1 Year Cranioversary

One Year Ago Today.

craniosynostosis

One year ago today was the hardest day I have ever experienced. It feels as close as yesterday and like it never happened at the same time. They are memories our entire family will think about almost daily. It was something I wouldn’t wish on my worst enemy, yet I think it was a blessing in disguise 

craniosynostosis

Yes you read that right. I think Sawyer’s craniosynostosis was a blessing. Each day we had to deal with the process I became stronger. For my son, for myself. Each time I entered a Doctor’s office thinking I was having a bad day, I was reminded of how truly wonderful my life is. And even in the PICU, I was humbled by children suffering from terminal illness’s with the brightest outlook on life. These are things you cannot experience without going through the exact same thing. Knowing that, I consider our diagnosis as a whole a blessing. I am a better person by going through it. Sawyer is a healthier child for having caught it. And we are a stronger family for enduring a crisis together.

cranio goodbye

Having said that, they are not happy memories I bring back from this day in time. {except for Happy Birthday to my best friend, sorry this date will always be the best and worst of celebrations!} Last year I was handing my 8 month old baby to a stranger. Hoping it wouldn’t be the last time I saw his ever lasting smile. He was so trusting, he never even looked back. To interested in the pretty nurse showing him all the new things down the hallway. And then he was gone and a cold door was slamming in my face. Brandon and I stood in that spot for what seemed like eternity. Just crying and holding each other. The only ones who could be whole heartedly there for each other. Not to discredit my Mom who flew across 2 countries to be there for us. Her’s was a different kind of pain. Not only was she watching her first grandchild go through an unbelievably intense surgery. But also watching her daughter experience it from a parent’s side. I’m so lucky to be loved in such a caring way.

craniosynostosis

It was a long morning. It was a long week. I can’t describe how emotional and emotionless I was at the same time. I shed those tears when he left my arms, and never again. I always thought when I became a mother I would be an emotional wreck if something like this happened to my child. Instead I found I was a rock. I allowed others to cry for me, while I remained strong for Sawyer. Each day for 7 days we remained in a loop. Rounds at 5am, swelling, tests, morphine, visitors, crying out in pain, more rounds, more swelling, more test’s, never enough morphine. 7 days. It’s longer than the normal “total cranial vault reconstruction” recovery. Sawyer needed 7 blood transfusions. They were expecting 2, so the added blood caused excess swelling. He was unrecognizable. Because of this I was only able to hold sawyer twice. The first time was only minutes while a nurse changed his sheets. The second time I actually got to sit with him for the afternoon in my lap. I had to move him back to the bed after a couple hours because he was so swollen, his body weighed what felt like triple his weight. And then without warning they were discharging us and sweeping us out the door.

craniosynostosis

The worst part was being home. I was no in charge of my baby who loved me, but was guarded with his trust. I struggled with his drastic change in appearance. I broke my streak of not crying on the first night. I had a full on crying, screaming on the floor breakdown. After all, there was a lot built up. But then I picked myself back up and remembered we had already come this far and we could do this. And we did. Life went on. Each day we crossed another milestone and soon we no longer got horrified looks of other customers in Target. No one asked about his ear to ear zig zag scar. Days turned into weeks, turned into months, and here we are, a year later. You can no longer see his scar. A stranger would never know. Even I find it all hard to believe.

craniosynostosis scar

So if your reading this, don’t think of it in sadness. Remember it as a mean’s to live your life in a more humble giving way. Treat everyone you meet with kindness, you never know what they are going through. {That’s getting a bit cliche sounding, I’m aware.} But it’s still true. We often get caught up on little things. Don’t. You may have thought you were just writing me a little note that day. It wasn’t. The immense volume of love and support we received that day and all the days leading up to and following, are more than I could ever have imagined. They meant the world to me. Don’t be afraid to do that for other’s. If you want to honor this day in anyways, reach out to someone else today. And just love and support them in whatever way you think they need. Buy your nephew some ice cream. Play house with your cousin. Drop a random card in the mail for a friend, just because. Phone your grandma and catch up. Do something nice and let someone you love know them. Just because. Don’t take things for granted. Enjoy each moment. Because even painful experiences are blessing’s in disguise.

craniosynostosis

Happy One Year Cranioversary Sawyer.

6 thoughts on “1 Year Cranioversary”

  1. Alissa,
    I am so impressed by you. You and your family have been through so much and I think you are right in calling this a blessing in disguise. We haven’t seen each other very much in the last few years but I wanted to tell you that I am so proud of you!

    Love,
    Kristine

    1. Aw thank you Kristine. I know we stay caught up on each others lives through our Mom’s, which is awesome. It’s sweet you followed his little journey. Thanks for the sweet note.

      alissa

  2. what a journey this was, many times the emotions were to much, but we made it through and our beautiful little boy doesn’t remember a thing. The months dull my memory, and sawyer’s laughter makes me forget how long that week was. You were a rock then and your his rock now, i’m so proud of the beautiful Mom you have become!

  3. You did it for him, and you were awesome. I can’t believe it’s been a year for you, and a year since I found your blog! We are coming up on a year soon, and I have lots of the same feelings.

    1. Grace, your comments always make me light up. Like we share a little connection in the world that no one else can understand. I’m so glad your so close to celebrating your one year mark too!

  4. I know exactly what you went through.I feel like it was yesterday but its been 8 years since his first crainial reconstruction. We were in the waiting room for what was supposed to be 5 hours…turned into almost 19..,I think I stopped breathing and held my breath the last few hours as I was so afraid something was wrong..he too had to have a transfusion and actually had a small stroke.( we found that out later) his recovery was 13long days and when they sent me home with him he wasnt the alert little rambunctious 3 year old who went in to surgery.he was like a newborn and I was scared of what our future wou look like..months of daily therapy and working with him and he was back to his normal happy 3years old self,with a really cool battle scar we called his zipper.hes had 2 more reconstruction surgery that were minor compared to the first and that won’t be his last unfortunately..but today he is almost 11 and doesn’t remember anything except for looking at the pics I have of him! If you would like to message me I would love to chat with you.. I remember the feeling of looking at my swollen lil guy with all the tubes running everywhere and thinking I couldn’t do it..i couldn’t be strong for him..but I’m glad I was and couldn’t be more happy that god chose me to be his mommy.

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