everywhere of the constancy of Elise’s plight. Daily little bumps on that finger to remind you it’s still there.
One of my favorite quotes comes from Jeffrey R. Holland who said, “Surely the thing God enjoys most about being God is the thrill of being merciful, especially to those who don’t expect it and often feel they don’t deserve it." I didn’t expect that kind of mercy on that particular morning where I was spared milking Molly by my compassionate brother. Similarly, I have never expected the constant compassion and kindness that I have witnessed over these last few years with Elise. Speaking of this constant love that is best exemplified by Jesus, one of my favorite church hymns reads:
Where can I turn for peace?
Where is my solace
When other sources cease to make me whole?
When with a wounded heart, anger, or malice,
I draw myself apart,
Searching my soul?
He answers privately,
Reaches my reaching
In my Gethsemane, Savior and Friend.
Gentle the peace he finds for my beseeching.
Constant he is and kind,
Love without end.
Where, when my aching grows,
Where, when I languish,
Where, in my need to know, where can I run?
Where is the quiet hand to calm my anguish?
Who, who can understand?
He, only One.
[“Where can I turn for Peace.” Text: Emma Lou Thaye. Music: Joleen G. Meredith.]
Of all the “constants” and “complexities” in our life—and yours—there is peace and solace to be found. Sure, there are little nudges and bumps along the path that remind of the pain, but there is peace. Constant He is and kind, Love without end.