Anything But Sorry

Image

“I feel sorry for your daughter.”

I felt the air forced out of me and paused, probably for too long, so she said it again.

“I feel sorry for your daughter. She can’t walk.”

It was at the end of monthly club meeting that Natalie attends. I looked at Natalie, concern buried deep in the lines on my forehead. If you didn’t know any better you’d have thought the words had passed right through my Natlebeth. I knew they hadn’t; when I paused, she paused. It was the exact moment the words caught us both in the center of our being and tangled around themselves before they struggled their way to the other side. It was brief, and barely noticeable, but it was present.

Words failed me. I fumbled out a response, still slack jawed, trying to preserve the dignity of both girls. She didn’t mean any harm; there was no ill will. Not an ounce. It was an empathetic and innocent response to seeing a girl her own age in a wheelchair.

And really, the only difference between the young girl and everyone else in the room was that she said it out loud.

Later I asked Natalie how she felt about what happened and what she’d like me to say if it happens again. We came up with a plan. And then we talked.

“Natalie, sweetie. You…see…well…the thing is…Natalie. *deep breath. regroup* You were made by a creator who knew you before I knew you. Before I even knew there was a you to know about. He made you, Natalie. You know the blanket Amber knit for our family? You know how when we are under it we talk about how much care and love and beauty went into that blanket, and how safe and warm we feel in it? God, He knit you like that. With care and with love and so much beauty…and purpose.

“Natalie, your dad and I don’t want people to feel sorry for you. Because we don’t feel sorry for you. We think you are a marvel and a force to be reckoned with and a pure joy. We think that feeling sorry for someone is the same as feeling pity. And for something to get pity it has to be pitiful. You Are Not Pitiful. And you have gifts to give this world. And SMA is awful and difficult and it’s okay to be sad about it sometimes. It’s really, really okay. But it’s not who you are. It’s not even close to who you are.”

Last week she hit a wall again. She wants so badly to jump and run and shoot a basketball like her friends. We talked about how having a heart that aches for belonging is so normal and so human. These talks are not an everyday occurrence, or even weekly, but they’ve become more frequent and full of emotion as she wrestles with the reality of balancing living and loss at a tender age. And as her parents, Dan and I struggle with acknowledging the loss and the bone deep feelings that come with it, and finding some fulcrum to balance all of that with ushering her forward into the full beauty of life.

Jesus said, “The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.” He didn’t say “I’ve come to give you glimpses of wholeness in bits and pieces,” or “I’ve come to sit with you quietly on the sidelines,” or even, “You’ll know the fullness of life after I heal you.” No. None of that, actually. Life in the full. And right now, in the dead center of all of the brokenness and mess.

And so that’s what we pray for.

That is our fulcrum.

So, pray for her. For us. Treat her like she is the age she is, knowing that eventually she will be the age you are. Talk to her like she can hear you from her seated position. Talk about her like she’s listening. She IS listening. It’s okay to ask questions, and it’s okay to feel your heart being tugged on. It’s okay to help us (God knows we need it). But, as her parents, we are asking to stop short of feeling sorry for her or for us, and move toward empowering and cheering her on. And when she questions and she forgets whose she is, remind her.

We are well aware of what SMA is waiting to steal and what it will attempt to destroy. And we feel the angst and frustration and sorrow at her losses, yes. But sorry for her? Not a single time. We want Natalie to fully know and experience life and purpose. We want others to see past the wheels and the can’ts and straight to the possibilities, her gifts and talents, her brilliance, and her charm and wit, and then propel her into the world with such a force that she moves mountains in her lifetime.

Nattaltree

Leaning In

Her daughter was sitting in jail, off of her medications. My daughter was sitting in a body that was slowly trapping her. Both having difficulty understanding and finding ways to cope with the struggle, feeling the full weight of genetics we didn’t intend to pass on and maybe the difficulties brought on by having been born to too-young mamas.

During one conversation, my friend described her life as if she were a giant rock near the sea that had to endure the waves beating against her again and again and again. Day in, day out, wave after unforgiving wave. Baby at 16 with a man who left, a husband she spent years visiting in federal prison, double mastectomy, depression, miscarriages, her grown child in an out of trouble and now in jail facing a long term sentence.

We cried together. Prayed together. I tried to find the right words, comforting words, encouraging words, words that let her know I heard her and loved her and believed in her like she’d done for me so many times over the last 5 years. Like when the hormones from having baby number three revolted against me, and Dan and I spent months miscommunicating and misunderstanding each other and missing the mark in our marriage. I was a complete wreck with my young kids and she dropped everything to come be with me all morning and told me things like I was a good mom, and to leave the dishes for another day, and it will get better, just hold on. And she was right. She usually is. She’s a wise woman so when she talks I tend to listen intently and believe her. I need women like her in my life like I need air to breathe; to see all of my ugly and mess and instead of loving me in spite of it all, loving me in the middle of it all.

A week or so after our conversation we sent a few emails back and forth with songs and Bible verses that were meaningful and made our tender hearts ache. She concluded that in our struggles we are leaning into each other a little, holding each other up. I like that picture. One without the other would fall, but leaning in to each other we are like the roof of a house, allowing its occupants to watch the storm pass, safe under the rafters.

She and I originally met because our husbands work together. One benefit of this is once a year we get to attend the staff Christmas party together. I like doing these types of things with a good friend. It’s safer for me. This friend of mine knows I dislike crowds and small talk and I know she loves the energy and the plethora of people to learn about. At things like this she lets me hang close and intuitively pulls me into conversations so I don’t have to wander around offering smiles that hide my introversion, pretending to fit in. She’s a master at noticing and filling people’s needs, which is part of what makes her incredible.

Back at the party our hurting hearts put on our best smiles, made conversation with wonderful people, and ate great food. There was a BINGO/gift exchange game which started out quiet enough. She and I sat shoulder to shoulder making little jokes with each other. But both of us had been holding back so much for so long, and one chuckle led to a giggle, then an outburst and hysterical laughter and the dam that had previously held back all emotion burst and flooded for 2 SOLID HOURS.

We were obnoxious. So much so that Dan’s supervisor questioned my sobriety during his weekly meeting the following Monday. Truthfully, it was a fair assumption. The last time the waves hit me like they have in the past year, instead of leaning in I found the bottom of a bottle of tequila and lost the top of our stair case. Also, this may be a good time to mention that our husbands, my friend’s and mine, are on staff at a church. But the way I see it, his coworkers also work at a church so they HAVE to forgive us. Right? It’s in their job description. “Thou shalt forgive unruly spouses of staff members,” or something like that. I’m sure of it. Besides, what WOULD Jesus do?

Back to the Christmas party, at our church, with the church staff, and their church staff spouses and my friend and I letting go of 365 days of holding back. It all ended with us dressing up with items from the Lost and Found area and snapping pictures in front of what was intended to be a backdrop for family holiday pictures. Honestly, it is my most treasured picture of us. A picture of us laughing, hysterically and uncontrollably, until our faces hurt while the waves continued to beat against us. A picture of us leaning in.

Dear friend, when the waves are unrelenting and you feel like the next one might just drag you out to sea, lean in. When the pressure of your journey is unbearable, lean in. When it feels like you’re confronting your deepest fears and insecurities, that is the time to lean in. When the loss is too great or the sting of death stands at your doorstep, sweetheart please lean in. Leaning in may not stop the pain or the pressure, or the sting, but you may just find yourself in a flood of laughter in the midst of the waves.

Beauty and the Beast

All this pain, I wonder if I’ll ever find my way? I wonder if my life could really change at all?

Andrew started walking a few weeks ago – right before he turned 17 months; Natalie is slowly losing the ability to walk –as she turns 9. Watching the two progress in their own direction side by side is sometimes more than this mamma’s heart can take. And while we’ve never really made SMA a centerpiece in our home, we have been very open with Natalie about what will happen with her body as time goes on.

But I honestly didn’t know it was going to be this hard to watch it happen. I feel so helpless.

All this earth. Could all that is lost ever be found? Could a garden come up from this ground at all?

I was in my bedroom a few weeks ago when I heard an ominous thud in our hallway. I took a deep breath and opened my door to find Natalie face first on the carpet, legs tangled underneath her, fingers sprawled, arms in a defeated half push up. It was the 5th time since she’d come home a few hours prior and more than the dozenth time that day. I helped her sit up. “Mom? … Mom, I don’t want to grow up anymore.” I wiped smashed tears from her face and asked why. “I won’t be able to walk when I grow up, and I want to walk, Mom! I just want to walk! I don’t want SMA anymore!” Damnit. This is difficult. This is so difficult. We sat there in the hallway and cried together and talked about difficult things. I confessed that I missed holding her hand and walking together.

Friends, we clearly didn’t choose this path for our child or our family. The physical toll on her body and ours, the emotional weight that is heaped on her, the frustration she feels, the way it commands the helm of our decisions, the swings it takes at our marriage and our checking account. We are tired. All of us, tired. And there are many, and I mean so many days when I wish SMA was a person so I could take all this frustration, all of this not understanding why, all of this loss she feels, and reel it in his direction with my ring hand.

And through the passing of that thought my heart becomes embittered, and SMA wins, and hate wins. And I refuse, refuse, to allow that to happen. And I loosen my fist and hit my knees.

Don’t run from tests and hardships, brothers and sisters. As difficult as they are, you will ultimately find joy in them; if you embrace them, your faith will blossom under pressure and teach you true patience as you endure. And true patience brought on by endurance will equip you to complete the long journey and cross the finish line—mature, complete, and wanting nothing. -James 1:2-4

The kids and I were playing outside last week when Natalie called me over and asked me to help her up. Once up, she grabbed my hand to brace against and we started a slow walk along the sidewalk. “We’re doing it, Mom. Just like we used to.” That beautiful face smiling up at me, glowing.

We walked like that, hand in hand, for 2 glorious driveways. And I carried her close on the way home, and breathed deep the smell of her hair, and thanked God for such a wonderful gift as my girl. And I thanked God for the gift of SMA in our lives, or else I might not have recognized the absurd sweetness that is walking hand in hand with my child.

All around, hope is springing up from this old ground. Out of chaos life is being found in You.

She is Beauty, dancing through life with this beast of a disorder.

And so, dear friends, we are learning together to waltz through this mess. To not run from or fight against the hardship, but to see the beauty that can be made out of us…out of our mess, out of the dust…if we allow it.

You make beautiful things. You make beautiful things out of the dust.
You make beautiful things.

You make beautiful things out of us.

(Song Lyrics: Beautiful Things, Gungor)

If I Write Without Love

For the love of it all. I just want to raise my children in a way that either makes it so they don’t need a therapist or that at the very least my mommy-antics amuse future said therapist.

Open your Facebook page and you are instantly bombarded with blogs instructing you on raising children properly. And every stinking time I feel like I’ve got one ideal down the pressure is on for the next and the next and the next. We’ve unintentionally entered a new round of mommy wars. One fought with a keyboard and a monitor instead of skinny jeans and homemade, locally sourced, organic, gluten, egg, nut, and dairy free, all natural lemonade cupcakes.

Friends, I just cannot take another blog that reminds me that the way I am parenting is subpar at best and likely traumatizing my kids. Just can.not. If you’re keeping up with the latest and greatest you’d know I’m supposed to socialize my kids but not plan play dates for them, protect them without hovering, teach them to follow me like quacky little fluffy ducklings, but give them wings to fly away from me like eagles. I’m supposed to make sure they are cultured, nonbiased, obedient, and respectful while they are simultaneously firmly rooted, unafraid to speak their opinion or share their faith, and challenge conventionality.

So after all that, I’ve thoroughly stalked my kids’ friends to know where they’re at after school so we can casually drop by that same location and oh, looky here – why don’t you guys hang for a bit, and please make sure your agent-of-change-go-get-um-fight-for-the-underdog-ness that we’ve been working on but not working on because I’m confused and conflicted after reading so many blogs doesn’t step on anyone’s toes; share your faith at every single twist and turn, but don’t beat them over the head with the Bible, and make sure everything that’s said is PC, but don’t really because – remember! – you’re a warrior! I’ll just be over here, but not TOO close, wearing your 5 year old brother in an ergonomically correct in-facing child carrier in case he needs to be breastfed (I read a blog about the benefits of extended breastfeeding. We’re thinking at least until college. Maybe grad school). And don’t worry, I won’t do anything dangerous like put your baby brother in a carrier on top shopping cart. Better yet, I’ll scout out the store while you’re here just in case other moms haven’t read that blog. I printed extra copies to handout. But sweetie, don’t forget have fun!!

Please someone tell me how I’m supposed to do all of this. But not in a 3 page blog with gorgeous pictures of your beautiful children in white clothing reading Tolstoy in Russian on a fallen tree in the middle of an enchanted forest.

No.

I need someone with a dirty oven. Or, you know what, a clean oven. I don’t freaking care. I don’t. I just wonder when everyone became an expert on parenting. I’m not knocking these blogs. I often find little gems of wisdom or feel the pain of truth about what’s at the heart of my parenting. But I think what started off as sharing and encouraging took a wrong turn and left us somewhere in the wastelands where no one is winning. Opinions and experiences started be shared as absolutes and truth leaving many women I’ve talked with feeling tired and defeated.

I sometimes raise my voice at my kids or say things I regret. And I apologize. My kids act cruh-haze-zee. A lot. And I love their precious crazy little souls to pieces. They get upset at each other and are learning to take discipline well. Dan and I get upset at each other and after 15 years are still learning to apologize and put the other one first. We are a mess and almost all of the time. A loving, caring, trying-our-best, praying-on-our-knees, screwing-it-up-and-asking-for-forgiveness mess.

Please know, mamma reading this, that you are loved beyond measure, created specifically for your children – your artistic abilities, love for cooking, enthusiasm for football, tech savness, compassionate heart – whatever it happens to be and everything it happens to be. All of your gifts and talents were woven together to make you the mamma for these kids. And please know the God who prepared you for this job is the same God who will fill in the gaps. Keep striving for betterment, but don’t make it your focus. Give yourself some permission to make mistakes; any and every mess you make is within the reach of his loving and able hands.

The After {Our Journey With SMA}

I was not in the front row of the church. I didn’t have my hands raised during worship. I didn’t even stand up most Sundays. I avoided conversations in the lobby, arriving late, leaving early. I didn’t reach the bar protestant ethics would have me aspire to. And it worried several people. I heard about their worry and was more or less given a to-do list of how to properly mourn as a Christian woman and the wife of a church staff member.

The church lobby became a mission field and I was the target. The nervous desire from others to say and do the right thing came at me like missiles. And to have all of that attention, all of the questions, and good intentions heaved upon me suddenly, unexpectedly, and without permission or invitation and from every direction was too much for me. It was overwhelming and violating. And I am guilty to the core of gushing my own misled good intentions and lengthy well wishes to my hurting friends. And I am sorry in a way I cannot explain.

What I really needed was time and space to think. To question. To merge the chasm between the God I was sure I knew Friday morning and the God I met Friday afternoon when we left to doctor’s office with each other, our daughter, and SMA. To know how this new permanent hurt fit in with what I believed about my Abba who loved me dearly but was allowing this suffering to come down on his daughters. On my daughter.

A few amazing women walked that path with me. They continued to turn me to God, prayed with me, loved me through it, allowed me to mourn and taught me to mourn better. They sat in the dirt and muck with me and cried. And they did it so effortlessly, and with such grace. And I am forever grateful.

I wish someone had told my 23 year old self that the worriers were wrong. That it was okay to mourn. More than that I wish they would have told me that it was okay for me to mourn how I needed to. That it was okay to sit quietly and worship God with tears, if that was all I had left. That it was okay to hurt for a very long time. That it was okay to not be okay for a time, with no time limit. And it’s okay to want to be left alone. It won’t feel like treading water every day, day and night, but some days it will. To ask for help on those days, especially.

That it’s going to be okay.

This will not hurt forever.

There will be joy again.

And God will be there with you, holding you up, holding your hand, holding your tears, holding the very breath He carefully crafted, but He will be there.

Four Months In {Our Journey with SMA}

In honor of Spinal Muscular Atrophy Month Dan and I have decided to share some of our family’s struggles and triumphs with SMA through a series of blog posts. Breaching this topic has been on my heart for a long time. Years, actually. I am a private person and sharing our journey is difficult. I don’t always handle the complexities of raising a child with a disability well. A lot of this is just like the rest of parenting – messy. However, I can’t allow all of this struggle to be in vain. My hope is that sharing these posts will help another family find comfort in knowing they are not alone, to shed some light on SMA, and encourage others to extend comfort and support to a neighbor, coworker, a friend.

This is our journey.

December 2007 – 4 months into the diagnosis process

Yesterday we trekked to Children’s in Denver over 50 miles of ice covered highway and interstate in minus 17 degree weather. The night before, Natalie woke up at 2am then 2:30am, then 3am, and finally at 4am Dan got up with her and they snuggled on the couch together while he checked the road conditions.

The day prior had been peaceful as we watched flecks float down and cover the old brown snow with inches of new white fluff. I had cooked ham and bean soup from the holiday left-overs and Natalie played with her new Christmas toys under Grandma’s loving eye.

I want to go back to that now. Slow time; live there a little longer.

In the weeks prior, I’d spent countless hours reading through the National Institute of Neurological Disorders and Stroke database, learning about Jerry’s Kids’ on the MDA website, and Googling just about any bit of information that I could get my hands on. I felt out of control and was searching for answers.

Each time I found a disorder whose profile Natalie did not fit I felt a sense of relief followed by guilt and pain. That diagnosis was someone else’s reality. Someone’s pain. Lives were in the process of being diagnosed and rearranged.

I didn’t want our lives to be rearranged.

We walked into the office with a stack of papers; lists of questions, observations and notes, a family history, and the catalog of possibilities I’d collected. I was operating under the assumption that they couldn’t rearrange what I had already put carefully in place. I was fighting against something that hadn’t even happened yet

I was unmovable.

I was in control.

Except, I wasn’t. After examinations, questions, observations, several doctors, and a list of what the physicians thought were the “best” possibilities we were referred to the muscle clinic at Children’s. Four months and no diagnosis. Another fruitless visit. More unanswered questions. More unknowns. More confusion. More frustration.

Dan held my hand while we drove home. I watched the cars fly by my car window and thought how strange it was that my world was steadily slowing, barely crawling while the rest of the world was still operating like everything was okay. I thought about the many times I hadn’t stopped my own life to grieve with a friend or to notice the pain in someone’s life.

Neither of us talked for the rest of the ride except to an occasional inquiry from Natalie or a demand for Cheerios from a grumbling tummy. It was nice to have someone who understood the profoundness and necessity of silence.

Natalie stayed with her grandma while Dan and I went to our church to talk alone, uninterrupted. The moment Dan wrapped his arms around me I lost it. I felt so out of control. No answers; more appointments; more tests. I was terrified that we were losing our baby girl. I was scared and could only imagine the worst at that moment. My heart was pleading with God, screaming at him. Begging him to stop. But there was no ceasing. No pause in our pain. Only silence.

8 Minutes in Parenting

It was a 16 hour day alone with all 3 kids. Dan had left before the kids got up and wouldn’t be home until well after the eleventeenth time they got up to ask for a snuggle or a glass of water or to use the bathroom or because there is creepy shadow or just to harass me say hi.

They’d actually been pretty good all day. Played imaginary games outside, built with legos, shared the coveted bench seat at the kitchen table. But in no way was I fooled. Every day in our house contains the same amount of crazy, plus or minus; how the day goes depends on how the crazy is distributed. And today, the crazy graph looked more like a mountainous landscape, spiked with high peaks and low valleys.

Take our trip to the store: The kids got ready exactly when and how I asked them to, AND they were patiently, repeat: PATIENTLY waiting at the door for me. What?! They even got into the van right away. That never happens.

Which is how I knew I was in for it.

Within 90 seconds of being inside Target, Isaiah had managed to fall down with the pole that was holding the “wait here” sign at customer service. I have no idea how this happened. Judging by the surprised look on his face I don’t think he knew either.

I awkwardly picked the pole up, tried to balance it, and replaced the now broken wait sign while holding a baby, apologizing to the cashier and the next person in line and using my positive parenting skills to redirect Isaiah (read: I used my “people are watching,” voice). I can’t be certain, but I’m pretty sure the pole wasn’t broken and the sign holder wasn’t tilting when we arrived, and there definitely weren’t any shards of broken plastic on the ground. But he used his walking feet all the way to the car and didn’t even run a victory lap around the car.

Our next stop was the garden store and they didn’t waste any time. Before I even got Andrew into the basket, Natalie had run over Isaiah’s toes with her walker, causing him to fall down…again…and scrape his knee.

As if taking 3 kids and some adaptive equipment to the store wasn’t enough to call attention to us, Isaiah went off like a siren. The cashier and every single person waiting in line turned to watch the fireworks. I scooped both boys up and took them outside to calm down. Natalie stayed in the store. Alone. Why? I still don’t know. I had to go back and get her. The whole scene was concerning enough for a patron of the store to come out and stand uncomfortably close to us while I looked Isaiah over for scrapes and bruises. Fantastic. I’ve always wanted my own CPS social worker.

But wait…you said 8 minutes in parenting. That’s roughly 4. Acute observation, my friend.

 The Final Four

They always seem to save up some crazy for those moments when there’s only one parent. Always. They know that one parent means no help and no help means no witnesses. All of this happened in the span of about 4 minutes. All of it.

Dan had a big night at work so I thought it would be great to pray with the kids for daddy and the team of staff and volunteers who were getting together. Hands folded, heads bowed, I barely got “Father, God…” out before Natalie yelled at Isaiah because he head butted her while we were praying.

Restart prayer.

Isaiah yelled because Natalie pushed him. She pushed him because he head butted her. Again.

Restart prayer.

Andrew crawled into the laundry basket sitting on the couch. While we were praying he leaned on the part facing out and almost tipped the whole thing off of the couch.

Restart prayer…Amen. Thank God!

I looked up to see that Isaiah had destroyed what looked like a pencil eraser. Except it wasn’t. It was an oil pastel. A red oil pastel. All over the living room carpet. He also ate some, but poison control assured me that they’re nontoxic, so at least there’s that.

I sent Isaiah to wash his hands while I carefully picked up little pieces of fancy crayon. While I was occupied, Andrew tried to get the remote from Natalie. She pulled it away. Andrew crelled (cry-yelled), bopped his head on the floor a few times, then bit Natalie in the leg. She yelled and pushed him away.

My children are violent.

At that point I realized the water had been running for way too long. Like water-all-over-the bathroom too long. Isaiah came out of the bathroom, shirt soaked.

I started vacuuming up the rest of the oil pastel. Now, there are 2 fears every kid has about the vacuum.

1.The vacuum is going to eat me.
2.The vacuum is going to eat my toys.

As a parent I have mastered the art of reassuring that neither of these things will happen. Ever.

I’m a liar.

I’m just going to get to it. I ran over a toy and Andrew’s fingers. Both of them. Stop judging me – everybody’s everything is okay. Except Isaiah might scarred for life.

8 minutes in parenting. The 8 minutes they tell you about but you promise to do better than your parents did, or than the parents of the screaming toddler in the toy aisle, or the mom who gives in and gets the candy bar for her begging kid in the checkout lane. The crazy that happens with young kids the hour before supper. Yeah, THAT crazy. The unavoidable crazy that creeps in no matter how many parenting books you read, no matter how many boundaries you set, or feelings you validate. And honestly, most days it’s so much more than 8 minutes. Most days, at least here, it’s somewhere between a few hours and every waking minute of the day.

And so now I offer a smile of solidarity to the mom with 5 kids, just trying to make it to the checkout lane without losing one of them. And words of encouragement to the mom of the toddler declaring her independence during our play date. And a bit of a chuckle to mom of the kid who has to touch every single bottle of ranch dressing on the way by. Because, after all, we’re in this together, you and me. We’re in this for the crazy and the calm, the challenges and the celebrations. But we are in this together.