It's finally here!

I took that picture this morning. My little man fell asleep in his exersaucer for his morning nap. The cuteness of that moment couldn't be passed up, so the camera came out and I started snapping away.

I look at that picture and I see the preciousness of him sleeping in such a funny position and it melts my heart, but then I also look so closely at his head and I see that zig zag scar across his head and it shatters my heart.

Owen turned one year old on September 21st. A whole year old! Every first birthday is special and a momentous occasion but to me, it means so much more. Two years ago the world around me fell apart when our daughter was stillborn. I spent so much time grieving for her and hating the world, cursing the world and wondering what I did to deserve this pain. I remember so often thinking that we'd never celebrate a first birthday again.

Then came Owen.

The day I found out I was pregnant with him was a total shock. My cycle had been whacky for a few months and I had been to my Doctor the month before and told I wasn't pregnant and if my period didn't arrive in another month we'd look into other testing to see what was going on. The next month I went back and BAM - A positive pregnancy test. I saw the little bean on the monitor and the heart just beating away. I remember calling my Dad on the way home from the office and I was sobbing. Tears of joy, tears of overwhelming fear, you name it - I was crying for that reason and more.

I read on a baby name site that the meaning of the name Owen is "young warrior." I actually picked that name to be Audrey's name if she was a boy. I told myself if I ever got pregnant again and we had a son that was his name and I never changed my mind. I had no idea when I chose that name and finally had my son what that name would mean to us and most importantly, what it would mean to him.

He truly is a young warrior. He is strength personified and he's only 1 year old. I look at his scar every day and it is a daily reminder of everything he's had to endure in his short life so far. That scar breaks my heart every single time but it also makes me so proud to be a Cranio Mom. I remember so many times before his surgery holding him and rocking him to sleep and I would kiss his head and touch it. I looked at him and I just couldn't wrap my mind around the idea of there being something wrong. I knew in my heart something wasn't right but I kept telling myself this was all a dream. Craniosynostosis or not, he's my son and he's perfect. I would rub and touch his beautiful head and it broke my heart to know what he'd have to go through just to develop normally and live the life of a normal little boy.

We are celebrating his first birthday party at 2pm today. This isn't just the celebration of him turning 1 year old - this is a celebration of him surviving his surgery and finally reaching a milestone that I wasn't sure I'd ever see again.

Thank you to everyone who has been down this path with us and supported us and our young warrior. We couldn't have done it without you.

First of many....

My Dear Owen,

I don't think there will ever be any words to express to you how much I love you. The day you were born, it felt like my world made sense again. The moment our eyes met, I knew you were sent to heal my broken heart.  I remember holding you for the first time and studying your face, your eyes and your tiny little hands and I knew in that second that you and I would have a very special bond.

I cannot believe we are just days away from your very first birthday. This year has been so hard on our family but the bright spot in all of that was you. Everything you've endured in your first year of life is more than anyone should ever have to in their entire life. You are strength personified. I am so proud to be your Mother!
Some day I will sit down to tell you the story of your first year and everything you've been through.

Some day I will have to tell you about the tough road you had and the Doctor's we had to see, the tests you had to have and the worst moment of all of that - your surgery. Those were the hardest moments for Daddy and myself. We love you so much and we never wanted you to have to endure any pain but we also knew you deserved to live the life of any normal boy and the surgery was the only way to do that. We are so proud of you and everything you've overcome. You did it all with a smile.

So many people who have met you over this past year always say the same thing "He's so happy." That's the honest truth. You're always smiling and laughing. You absolutely love your big sister and I swear she is the only one who can get you to do those big belly laughs that we all love so much.

You are the piece that completed our family and we love you so much. This is just the first of many Happy Birthday letters I will write to you. There were some days when I felt like this day was so far away and now here we are. I am so proud of you baby boy and remember one thing, so many people love you but no one will ever love you quite like your Mama does.

xoxo,
Mommy

3 month check-up

Wow, has it already been 3 months (now almost 4) since my little man's surgery?!? I waited anxiously for that day to arrive and now it's just flown by since.

We made the trip to Akron Children's on Wednesday for his check-up with his neurosurgeon, Dr. Hudgins. I always get a little nervous before these appointments. I guess it's that fear that they'll say things aren't progressing like they hoped and he'll require another surgery.

I am very happy to say that was NOT the case and he got a great report from Dr. Hudgins. He is very happy with the progress Owen has made since surgery and said things should continue to smooth out over time. He blew me away when he said he is okay with moving to yearly appointments. I swear he saw the shocked look on my face when he said that. I fully expected we'd go every 3 months for the first year and then after that we'd switch to yearly appointments. I didn't know it would happen this fast!

But... I'm not complaining. Not at all. As much as I love Akron Children's and the amazing staff there, it's been a long and exhausting year. I am relieved and happy to stop making so many visits to the Doctor.

Owen has one more check-up next month with his plastic surgeon. I hope he'll give him another great report and switch him to yearly appointments as well. That would be amazing!

I probably sound like a broken record when I say this, but I'll say it again, I am so beyond proud of my little boy. This surgery hasn't changed him one bit and he hasn't let it slow him down at all. I am so thankful for every day I have with him. He's a very special gift to our family. <3

Craniosynostosis Awareness Month

Every 1 in 2,000 births a baby is born with Craniosynostosis. On September 21st, 2010 at 5:31 pm, my son became that one. In the moment he was born I couldn't have even imagined the road our lives would take over the next several months. 


It became pretty clear, within the first 2 months of this life, that something didn't look right. I kept looking at his forehead, examining his head shape, and wondering why things looked the way they did. I would google everything and when I typed in "slanted forehead shape" one of the first things that popped up was Craniosynostosis. I had never even heard the word the before and I assure you I couldn't even come close to pronouncing it. I clicked on the link and read the signs of it and my heart sank. I knew right there, in that moment, my son had that condition. We took him back and forth to the pediatrician all the time and he kept saying it was just positional flattening and he would be fine. If it wasn't "better" by 9 months, we'd consider helmet therapy. I tried to listen to him and I would tell myself "he's the professional... he knows what he's doing..." but that feeling continued to eat away at me and I knew I couldn't just sit back and wait.


The day the Neurosurgeon picked up Owen and immediately said "right coronal cranio" it was like the air was sucked out of my lungs. I had been bracing myself for months to hear those words and in my heart, I knew that's what it was, but actually hearing those words - there's only one other time I was ever left breathless like that - and that's a moment in my life I wouldn't wish upon anyone.


In the days and weeks leading up to Owen's surgery I constantly kissed his sweet head and I would cry. I cried all the time. He was perfect to me, Craniosynostosis or not, I loved him no matter what. I knew the surgery was critical to his well-being and it needed to be done to ensure he would grow normally and live the life he was supposed to. But every time I kissed his sweet head, I prayed to take this condition away from him. Give it to me. Make ME have the surgery. Not him. I would've done anything in the world to fix this for him without him having to endure one ounce of pain.

I love all of my kids the same but each of them also hold a very special place in my heart. There are no words to describe the love I have for my kids. Owen is my hero. What he has gone through in his short life, he has done with a smile. Everyone I encountered in the time before his surgery would tell me how resilient kids are and how fast he would bounce back. I thought they were just being polite, saying comforting things to a person who they could tell was clearly a wreck.


They weren't lying.

That little boy kicked some serious Craniosynostosis butt. 


I am not happy my son has this condition and I'll spend forever wondering "Why him?" Didn't God know I had already been through enough with the stillbirth of my daughter just two years ago? But one thing I will say is, while I am not happy, I am PROUD. 


I ask you, or anyone else who comes across this blog, to take the time this month to spread the word about Craniosynostosis and early detection. If undiagnosed - my son would have eventually lost his hearing, maybe his vision and he definitely would have had developmental delays due to pressure on his skull. 


My son is a warrior and he doesn't even know it yet. Some day I'll share his story with him and I will tell him how he showed more bravery and courage than anyone I've ever met.


He is my hero.

I am so thankful Craniosynostosis can never take away that precious smile.