I was blessed to know many wonderful people at the time of my son's death. What began as a patient relationship, quickly developed into something much more meaningful. One of the most influential people during that time was a social worker named Ashley. She and I hadn't gotten off to the best start the first time around, mostly because I was shrouded with anger and disbelief. But, Ashley never wavered. She came in day after day, reading to my comatose son, or simply to stand silently in the back of the room, waiting to be needed. Eventually I opened up to her, and felt great peace just seeing her face after that. We had many discussions and laughed and cried together several times. But, the thing I'm eternally grateful for was her final gift to me. She said, "I truly believe that no matter what state our loved ones are in, they hear us and feel us near them. Don't be afraid to tell him how you feel. I know he hears you. I can feel it."
That may sound simple enough, but you have to understand that at the time, something in me had already realized where we were headed. I had some sort of intuitive sense that this would be our last visit, and I just had to wait for everyone else to catch up. So, I'd subconsciously begun to pull away. I began to distance myself from my baby. I did all of the mechanical aspects of care. I became super nurse and no longer Mommy. I did, that is, until Ashley gave me permission to grieve before anyone else did. After that simple statement, I began to reach out to him again. I moved the cords and tubes and I climbed into bed with him. I read him stories, traced the outline of his little fingers, and I told him how much I loved him. She gave me the gift of "nothing left unsaid."
What I didn't know was how many ways I'd have to say good-bye. Of course there is the obvious pain of physically letting go of your child, but it's the subtle, unknown good-byes that continue to hit long after that final day. For instance, I never got to say good-bye to Mickey. Do you know how many things "stop" when something like this happens? A typical morning for me consisted of getting my older children ready for school, but quietly so that Easton could have at least 5 more minutes of the precious sleep he so often missed. Then I'd get them in the van and have to wake my baby, which is hard enough in a typical situation, but waking a child with seizures is crushing. He'd open his eyes slowly as we backed out of our driveway, and he always looked as life had just beaten him repeatedly. But, as always, he'd have that sweet little smile for me as I checked on him in the rear-view mirror. And although, I'd like to say I was checking for that smile, the truth is it was seizure counting time. Forget texting and driving, I was counting the number of times my child's brain was misfiring, and it was nothing at all to get a number near 100 in the amount of time it took me to get from my driveway to the school and back.
Then we'd go inside and I'd plunk him down in the middle of the living room floor and immediately turn on Mickey Mouse Clubhouse. This was necessary because I had to begin weighing and measuring ingredients for his breakfast. Everything was made from scratch and baked or fried, so I'd have to keep checking on him by jumping back and forth from the kitchen to the living room. I'd usually go in and talk to him about something silly that Goofy was doing. He'd "moo", of course, and smile, indicating to me that it was ok to continue with my cooking. When I finished his meal, I'd try to feed him as much as I could before therapy started at 9. If we couldn't finish before then, he'd eat while working, and I'd get out my pitch counter for the official hour of seizure counting. And all of this happened by 10am every day of every week.
But what happens now? What happens when you get home and it's so eerily quiet that you wonder if you imagined all those things? Mickey doesn't come to my house anymore. I can't hear his high-pitched, squeaky voice from my kitchen. I don't smell the ketogenic eggs frying in the pan. When I poke my head around the corner, there is no curly-haired baby smiling at me. And trust me, I've looked...a thousand times.
So, when you're wondering how someone gets through this, and if they're finally doing "better" remember that their good-byes will continue long after you've forgotten. I will never be able to give someone the satisfaction of saying that I'm "better." I'm doing what I can each and every day. But, my normal isn't going to come on anyone else's time. I'm creating a new life here, and although that makes others uncomfortable, please remember that I'm still trying to say good-bye to Mickey.