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.

Why?

It was 4:00, I prepared myself.  I knew that the nurse said I could ask whatever questions I had.  But I didn’t even know what to ask.  She gave me all the details of the appointment in KC.  Our appointment would be May 9th with a pediatric craino/facial reconstructive/plastic surgeon.  I had read that if surgery was needed this is the type of doctor one needed to see.  So I was relieved.  We continued to talk about the details of the appointment, what I needed to take to the appointment, a contact from the doctor’s office and then at the very end she said “Also, the doctor here told me to tell you that she just doesn’t feel comfortable answering any questions about this since she has never experienced this before so if you have any questions don’t call here just call up to KC.” What?  I too was new to all of this.  I too had never experienced this.  This was my baby, I wanted an advocate, someone who I could talk to about it, but don’t call her?  Okay?  We ended the call and then came the rush of tears, the rush of the reality of the situation and the fear.

I cried.

I cried so hard I thought I might be sick, I couldn’t breathe.  I was still at work but the kiddos were gone.  Then like angels my best friend and my friend from earlier came in.  They both knew words were not needed.  They were just quiet.   I stopped the broken dam of tears long enough to have them both share comfort.  At least I had someone.  I had someone who had gone through this before.  Someone who could relate to this insane unheard of situation.  I would survive; maybe.

I left.

On the drive to pick up the boys I just kept replaying all the events like some awful dream.  Surely that’s what this was.  So many peopled prayed, were still praying, we had prayed, we were still praying.  I didn’t understand.  I couldn’t understand.  It didn’t make sense.  I didn’t know what the surgery would entail, but I knew that any operation on your precious beloved one especially a precious innocent baby who had no idea what was going on except that he was so dearly loved and cared for was awful.  He was happy and cheerful.  He rarely cried.  He would have to endure a major operation to fix something that shouldn’t have happened.  I arrived to pick up the boys and again I broke. 

I didn’t want to talk. 

I didn’t have words. 

I couldn’t talk. 

All I could do was cry. 

Fortunately, there were so many others there to pick up their kiddos that I didn’t have to.  I knew that our daycare provider knew but she didn’t push.  I squeezed both my boys so tight.  I didn’t want to let go.  If I could just hold them forever in that moment then everything could just stop and I wouldn’t have to face reality.  After all I thought I was strong.  I thought I was capable.  I had faith.  I had God on my side.  Then there was this...this swift kick to reality that not everything could be perfect.  Not everything could be so smooth.  There had been a pastor once preaching on storms in life.  He had said that if you’re not in a storm now then you were on the edge.  If you weren’t on the edge then somewhere in the horizon there was a storm brewing.  It was up to us, to our strong faith as to how we entered the storm and how we would survive the storm, however, right in that moment I just wanted to close my eyes and make it all go away.  How could I go on knowing and waiting for what was to come?

I questioned everything.

We got home and I collapsed literally into tears.  Chase was there.  We just stood for a long time embracing each other, not needing words, not needing to talk just needing to hold each other up.  Then we were back to our reality.  Cooking dinner, bathing the boys, feeding Cannon, reading bedtime stories, nighttime prayers, tucking Chandler in, feeding Cannon and falling into bed with exhaustion all the while tears were in my eyes, questions were storming my brain and my calm was gone.  In one phone call, in a few spoken words all of it was gone.