Faith and the Waiting Room

Today, the Struggle Bus is taking a detour and stopping at a new and (thankfully) foreign place. I bring this update to you from a hospital’s surgical waiting room.

Just a few minutes ago, I kissed my husband goodbye and watched two nurses wheel him back to the operating room. I should see him in about three hours’ time. At 34 years old, this is his first surgery. In an effort to keep the mood light, I teased him as we waited in the holding area- when we do something in this family, we do it with style! It couldn’t have been his tonsils, or even his gallbladder…he had to go all out and go for the spine! Years of being rough on his body as a teenager through athletics and other crazy adventures have caught up to him, and without getting technical, a disc or two in his spine have caused him around-the-clock pain for the past several weeks. He has a phenomenal surgeon, and the surgery, a Microdiscectomy, is certainly not the worst thing he could be facing. Still, I’d rather be pretty much anywhere else right now and I’m sure he’d concur!

At 34 years old myself, I’ve never been in this position. I’ve never been alone in a surgical waiting room. David’s case has been given a number, which it appears on an LCD screen now and again. The number is color-coded to correspond with the progress of his surgery. At the moment, this number on a screen is the only real connection I have to the man I love.

A minute or two ago, a page came across, and I abruptly stopped twirling his wedding ring around my thumb.

“Will a member of the Smith family please approach the desk for consultation?”

I felt my heart speed up instantaneously. He’d only been back there for fifteen minutes! What could have happened already? I approached the desk, and the woman behind it simply stated “The surgeon just wanted to let you know he’s begun operating, and everything is going fine.” I stood in silence, very awkward silence, until she said to me “That’s all, honey. You can go back to what you were doing”.

What I was doing was just non-productive worrying. I decided putting my thoughts into words would be better than continuing to count the minutes he’s been back there.

I looked around me as I walked back to my seat in the corner, and observed people in what appeared to be a variety of different emotional states. Some are sleeping. Some are staring at the LCD screen. Others, like me are on their laptops, probably making a similar effort to escape from the reality at hand. One thing we all have in common is the momentary look of panic when our names are called. I have my back to the door, because I don’t think I could bear to see anyone get bad news.

Simultaneously, I’m glad I’m alone and wish that I wasn’t. Notoriously a talker, I can honestly say that this is one time where I’d rather not have to make small talk with anyone. However, I know it must be difficult for David’s mom not to be here waiting, as well, so a part of me wishes she was.

I feel strangely calm, at this point. This is out of the norm for me. Anyone close to me can attest to the fact that lack of control over a situation is not my strong point. Perhaps I’m in a better place because the last several months have been a repeat demonstration of unpredictability. Furthermore, perhaps I’m just having faith.

A few years ago, I got this small tattoo on my right wrist:IMG_20160427_140117
When the tattoo artist was about to begin, he asked me if I wanted the writing facing me, or facing outward. Without hesitation, I told him I wanted it to face me. Its message was intended to serve as a reminder to me on days when the struggle seemed overwhelming. Today is such a day.

I’ve been asked many times “What does it stand for?” Or “What does that mean to you? Is it because you work in healthcare?” Yes, part of it is fitting due to the nature of my profession. But the message that resonates in me is as follows: As long as your heart is beating, and you can find it within yourself to have faith, beautiful things lie ahead.

For me, the beauty in this stressful and scary day is the opportunity to see my husband live free of the pain that’s taken over his life as of late.  I’ve probably said before that one of the most heartbreaking feelings is to see someone you love struggle. Over the past few weeks, I’ve watched pain frustrate and exhaust him. He’s never complained; it’s just not his nature. But his quality of life is going to improve incrementally after this surgery.

For the next few hours, I know I’ll continue to be nervous. I want nothing more than to see him again right now.  I know this is for the best and I will continue to have faith. For the record, I don’t think “faith” has to have a religious connotation. It can be as simple as just believing in something, some meaning bigger than oneself.

To anyone who has reminded on the Struggle Bus this far into the detour, thank you for affording me the chance to put my nervous energy to use!

Our Daughter’s Diagnosis Changed How I See My Husband

Routine can make a person blind to incredible beauty. It’s something that slowly happens, over time. You can drive the same route to work day after day, but it isn’t until you are in the passenger seat that you notice the old farmhouse hidden just behind the trees. There, stopped at the same very same traffic light for which you normally have very little patience, you are able to take in the true beauty of that old property-the way it sits on the small pond, the character of the tin roof. Being a passenger can afford you the chance to truly take in the vibrance and sights that are otherwise muted by your focus on the destination instead of the journey.

Raising young children with your spouse can have a similar effect. It’s not that you forget that he is wonderful. You’re married to him, after all, and part of marriage is choosing that person again, day after day. But the days become months, and then years. Your children grow, and you settle into a routine. Though it is far more rewarding than your morning commute, it is a routine nonetheless. Together, you master the basics of the parenting thing. Without even realizing it, each of you take on different roles. They become second nature, and you find yourself going through the motions of getting ready for the day, not without care, but more like a well-oiled machine. It just flows.

Until something rocks your world.

For David and I, this was Piper’s autism diagnosis. Piper is our three-year-old firecracker. Born in July and the youngest of our three children, she entered the world full of spunk and joy. Somewhere between the ages of 2 and 3, her bright, contagious laughter dimmed. The words and giggles stopped coming, and tantrums and isolation took their place. Great concern led us to her Pediatrian this past August, and that day set off a chain of events that threw our routine out the window.

For a while, it was terrifying. I felt that while the rest of the world carried on, time for us had come to a screeching halt. I was scared for Piper, and what her future might hold. I was worried about Kaydence and Cameron-riddled with guilt that we were robbing them of quality time because so much of our time was invested in getting their sister the help she desperately needed. I was worried about how this would affect David, and how he might internalize his feelings in such a situation. I was even more worried about the impact our new reality would have on our marriage.

There were some dark days, for sure. Watching your child struggle will inevitably cause a strain on any relationship. Sheer exhaustion broke us down at times and exposed our children to a more stressful environment than we’d have liked. Then, things started to come around. With an incredible support system and remarkable therapists and teachers, Piper started communicating. It was a thing of great beauty to see her light shine back through as the frustration left her body and mind. We certainly put in some hard labor, but the well-oiled machine got a much-needed upgrade to meet the added demands to our routine. With a few hiccups here and there, we worked together and caught onto this parenting thing again.

What happened next was nothing short of incredible.  I deliberately took a step back and became the “passenger” again. I forced myself to actually observe our new routine instead of focusing on where we needed to be next. In doing so, I was given one of the greatest gifts in a decade of marriage; I am now able to see my husband in an entirely different light.

I see a man who has committed every fiber of his being to keeping our family together. It suddenly occurred to me that my heart wasn’t the only one that ached over the past few months. His did, too. Despite that, he has carried on with the calm, steady manner that I always recognized, but never realized was so vital to our relationship. On Piper’s toughest days, I still tend to break down. It is David that reassures me, allows me a reprieve, and steps up to the challenge without fail. I has always been David who gets the children off to school each morning, yet until I sat in that passenger seat and observed his routine, I never considered that he’s used this time all along to learn each of the children inside and out. I see now that this has provided Kaydence and Cameron with the consistency and nurturing they’ve needed to weather this storm with us.


While I’ve never known David to be anything but a loving father, I now see that learning to be a father to a child with autism has made him so much stronger. I’ve thanked so many people along this journey for their support, but the greatest of thanks is truly owed to my husband, a man who never for a second let us lose our way.

I Never Wanted to Need So Much

Some life lessons are just more difficult to understand than others.

Life’s balance, as I know it, has completely shifted over the past six months. The independent, dependable person I once was seems to be a distant memory-replaced, instead, by what often feels like a scattered shell of my former being. The woman who never turned down a request for help has become someone who feels like she’s constantly asking for the graces of others. Simply stated, the giver has become the taker, and it’s terrifying.

I am fairly new to the community of special-needs parenting. Six months ago, the only “special need” I had was to leave work for a few hours when my son fell off of his new bike and broke his nose! My reality now is stretching FMLA leave to cover Piper’s visits to the developmental pediatrician, the pediatric neurologist, and multiple weekly therapy sessions, just for starters.

Presently, I find myself overwhelmed and anxious over the mere thought of what my daughter’s care means for my personal and professional life, alike. There’s a lesson in here somewhere, and I feel like the only way to find it is to reach out and ask those in my professional life to consider ME, the  person hidden behind all of the requests.

I ask you, please, to understand how scary all of this is for me. We’ve only known each other a little over a year, and that makes all of this so much harder! You barely got a chance to know me professionally before my life became so demanding, so I’ll explain the best way I know how. I was YOU. I was ever present, driven, and reliable. I was the person who filled in without question when “life happened” to someone on my team.

With the exception of needing regular time off to coordinate my daughter’s care, I am still those things. Because of my needs, I feel like my performance is frequently overshadowed by my need for accommodation. I give all I have each day I work beside you, yet my sense of personal responsibility causes me to feel like a liability. Unless you have walked this path, you cannot understand how indescribably heart wrenching that feeling is.

I want you to know, also, that I see YOU. Honestly speaking,  that is what makes this reality hardest of all. I see how it affects you when I leave you short-handed. Not only do I see you, I care about you. I am mature enough to realize you don’t harbor resentment towards me, personally. Still, I internalize your frustration in this situation, and I feel tremendous guilt over the fact that my needs regularly come at your expense. If I didn’t value you as much as I do, this wouldn’t be so hard.

I ask you to understand that besides being a special-needs parent, I’m human, just like you. There will be times where I will be sick, need surgery or lose a loved one. Like you, I will need occasional time off to take care of my own needs. Please fight the immediate instinct to be annoyed by this, due to the fact that I already ask for so much. I never wanted to be needy. I wouldn’t change a thing about my daughter, but the gravity of the situation regularly sits heavily on my shoulders.

Lastly, I wish for you to understand how much I appreciate your continued support. No one but me is responsible for the feelings I’ve expressed. Life hasn’t been easy as of late, and though I may seem like an open book, what I share with you often doesn’t scratch the surface. Collectively, you seem to accept that, and continue to embrace me, even with all of the needs I never wished for.