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.

CT Scan

The weekend was a blur, full of family and events.  Anything and everything to try to keep our mind off of the reality of the situation.  But it was Easter weekend, full of rejoicing and celebrating, what this holiday meant to us, to our family, to our faith.  However, no matter how much joy and laughter there was there was still that moment, that thought that would never stop.  It was the fact that on Monday, after the CT scan things could drastically change.  The peaceful calm life that we were settling into could possibly be tipped.

I was not strong enough.

I knew I was not strong enough. 

In the still and quiet I would doubt.

I doubted myself. 

I doubted the doctors. 

I doubted the results. 

I doubted the fact that this was happening to us, to our beautiful precious Cannon.

Of course we had googled.  We googled that word, scaphocephaly.  We saw beautiful babies with misshapen heads.  We compared.  We analyzed.  Sure there were similarities but Cannon was different, right? We read.  We researched just basic treatments, you know just helmets nothing invasive, nothing too difficult to endure.  I pulled pictures striving to find a picture of the top/side/front/back of Chandler’s head from when he was a baby.  I remembered every well child checkup they would and still comment on Chandler’s head being high on the percentile chart, I mean like in the 98%.  So surely this was just going to be Cannon’s story as well. 

I stressed.

I thought for sure I would be sick.  However, fortunately the weekend alleviated even if just for a short while the constant thoughts.  My thoughts were awful.  I felt as though I somehow was responsible.  I still wonder.  Maybe if I hadn’t been on bedrest.  Maybe it was in my genetic makeup.  Maybe it was my inability to carry my babies full term.  Maybe it was something I had done because surely he would not be created this way.  This was a deformity, it was me taking ownership of it, needing to take ownership of it.  But Chase, kept on ensuring me it wasn’t, kept saying it would be okay.  So I trusted that God would be there.  We would get answers.  Again though, what do you pray for?  So I prayed that God understood that I didn’t have words right now because I just didn’t know what to say but that the Holy Spirit could take my heart and make it known.  We wanted there to be no scaphocephaly, but if there was we wanted God to guide us through it because we knew we were not strong enough.  But if worse came to worse then there would be the need for a helmet.  That was all.

I hoped.

Monday came.  FINALLY!  Chase took Cannon and with the help of his mom the CT scan was a walk in the park for Cannon.  He acted as if it was no big deal.  I think they were literally done in twenty minutes of the start of the scan!  Chase called at 2:30 and I was shocked but so relieved.  There had been no need for sedation and they had gotten called back so quickly Cannon hadn’t even got to finish his bottle but he still did great!  Thank you Father! 

Now we waited and prayed.