God is faithful

“God is faithful.”

This had become my mantra.  In times where I could not take another breath because I was so full of worry or insecurity I would repeat this over and over until I could go on. 

We had asked for prayer support at church one weekend while I was still pregnant but having complications.  A man wrote us a postcard saying that he had prayed for us he also included more beautiful words of encouragement and then at the very end he simply signed “God is faithful!”  The postcard was taped to the fridge so that I could see it daily and never forget. 

I could not forget.

Then throughout the duration of my bed rest when the quiet was too much I would repeat it until my heart would calm and I knew I would be okay.  In the rush to arrive at the hospital, worrying about preterm labor and the pressure of not wanting a NICU stay, I repeated it.  In labor when the pressure was intense and there was barely time to catch my breath I repeated it.  When Cannon could not catch his breath and they were trying to decide if NICU was the place for him I repeated it.  During our stay in the NICU and the Special Care Unit I repeated it.  Then in the worry and anxiety of waiting for the diagnoses I repeated it.  In the moment, the days and weeks following “that” phone call I repeated it.  Getting into the car the morning of our first appointment to KC I repeated it.

“God is faithful, God is faithful, God is faithful.”

The drive was long.  Not that long, but knowing what lay ahead of us didn’t make the drive any easier.  How I wished that instead of driving to this appointment we were just going up to KC to have fun with both Chandler and Cannon.  Or how fun it would be to take a weekend getaway just Chase and I, but neither of those choices were reality.  We were headed to KC to talk to a pediatric cranio/facial plastic reconstructive surgeon to discuss the reality that Cannon had cransynostosis. We were headed to KC to develop a plan of correction, to face reality, to place our baby into someone else’s hands and listen to all the advice that would be given to “fix” our baby. 

I had spoken with my friend who had gone through this about parts of her initial consultation and I thought that I was ready.  She told me about “the” pictures.  The beautiful babies with post-op swollen faces, bruising and swollen shut eyes and she told me that if she hadn’t done that, then she might not have survived her son’s post-op face.  I thought okay, now I know to prepare myself for that.  But that was all that I knew.

We finally arrived after going round and round trying to find the right street, the right area, the right entrance.  We had been there before for Chandler’s same day surgery but that had been two years ago.  Like a flood though, all the memories and emotions from that day came rushing in.  This time it was Cannon I was holding.  My stomach dropped, my mind raced and my heart beat so fast that I started shaking uncontrollably. 

I wanted to leave.

I wanted to cry.

I repeated it "God is faithful." 

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.