Way back when
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 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 a wagon with my little brother, the shooting star. Oh how I wish I could find pictures. I have fond memories of halloween. Our neighborhood came together and 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 or 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 and 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 and 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.
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?
Lisa Lucas says
Debbie, I continue to be thankful and amazed by the power of your stories! I learn so much by your willingness to uncover the not-so-pretty side of your relationship with God…your fears, your struggles, your anger and yet we see how God answers all these things in His most perfect way. Especially in these troubled times, it would be amazing if we could approach each other without our carefully constructed masks and we could see each other as God sees us. Regardless of whether people comment or not, just know your words are touching someone in some way. But the way, I love the pic of your at the top of the page…you are gorgeous in blue!
Lisa, Thank you my creative friend! I struggled mightily with this message. There had to be alot of “story” making it long. But there is no denying Gods work in my life. And I’m delighted for this avenue. I appreciate your comment so very much.
Mary Seal says
I don’t know how you do it. You repeatedly write about things that make me positive that at various times over MY life, you have been peeking in my windows!!! The urge to “fit in” is a powerful one for me. Want to make me feel inadequate? Make me feel different than the rest! Somehow the adjectives God has given us, which you listed in your blog, are not enough to outweigh the ones our peers give us.
Dear God, thank You for the gift of the Hucke family in my church!
Mary… Humbled! Thank you.
Marilyn Lehning says
Thanks for sharing, your story reminds me of my life.
Guess it is true, we are all different, yet share so much of the same.
God is blessing you and you are blessing others.
I guess it’s true. We humans really do share many of the same struggles. Amen that it’s not a waste.
From one pastors wife to another I agree that it was a difficult title that came with expectations I couldn’t meet! Such hard times for me. Now, I’m free to be me and love God, worship him as I choose and be who he created me to be. Praying Ian is set free to be who God created him to be quickly!! May he embrace himself!!
Love your testimonies through your life.
I am so thankful to have met YOU early in my ministry! Authenticity oozes from you in a way I found absolutely attractive.
Kathy Day says
Hi Debbie: Your picture is beautiful and definitely not a mask. You are God’s image bearer. Your face reflects God’s love for you and others. I read Psalm 139 because of you this morning. I am so blessed. I want everyone to read it this morning. Praising God. Kathy
His word, NEVER comes back void. I find it amazing how I can read the same passage and still it breathes new life again. Thank you Kathy!
Bonny Gaffney says
This is exactly what I needed today. I plan to read it every day for (at least) a week! Thank you.
Bonny, Thanks for your courage. And to me… I would count you among the most self assured people I know. I will pray you will know His freedom.
Ginger Horner says
Thank you–again–for a wonderful message. Pleasing God should be uppermost in our hearts and minds. As a life long people pleaser, the reminder that God knows us and loves us, regardless of our faults and, is so comforting. He loves us and wants the best for us even though we are not perfect. I grew up pretty much striving to be “perfect”–for parents, family, friends,– but, in my mind it was never good enough. Knowing that God loves us and knowing that we, as humans are imperfect, is a reminder that in His love and guidance we can feel comfort and acceptance.
Oh, yes, striving to be accepted and not rejected, has been a life long struggle. Still working on it–but knowing God loves me is powerful.
Thanks for your message–as always, Debbie.
Lifelong lessons for sure. Thanks for sharing Ginger.
Tracey Pilsch says
Thanks for writing Debbie! A great remembrance of difficult times, for sure, yet God Had it!.
This concept of taking off our masks and simply being who God made us to be is what God spoke to me at a Youth For Christ camp the night I prayed to receive Christ and follow Him as Lord. As a 14 year old figuring out my way in High School social circles, I knew it was TRUTH and found it so freeing.
Blessings on you and the family-
Tracey, Thanks for walking through this long journey with us. HS social circles are definitely where satan has a field day. How fortunate for you to escape some of that! Good to hear from you. Blessings to you and your family. D
Anne Kole says
Thank you again, Debbie, for your honesty. I appreciate the way you weave the threads of your story into a beautiful and wise lesson for me….every time! I love Psalm 139. It never fails to encourage me by reminding me whose daughter I am and how much God loves and cares for me. Like many others, I longed as a teenager to fit in. I didn’t even like my name, thinking it was too plain. I still fight the “need” to please others. But all I really need is Jesus and he’s the One I want to please, out of gratitude for his grace, love, and acceptance! You are one of God’s treasures, Debbie. Never stop writing. Love you and your family!
Your comment made me smile. I never liked my name either! Thanks for your kind support! Love back at you. Debbie
Jackie H says
Please please write a book!! Your story telling draws me in and I am sure others would be too!! You speak so personal and with such Godly wisdom!!
Wow… thank you Jackie for your kind encouragement. So nice to hear from you. Debbie
Nancy Sellin says
I enjoyed reading your words. Of course, I think that Ian is a miracle no matter how he expresses it. He is a miracle and a teacher–just by being in the world.
I hope you’re writing a book.
Thanks Nancy. I appreciate your kind encouragement.
Debra Harbaugh says
You are a light in the dark night! God is watching over you and your family but continue to take it one day at a time. I am impressed with your father’s Halloween costumes! My mother was also good at making home-made outfits! I went as a kitty cat in the third grade when I was growing up. The costume had a a very heavy tail to swirl around as we went door to door for candy! On another topic, I continue to praying nightly for Ian along with you and your family. Also, I read that one person said you need to write a book….and agree!
All my love,
Thanks Debra, Always appreciate your support! 🙂
Love your writing skills and story telling! I never thought of it as “wearing a mask”. As I get older and maturing in life, my mask been slowly melting away. My mom wore her mask until she passed. Always so worried about what our church congregation thought of her (us). It was a burden she held onto until her last day. I wish she could have read your words.
Liz, Thank you for your comment. I do agree that as I’ve aged it has gotten easier for me. But, perhaps a generation thing,I believe my mother too concerns herself alot with what others think. Will be interesting to celebrat Thanksgiving with Ian and his nose ring. 🙂