Be Prepared

I want my blog to serve as a source of both information and encouragement to parents who find out their children have clefts.  Looking back, I remember the relief I felt when I stumbled across websites or bumped into people who had gone through what I was experiencing.  As cliché as it may sound, the very knowledge that I was not alone provided me with comfort and strength.  With this in mind, I record some of the things I wish I had been prepared for.

 

I wish I had been prepared for the NICU.  I went into my labor never imagining that Ella would have to stay in the NICU.  We knew every other part of her body was healthy -- heart, lungs, brain -- and she was full-term so it didn't occur to me that she would have to stay there.  I wish I had known this was a possibility beforehand; wish I didn't have to find out she'd be there from a random pediatrician I had never met before and never saw again.  "Your daughter will be staying in the NICU until we can make sure she doesn't have any problems feeding."  This news devastated me.  I had mentally prepared for my daughter to be in a little bassinet feet from me, not an entire floor above me (trust me, it seems like farther away than it sounds.)  Ella stayed there from Friday to Monday and it was rough, very rough.  Every second that the NICU was open to visitors, I limped upstairs to be by her side.  But still, I wasn't able to feel like she was truly "mine" until I carried her through our apartment doors.  I don't know if the NICU is a requirement for every baby with a cleft, since clefts do vary in severity, however I wish I had at least known it was a possibility. 

I wish I was prepared for peoples' lack of knowledge.  Even though clefts occur in about one in every eight-hundred births (very common, if you think about how many babies are born every day!), not that many people know about them.  Be ready for people to ask you about the cause.  I even had people insinuate that Ella's cleft was my fault or that it was somehow a result of my environment.  More often than not, those who make such statements don't mean anything bad, they simply say so out of ignorance.  As parents of babies with clefts, it's our job to educate others (calmly and gently), so that our children have a better future.  Also be prepared for people to think that your child's cleft is more debilitating than it truly is -- some aren't aware of the advances in surgical practices, therapies, feeding, etc. 

While you are pregnant, you need to know that you can tell people about the cleft in your own time.  If you want to spread the news as soon as you find out, that's fine.  If you want to wait until the delivery, that's perfectly fine too.  It is your news to share, whether sooner or later.  It took me a long time to cope with the news, so I waited longer to share.  I don't view this as "hiding" anything, nor was it because I was ashamed of my daughter.  You also have the right to pick and choose who you want to tell.  I promise you this though, you will be happily surprised by your loved ones' reactions.  I received infinite support from my family and friends.

A lot goes into repairing a cleft.  I'm all for downplaying it to extended family and acquaintances by saying stuff like "They'll just stich it right up" because, on the one hand, having a cleft is by no means the end of the world and everyone should know this.  On the other hand, the cleft can affect many parts of a child's life beyond their outer appearance -- speech, eating, their teeth, their hearing, the list goes on and on.  I don't say this to scare anyone (trust me, your doctors have the situation under control and they've prepared for the effects long before they've even crossed your mind), but you do need to be ready for these things.  Just the other day, it hit me that Ella will start teething soon and we need to start thinking about how her teeth will be affected by the gap in her gum line.  A cleft requires strength from parents and children alike.  That's why I love the Instagram hashtag #cleftstrong.   

I'll end with this: Be prepared for joy.  Be prepared to completely forget about the cleft.  When I look at Ella, I swear that I don't even see it.  It's hard to explain and maybe it doesn't make sense, but I just see my baby and she is perfect to me.  Be prepared for the most special child, whose wide smile will light up every second of your every day.  Be prepared to find a hero in the eyes of an infant, so strong, so brave.  Be prepared to look at everyone else through a different lens forevermore.  Be prepared for love.

Friday Favorites

I would like to start off by saying the following: You know you're a mom when you're happy to have someone spit up on you.  After feeding about thirty minutes ago, Ella had a pretty big spitup all over me.  I was thrilled simply because I was swimming in it, yet none got on her outfit.  It's the little things....  Anyway, here are my favorite pictures from the week. 



That outfit, though!  I can't get over it.  Granted, it came off after about an hour when I realized that the tutu style, although utterly adorable, was not conducive to changing poopy diapers.  This dress will be reserved for church, doctor's appointments, trips to see family, etc.  Trust me, I learned this lesson the hard way.  RIP, cute and ruffly chevron romper. 

Yes, this is how my child sleeps.  She is not the cuddly, hold-me-close type of sleeper.  She is the I-must-not-have-my-arms-or-legs-covered-by-even-a-centimeter-of-fabric type of sleeper.

I was getting ready to change her diaper and she brook out into the hugest stretch.  This is a habit with Ella; she's done it since day one.  Which I guess partially accounts for all the movement I felt while pregnant. 

This is I guess what you could call a non-favorite.  I think she's getting too big for the infant insert in her bouncer.  *tear*  The first step is admitting it.... at least I'm out of the denial stage.  





Ella's Smile

My baby was born with a cleft lip and cleft palate.  The ultrasound tech saw them when I was eighteen weeks pregnant.  Another tech was called into the room and then a doctor and then a genetics specialist, all trying to answer with certainty the question suspended in the air.  Poking and prodding my stomach, they all squinted at the black and white screen above us.

"We're almost positive," the doctor finally proclaimed.  Then they warned me.  Apologized to me.  Warned me some more. 

I was cautioned that along with these birth defects my baby could have a genetic disorder, autism, Downs Syndrome... could not even live long enough to see this world. I smiled, asked all the right questions, agreed to blood tests and follow-ups, and made all the properly-optimistic statements, nodding and smiling.  Nodding and smiling.  Nodding and smiling.   

All the while, heart breaking and burning with sadness, pent-up tears, and the fear that they had instilled in me.   

Since that point of despair, I have learned many lessons; lessons I wish I could communicate to every expectant parent upon receiving such news.  The doctors, techs, and experts meant well, but they did not know what wonderful news they gave me that day.  God knit my beautiful baby together in my womb, perfectly and skillfully, just as He creates every other baby.  He gave her the gap in her lip so that her smile would be wider and happier.  And it is.  She is the most beautiful, most radiantly-smiling baby you'll ever meet, always grinning from ear to ear.  Her smile is my daily joy and my daily reminder to lift my head toward Heaven in gratitude.  

After Edwin got off work that evening months ago, we opened the envelope containing our baby's ultrasound pictures and gender result.  I had requested that the tech not tell me the gender during the appointment, but rather seal the results in an envelope so I could share the moment with Edwin.  When we read "It's a girl!", we both burst into tears of happiness.  Regardless of all the other news we had receieved that day, our thankfulness blotted it all out.  We named her then -- Ella, which means "whole, complete."