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.

Grief

We woke up the next day and it was easier not to talk about it.  It was like if we didn’t talk about it then it wasn’t real.  I hadn’t told anyone else but my dear friends yesterday and my mom.  Chase had handled all the other phone calls.  I didn’t want to talk about it.  I didn’t want to think about it.

I was mad.

I was mad that someone so precious would have to endure something so awful.  I was mad that this is what my Cannon would have to face.  I was mad at the fact that no one had mentioned this earlier.  I was mad that after all the praying the results showed this.  I was mad that I couldn’t change this.  I was mad that I had been so hopeful.  

I was mad.

I know very well the stages of grief.  I knew that I was angry.  I was so angry I didn’t know how I could speak to God.  I couldn’t speak to Him.  I had trusted Him, depended on Him, needed Him.  So instead of focusing on being mad I pretended.

I pretended that it was all a big misunderstanding.  That maybe we would go to the specialist in KC and somehow Cannon would be healed.  His fusion would be unfused.  After all I believed and still believe in miracles.  So maybe, I could hope again for a miracle.  I could believe that there could be a miracle that the surgeon would not need to do surgery; Cannon’s body would fix itself.   

I was in denial.

It was easier not to talk about it.  Not to tell people.  I am not one who shares my personal life easily and my kindergarten world had become my escape.  My kids didn’t know and wouldn’t know about this.  When I was there in front of them, I pretended that everything was perfect, that my life was not crumbling apart, that I was not so devastated that I couldn’t be left alone.  But in truth I felt as though my life was crumbling, I was devastated, I was scared to be alone.  And in the quiet I would cry so hard.  On the drive to work or to pick up the boys I sobbed. 

I pleaded.

I begged that this could be taken away from Cannon.  I would endure this pain, this treatment, this reality.  I needed to take this away from him.  He did not deserve this.  I begged that the situation could be different.

I remember so clearly that night that I called my mom and I told her that I needed a day, I needed a day to cry until I couldn’t cry anymore and then I could move on.  I gave myself permission to be crushed with the overwhelming sense that this was our new life.  So I sobbed to her on the phone that night.  I couldn’t say anything or do anything but cry.  I couldn’t make sense of any of it.  I wanted to change it and yet here it was.

A week flew by and I knew others knew.  Or at least they knew something was wrong.  I again didn’t have the words.  It was easier to not admit that something was wrong.  If I didn’t admit it, then it wasn’t real.  If I didn’t put it into words, then it wasn’t real.   If I didn't admit it then it wasn’t something that I would constantly have to face.  I wouldn’t have to listen to others share words of sorrow, the comforting hugs, the sad looks, the thoughts of pity.  However, I had to.  I waited.  I waited until I really could not wait any longer.  Things were being said and pondering thoughts were causing erroneous things to be said, so I had to admit it.  I had to reach out and ask for prayers, prayers, to cover our sweet Cannon.  Because again, in this moment I did not have the words to give. 

***Thank you, thank you for your prayers, thank you for being strong and lifting us up as we were weak, we couldn’t think, we couldn’t have gone on to pick up the pieces without all of the prayers and thoughts.  Thank you, thank you for the words of kindness, sorrow and comfort.  Thank you for your hugs and pats on the back.  Thank you for holding our hands and your kind looks, full of strength and wisdom.  Many of you have experienced grief and have had grief greater than this yet you took on our sorrow and made it your own.  I sincerely thank you with all of my heart!***