12 days from now.

We now have the surgery date, the pre op appointment, and are just waiting on the insurance approval so the Neurosurgeon can give us our full set of instructions. As we get closer to the actual day, my mind is starting to wear down the strong wall I’ve built. For months I have been able to push the thought of this surgery far off ¬†into the small dark corners of my mind. But its 12 days away now.

My stomach does flips when I read that. 12 days. I have registered for a care package on Sawyers behalf at craniocarebears.org, and I have been reading their updates on other surgeries. Its empowering reading other mom’s strong words of heartbreak. I know Sawyer’s story will soon be on their board. And I hope it helps other moms like myself have a deep breath and just a moment of peace in the whole process.

I can’t tell you its been easy, since most of you know our struggles with health care and insurance. I’m not going to say one system is better than the other because both have faults. I think our hardest struggle is knowing both, and having to switch to an unfamiliar system. We have had amazing Doctors and always wonderful nurses, they just come between frustrations over the phone. And though its been a rocky road, its almost over. {Please don’t let me have another high risk pregnancy! We’ve seen enough doctors this last year to last a lifetime already!}

So as we gear up to the worst day of my life Sawyer’s surgery, I am starting to break down a bit each day. I cry reading the success stories, I cried last night reading “I’ll like your for always, I’ll love you forever, As long as I’m living, My baby you’ll be.” Basically I cry at anything. I must be so fun to live with {thanks Brandon} I’m starting to pack a hospital bag for sawyer. With anything that buttons up instead of going over his head. Some toys, some books, Some super soft blankets. And the one I made for him that he loves to run his hands over. I know for me being told I wouldn’t be able to see for 4 days would be extremely¬†disorientating, but Sawyer won’t know that’s coming at all. So I want to make that transition as easy as possible for him. He loves to hold any of my necklaces in his hands while he falls asleep. {which is why there is 3 laying broken on my nightstand right now} So I am packing things like that too. To let him know I’m Here For You.

12 days.

3 thoughts on “12 days from now.”

  1. Hi. I saw that you repinned something from my cranio board on pinterest so I clicked on your blog and read a little. Sounds like you’re right in the middle of the craziness so I just wanted to offer you some support and let you know that I’ve walked in your shoes. It’s such a scary time but there are many HAPPY days ahead. I too had the crying fits and felt like I was barely getting by – just trying to survive – but you find a way to do it and the relief when it’s all over will amaze you. My daughter had surgery for sagittal cranio 2 1/2 years ago and it’s amazing how quickly they recover. She was 4 months old at the time and smiling at us from her hospital bed on post-op day 2. Crazy! If you have any questions at all please feel free to contact me. There’s also a great forum on craniokids.org where you can ask any questions or just vent. I’m glad that you found craniocarebears too. Shelby & Summer are amazing!

      1. Beth,

        Thank you so much for the kind words and advice. Sometimes we just feel so alone in all of this. They tell us its quite common but I have to endlessly explain what it is. We are so glad to be coming to the end of this journey. And we are so touched by everyone we encounter through this experience. Its amazing what a little note over the internet by a fellow cranio mom can mean to you!
        Thank you for taking the time to write me!
        alissa

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