Dad of the Year...

Please welcome guest blogger Kerry Lynch...

Hi, my name is Kerry Lynch, and my daughter, Mary Catherine was born on 12/08/2011 with Apert Syndrome.  We had no knowledge of this prior to her birth, so were shell shocked when she arrived.  We quickly adjusted to our new life as parents of a "special baby".  Research, doctors appointments, tests, travels, fears, anxiety, support, love, etc!  It sure has been a wild ride, and I'm sure it will continue to be. We are still newbies to the Apert world, but we are incredibly grateful for the support of the CCA family as well as the other families we have met through the CCA.  Mary Cate is scheduled to undergo her first finger/toe release in August, and we will see where the surgery schedule goes from there!  Please feel free to check out our website at www.mymarycate.org to learn more about our little lady.

With Fathers Day quickly approaching, I would like to give a shout out to the father's of our amazing CCA kiddos, and especially to my husband Chris!

I have to admit, I was a bit nervous that Chris was going to have a hard time "growing up" and being a father.  He has always loved adventures: rugby, wrestling, rock climbing, mountain climbing, Go Ruck challenge (if you are wondering what this is...you can google it), etc.  He is the definition of a "guy's guy".  During my pregnancy he spoke pretty openly about how terrified he was to have a daughter, and how he was already looking at youth rugby programs for when our little man arrived.  With the male dominance on the "Lynch" side, I kept telling him not to worry about it...this baby would definitely be a boy!  

Well.........our baby arrived and not only did we get the shock that she was a SHE, but we also got the shocking diagnosis of Apert Syndrome.  Chris was instantly thrown into, not only the role of father to a daughter, but a special daughter at that!

I remember seeing his tears and the fear in his eyes during those first hours and days after her birth, and I worried that my crazy, fun-loving, hilarious, adventurous husband was "gone".  Thankfully that lasted no more than 48 hours, and he was back to his old ways...times ten!  In our 12+ years together, I have never seen this guy smile and laugh as much as he does when he sees or speaks or even thinks of Mary Cate!

In the last six months Chris has blown me away with his amazing fathering skills, and Mary Cate absolutely adores him!  I am so grateful to have married such a fantastic man.  Mary Cate is the luckiest little girl to have him for a father.  (I promise Mary Cate, I will work hard to get my way and have you be an Irish Dancer, but I am pretty sure your dad already has you signed up for rugby in a couple of years!)

I recently got back from a weekend away with my girlfriends, and, not only did Chris do a fabulous job taking care of Mary Cate's every need, he never had to call to ask for help.  He also enjoyed every minute (OK, almost every minute-- maybe not the ones from 2-5 a.m. while she wanted to play).  I got to enjoy myself and not worry too much about how they were doing back home!

I even awoke Sunday morning to this great video!  You better believe that after watching this I couldn't have gotten home quicker to my loves, and, upon getting home, I found at least 5 more of these music videos on the laptop!

YouTube link to view video

Thanks Chris for all you do for your girls...We LOVE you so much, and hope this year is the BEST FATHER'S DAY ever!  xxox

 Please tell us about your awesome CCA Father! 

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.