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.