Halloween 2000 was memorable. Ian, 4 1/2, was recovering from his 2nd brain bleed and his first major brain surgery. His motivating goal was to be “well enough” to return to preschool for the annual halloween parade.
I grew up in a family that valued homemade. A Walmart princess or super hero did not pass the muster. And my daddy, aka Mr. Fixit, was the genius behind our most elaborate costumes. One year I was a paper mache Humpty Dumpty. The year we won the blue ribbon in our town parade, my brother was the moon, I was the sun and we pulled my little brother, the shooting star, in a wagon. Oh how I wish I could find pictures. I have fond memories of halloween. Our neighborhood came together. Everyone participated. As a child, I don’t remember anything ‘dark’ about the holiday.
Sadly though, as a parent, I became aware of the sinister side of halloween. I felt robbed. Even though my kids still participated, halloween didn’t have the same allure. My muted enthusiasm made it easier to be satisfied with store bought costumes. Besides, that was what everyone else wore, and my kids were content to fit in, be one of the crowd.
After Ian’s health scare, the timing of halloween seemed to be an important target to focus on. And because we wanted to make it a big deal, we called upon Grandpa to dust off his costume skills. Yes, this would be a halloween to remember. Ian agreed that returning to preschool as a one of a kind robot in time for the annual halloween parade would be awesome.
Ian’s health condition was first discovered when he was only 18 months old and his brain bled for the first time. After a week of sleepless nights, tests and waiting we were told that his very rare diagnosis produced “bleeders and non bleeders”. If Ian’s brain stem hemangioma was a bleeder it would likely bleed within 3 years. I was a fearful mom and this news made me even more fragile. I tried so hard to protect him. Glass houses don’t protect red headed toddlers. Time went by and my constant worry did lessen. But 3 years to the day, Ian bled again — the day etched in my memory.
The Birthday Party and Ian’s second brain bleed
It was a Saturday morning. Our basement on Elkins Park Road buzzed with giggly princesses. They had come to help us celebrate Becca’s third birthday. For this very pink occasion, we played dress up, made necklaces, enjoyed lots of lipstick and all things girly. Ian was present but subdued, a sure tip off that something wasn’t right. I was a mess trying to be happy and fully present for Becca and her princess friends while deep in my gut, the nausea mounted. As soon as the princesses went home, our family went to the hospital ER. Five hours later my hunch was confirmed. The listless, clumsy, Ian was the result of a bleeding brain stem hemangioma.
By Sunday morning, Ian’s right eye was locked into the corner and his limp and right sided weakness was very pronounced.
This bleed, bigger and more dangerous than Ian’s first, warranted surgery, even though still extremely risky. Our Philadelphia neurosurgeon, having never done this surgery, consulted with a renowned Dr. Michael Scott at Harvard medical in Boston. In what seemed like a blink, he agreed to make room on his calendar to operate on Ian. I remember the break neck pace of the weighty life and death decisions made as quickly as if we were deciding what was for dinner. Within about 6 days we were transported by a generous friend in his private plane, and met with the famous Dr. Scott.
The brain bleed and surgery left deficits. And how much Ian would recover was a BIG question mark. After his first bleed in 1997 the doctor said Ian had a 30% chance of a full recovery. (Ian did fully recover except for needing glasses and some eye patching) After the second bleed and Ian’s unprecedented surgery the doctor remained silent.
Doug and I, still reeling from the news of a ‘failed’ surgery, felt very unsure of how to proceed. Dr. Scott explained that since he couldn’t see ALL of Ian’s brainstem hemangioma, removing part of it would cause excessive bleeding and even more damage. And of course he couldn’t conclude that until after 8 hours of tedious stressful, risky surgery. We were angry. Dr. Scott called Doug and I into a closet like room to give us the news. “Ian is in recovery and doing well. But I couldn’t remove the hemangioma.” What? Stunned, Doug asked, “you mean there is still a time bomb in Ian’s head?” Dr. Scott, with a look of kind concern said, “we all live with time bombs in our heads. Go home and love that boy.”
God Struts His Stuff
Returning home to Philadelphia, I hid the robot costume so as not to get Ian’s hopes up. With no specific guidance except to love our son, we struggled with a way forward. Within days though, as wide eyed spectators, we watched as Ian dramatically recovered right before our eyes. Therapy for a 4 year old is quite easy… let him play. It was as if God brought us to that place of powerlessness with dimming hope, only so He could strut His stuff. Our halloween plans went from a great idea, to maybe next year, to oh my gosh it’s going to happen, in a matter of days.
Later that year, no longer angry, I sent a Christmas card, including a picture of Ian, to Dr Scott thanking him for his wise decision to turn back. Ian’s photo was added to Dr. Scott’s wall of success. Isn’t it true, that sometimes God says turn around? We had to travel to Boston, to the world’s expert, to come to a place where God said, No, turn around. At the time, we couldn’t see God’s plan.
That initial hemangioma, that alerted us to Ian’s rare diagnosis, and bled exactly twice, has remained present but dormant on his brain stem ever since. A reminder that even today GodsGotThis.
The much anticipated halloween parade at Love ‘N Laughter preschool was momentous. Ian’s stiff, labored walk and dazed look added to an already authentic looking robot.
I marveled from the sidelines. We both had to work hard. Me to keep my wet eyes from dripping and Ian to walk and see, a challenge even without his cumbersome costume. I was so proud. Many would have chosen to lay low the first day back. Ease into things. Sit on the sidelines. Ian has never been a sit on the sidelines kid. While my dominant emotions included joy and pride… I confess there was some sadness mixed in. Overnight it seemed as if my carefree happy go lucky ginger fireball transformed into a determined 4 yr old with purpose. And his purpose…to fit in. To be just like everyone else. The same purpose that drives him even today.
Inside now, enjoying apple cider and cupcakes, Ian asked to take off his costume. “Really?” I asked, knowing this would blow his cover. Ian didn’t care. And neither did his classmates.
As I compare Ian’s recovery at 4 to his recovery at 22, the difference is profound. At this stage, it has less to do with Ian’s physical deficits and more to do with how his peers respond to him. Sadly, now he cares what others think. Sadly, his peers are less accepting. Sadly, even though Ian’s purpose to fit in hasn’t changed, until it does change, he’ll struggle to live the purposeful life God has for him.
The Burden to Fit in
I can see it so clearly now! That’s it. That is Ian’s struggle and at times it has been my struggle and probably yours too. Fitting in. Being accepted. Being one of the crowd. What a dreadful, burdensome goal.
The Flimsy Promise of a Mask
Think of a time when you relied on the masks in your closet to fit in, to feel assured. You believed their promise of protection, of security, of feeling accepted. It’s exhausting! I remember as a young pastors wife and feeling burdened by that title. I strived to play the part. I cared way too much what others thought. Eventually, I crumbled under the weight of expectation. And when I did, in a heap and broken, I experienced freedom. It was as if God sighed, Phew…. NOW, finally, I can use you.
Psalm 139 (I encourage you to read the entire passage)
Psalm 139 tells us that God searches us and knows us. He knows us completely. He knows our words before they reach our tongue. He knows our thoughts before they influence our action. He isn’t surprised by us. He knows every concern, every joy, every hurt. There is nowhere to run from His Spirit, nowhere to escape His presence.
1. The Only Opinion that Matters The Pharisees dismissed this truth. They were more concerned with their reputation than with their character. They were more concerned with what people thought about them than what God knew about them. We say we don’t like hypocrites. And yet…we so often are. Galatians 1:10 10 Am I now trying to win the approval of human beings, or of God? Or am I trying to please people? If I were still trying to please people, I would not be a servant of Christ.
2. Believe who God says you are Only God’s labels carry truth. I list just a few… “fearfully and wonderfully made”, “image-bearer of God”, “significant”, “honored”, “dearly loved child”, secure in God’s hand”, co-heir with Christ. I pray for the day when Ian embraces his deficits and believes Gods labels about himself.
3. Embrace your God given story Ian is a miracle. He knows it. His doctors know it. Facebook knows it. But for now, he would rather pretend he doesn’t know it. He would rather be part of the crowd than an extraordinary miracle. What a waste of a tragedy. I pray that someday Ian will embrace his story. And when he does, watch out. Then, he’ll live the purposeful life God intends.
As I watch Ian shore up his mask, to face another burdened day, I can’t help but daydream about heaven. Can you even imagine? Everyone will fit in. It will feel as untroubled as a bunch of four year olds enjoying cupcakes and apple cider. God will insist that each of us check our mask at the door. Every person will be completely authentic. Will I recognize you? Will you recognize me?