Month: January 2020

It’s no secret that I love my Lauren Daigle album, Look Up Child. It plays on repeat in my car. Rescue often brings me to tears. You Say was my anthem and reason for purchasing the CD. Rolling Stones is Caleb’s favorite to sing along to. The whole album is great, but the title track isn’t one that initially stood out to me.

A few months ago, I was at the garage sale fundraiser for a friend’s baby girl, Landry. Her family was raising money for her growing medical bills. Shortly after birth, Landry was diagnosed with Alternating Hemiplegia of Childhood or AHC. She deals with dystonia, paralysis and seizure-like episodes which interrupt her development and her mom’s blissful state of raising a new baby. Instead of days filled with new firsts, typical milestones and just soaking up all the new baby goodness, her family is faced with fear of what might trigger another episode. It seems so unfair.

As far as parents go, Landry is blessed with the best. Her mom Katelyn is a pediatric physical therapist who Gage had the pleasure of working with for intensive sessions. By proxy, I got the pleasure of chatting with and getting to know this amazing woman as she worked with my son for hours at a time. Her experience and knowledge as a PT don’t allow her the luxury of living in denial like I did the first year of Gage’s life. But by the grace of God, her faith carries her through. As she wrestles through each struggle, she finds a way to praise him throughout and stay rooted in eternal truth. She writes and shares in a beautifully authentic way. You can follow their family’s journey and see for yourself at forlandry.com or on Facebook and Instagram.  

A hug in her driveway was the first encounter I had with Katelyn since Gage’s PT session last winter, and my first chance to meet sweet Landry. We caught up and compared notes on some of our unique parenting struggles like trying to choose the right meds, doctors and treatment. We also spoke openly about anger and jealousy we feel and it was so nice to confide in someone who just gets it.

Katelyn told me she hadn’t cried in weeks, for fear that if she started, she wouldn’t be able to stop. She also shared some advice she’d been given on how to stop crying – look up. I realized she was referring to the physical effects of an upward gaze to help stop the flow of tears. But as I heard the words, I couldn’t help but think of the Lauren Daigle song, Look Up Child. The title track that didn’t seem to make much of an impression on me now wouldn’t leave my brain.

The upbeat vibe of the song itself seems to disguise the anguish within some of the lyrics. Maybe that’s the point? Taking a closer listen and look, I relate to the cries of “where are you?” and the talk of darkness, doubt and suffering. All of that is countered by a reminder to look up. Maybe sometimes that’s all we can do. Our best option is to lift our gaze, shift our focus toward God and rest in the truth that he is in control, even when we can’t understand or don’t like the way things are unfolding.

Each year I try to pick one word to focus on, rather than being overwhelmed by a long list of goals. Two years ago, the word was peace. I still find myself longing for it often in the midst of day-to-day life, so it’s still a good reminder. Last year, my word was hope in an effort to maintain a positive perspective when faced with challenges. This year, I haven’t been able to settle on just one word. So I picked two – try and trust.

The word try seems like a natural progression from hope. If I’ll allow myself to hope for the best, it will give me to courage to try new things, no matter how they may turn out. I don’t want to be frozen with fear and indecision, and sometimes, even when I know something might be a failure, I just have to take that first step to try.

Right now, the things we are planning to try include changes to Gage’s diet in hopes of decreasing seizure activity. Given our picky eater who we’re constantly trying to pack pounds onto, I know this won’t be an easy change. In an effort to learn the most about what will and won’t work, our whole family is going to try to cut carbs. That won’t come easily either, given my sweet tooth and Caleb’s love of crackers. But we’re easing in to these changes and at least going to give it a whirl.

Another thing I want to do this year is try and write more. I love having an outlet to share my thoughts and doubts. It really helps me process things instead of suppressing them. I also love sharing success stories and the victories we experience. So many of you out there love our boys and celebrate right along with us and it’s awesome! Lately, though, I’ve struggle to stay consistent in sharing. Sometimes it’s due to life being busy and me not making the time. Other times I just don’t feel like I know what to say. But consistently writing, even if it’s just for me and not something to be shared, is a good habit to strive for.

The reason for the second word this year is I felt like it was necessary—I couldn’t have one without the other. If I’m only focused on my own efforts and accomplishments, I lose sight of the bigger picture. If I’m so fixated on trying—chasing after the illusion of being in control—I neglect to recognize the times when I need to back off or let go. In order to try, I need to trust that there is potential for success, rather than only thinking of the negatives, what ifs or excuses. But sometimes instead of trying, I just need to trust—have faith that things will be alright, even without me influencing how they go.

I feel like the two-part dynamic is this. We have to keep moving forward, taking the next best step, making an effort, trying.  But when we get to the end of our rope, our own abilities are exhausted and we face defeat, we have to remember that it’s not the end. That’s not the whole story. Trying is on us – it’s about what we can and should do. Trusting is what invites God to be involved in the outcomes.

Trust in the Lord with all your heart;
    do not depend on your own understanding.
Seek his will in all you do,
    and he will show you which path to take.

Proverbs 3:5-6