How Long Will His Hair Be?

Sometimes I get caught up in an unending stream of answerless questions. Like, how long will his hair be before he can safely get a haircut? When August comes, and all the kids are excitedly picking out backpacks and markers and notebooks, will Tyler’s school supplies be on the shopping list? Will his closest friends drift away, not out of lack of love or desire to be there for him, but out of lack of ability to play together and carry on a meaningful relationship?

The last month has been a swirling, confusing whirlwind of turbulent emotions and dramatic changes. Was it only a month ago that Brian and I sat down with Tyler’s teacher and school counselor to discuss the thought that his constant burping might be something more? Only a month since we met with a behavioral therapist and meticulously analyzed our family history to locate any hints of anxiety in Tyler that might be causing these tics (if that was even the word we used)? How absurd that all seems now!

Highlights from the last month constantly come back to my recollection:

·      The time I took him to the theater to see a movie he had been really looking forward to. During the previews, just as I was praying that he would soon become fascinated enough with the show that his burping would stop, a mom two rows ahead of us was apparently offended enough by this boy who might dare interrupt her children’s experience that she turned all the way around in her chair and scowled at me. Twice. We got up and left before the previews were over.

·      That definitive visit to the pediatrician. For the first time in six years worth of six children’s ear infections and sore throats and wheezing, I broke down in tears in her office. Her usual boisterous, jovial demeanor was replaced by something I had never seen before. Her compassionate but sad eyes confirmed everything I suspected. No, it wasn’t my over-worrying imagination. Yes, this was definitely much worse. No, this no longer looked like a stomach problem. Yes, this was a neurological problem.

·      The overwhelming joy I felt after our first appointment with the neurologist when she confirmed our suspicion. Tyler has Tourette Syndrome. Answers! We finally had answers!

·      The day my mom offered to take the whole family out for dinner. “No,” I quietly replied. “I think it would be better to order take-out and eat here.” I watched the sadness of understanding fill her eyes with the comprehension of what I wasn’t telling her.

·      Encouraging Brian to continue with his plans to go out of town for a weekend to speak at a conference in Connecticut. After all, the neurologist had medications for us to try, and one was bound to work. Then a couple days later, I explained my utter, desolate sadness to him over the phone. “He’s worse than when you left. You’ll see it when you get home. He’s much worse.” Every day seemed ten times worse than the day before. The thought of what tomorrow might bring was too scary to imagine.

·      My rehearsed speech at the ER for why I thought they should admit him to the hospital. “My son can’t sleep. He can’t eat. We’ve tried every medicine our neurologist has prescribed. It’s 5 AM, and he’s been awake for 24 hours, and he can’t stop the jerking.” It turned out that his tics were much more convincing than any speech I had planned. How quickly it all happened! How suddenly a life can spin out of control!

·      The restrained curl sliding up one side of Dr. Ng’s face. The chief of pediatric neurology was trying to hide a smile of fascination while observing Tyler. “Your son has the most dramatic tics I have ever seen in my career.” Good! We have his attention! And the attention of the whole slew of other doctors trailing in with their video cameras to see this little boy tic and tock his life away. More doctors, more fascination, more interest in our son. It all means more help.

·      The follow-up visit to our pediatrician after hospitalization. I began to understand another depth of how serious Tyler’s situation was when our over-worked pediatrician who has difficulty returning phone calls offered to personally come to our house at a moment’s notice if ever the need arose. “Your whole life has just changed. All of you are going to need lots of help to get through this.” Yes. We will.

·      The day Annalisa read us her essay from school. The assigned topic was “the person who most inspires you.” Her subject was Tyler.

·      Yesterday, when I asked Tyler to help me put some of Brian’s products in shipping boxes to mail to vendors. My little boy, who just a month ago was acing every math test put before him, struggled to count out 25 DVD sets. A fateful combination of tics shaking his whole body and powerful medications dulling his mind made this simple task impossible. We then spent the next five minutes frustrated—he trying to say something, and me straining to understand. The talking-est boy I’ve ever known couldn’t communicate the simplest request: he needed to go to the bathroom.

It’s as if I’ve been watching a lid slowly close over my child. Each day, it steadily but surely encloses him, locking him inside his ill brain. Locked away from riding bikes or talking about Transformers or going to birthday parties or playing Minecraft with his best friend. Locked away from who he was.

Is he still in there? Behind the shroud of Tourette’s and the haze of medication, is the Tyler I know still present?

Just when I fear he’s lost forever, I get little glimpses of hope. Like when I made him come sit beside me as his brothers and I were stumped on how to assemble a Lego piece. He pointed to the pieces and, between jerks and twitches and shouts, managed one simple word: “I.” I handed him the pieces, and in seconds the stubborn problem was solved. There he is! There’s the boy who just five months ago was at the state Lego League robotics championship where his team placed third! There’s the boy who wants nothing more than to be a great inventor when he grows up. He’s still in there.

How long will he stay locked away in his little box? There’s no way to know. God may heal him in a moment, or we may walk this out for years to come. I can only pray and trust that his enclosure is a place where he experiences the comfort and presence of his Savior, not the terror of loneliness or despair.

While by outward appearances I seem to be handling Tyler’s illness well, my body betrays me with the tell-tale signs of stress. My teeth ache from the constant clenching I’m unaware of. My neck and back hold the strain of wandering uncharted territories. My memory fails me as I wander parking lots looking for my car or find myself in a doorway without remembering why I’m there.

I’m also experiencing grief. My tears are constantly just beneath the surface, and the slightest thought of what Tyler must be experiencing or how my life has been turned inside out cause them to spill over. I get annoyed by other people’s talk of sporting events or church activities or the latest book they’re reading. It all seems so meaningless in comparison to my son’s struggle. I quip and squabble with my husband over the most pointless things. Then I’m overwhelmed with sadness at the realization that I have allowed my own sorrow to take offense, devalue, and override his equally encompassing grief.

All the questions—those unanswerable, unknowable, unending questions—could drive me crazy. So instead, I remind myself to focus on what I do know. Jesus loves me, this I know. Jesus loves Tyler, this I also know. He is good and cannot be otherwise. He is present, and he is also saddened by Tyler’s state. I may not understand why Tyler and all of us must suffer so. The total inexplicability and insanity of the entire situation may confound me. But I hold on to this. Jesus is good, and Jesus is enough. And I can’t do this without him.

Two prayers, aside from the prayer for Tyler’s healing, have been my constant cries. The first is this: Jesus, I want to see you as bigger, more beautiful, and more able than ever. Through this experience, may I know your glory and majesty and might in ways I’ve never dreamed before. May I become more convinced of your love, kindness, gentleness, sufficiency, and wonder. Don’t let my circumstances diminish my view of you. Rather, let me be more in awe of you than ever before.

My second prayer: Don’t let me do this without you. I know my own tendency to handle things on my own. I want to be more dependent on you than ever before. Don’t let a tear fall without an awareness of your presence with me. It’s too easy for me to grieve on my own, yet I know that is poison to me. Teach me to invite you into every moment of sadness, anger, joy, worry, or bewilderment. I don’t want to continue the cycle of experiencing them on my own. Let this tragedy be the crucible in which old habits of self-sufficiency are shattered and I come through it completely surrendered and dependent upon you for everything.

So the next time I notice myself anxiously pondering Tyler’s growing, sandy blonde hair, I’ll remind myself of Samson. The Lord was his strength and hope everyday he didn’t cut his hair. As his hair grew longer and longer, so the Lord’s strength and provision reigned in, over, and through his life. Tyler is my Samson. The Lord is my hero. He is good. And he is enough.