Welcome to the Cleft Support blog. This blog was created as a resource and to provide support to parents with a child born with cleft lip and/or palate.

Sunday, October 14, 2012

Looking back and looking foward

Kaleb, my youngest son, is about 4 and 1/2 months old now.  Compared to when he was born, he seems so big.  Compared to Gavin, who is almost 4 and a 1/2 years old, he seems so small.  However, every time I look at Kaleb, I can't help but think that Gavin was his age when he had his very first surgery.  That's when Kaleb seems really small to me.  Looking back, I can't believe that Gavin was so, so small when his plastic surgeon first began repairing his bilateral cleft lip and palate.

I remember so many things about that first surgery; mostly being terrified.  Choosing a surgeon was a big deal.  It's an 18- to 20-year commitment.  It's a bigger commitment than buying a car, and it carries a lot more weight as this surgeon was going to be surgically repairing my child's face.  Not an appendix, or a broken bone, but his smile.  Rather than choosing certainty, we chose uncertainty.  Rather than choosing a surgeon who seemed to have a well-defined game plan, we chose the play-it-ear guy.  We went with our gut feeling, and looking at Gavin's beautiful face now, I know we instinctively made the right decision.

It doesn't mean that the play-it-by ear thing is easy.  In fact, it was, and still is, a challenge.  When the nurse took Gavin out of my arms and back to the operating room, I had no idea what exactly was going to happen, how long it was going to take, or what he was going to look like when he was done.  The surgeon had told us, "Well, I might do this.  But, if I get in there and I see this, I might do this instead."  Overwhelming uncertainty.  But, we trusted him, and I'm glad we did.

That trust came over time, though.  I remember thinking, after that very first surgery, which we knew was going to be one of four or five early surgeries, that we somehow messed up his face.  He somehow looked. . . worse.  But, we knew we had to be patient.  It all wasn't going to fixed at once.  It was going to be a long process, and we had to have faith in the process.

I remember crying as I sat down in the waiting room where we waited for over four hours.  The nurse called to update us once during that time.  The surgeon met with us and explained what he did as they were taking Gavin to recovery.  It was the longest 4 and 1/2 hours of my life.  What if he reacted poorly to anesthesia?  What if something went wrong?  When we were finally able to go back to recovery and see him, I wanted to sprint.

Through it all, Gavin was a trooper.  Sure he was a fussy and a little cranky, but mostly he was happy and resilient.  That's the thing about kids; they're resilient.

I look at Gavin now, and he's beautiful.  Of course, he's always been beautiful to me, but given where we started, I am in awe of how incredibly handsome he is.  I look at him now, how smart he is, how happy he is, how loving he is, and I am inspired by his strength, his resiliency, his courage, and most of all, his kind heart. 

Photo courtesy of Creative Elements Design Studio

And, every once in a while, just for a moment or two, my heart breaks a little to think that he will need to continue to be courageous and resilient and strong many, many times over the next 14 years. 

So much uncertainty lies ahead, but I have faith.  I have faith that we made the right choice when we chose our surgeon.  I have faith that my sweet little boy will be brave and tough.  I have faith that I can dig deep and put my fears and uncertainty and anxiety aside and support him when the surgeries start up again soon.  I have faith that it will all be ok.  More than ok.  It will be wonderful.