Choices

We stopped along the way home for lunch.  Over lunch we tried to avoid “the” topic by talking about trivial things, things to take our mind off the pain, but then it became too much.  We fell silent and I finally asked “What do you think?” 

Chase broke.  

I broke.

We both cried.

We couldn’t do anything but cry and look at our precious Cannon.  To think of what he would have to endure just to be made right, just to allow him to continue to grow and allow him the best possible future.  It was up to us.  We prayed and begged for guidance, guidance to give us clear answers, to guide us in the right direction, to give us clarity so we could see what we should do.

We talked about it for the entire three hour drive back home.  We got nowhere with our discussion really, except for the fact that we needed another opinion.  We wanted another choice, to make sure, to see all options, to hope that there would be something better, something less traumatic, something less awful. 

We came home and I didn’t know where to begin. 

I became obsessed.

I could not spend enough time on the computer researching and reading all about treatments, options and other people’s journeys through craniosynostosis.  I spent every spare moment, every evening late into the night and often early morning hours trying to find as much as I could about craniosynostosis.  I would cry so hard reading through it all.  The tears might have been from the exhaustion but I also felt a connection with every family, every baby because all I could do was picture Cannon.  Each story, I watched innocent babies with misshapen heads requiring surgery and going through the experiences like champs all the while my heart broke.  I could not spend enough minutes, hours, days reading through all of information. 

A week passed. 

I called our pediatrician’s office, we had switched the boys to another doctor within the office who had seen Cannon since birth and who we had connected with when Chandler had been treated by her.  I needed an advocate, I needed advice, I needed someone to give us hope.  She was out of the office until Wednesday, but I could not wait.

I remembered. 

The first nurse, she told us there were options.  She told us there was someone there in KC who could perform the surgery endoscopically.  I remembered her name, so I searched for her through all the paperwork but she wasn’t there.  I searched online for the surgeon that performed the surgery endoscopically.  I found him, but I needed a referral, I needed a way to get an appointment and fast.  Supposedly online, the endoscopic treatment had to be performed prior to five months of age but preferably earlier; as early as possible.  Cannon was three months old.  I tried to call the first surgeon’s office to seek out the first nurse we spoke with.  I had to leave a message with the only nurse’s number on the paperwork but I got nowhere except I was told to “Enjoy my baby.  I needed to relax and just enjoy our time.” 

I was shocked. 

I did enjoy my baby, I enjoyed every moment, I loved my baby, I was his advocate, it was my job to protect and provide for Cannon and I was doing my absolute best, but this meant that I needed to research absolutely every option and avenue possible. 

I was also informed on my voicemail that I would not hear from the scheduler for at least another four months or so, so again I just needed to relax. 

I was appalled. 

We could not wait. 

I didn’t know what to do. 

So, I decided that I would just call the main office and ask for the first nurse we spoke with by name. It worked!  I spoke with her for almost an hour.  I shared all my worries, concerns and questions.  I felt a peace and calm and finally I felt as though I could see clearly to get where we had hoped.  I told her how we were hoping for an appointment with the neurosurgeon, but we needed one tomorrow, well actually we needed one yesterday but that was not possible.  She spoke with a doctor from the office about my concerns.  They thought it would still be possible to perform the surgery endoscopically.  She scheduled an appointment for the following Monday, only three days away! 

We were ecstatic! 

We felt relief!

We felt hope!

Heartache

We stopped googling. 

I had googled and googled all throughout being pregnant and it had stressed me out beyond belief.  I didn’t see a need to try to sort through the fiction from fact and everyone’s opinions from actual experts.  We had come to accept the diagnoses.  We didn’t like the diagnoses, we were still shocked by the diagnoses and we were still hopeful, but we had faced the fact that this was our reality.

I still cried.

In the quiet, at night, after everyone else was asleep I would look at my beautiful baby boy and cry for what his life was supposed to be.  We were supposed to just worry about colds, runny noses, ear infections, not craniosynostosis, sagittal fusions and craniectomies.  I was mad that I was still so sad.  I was only supposed to be sad for one night, not continuously, but every time that I thought that I was done with the tears they would suddenly come again. 

I prayed.

I had found my way back to praying.  I would pray for strength, guidance, peace, calm and I would pray for Cannon.  I would get on my knees as my baby slept and beg that there would be another way to heal.  I would pray to make the hurt fade and the answers be clear.  I prayed that there would be hope that surgery would not be needed.  I prayed that Cannon would not have to go through all of this. 

I pleaded.

I would picture the moment that we would have to wave goodbye to Cannon and hand him over to the nurses and surgeons, my little precious Cannon and then I would break.  The closer May 9^th came the more tears I shed, and May 9^th was just the consultation to build a plan of correction not even the surgery date. 

I was so scared.

My friend who had walked through this awful craniosynotosis journey stopped by prior to our visit to KC.  I cried so hard again.  I told her about my tears and how I felt ashamed of them.  But in her comfort she reassured me that it was okay.  It was okay to be sad.  It was okay to be mad.  It was okay to feel whatever I was feeling because Cannon was my baby and it was granted to me to protect him, provide for him and this was so out of my control. 

I felt so alone.

It was as though no one could relate. Everyone else was going on with their lives stressing about all sorts of things but when they would share their stresses I would feel awful because I just wanted to say really?  Really, you think that your situation is stressful?  You have NO idea what stress is like until you look into the eyes of your smiling, cooing, innocent baby who trusts you to care for him, protect him, love him and you can’t promise that it is all going to be okay because you don’t know.  You don’t know what the doctors will say, you don’t know that this will fix everything; you don’t even know if this is what you should do for him for his future.  Others would be so stressed about the colds, allergies and stresses that come with a newborn and I felt as though I couldn’t relate because if only they could know the pain and heartache that was going on inside.  I never or would never wish this kind of heartache upon someone but I felt so alone.  I wanted to just worry about the little things not this.  I too looked back at the things I used to stress relentlessly about and thought now how ridiculous I had been.

I cried.

People didn’t know what to say so they would say things that would hurt more than help.  The comments of “at least this can be fixed”, would crush me.  Yes, I know, but he is a two month old baby, my baby and it doesn’t make it any better or hurt any less.  “At least this is not a life sentence” or “At least it isn’t ______________”(fill the blank with all sorts of horrible ailments or problems), okay, but right now it is so hard to see the end, so it feels like that it is a lifelong situation it feels like it is the end of the world to me and that does not make it any easier to go through.  “Do you think that you will have more kids after going through all of this?”  Well right now my focus is rightfully on Cannon, and I do not know what the future holds.  But if for one instant I would have thought that thought after going through Chandler’s childhood ailments I wouldn’t have my precious Cannon and I would never in a millisecond want to be here without Cannon.  “I think that maybe you shouldn’t have more children, because you endanger little lives with all the complications that you put them through.” WHAT?  Thank you for the extreme amount of guilt that I had already thought of, that I feel every single day, every moment and with every breath I take.  I love my children so much that I would never ever put them through anything intentionally.  I too, had hoped that my pregnancy with Cannon would be full term, our hospital stay would not be long, his future would not hold complications or pain but I am not the One who controls that and I wouldn’t change that because then Chase and I, Chandler and Cannon would not be who we are today, as a family, as a unit, as believers.

I prayed.