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.