Friday, January 27, 2012

What a Smile!

Peter’s only had braces for about six months, and I’m stunned at the change in his smile. The before and after pictures pretty much say it all… A-M-A-Z-I-N-G! Although he has complained plenty about having the braces put on, I know they’ve made a positive difference for his self-image.
Two years ago when I spoke to Peter’s class about facial differences, I opened the conversation by asking the students what they noticed about Peter. The first student did not mention his ear, trach stoma, or feeding tube as I was prepared to address. The first comment was about how Peter’s teeth looked different. This was third grade, which is getting past the point of cute gaping holes with missing front teeth. This is the age when permanent teeth come in and you really start to see how your child’s smile is going to look. At that time, Peter’s two front teeth were far apart, and he had a severe overbite (typical of Goldenhar kids). So, yes, his teeth were different.
My concern over the question was not that it had been asked but rather how Peter felt about his appearance. Fortunately, I was able to make a quick segue into how Peter had oral surgery just a few months earlier to extract several impacted teeth in preparation for getting braces. Little did I know it would be one more surgery, many consults, and two years later before he would finally get braces.
I admit I was overwhelmed with how to find the right orthodontist and how much cost and time would be involved. The thought of driving an hour for appointments at our Children’s Hospital was not at all appealing to me. I was also less than thrilled with the clinic environment. Still, I didn’t want to select an orthodontist just because the office was nice and closer to home. My main concern was finding a doctor with an experienced craniofacial background. After consults with three different orthodontists, I made the decision to go with the doctor who was less experienced with craniofacial kids. This was a risk I took only after having an open and honest conversation with her about my concerns. Only then did I feel comfortable enough to offer her a "Team Peter” membership.
Peter used to talk about his “Beaver Teeth”. He would make the remarks jokingly, but I know he was bothered by the way he looked. I’m so relieved this was a relatively easy and painless “fix” compared to most issues we have to address with his medical care. His smile clearly shows the difference straight teeth can make.

UPDATE to post...  Peter's braces were removed in February 2013.  Read our follow up post here Breaking Free of the Braces!

Sunday, January 22, 2012

On being pregnant again

If you haven't already read the news over on my other site, I am sharing it with you all now...I'm pregnant! It's been a long time coming - both to get my heart around the idea of having another, and to get my body to cooperate once my heart was ready. And now we couldn't be happier.

Okay, well, that isn't really the truth. Let me explain.

I'm extremely nervous this time around. Worried about the pregnancy remaining viable (thanks to previous miscarriages), worried about carrying to full-term (thanks to pre-term labor with both boys) and worried about the gazillion things that could potentially go wrong - birth defects, syndromes, health issues for both me and the baby. Obviously the last one is a result of having a child with Apert Syndrome and having been slapped in the face with that diagnosis at the minute we were supposed to be celebrating a perfectly healthy baby boy being brought into the world.

Not only did it rob us of the joyful experience and happy memories usually associated with a child's birth, it has also left behind shards of glass so deep in our heart that they will be felt in all aspects of our life for years to come. And it is now, during this pregnancy, that we carefully tiptoe through each day trying not to let the shards cut our hearts any deeper.

When I got pregnant with my first, Ethan (who turns 5 in March), it happened quickly, I enjoyed being pregnant and I was blissfully unaware just how much had to go right to have a perfectly healthy baby. I had the normal discomforts towards the end and did experience pre-term labor, but the end result was exactly what every new mom expects - a healthy, thriving child.

Ethan was 3 months old when I got pregnant with Aiden (who will turn 4 in February). I had a very similar pregnancy the second time around except that he came prematurely at 34.5 weeks. And then, of course, that is where the similarities abruptly halt and our lives were changed by Apert Syndrome.

We have spent almost 4 years removing the large chunks of glass that threatened to tear our hearts apart forever. But those shards, they are too small, too embedded to extract. I am trying not to let the past affect the future. It is just so hard.

My heart remains in tact despite the shards inside. Just having Aiden in my life - his smile, his strength, his full-of-life personality - has patched up the gaping holes and helped me to move on. My fears no longer reside in the challenges he will continue to face. They lie, however, in not knowing what other blows might come in the future that may damage my heart beyond repair.

To get through, I tell myself everyday that lightening very rarely strikes twice and that stress is not good for mom or baby. I am taking each day as it comes. I hope to enjoy this pregnancy as much as possible without letting the fear of what I can't control inhibit this experience.

Saturday, January 14, 2012

This exclusive club: proud member since 2008

[Note: I have been MIA here on the CCA Kids Blog for a bit and I'm trying to get my act together. In the meantime, I figured I'd transition back into my regular writing by adding relevant posts previously published on my personal blog. I promise to get in gear and add new material soon!]

Having a child with special needs is like being part of an exclusive club. A club where the membership perks are unlike those of the typical "clubs" you imagine in your head.

It is a club that you don't ever dream of joining. There is nothing appealing about it. You don't really think you deserve membership because you don't think you could handle it. So you pray every night that you will never feel what it feels like to be a part of this said club.

But then, at some point - when you learn of your unborn baby's condition, or you give birth to a child you expect to be healthy, and instead is not - you are given a membership card and signed up for the club as if someone has stolen your name and personal information to join a costly subscription without your consent.

It is the strangest form of identity theft.

All of a sudden, you are forced into a society that only an exclusive group will ever understand. You pinch yourself to make sure it is real - more out of shock and disappointment than out of joy and excitement. Your head tells you this is real. You are now a member whether you like it or not. But your heart obviously has a lot of catching up to do.

At first, it is normal to reject this newfound membership. It isn't what you asked for. Or what you expected.

Six and a half years ago Ricky and I got married with stars in our eyes. We come from good families, we have good morals and values, we love each other. As we came to find out, those things don't keep you from becoming members of this exclusive club.

It is hard to understand how we could be chosen for this path. Sometimes being a good person will make life easy for you. Other times, apparently, it does not work that way.

We have been members of this club for almost two years now. And although you could say that we were definitely disgruntled members at first, given this opportunity against our will, now we have found the bright side. The perks if you will. We wouldn't give up our membership for the world.

Shortly after Aiden was born, we were put in contact with a woman who was a few years ahead of me at the same high school who has lived her life with a craniofacial syndrome similar to Aiden's. We spoke briefly on the phone and she shared some of her life experiences related to her "membership" in this exclusive club. She dealt with her fair share of teasing. She felt like an outsider at times. But in the end, after she gave us a glimpse into how hard her life was at times, I will always remember that she said "I wouldn't change my life if given the chance". As bad as this sounds, I am going to admit that my first reaction was "That's a load of BS." I honestly didn't understand how she could say that. How could she say that if she had the chance to press the rewind button to be born without a craniofacial anomaly, she wouldn't. It did not make any sense to me.

Just 22 months later, I finally understand. It has got to feel something like the way I feel aboutAiden. For weeks, months, after he was born I would close my eyes and PRAY that this was all a bad dream. I hurt because I didn't want to be "that family". I hurt because my heart had been so broken - my dreams shattered. Or so I thought.

Becoming a mother has always been my biggest dream. I've always said it is something I was put on this earth to do. When you have a child with special needs, initially you grieve the loss of the "perfect" life you imagined in your head of being a mom. But somewhere along the line, it hit me that it is for that very reason that I was blessed with my Aiden. Nobody could do it better than me. This really is the life that I was meant to have. I just didn't know it at the time.

I can only pray that Aiden will grow up to feel the same way that the woman who shared her story with us felt. To have a child with special needs is a challenge. And the ultimate reward will be to have that child grow up to feel happy with the life they are leading despite the obvious challenges they will face. One with no regrets. Not wanting to change a thing. That will be the true measure of my time here on earth.

So although being a member of this exclusive club is something I would never wish upon anyone, it is, at the same time, ironically, something I am most proud of. We don't have logo emblazoned hats and t-shirts, but you can bet that our members know when we are around each other while out and about. It is an exchange of glances. A knowing smile. The "I know what you are going through" looks that show more empathy than pity when out with our children. It doesn't matter the severity of problems our kids face - you can always tell those that are also part of the club. And without having to say a word, our journeys seep out of our pores unashamedly. Silently, we give each other a mental high-five. Our secret little handshake that only the members of this exclusive club are privileged enough to know.

Saturday, January 7, 2012

The Power of Friendship

We recently had a fun New Year’s Eve party with family and friends. Just minutes before midnight, I snapped a picture of Peter with one of his long-time friends, Keegan. What impressed me about the photo was not so much how the two have grown and changed with each year’s passing but, instead, how many memories they have made together. Keegan was Peter’s first “buddy”. They met when they were each about a year old, and they’ve been friends ever since.

When the boys were toddlers, Keegan lived across the street from us. I remember how Peter would look out the window hoping to see Keegan across the street and then figure out a way they could “hook up” outside on the sidewalk. Because he had been isolated so much during his first year, Peter really treasured each and every social encounter he could have. He was overjoyed at any opportunity to play with friends.

Keegan and his family have seen the many ups and downs of Peter’s medical care. They have visited us in the hospital, helped turn pins during jaw distraction, watched us suction Peter’s trach and give him tube feedings, pretended that it was no big deal when a string popped out of Peter’s lower eyelid on a Friday night, and witnessed the joy of seeing Peter with his first prosthetic ear. We have done countless family outings together, including some fun vacations. The boys have very different interests and separate friends, but they also have over a decade of shared companionship, mischief, and stories.

Our closest family is over two hours away, so we feel blessed to be surrounded by good friends. Peter, especially, has an amazing network of friends at school. This is so comforting for me because my natural instinct after his birth was to be fiercely protective. I worried about people staring, about him getting teased at school, and I wondered if he would have trouble making friends. Thankfully, these worries aren’t as intense as they used to be. Peter has a unique sense of humor, an exceptionally compassionate personality, and many friends that enjoy his company. These are traits and resources that will help him be successful.

A new year is a time for reflection and new beginnings. Taking the picture of Peter and Keegan really captured that. For a brief moment, I was able to simultaneously appreciate the past for all its blessings and trials and look toward the future with a sense of peace and excitement. It was special to have such a moment surrounded by family and friends as we welcomed in the New Year.

I hope that 2012 is your happiest and healthiest yet!