Unmasked

Today, I wont hide behind a computer screen with a mascara filled face and type how awesome everything is, how honky dory it is. I wont type that despite our journey with Waylons heart that all is well. 

 Today I take off my mask and show the raw emotion involved. Today I am honest and REAL. 

Honestly, I am struggling today. My heart hurts, my eyes hurt from the multiple spurts of crying for unknown durations. 

After yesterdays appointment I am broken down. I dont usually allow myself to get this low, actually there are very few times that I can remember ever being this low. The biggest recollection is when we were first diagnosed with Waylons heart defect. I stepped away from the outside world for a bit and shut off my notifications from facebook. I couldnt bare dealing with everyones "im sorry for your situations" or the "I will be praying for your family" statements. I just wanted to be alone. Alone to deal with what was really going on, that my child would be born with half of a heart. With a messed up heart, missing parts, holes, parts to small to function correctly. 

I through myself into research about this thing called Hypoplastic left heart syndrome. I reached out to support groups of parents for emotional well being and for more research since they would know first hand what I would be facing within the upcoming months. 

So much came with this defect, it wasnt just a bum heart, but feeding issues due to being intubated and never learning to suck, vocal chord paralysis from being intubated, developmental delays, infection, compromised immune system, eye problems from low oxygenation, heart failure, organ damage from medications or the hearts low oxygenation. Then add in muscle problems and risk of brain damage from low oxygenation and being on heart-lung bypass machine. If it was a possibility, I read about it.

Almost everything I researched became a reality for my boy. But there were things we weren't told about that occurred at our local hospital that I later found out about, through reading his records. 

Hypoxic-Ischemic Brain injury popped out at me from the middle of the page. I wrote it down to remember to research it after reading #3 of 6 packets. My heart sank when I typed it in and seen all of the things he will be at risk for in the future and what caused it. 

I knew of this injury now, but was never able to sit down with a professional and discuss just what it meant. Until yesterday. 

After two long years I was finally able to see the results from the MRI done one Waylon after he became very sick at our local hospital. He was lethargic, his liver was swelling and I didnt know if he would make it. She read off the findings and highlighted the brain injury, then went over the images. Each one showed something new, something worrisome. Empty parts of his brain that are dead, filled with spinal fluid and will never be re-gained. Parts of his brain that were enlarged and the brain bleed. My eyes filled with tears as she went over them, but it killed me just a little when she described the dead part of his brain. Who wants to hear that part of their childs brain, no matter how small, is DEAD? 

Even more upsetting is not knowing! Not knowing what this will mean for him in the future. He will certainly have delays (as he does right now) but we will not know how severe they are until we get there, and we don't know if it will make him "handicapped" in those areas that he doesn't progress in. 

It wasn't until yesterday that I was finally able to understand how severe this was, I knew from reading about it that it wasn't good but had not seen the images or been explained to how bad his was. I didn't know what it meant for him at the time. 

I feel like we were diagnosed all over again. Alone, and that no one else had experienced this. 

I feel guilt for not getting him to another hospital, even though we didn't have a choice at the time (or rather was told we didn't). I wonder how a hospital can withhold such information, information that can be critical for his progression in the future and in the technique used by therapists, myself and doctors. How can that not be seen as pertinent information?!? And why in the HELL did I have to argue with a nurse that he was having seizures when he was already diagnosed with this injury (which intensifies risk of seizures)? How can it be okay to leave a family in the dark over this situation and expect them to find their own way?

Its not! Withholding this information did not save me from stress, and it wouldn't have saved me during the times that he was so unstable. Rather, it has created more stress because we are just truly learning about it, and because we could have went about his therapies in a different manner that would have worked better for him at the time. There is no excuse for it. 

So today, I am truthful. I am putting my anger, frustration, fear and sadness out there. I am taking off my mask of "Im okay". I wont stay here forever, just as I didn't when we found out about his heart. We will pick up the pieces yet again and push forward as ALWAYS to ensure that he gets the best care that he can get. Ensure that we aren't missing making memories that we could never get back because we are sulking in the anger, frustration, fear and sadness.