Eric Luecking . a Riley parent, recently spoke at the “Cleft Care Across the Lifespan: Fundamentals for Parents” conference on March 6, 2014 at Riley Hospital for Children at IU Health. Below is the written text of Mr. Luecking’s remarks.
Humans can have an ugly way of undoing God's gifts. Maybe it's the media - or our interpretation of their reporting - that has us scrutinizing every little imperfect curve or asymmetry. One look at my son's beautiful smile, though, and I can't imagine anyone ever calling him imperfect based on his looks. They say a smile is the window to your soul, and with Miles' grin - well, let's just say that I've never seen a more perfect example of that.
Miles was born with a unilateral cleft lip and palate. The craniofacial team at Riley diagnosed him with a fairly significant cleft. After being fitted for an obturator, using some special tape, and enduring a successful lip repair, his facial transformation, at least externally, was complete. If there is one thing he loves to do, it is smile. Upon first waking up and shaking the initial grumpies, a smile is quick to surface. And he will smile at EVERYONE. The teachers at his daycare call him Mr. Smiles. How fitting. When my wife and I finally agreed upon a first name, a task that felt like it was still being debated upon in the delivery room, it was more because we liked the sound of the name. But it was fate that we decided upon "Miles." After all, slide the "s" from the back to the front, and his name is an anagram for "smile."
What should be his flaw, by misguided societal standards, becomes his greatest asset. Yes, the muscles and facial structure bend, strain, and contort into that gesture we call a smile, but it's far more than that. Couple those synapses with the sparkle in his eye, and he disarms you. Paired with his love of hugs and hugging, he's something really special - a lightning rod of love and affection.
A colleague of mine has friends who are parents of a baby born with cleft lip and palate. They were scared for themselves and for their son. My colleague asked me for some advice to pass along to them about surgery schedules, bottles, etc., and while I was happy to oblige with what few words I could say, my overriding feeling was that parenthood is scary, cleft or no cleft. Although my wife and I are quite fortunate in the sense of experience - her with the clinical background as a speech therapist on the craniofacial team and me with my personal experience with cleft lip and palate - we also know that our daughter, who doesn't have a cleft, will someday have some sort of adversity to face as well. Our job as parents is, first and foremost, to provide a loving environment and secondly to teach them to be good people. If you do those two things for any child, you are setting them up for success. In that regard, cleft lip and palate is inconsequential. You raise your children for the people they are, not the conditions that their DNA bestows upon them.
Long ago when I was a teenager, a letter came in the mail for my parents. In it, it asked if I'd want to be a part of a study relating to cleft lip and palate being hereditary. I remember my mom and I having a conversation then that someday I'd have to make a decision to have children and if it was a possibility that having a child with cleft lip and palate would deter me from it. I was resolute even then that I wanted kids someday regardless. Wasn't I, as a child with cleft lip and palate, as lovable a son as anyone else's? How prescient that conversation came to be.
During my wife's pregnancy with Miles, while trying to reconcile the things our son would have to go through in life, she asked me if I could have been born without cleft lip and palate if I would choose that life over the one with it. I answered her as directly as I could: it's not a choice that's ever going to come to fruition, so I prefer to not spend my time thinking about it. You focus on what you can control and deal with the rest of it as best you can. That goes with any challenge in life. While perhaps it wasn't the answer she was looking for as a concerned mother trying to process the situation at hand, I think eventually she came to understand what I was saying.
It's not all a high road, though, as you're traveling on this path. I remember the ultrasound with our daughter and when everything came back normal, anatomically speaking, feeling relief. A few years later, I remember the ultrasound with our son even more vividly. They looked at the tooth buds and saw the cleft. Immediately, I fell silent and my heart sunk a bit. I had to take a few private moments, all while trying to be composed in front of my wife who was living it, too. The latter part, I failed. She knew immediately that there were conflicted internal feelings. Yes, I was thrilled that cleft lip and palate was the only medical issue showing on the ultrasound. After all, there are far worse things that could have turned up. Yet, I know what it's like to live through everything to come.
We want keep our children away from heartache and pain of any kind; it's the natural parental mindset. We want to avoid adversity because of its immediate tribulations, yet it's our job as parents to provide that nurturing environment that builds confidence; that builds self esteem; that builds character; that builds inner strength. If we can succeed at doing those things, the long term gains are well worth it. With that in mind, we should embrace adversity.
Our children are going to need that confidence and self-esteem, now and later. There will be times on the playground, even in elementary school, when kids will push their noses down to mock your child's nose being slightly depressed and call him names like "flat face." There will be times when you're at an amusement park and a little girl doesn't want to sit next to your beautiful boy because he looks different. Trust me when I say even your young child will know why she vehemently demanded to her mom to wait until the next ride, and it crushes a little person's soul to not understand why they aren't accepted as good enough over something as irrelevant as looks. Tears and rage are the easiest emotions to access in those situations for a being still unequipped to deal with it in a mature way, and early on, those feelings win out over temperance. Even after having grown up and having the experience of life at hand, your bundle of joy will see others with cleft lip and palate and may become uncompromisingly self-aware. And there are times when that little child grows into an adult and still hates the sound of his own nasal, higher-pitched-than-desired voice... but because they were loved unconditionally, they give a speech on the topic in front of a strange crowd anyway.
It's tough, I'm not going to lie, watching your beautiful baby being wheeled away for the first time to surgery. And the second time, and the third time... They don't have a concept of what the next few days, weeks, and sometimes months are going to entail. Up until that point, to them it's just a normal day. A few hours later, they wake up groggy, in pain, and without the understanding of why Mommy and Daddy would let this happen to them. The best we can do is to offer smiles and cuddles, kisses and hugs, some tender caressing across their soft hair, and a reassuring voice. And you know what? That's enough.
You're actually surprised at how well they adapt to the aftermath of surgery. After a lip repair, they're sucking from a bottle again so quickly! After a bone graft, Miles was ready to play with his toys and sister within a couple of days, albeit with stiff arms due to the restraints. The roughest surgery we've been through thus far has definitely been the palate repair. Statistics vary from child to child, but Miles took several days before he was eating well enough to be released from the hospital. Before he was discharged, however, he was still eager to get to the hospital's playroom to find some new toys to dig through.
The challenges of caring for a child with cleft lip and palate range from the mental aspect of being strong for your child when they need it, of being financially fit enough to be able to pay the out-of-pocket expenses, and having an employer who can be flexible with your time off needs, as they can and do change with little notice.
One challenge that hasn't been an issue is how our daughter, who is 3 years older than Miles, has handled it. She's had far more difficulty splitting time with us than she has with his cleft lip and palate. In fact, I don't recall her asking many questions about why his lip looks like it does, and she's a rather astute individual. She just sees him as her younger brother she loves to play with. We prepared her early on that he was going to look a little different initially but that with a few trips to the doctor, he would be just fine.
The best advice I can offer to someone asking, "What's the best way to be a parent for a child with cleft lip and palate?" is to treat that child the same way you would treat any child: with the outpouring of love that the gift of their existence demands and to present them with the opportunities that will allow them personal growth. My parents were often afraid to let me try out for a sporting team for fear of getting knocked in the mouth. While I can appreciate what they were trying to do and understand now from a parental point of view why they would think that way, it's a state of mind I'm going to try my best to avoid should a similar time come with Miles. In fact, I've already had a conversation with my wife about future situations like this. Our goal is to make the best decisions we can as parents and prepare Miles with the ability to do the same. After all, it's his life.
Riley Hospital has been fantastic for our family. First, I'm a product of their work, having a majority of my surgeries performed by their team of doctors over the years. Secondly, their staff is friendly and knowledgeable, and I'm not just saying this because my wife is a part of the team! Dr. LaQuia Walker's dental team made an obturator for Miles in record time. Their work was an integral reason why Miles ended up being eligible for a primary bone graft, a scenario that didn't seem plausible early in Miles' appointments with the team. Trish Severns, the program coordinator, works tirelessly to coordinate opportunities for the families who come to Riley, including this conference and the wonderful Camp About Face at Bradford Woods that brings together kids with various craniofacial anomalies for a week. I've seen firsthand what a wonderful camp it is, one that leads to lifetime friendships. And of course the doctors, nurses, therapists, assistants, scheduling coordinators, and registration staff who make enhancing others' lives their lifeblood. If you see one of them around today or any other day, be sure to thank them. Their devotion to our kids knows no bounds.
So while perfect lips and perfect palates may seemingly lend themselves to a utopian childhood (here's a hint: I'm pretty confident it doesn't), childhood is only a few years of your life. Adulthood constitutes a far bigger piece, and what a child can learn from cleft lip and palate is an absolute character builder that makes us great husbands and wives, community leaders, and people. What we do as parents is to prepare them, our beautiful children, for their future. Our reward along the way is to see and feel the power of their beautiful smiles.