Imperfect doesn’t mean unlovable
Editor’s Note: Each month on CatholicDigest.com, senior writer Lori Hadacek Chaplin will share a true story of faith in her new Everyday Miracles column. Do you have a story for a possible future column? Email editor@CatholicDigest.com.
In April 2011, I was standing in a doctor’s office with my 5-month-old baby, Maximilian perched on my hip, and the doctor offhandedly referred to Maximilian’s head as “deformed.”
Woah! That’s my baby you’re talking about, I thought, feeling like he’d punched me.
I was only seeing this doctor for a consultation, and he was supposed to tell me that the weird ridge that was forming at the back of Maxi’s head would go away as he got older.
Sure, Maximilian’s head wasn’t as perfectly-round as my other three children’s heads. But deformed? An operation needed? A lot of babies have weird-looking heads. “Deformed” felt like a dirty word to me. Indignation and dread swirled in my gut.
He must be mistaken, I assured myself.
After all, my baby was meeting all of his developmental milestones. He was normal! Still, I had noticed early on that something didn’t seem right about the shape of his head but initially doctors quelled my fears, telling me he would grow out of it.
As the doctor matter-of-factly told me that he believed Maximilian needed an operation, there was a whooshing sound in my ears and numbness crept over my body. He mentioned potential brain damage if we didn’t opt for the surgery — a zigzag cut from ear-to-ear and plastic surgery.
Just by looking at him, the physician was pretty sure that Maximilian had lambdoid craniosynostosis — a rare form — which is a premature, abnormal fusion of the soft spot in the back of the head. Babies with normal skulls have six soft spots that close when they are older. Maximilian’s had already partially fused, and it was causing his head to grow conically with flattening and a ridge forming in the back of his skull. If left unchecked, his head would become much more noticeably deformed, and it could impact his brain.
Seventeen months previously, we’d moved from Iowa to the Boise, Idaho, area. We happened to move to one of the few hubs where they do the kind of surgery Maxi needed. The doctor that diagnosed my baby’s condition was a foremost expert on craniosynostosis.
Not perfect, so what?
In my previous three pregnancies, I had worried about having a baby that wasn’t “normal.” There was this little voice in my head asking, Will you be disappointed if your child has something wrong with him? Will you love him as much as your ‘normal’ children? Will you be ashamed? Our society values perfection so much; how could my thinking not be influenced by this?
Ironically, when I was pregnant with Maximilian, I was at peace. Confronted with Maximilian’s craniosynostosis, I was comforted to discover that this did not make me want him less; it caused me to want him more. I loved every inch of him, especially his misshapen head.
Waiting for the surgery
Our family felt powerless in the few weeks that we waited for Maximilian’s surgery. Our hearts ached with the worry that there might be a fatal complication with his surgery. I couldn’t bear to think about the scalpel that would slice through the entire back of his head or that our innocent baby would feel pain and confusion after the operation.
We hoped and prayed all the while wondering if this could be our last days with him. It was during this time that I searched for and found a consecration prayer to Our Lady. I felt helpless, but I had faith that Jesus’ Mother would take care of my little man. I was prepared to let Mary have him in heaven with her if that was what God the Father wanted for Maximilian. If our baby died, I prayed that God would give us the strength to live without him.
Maxi’s MRI revealed something unusual and fortuitous. Most people have two external carotid arteries on both sides of their skull. Maxi’s arteries had good blood flow, but he only had one artery on the right side of his head. This anomaly would make the surgery much safer for Max because the most dangerous cutting would take place on the side of his head without a carotid artery.
Laying worries in the Lord’s hands
On the day of the surgery in May 2011, I handed a sleeping, chubby baby to the anesthesiologist with fear in my heart, but also with a sense of peace. I trusted that God had a plan for our son. I said a rosary for him and waited five long hours with my husband, David. We were at peace, and we spent the time enjoying each other’s company without interruption from our other three children. Thanks to God and the many people praying fervently for Maximilian, his surgery went smoothly, and we were asked to join him in the recovery room.
The surgeons prepared me for the swelling, but no one told me that there would be a tube inserted in Maximilian’s head to drain the blood. Seems logical, but the sight of it disturbed me. I ached to hold his little body and to quell his whimpers and moans — provoked by the sound of his daddy’s voice — muffled by his oxygen mask. It pulled at our hearts to see that Maximilian needed to be held and comforted, but we were unable to pick him up because of the numerous wires and IVs radiating out of his tiny form like tentacles.
I spent the next two days by his side in the hospital holding his hand and murmuring prayers over him. Whenever he showed signs of distress, I would whisper, “Jesus, Mary, and Joseph have mercy,” and he would visibly calm and fall back to sleep. By the third day, he was doing remarkably well and no longer need intravenous pain medication. By that afternoon, I was getting our cheery boy ready to go home. That evening was the last time I gave him pain medication. Major surgery 72 hours ago, and Maximilian acted like nothing had happened to him.
Our baby wore a helmet 23 hours a day for about seven months. Initially, the helmet was a difficult adjustment, particularly for me. I missed the feel of his fuzzy head against my lips terribly. Instead, when I kissed his head, my lips would brush against the cold plastic of his helmet. It was like kissing a bowling ball.
Even though his helmet was a source of penance for me, Maximilian seemed to like it. It protected his head the numerous times he bumped it while crawling or trying to stand. I remember once seeing him pull a weighty landline phone off our desk onto his noggin. He looked surprised, but there were no tears.
Because he looked like a cute little football player, people would do a double take and stop to stare at him. Neither of us minded, and I always relished the opportunity to tell people why he was wearing a helmet, so I could share how brave and exceptional our boy was — and still is.
Healthy and bright
Maximilian is approaching his seventh birthday. He’s a bright, mischievous boy with a head that looks pretty average. Almost no one except the person who cuts his hair realizes that he has a scar — not a zigzag one — but one that travels from the back of one ear to the other. Every once in a while, my husband, David, and I will marvel together about how our little boy has been through so much and how everything turned out OK, and we thank God. All of the pain was worth it because we have Maximilian — our miracle.