800 Recycled Milk Jugs

Can I share something with you? Something I've been in denial about for a long time. Something that makes my heart physically ache. Something I can only type at this point because the words still catch in my throat.

I have a disabled child.

Since she was 4 years old we've worked with doctors, diagnosticians, therapists and psychiatrists to better understand the many facets of my daughter's delays and challenges. For some reason it took her turning 9 years old for me to really grasp what charts and labels and testing have plainly declared for years. Although I've watched an ever-widening crevasse separate her from typical peers, I've gone to extraordinary lengths to deny the truth.  

"This is just a rough month."
"I need to try a new approach."  
"We need to be more consistent."
"She is capable."

I told myself all of these things and more. Even the heavy weight of guilt I heaped on my shoulders felt better than swallowing the truth. At the end of one particularly long and frustrating day a few months ago I decided to burn off some of my irritation with a long run by re-researching parenting tips for coping with her most prominent diagnosis. I visited several reputable forums and websites, but one sentence at the very bottom of a lengthy article reached out and slapped me in the face: 

"Adults with this disability are often able to...."

Adults. Disability. This thing. This issue. This affliction. This damage. It's here for good. It is part of who she is. She is a disabled child who will be a disabled adult. For the first time I was able to wrap my mind around this fact. But swallowing this bitter pill, accepting this truth... it's not a one time event. It's not something we muscle through, then feel relief afterwards. It's a pill I swallow every day again. C.S. Lewis sums it up well in A Grief Observed:

“For in grief nothing "stays put." One keeps on emerging from a phase, but it always recurs. Round and round...  How often -- how often will the vast emptiness astonish me like a complete novelty and make me say, "I never realized my loss till this moment"? The same leg is cut off time after time.” 

I am proud of my daughter for a thousand and one reasons. We have a close, loving relationship. She's as tough as nails and scrappy. A fighter and a lover. God willing she will live a long, fulfilling life. Our daughter knows she is different... but doesn't yet, and may never, fully understand what that means. She doesn't know that this hardness has a name. I can't begin to write about her struggle with this, as I am just beginning to explore my own. And maybe that is her story to tell not mine. Sometimes an entire day goes by I am unaware of her disability. And then the realization of it yanks the rug from under me as suddenly and devastatingly as the first time. Some days the management of her disability is so present and suffocating it absorbs every moment of the day. The same leg is cut off time after time. 

Our lives aren't ruined. She is fearfully and wonderfully made. I don't harbor a shred of regret. Not that she's mine and not for the years I have poured my misguided self into trying to make this thing disability un-true. This disability. My fingers still betray me. As though typing the word makes it more real. But I'm making progress. And she is too. I hope this post will bring comfort to other moms who are grappling with similar grief and realizations. I hope it helps our family and friends and teachers and neighbors understand how we can talk frankly about our child's challenges in one breath then burst into tears the next. I want to recycle this grief and turn it into power and inspiration and hope. Like one of those park benches made out of milk jugs. I want to find freedom in calling this by it's name. I think that helps me own it. I hope it helps her own it too.

I can only find one glove.

The first week of this year we had the incredible opportunity to take our children to Red River, New Mexico for three days of snow skiing. This small village, tucked in a mountain valley, has a special place in my heart. Many summers and winters my family gathered there to hike, ski, fish and camp. I was excited to take my children there and introduce them to a sport Bruce and I have grown to love.

First and foremost, I cannot say enough good things about the kind and helpful folks who run the Red River Ski Area. Not just patient. Not just friendly. From the young adults running the lifts to the men fitting us for ski boots, these people went out of their way to help us along and make us feel welcome.

And believe me, we were a total nuisance. 

Our 7 "beginners" fell off lifts, tackled ski instructors, tripped down stairs, hurtled downhill completely out of control, ripped off lift tickets, misplaced rented skis, fed wildlife on the trails, harpooned people with ski poles and had to be rescued on the slopes after sunset by ski patrol personnel on snowmobiles. (Macy, Genet. I'm looking at you)

This trip would also not have been possible without good 'ol Memaw & Gdad. They wrangled Chapel and prepared hot meals while Bruce and I played with our older kids. This time spent with our bigs without our little "tagalong" was a gift. And Chapel enjoyed loads of spoiling without all his big "tagalongs" to distract Gdad and Memaw.

I think I had subconsciously dampened my expectations in case my kids were whiney or total weather wimps (a cardinal sin in our home). While we weren't surprised by the incredible amount of effort it took just to get onto the slopes each day, nothing could have prepared me for the sheer joy I felt teaching my kids to ski. The kind or pride and delight that makes your face hurt from smiling. They waited when someone fell behind, then cheered on the stragglers as they came into view. Our kids have never seen Bruce or I ski (or anyone else for that matter), so they were very impressed with our amazingly average skiing abilities. Shep, after watching me zip down a placid blue, exclaimed "Mom! You're not slow AT ALL!" #highpraise! I'm happy to report that every single one of our kids not only enjoyed skiing, but were confidently skiing greens and easy blues by the end of our trip. Shep, Mattie, Elle and Reuben managed to remain fairly modest about their quick mastery of the sport while the big girls lagged behind a bit. And don't get me started on how grateful I am that no one suffered an injury greater than a blister.  It will be a while before we can swing another ski trip, but it's something we're already saving for and can't wait to experience again.

And now, by popular demand, the return of Chuy Cam:

Chuy Cam Ski

You are my blinky strand.

The lights are untangled, tested and hung. The big reveal has taken place. The house looks cheery and bright. Then there you are. In the middle of a half mile of lights you appear. The lone, blinky strand. Through some scientific process I don’t claim to understand this strand appears to be like all the others until it has “warmed up” for a bit. 1,000 tiny lights provide a steady glow, framing the house is soft light… but your eyes can’t help but be drawn to the persistent staccato of one, blinky strand.

You, my child, you are my blinky strand.

Unexpected. Bold. Unique. Defiant. Charismatic. Improperly labeled.

Never one to blend in or back down.

You break up the monotony.  

You are just you. Being who you were created to be.

You frustrate and intrigue and inspire me.

You test the limits of human patience.

My life before seemed safe.

Consistent.

Manageable.

But now I’ve seen challenge and danger and sacrifice and abundance.  And there’s no going back.  While you were showing me who you really are, you have shown me who I really am.

"This little light of mine, I'm gonna let it shine...

Hide it under a bushel? No!

I'm gonna let it shine!

Let it shine!

Let it shine!

Let it shine!"