A Jumble of Confessions

Tomorrow is the big day. Tomorrow, at last, Lawson will have his first operation. Tomorrow, all too early (and probably with a very fussy 4-month old in tow), we'll be headed to the hospital for a very long few days of recovery, rough stuff, and change.

Tomorrow, his bilateral cleft lip and gums will be patched up. Tomorrow will be the first of multiple surgeries he'll have to endure to correct this birth defect over the course of his life. Tomorrow took its time getting here, and yet, tomorrow seems too soon for my liking.

I'm ready. And, at the same time, I'm everything but ready.

Judging from that face, perhaps HE isn't ready, either.

Over the past few weeks, I've been compiling a confessional of sorts (so no, I haven't had time to sit down in one go and scrawl this out, promise). I've felt guilty, defensive, and afraid of so many things since becoming a parent. Ordinarily, I'd confine these sorts of thoughts to a physical journal (or, at the very least, an offline Word document), but I'm choosing to cast them out into the blogosphere in the hopes I can communicate how I've been feeling to all of you. That, and it serves as a fabulous way to be passive-aggressive about things that are troubling me.

1. I was originally in denial about his cleft.

This actually goes all the way back to when I was in first grade. We had a school-wide assembly in the cafeteria. As we filed in, I noticed a slide projector was set up in the center of the room. Yay, I thought, in traditional six-year old fashion. Pictures! This won't be so boring.

The presentation was from Operation Smile. The guest speakers began their runthrough of the slideshow: various before and after shots of Operation Smile patients. Every time a child's "before" picture was projected onto the big white screen, a chorus of "Ewwww!" from the kids filled the room. While I wasn't so mean to have joined in the jeering, I did the next worst thing: I looked away. I focused on my lap, my shoes, anything that wasn't the picture of the innocent child with a cleft lip. I kept looking away for the duration of the assembly. The pictures didn't scare me, necessarily, but they made me so uncomfortable that I didn't want to look at them, acknowledge them, understand that these kids were just like me but born a little differently.

Our school eventually began what I imagine was a pretty successful fundraiser for Operation Smile, but every year, when we filed into the auditorium for a presentation, I feared that I'd see the slide projector. I didn't mind helping kids, but I didn't want to look at them. I guess I understood why, but that doesn't erase the feeling of guilt deep in the pit of my stomach.

Twenty one years later, I sat in the ultrasound room of the Maternal Fetal Medicine office. We'd been informed at my 20-week pregnancy checkup that our newly-detected little boy was going to be born with a cleft lip and possible cleft palate, and so we had to go see a man whom I've since dubbed Dr. Worst Case Scenario. As he scanned the contents of my belly, he informed me that our little boy would have a bilateral cleft lip and palate. He used some 3-D imaging to scan Lawson's face.

And, just like in first grade, I didn't want to look.

In first grade, I didn't want to look because I didn't understand the whole idea behind facial defects. Last year, I didn't want to look because I didn't want to believe it was true. Some parents try to be proactive about what to expect with a cleft before their child arrives. I didn't want to. Perhaps if I looked away, it wouldn't really be there when he was born. But then, March 23rd came, and with it came Lawson, and so did his cleft.

And, once that little boy was in my arms, I couldn't look away. Not ever.

Before Lawson was born, I was scared of the future. I was scared of what his face would look like. Would I even love him? Would I truly feel a maternal instinct toward him? Part of me didn't want to look at the 3-D ultrasound because, if I saw that face, I would know that I couldn't properly comfort him, hold him, kiss him to make it better, for another 4 months.

Now, I know that I adore my son. What's more, I adore his face. Which brings me to my next (not as lengthy confession):

 

2. I've grown accustomed to his face.

(Here's where I'd put a .gif file of Rex Harrison storming down the street and muttering "Damn! Damn! Damn! Damn!" if one such file existed on the Internet.)

While we were waiting at the doctor's office for Lawson's pre-op, I met another family whose 6-month old daughter was also born with a bilateral cleft lip and palate. She's almost a month post-op, and she looks beautiful. Still, that knowledge was of minimal comfort to this little girl's mother a few weeks ago. Like so many parents of cleft-affected children, she mourned her daughter's natural smile. That might sound weird to someone whose child wasn't born with a cleft, but the mom I met put it this way: "Imagine your child was born with blue eyes and blond hair. You've gotten to know a blond-haired, blue-eyed baby for the first six months of her life. Then, one day, she has brown eyes and brown hair." I couldn't have said it better myself. You know it's your baby, but he doesn't look anything like what you've come to know and love.

I love Lawson's face. Some days, I still notice the cleft. Most days, I don't even think about it at all. It's just his face. And I love it, just like any mom would love her baby's face.

Much of that adoration is due to the freaking precious way he smiles. Just look:

Cheeeeeese.

I'm paid in those smiles. I love the way his little pinchers (an all-too-appropriate term coined by my dear sister) flare out on the sides of his lip when he grins. I love the hearty chuckle that often comes with those grins.

I might have been nervous to look at my son's face before he was born, but now that he's here, I can't get enough. I never want to lose it. Which brings me to my next confession:

3. I'm scared of his surgery. More than I should be.

I know it will help him. I know it will make things so much better for him, but it doesn't put my mind at ease. It doesn't make me worry any less.

I'm worried about the procedure. Will he be given too much pain medicine? Too little? Will his surgical team take extra care to put the pieces of his lip and gums together? Am I going to be strong enough to show him it's going to be okay?

I'm worried about the recovery. I've heard tales galore of swelling, of bleeding sutures, of inadequate pain meds dosage. I've heard horror stories about recovery: weeks upon weeks of inconsolable wailing, of sleep deprivation, of babies not really feeling like themselves for a long time.

Most of all, I'm worried about what his face will look like. I know I'll learn to love it even though it won't look like his old face; that doesn't worry me. What does worry me is the surgical team potentially taking every handsome thing about my boy and patching and pulling it until he doesn't look like himself at all. I want him to have more than just an acceptable appearance. I want him to look like himself.

4. I don't want his cleft to be his "thing."

When people get to know my son over the course of his life, I want them to see Lawson. I don't want them to see Lawson, That Kid With The Lip Thing.

There are so many things that can define him over the course of his life: His faith. His family. His interests. The things he likes to learn about. His sense of humor. His intelligence. Whether he likes dinosaurs. His favorite sport. Whether he even likes sports. He is already an amazing kid with so many facets to his personality, and that helps those that know him to stop seeing his cleft, and start seeing him.

Being born with this cleft was not Lawson's fault. I refuse to let it define him. (Some parents call their cleft-affected kids "clefties," and while I see the merit in being affectionate and unified over a common challenge, I refuse to use that word to describe my son.) We'll take the challenges together, and we'll conquer them. We'll encourage others that are going through similar trials. But I can't see myself centering his whole identity around the fact that he was born with a cleft lip.

5. Sometimes, I get sad when looking at other people's babies.

I have a hard time explaining this one. My sadness is rooted in a sort of mourning, because I know Lawson had every right to be born as "normal" as these picture-perfect babies I see my friends having. I get angry that he wasn't given that same opportunity.

This is probably a natural reaction on my part. I love my son; I want to protect him. He's going to have the rest of his life to have problems: potty training mishaps, scraped knees, flunked tests, voice cracking, getting dumped, flip-flopping between majors, living off of Ramen for a month because he blew all his money on a new computer. His cleft lip and palate was a problem that wasn't earned, provoked, or deserved. He didn't do anything except be born.

I guess it all boils down to a sad sort of envy. I wish he had a "normal" face like everyone else's kid. I'm not saying that it's okay for me to feel this way; in fact, that's why I'm confessing it.

If you happen to be a friend of mine that's recently become a parent, please let me be clear: I do not want anyone to feel any kind of guilt. Your baby is beautiful. All of our children will have some challenges along the way. Some of your children will have a harder time than Lawson. Some of them will have an easier time.

Don't walk on eggshells around my family. In fact...

6. I don't want anyone throwing us a pity party.

Since Lawson's birth (and perhaps even before then), folks have commented on how strong or courageous he is, or how strong and courageous David and I are for being his parents. While I can't answer for my husband, I can tell you right now that there's not some Supermommy suit hidden underneath my clothes. I don't have some saintly serenity about getting through what we have to get through.

When we're faced with a challenge, we have only a few options:

1. Ignore it
2. Wallow in self-pity about it
3. Suck it up and roll with it

When it comes to Lawson's cleft, Option 1 is a no-go. Ignorance in this case means that we wouldn't prep him for surgery with his NAM, we wouldn't care about whether he's eating well, and we wouldn't care about patching his lip together. While we could have gone for Option 2, it wouldn't have been very productive. That leaves Option 3. So, while I don't put on my Supermommy suit every day, I do begin every day with a quick prayer that God gives me the grace to get through the motions of the day, as well as any challenges that come with it.

David and I aren't martyrs or saints. Nor is Lawson. Things can be rough, but they're not always rough. Most of the time, Lawson is just a regular baby. He does regular baby things. Still...

7. I want people to understand that it's hard.

Kind of a turnaround from what I just said a moment before. Yeah, I know. "Don't pity us. Nah, you can pity us. Sometimes. Wait, no, that's not right. Can I start over?"

Listen, I understand how hard it can be to be in a situation and you just don't know what to say. I've been in that sort of situation, and I find myself often saying something lame. There are a lot of people that have never met a cleft-affected baby before.

A common response I've gotten from folks is the "Hey, at least it's fixable" comment. They're right. Many children are born with challenges that aren't treatable or correctable. Some of those children have life-threatening issues to face. Lawson's particular challenge is something that can be corrected with surgery.

But I think some people are under the impression that it's a quick fix. It's going to be multiple surgeries over the course of his childhood and adolescence. It's working with a feeding team to get him the nutrients that he needs. It's going to be a long road of speech therapy to ensure he can speak properly. It's going to be a guaranteed discussion of how to handle bullying and teasing just because he wasn't born exactly the same as "normal" kids. It's going to be a journey of being strong, capable parents no matter what.

No one has to know the magic words to say in this situation (heck, I sure don't). It just helps to know that people can acknowledge that, while my son's journey won't be as rough as others', it's still going to be rough.

8. I'm grateful.

This isn't so much a confession as it is a declaration, one that has helped me process everything leading up to tomorrow's surgery. The root of a positive outlook is gratitude. It's high time to be appreciative of the things I already have going for me.

I'm grateful for my son. I'm grateful that David and I were able to conceive a child. I'm grateful that my pregnancy and my delivery were relatively smooth and problem-free. I'm grateful for the things Lawson teaches me daily. I'm grateful for the way he's shown me how to love in a way I never knew I could. I'm grateful for his strength, for the ease with which he handles the curveballs so far. I'm grateful for the way his eyes light up when I greet him in the morning. I'm grateful that he's otherwise developmentally on target (perhaps a little ahead of schedule, but I'm certainly not biased). I'm grateful for every coo, every gapped grin, every hearty chuckle.

I'm grateful for my husband. I'm grateful that I'm married to David, my best friend. I'm grateful for the dates that we can still go on, even after becoming parents. I'm grateful that he has demonstrated time and again what it means for a husband to cherish his wife (including, but not limited to, the way he makes me go back into the car so he can get the door for me). I'm grateful for the example he's already set to head our family with integrity and love. I'm grateful that I've married a man who is such an amazing father already. I'm grateful for all of his support, his help, and the way we will always handle things as a team. I'm grateful for knowing such a wonderful, fulfilling love through being his wife.

I'm grateful for my family and friends. I'm grateful that I've been born into (and have married into) a family that has shown me the fierceness of love. I'm grateful for the countless hours, dollars, and energy sacrificed in that love for David, Lawson, and me. I'm grateful for the friends that have anchored me before I was even going to be a mommy. I'm grateful that those same friends have listened to me process things one day at a time. I'm grateful for the triple-digit "likes" on Facebook every time I post an update about Lawson. I'm grateful that my family, my friends, and the friends that are practically family have left my heart full every time I think of them.

I'm grateful for my faith. I'm grateful that I serve a God who knows better than to let me coast through life without any problems, for how else would I know what it means to have true joy? I'm grateful that, when I give Lawson over to the surgical team tomorrow, God won't be letting him go for a moment. I'm grateful to have our lives intersect with medical staff and families who we otherwise wouldn't have known, and I hope that we can shine Christ's love through our experience. I'm grateful that I can stake my hope in the eternal, not the temporal.



Tomorrow will be interesting. Tomorrow, Lawson will be strong; of that, I've no doubt. It still remains to be seen what I'm made of. We'll see if I will be a solid pillar of strength and toughness, or we'll see how many times I'll break down in the course of an hour (far more likely, methinks). No matter the outcome, God will give us all enough strength to get through it.

He's amazing that way.




But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

2 Corinthians 12:9 (NIV)


Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.

Joshua 1:9 (NIV)