These past 11 months have been absolutely crazy. The joy of having a newborn turned into my baby has to have a major surgery in a couple weeks. That turned into meeting with various doctors and meeting multiple people that made sure he was going on the right track. Instead of just enjoying having our little boy we had to worry about him constantly. I had to worry if he was on track developmentally and then I had to worry about the complications that may come with surgery. I had to worry that we might not be able to celebrate a first year birthday with our little boy.
With all the worrying I did, I forgot to do one thing. Enjoy him. Enjoy his first words. Enjoy his little grins. Enjoy it when he learned how to crawl. Enjoy him saying ma-ma for the first time. Now don't get me wrong I took joy in all of those things but it was different than my other kids. The joy I felt was more of he was meeting his milestones. There was always this worrying that he might be delayed in some way so when he did what he was supposed to I was overjoyed. The thing all the doctors told me was to enjoy him, and I wasn't able to enjoy him in the way I wanted to. Even our craniofacial surgeons nurse (her daughter had craniosynostosis) told us to not worry and just enjoy him. It was just hard to do with constant reminders of what we were going to have to go through.
Now he is 11 months old and the surgery is behind us. There may be surgeries down the road but they wont be anything like what we had to go through. We DO get to celebrate his first birthday and it will be a major celebration. I am thinking over the top, but we will see what my husband thinks of my crazy ideas. I am making it superhero themed because the fact that Eli went through so much in his short life and still is a smiling happy baby makes him a hero. I swear these cranio babies have super powers. They light up rooms and are so strong. Their smiles and giggles are contagious!
I wouldn't give up what we have gone through in the past year. I know it sounds weird but I really wouldn't. We have met amazing people that will always have an impact on our lives. We get to spread the word about this rare condition and be able to talk to others that are going through this. We get to help support and show love to others. We get to brag about how strong our little boy was and what he has overcome. We get to HELP people. It is an amazing feeling to help others. The people we have met through this journey we will always cherish. We have become stronger through this journey and have learned to never take things for granted. Most of all we have learned to TRUST GOD. Sometimes it was hard for me to have faith, but in the end faith was what I needed most.
Just because my son already had his surgery doesn't mean that we don't have to do anything anymore. I have to take him to physical therapy twice a week for torticollis. Next month I have to take him to an ophthalmologist. He has to wear his helmet for another two months so I will have frequent visits with them to do any adjustments. A nurse still comes to our house once a month to track his development. It feels so good not to have to worry about having surgery though. There is now a peace in our household that we didn't have before. On this side of cranio our future looks so much brighter.
I am so happy that God decided to bless Brad and I with Eli. I am even grateful for all the struggles we have had. There are so many wishes I have for Eli and I have so much fun dreaming of his future. I love to dream what he is going to be like and all the great things he will do. Even though I wish this year could have slowed down I am so grateful for it.
I am so grateful for little cuddles and being able to have him fall asleep in my arms. I am so grateful for our little boy and all the mayhem and love that comes with him.
Peace and Love,
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