Confessions of a Cleft Palate Mama


As an active blogger and Social Media participant, I choose to live my life out loud. In choosing to live my life in this manner, I open myself and my life up for comments and questions. Sometimes, these comments and questions hurt. Sometimes they are meant to cut. Other times, they are not meant to hurt but are instead posed with the best of intentions. The latter often catch me off guard. Such a situation occurred this past week. Instead of dashing off a quick and angry response, I called a friend and nearly ended up in tears as I described the situation to him. I let it sit over night as I thought about the best way to respond. Then I took to Twitter to vent about the situation. Once I took to Twitter, I realized I was not alone in my very justified reaction to the inquiry. Instead of a private response, I choose to handle this in a public manner. There are many other mothers of children with birth defects in this world and all of us battle the same thing deep down inside. All of us are consumed by guilt.

The birth of my second daughter at 35 weeks and 5 days occurred 42 hours after my first contraction. I pushed twice and her screams filled the air of the delivery room instantly as she emerged into my nurse’s waiting arms. Placed on my chest, she continued to scream and writhe about as most newborns do. At first glance, she appeared healthy. All fingers, all toes, you know, the important stuff. When she screamed however, her mouth gaped at the top where her palate should have been. I blinked and tried to check but blamed it on exhaustion. I tried to latch her onto my breast to nurse but it didn’t work. After several tries, on and off, her screaming, me almost in tears, we requested the Lactation Consultant.

The Lactation consultant came in, slipped on gloves, and swiped our 30 minute old daughter’s mouth. “She’s got a cleft.” A swarm of activity buzzed about our room and suddenly there I was, alone, in bed, freshly delivered and still numb from the epidural. No one to talk to, no one to explain to me what was going on. The thoughts started. I knew of a cleft. I knew it meant something was missing. But I didn’t know the cause. I didn’t know why. Then I thought. I thought some more. What had I done wrong?

Early in my pregnancy, I was unable to take prenatal vitamins because they induced severe nausea. Forced to choose between taking the vitamins or not eating, I chose to not take the vitamins. I even tried taking them at night but it was a no go. My depression from the birth of our first daughter also played into the decision to not discuss this nausea at length with my OB. Nausea continued well into the 6th month of my pregnancies. By the 6th month, though, I still was not taking my prenatals. In my depression delusional mind, I even wondered if it would truly affect my growing child’s well-being.

At six months pregnant, however, even if I HAD taken my prenatals, it wouldn’t have mattered. Most clefts form between 4-6 weeks, well before a woman is even aware of her pregnancy. Many clefts are even impossible to link to a specific cause. Our daughter’s specific cleft, a bilateral complete cleft of both hard and soft palate (meaning essentially, she had NO PALATE whatsover), was associated with a condition called Pierre Robin Sequence (pronounced Pea-air Roh-ban). Her jaw was also recessed, her tiny tongue was floppy, and her airway was narrow. In the 1920’s, PRS babies had a slim chance of survival. Today, however, the rate of survival is very high and surgery is available to correct these issues.

I was asked, several times, by several doctors, if I had taken my prenatal vitamins. I lied. Yes, I know I shouldn’t have lied. I should have been honest. But between depression, PTSD, and the guilt now whirring around in my head, rational behaviour escaped me. My partner didn’t even know I hadn’t taken my prenatals until I confessed while in labor with our son. (Hell of a time to confess, huh?)

Bottom line: I BLAMED MYSELF FOR MY DAUGHTER’S CLEFT.

Yes, rationally I know now I am not to blame. There is no family history of cleft. No associated genetic syndrome along with her PRS. It formed well before I could have done anything about it and even Mothers who take folic acid religiously still have a risk of giving birth to a child with a cleft. I know clefts are nearly impossible to see on a standard u/s unless you are looking for them specifically. Intellectually, rationally, I know all of this. and yet, the guilt consumes me. She grew inside me. She grew imperfectly. Logically I am to blame. If she is imperfect, there is something wrong with me. I failed my daughter before she was even born. I failed at motherhood a second time before I even held her. I FAILED.

Mothers of children with birth defects, with special needs know what I am talking about. We feel this every day. We fight like hell to not let this guilt eat at us. We fight against stigma, misinformation, judgment, and ignorance. We live with the stares, with the internal guilt which threatens to rip us apart every second of the day. We ferociously fight for our children so they may have a chance to live a normal life. A life of which they are completely worthy.

My daughter is nearly 6 years old now. She is beautiful. She is intelligent. She is determined, obstinate, and full of perseverance. She is happy. She is thriving. She is PERFECT. She is LOVED.

It doesn’t matter what I did or didn’t do all those years ago. I cannot go back in time to change anything which happened. Even if I could, I would not want to go back in time to do so. Because if I did, I wouldn’t have a daughter who has taught me more than anyone else in my life about the importance of hanging in there, fighting for even the simplest things (like speech, breathing, and eating), or that the most important thing in life is to be happy and keep others laughing right along with you.

Whatever Wednesday: Finding your sunbeam


"DJ on a cold morning" by marymactavish @flickr.com

That dog looks mighty happy, doesn’t he?

Up on the table, warming himself in a sunbeam, not caring what anyone thinks of him.

Have you ever found a sunbeam and stood in it?

The warmth floods your body, brings light to your heart and your soul, and sends a smile to your face.

We don’t do that enough.

Sure we’re supposed to take time to smell the roses and all that, but when was the last time you intentionally found and stood in a sunbeam?

I’ll wait while you mull that over.

I sit in a sunbeam every day the sun is available.

Do you?

You should.

Find your sunbeam.

(the original photo was sourced here)

Whatever Wednesday: Finding Happy


When I was 5, my Aunt died. Then several other relatives passed away at an alarming rate. Much of my childhood filled to the brim with memorial services or talk of how yet another relative succumbed to the ravages of cancer. Some relatives I was very close to yet other relatives, like a distant cousin named Keith, I barely knew. But still. Death. Always peering over my shoulder. Always there.

School wasn’t any easier. I grew up in a small mostly white town at the Jersey Shore. On the walk home, it wasn’t unusual to see a Lotus, Ferrari, Porsche, Maserati, Benz, or BMW. And yes, I mean on the same day, not throughout the week. We had a Dodge Ramcharger and a Datsun. The Ramcharger was rusted out. It’s special feature was that we could watch the pavement slide by as our parents sped up and down the Turnpike and other badly paved roads. This was awesome unless.. roadkill. Then EWWW. The other kids weren’t nice to me. They teased me. Called me “Corroded” whatever the hell that was supposed to mean. Yeah, I was even bullied with intellectualism. Awesome, right?

In the 6th grade, we moved to VA. Given the opportunity to reinvent myself, you better believe I did. I had friends the first day. Things were awesome until High School when I bloomed. Yes, I mean BLOOMED. The ensuing sexual harassment sucked. I endured it until I graduated because, well, I was a kid, and my memories of bullying as an elementary kid came flooding back.

Then? College.

Wow, college. No more sexual harassment but there was that time in my dorm room when an acquaintance tried to force something on me. Thankful for strong legs and a good aim, I survived. He did too, but believe me, he never spoke to me again.

During college, I drove a lot. I sat at a local state park and made friends with ducks. I stood in the middle of a lake during a thunderstorm and let the rain beat down on me, praying for a lightning strike just a month or so after my grandfathers died within 19 days of each other. Clearly I survived.

I found myself then, deep under all my pain, all the crap which had been buried on top of me. Strong. Beautiful. Amazing. I promised never to lose myself again.

Only I did.

I fell back into a hole, dug by myself. I sacrificed myself for what I though I wanted. For the life society trained me to believe was mine. Only it wasn’t and I was drowning just like I wanted to do that day when I waded into the lake.

I needed to breathe.

I’m breathing now. It’s taken me 9 years and a few months to get here, but I’m breathing. I’m smiling. At the beginning of the summer, I couldn’t smile. Once I started smiling, my face hurt. For two weeks. Yes, my FACE hurt from smiling. That pain, though, the pain in my cheeks, my jaw, my head, was a pleasant and welcome pain. Yeah, this summer has hurt. It’s hurt like hell. But I’m welcoming the pain. Because the pain means I’m feeling again. It means I’m no longer numb. It means I’m living. Loving. Embracing.

If living my life requires that I go through periods when walking on shredded glass would be preferable, I’ll take it… and I’ll smile despite the blood and tears. I’ll take the pain. I’ll take the happy. I’ll take the joy of finally exhaling surrounding it all.

In this moment, no matter what, my life is beautiful.

It’s beautiful because I am living it.
No more apologies. Just me. Living. Outloud.

Whatever Wednesday: Embracing Life


Life is capable of handing you some extremely sour lemons. They crop up when we least expect them to and carry the ability to completely ruin our day.

But life is also capable of throwing some really sweet fruit your way too. Like ripe juicy strawberries on a summer day. You know the kind… the ones that make you sigh and sink down into your chair when you take that first bite. You don’t even realize there’s juice rolling down your chin because you’re hopelessly lost in Strawberry Blissville.

I know it can seem like all life is tossing you is sour lemons. I’ve been there more than once. But I’ve also had those super sweet strawberries. Learn to enjoy them while they’re around regardless of the stains they may leave on your heart. There is no larger sour lemon than missing out on a handful of joy simply because you were too worried about the what if’s and the consequences.

Live life. Don’t judge it. Don’t wait for it. Don’t miss it, regret it, shun it, or critique it. Live. Embrace your joy. Embrace the pain. But live no matter what. We deserve nothing less.

Respite


Today, for the first time in years, my toes and the Atlantic Ocean made contact.

I grew up on the Jersey Shore (NO, not THAT Jersey Shore – mention it again and I’m a send someone with a whole lotta vowels in their last name your way) just mere seconds away from the ocean. I suffered from perma-tan as a result of spending almost every waking minute on the sands of the beach during summers at my grandmother’s house.

We had a routine – we’d hang out, then eat cream cheese and jelly sandwiches on toast while watching The Price is Right (with Bob, not this new guy, Drew). We’d pack up the station wagon after the show was over to glide the 5 measly blocks to the ocean. Hot metal car seatbelts do NOT feel good against young skin, lemme tell you what. Then, we’d slather on sunscreen and go running smack dab into the ocean.

The afternoon always passed too quickly in squeals of delight, screams of fear after stings of jellyfish, and whoops of joy as huge waves carried our brave bodies toward shore, hurling us unfailingly into the hard sand underneath the soft water. We’d laugh, get up, and run smack dab back into the ocean all over again.

The grandmother with whom I spent all that time with at the beach, at the Atlantic Ocean, is now a part of the ocean. She passed away well over 10 years ago and her ashes were spread in the Atlantic.

Today?

Today I said hello.

Tomorrow?

Tomorrow I will run with glee smack dab into the ocean to give her the biggest damned hug of my life.

I am home.