I've lost him twice now, the son I knew. The first time I was filled with rage most of the time. I asked 'why' so many times I've lost count. I cursed and hated, screamed and cried. I felt sorry for myself on several occasions and even sorrier for my baby. It was so hard for me to see children his age doing absolutely normal things. I'd watch parents chase their kids around the parking lot at school with that look of fatigue and annoyance. I read countless facebook status updates about the toils of potty training and temper tantrums. And I felt the burn each time. I felt the heat rise within me, fighting against that part of me that was saying, "They SHOULD be complaining about these things. This is normal. This is ok." But in those moments, I don't care. I'm not rational, and I don't particularly care to be. I say this because I want people to know that I'm no hero. I don't stand here and pretend to have all the answers (or any, for that matter).
This time is slightly different, and it has been since the very beginning of this chapter or our nightmare. First of all, we were only hospitalized because I felt like something was "wrong." A couple of days into our visit, I felt sort of foolish because he was doing so well. Obviously as the week unfolded I realized that listening to my gut was the one of the smartest things I'd ever done. Secondly, I reacted differently as I watched seizure after seizure take my baby further and further away. Instead of being just afraid and silent, I rocked him and sang to him, telling him that it was ok and I was right there. Last time, I'd let him lie down on the bed and I held his hand while they gave him drugs and he slipped deeper and deeper into "sleep." This time, I held him until the last possible second. Until they came at me with the intubation tube. I rocked him, and smoothed his hair and told him I loved him over and over. I cried too, of course, because I knew all too well what was coming. But, I did NOT let go, not until they made me. In this moment, I'm grateful for that difference.
We also happen to have had different circumstances this time, and although I've had some lousy days in my life, I wouldn't necessarily have been able to tell which was my lowest point. Now, I can give that answer and I realize that even as I write this, that could change. I've now been to "that place." I thought I'd been there before, but I was mistaken. You see, there is a fine line between struggling to watch your child suffer and telling him that it's ok to let go. I never thought I'd be able to imagine that, let alone say it out loud. But, I've been there and it's real possibility that I'll be back. I understand what it means to be in that moment. Where time stands still and races around you on all sides at the same time. You notice everything, from the heart beating in your chest to the antiseptic smell of the room, but you don't realize it until after you leave the moment because your brain is currently flying. You run through so many "what if" scenarios and "how to go on if" questions. And while all that is happening, you somehow channel that part of you that loves this person so much you could burst. And that's the part of you that talks to him, that tells him it's ok, that you're right here and you aren't leaving. That's the part that takes over and drives when everything is spinning out of control. You get to some sort of insane auto-pilot mode.
Getting to this place has made me realize that although this is hellish, it's also taught me so much more than I ever would have learned on my own. I know what it means to run out of tears. I know what it means to love beyond measure. And I know how important it is to share that, because you never know who might be reading and needing to feel like someone understands. I've been asked several times why I update people on my son's condition. Why do I write blogs about his illness and our journey? Am I afraid that it will be on the internet forever and maybe he won't want that someday? I've asked myself these same questions. But I realize now that this child doesn't belong to just me. He's beauty and light, all by himself. He's love and compassion. He's grace and kindness. He brings people together and shows them how to open their hearts.
I've laughed at the idea of WWSZD, but I also find myself answering the question sometimes. What will I do? I'll cry. I'll scream. I'll crumble. I'll get angry. But, I will also smile. I'll laugh. And I'll hold my son, and I'll sing to him. I'll smell his hair and read him his favorite books if I'm given that privilege. I'll cherish the moments we have because they are a gift. Like I said, I'm no hero. I'm just a mommy who knows what it means to lose her child and be given the chance to love him again.