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The dreaded nighttime again...

At least I was able to fall asleep tonight, after finding some peace by convincing myself that Brayden had been visiting some of his buddies from the hydran family support network... his bee-buddies, his girlfriend especially. I want to believe that is true, but I am still having such a hard time believing anything right now. Though the videos their parents shared and the stories I'm hearing, it's a nice place to keep by thoughts. Serena's mommy recorded her laughing and smiling while looking up at nothing else in the room, not even the lights were on. Johnny's mommy says Johnny was doing the same thing... tracking something around the ceiling while smiling and cooing. Some angel mommies believe that their little angels leave them signs that they're with them... 

I have this sickening sense of dread... not only is it nighttime and my mind is racing, but waiting for daddy to come home is making me ill. I cannot believe this is happening, that this happened... and tomorrow is Monday so I cannot hide from the phonecalls and responsibilities that exist during the normal business week that I was able to evade for the weekend. 

Tonight I still keep thinking back... what did I miss and why didn't I see this coming? This year has been a rough one for Brayden... breathing complications began with a diagnosis of laryngomalacia. We elected to do the hip surgery in hopes of helping the discomfort in his hips and straighten his body out. Then the pneumonia and septicemia with more airway complications and a PICU stay. He made it through all of that with a smile... who knew that it would end so quickly and unexpectedly. The word "end" makes me cringe... 

When Brayden was born we were sent home on hospice and told to prepare for him to pass. I remember folding his little clothes and bawling my eyes out thinking he would never get to wear them all, that at any moment he would just slip away. He never did and eventually that thought just got further from my mind. I always swore I wasn't in denial of the inevitable, but now I feel like I was. I feel like I thought for some reason Brayden was going to be the exception... like he would just overcome everything and outlive me. Maybe not outlive me, but certainly not leave us anytime soon. And definitely not when or how he did.... I would think about how I hoped for it to happen. Whether it would be easiest if he was ill and it was more expected or if unexpectedly would be best. Unexpectedly is definitely NOT best...

A week ago on Friday we were just at Brayden's IEP meeting at school discussing the equipment and services he would be getting, they were excited to get him active on his switches and advancing to two-switch communication. We then chatted about Brayden's transition in to kindergarten next year, how great it would be for him to be going to the same school with his sisters. His sisters, especially Adysson who has always been closest with Brayden because she wasn't in school yet when he was born, were so excited.... how awful for them. 

How can you be allowed to make these plans for your child and then have it all taken away? I know, they weren't my plans to make and someone else had a better plan... not fair.