Belief. It has to be one of our most overlooked superpowers in life…the power of our beliefs. A belief is something that we personally choose to form in our own minds- it’s the way we choose to see the world around us. We can decide how we want to think and what we want to focus on. It’s also important to know that what we focus on, we get more of, so pay attention to that. Most of the time, we aren’t even aware of our thoughts or beliefs because we simply go through the motions in life. Perspective is a GIFT. The greatest gift Gabriella has given to me. She has opened my eyes and made me SLOW down and realize that everything in life is a choice. That I know for sure. However, I also know that a lot of things in life that we can’t control, but we CAN chose how we respond to those situations.
This is one of them. There is nothing I did or could have done differently to prevent Gabriella from having craniosynostosis. It’s simply part of her. She was born like this, she’s one of the rare babies who start their life this way.
SO what does this fancy, scary word even mean?
“Craniosynostosis (kray-nee-o-sin-os-TOE-sis)- say that 5 times fast… is a birth defect in which one or more of the fibrous joints between the bones of your baby’s skull (cranial sutures) close prematurely (fuse), before your baby’s brain is fully formed. Brain growth continues, giving the head a misshapen appearance. Treating craniosynostosis involves surgery to correct the shape of the head and allow for normal brain growth.” If she doesn’t undergo complete craniofacial reconstruction, she could face severe complications, vision impairment, learning disabilities, developmental delays and can limit the growth of her brain.
On December 27th, Gabriella will go to Boston Children’s for a 5 hour surgery from ear to ear. This will hands down be the hardest and eventually best day of my life. They will remove the fused bones, break it and use resorbable plates and screws to reshape her head. That is a damn, scary sentence to type. Terrifying actually. It’s easy to see why it’ll be the hardest and longest day of my life, but when it’s done and this weight is lifted off my back, chest, stomach, elbows, toes, every inch of my body, then she can start the healing process and it will turn into the best day possible cause the surgery is behind us.
I think sometimes the hardest part is the never ending waiting game. I just want the day to get here so we can move on, but at the same time, I’m dreading it. My husband and I try our best to focus on all the good things…this is our BELIEF:
1. We have the worlds BEST hospital in our backyard.
2. She will be in the best hands possible, both the neurosurgeon and plastic surgeon have several years of experience and are professors at Harvard Medical School. They do this day in and day out.
3. We are blessed to have our own business in which we work from home, so we are at every appointment together, in control of our schedule and both home to co-parent. No one watches our little girl, but us. WHAT a gift that is. A gift I will forever be grateful for.
4. Faith. Worries tend to end when faith begins. We have the upmost faith that God has a perfect plan for her and this is a bump in the road that we can and need to get past. She will be earning a serious dose of GRIT, something we’ve always wanted our girls to have, but can’t be taught.
5. This surgery is to HELP her and at the end of the day, it’s a fixable ‘problem’. If you spend 5 minutes in Boston Children’s, you will learn that your “problems” 9 out of 10 times aren’t really problems.
So yes, it’s a wonderful time of year, but I’d be lying if I said this December doesn’t feel as magical as it usually does. Usually the anticipation is the best part, but not this time. The countdown feels different as the day quickly approaches. However, there is also something beautiful about it. We have slowed down. We have been reminded of the REAL reason for Christmas. We will spend Christmas with just the 5 of us to eliminate any chances of Gabriella possible getting sick. Instead of trying to fill this month with visiting every Santa imaginable, we simply watch Christmas movies and drive around town to see the lights. We have volunteered more than usual because when you feel in need, the best cure is to help others who are more needy. We are closer than ever.
So yes, it is the a month full of anxiousness, anticipation and wonder.
But also faith, hope and true meaning…and that itself is wonderful.