Thursday, August 30, 2012

let the wave in, and then let it out

I know I said I was going to write more and possibly tell the stories of what happened last year and I totally had this great idea to tell you about Tyson's birth day and the days after that. But I didn't feel like it, so I didn't. This is something my therapist and I are working on... letting myself do and feel what I need at the time and then not analyzing the hell out of it. "Let the wave in and then let it out"... no more walls. I've had some waves, but this is the first wave I've had that I felt like writing about. It started as a facebook post but quickly got WAY too deep. I don't do dark and deep on facebook... but I'll do it on this blog and I'll probably link it to facebook. That makes it way better.

Anyways, to my little wave.


So, oddly enough, I haven't been having many "this time last year" flashbacks like I thought I would... until now. It wasn't Tyson's birthday, his Norwood surgery anniversary, his 1st crash/1st ECMO/1st time almost dying anniversaries... but it is college football starting tonight that is bringing it all back.

Last fall, I distinctly remember being smack dab in the middle of Vandy football: the tailgating, the sounds from the stadium, Solo cups littering yards, and the thousands of happy football fans as they drunkenly enjoyed the best part of fall which is college football. I walked through all this on the way to the hospital to visit my baby that was so swollen he didn't even look human with his chest wide open and that damn heart that wasn't whole pumping right before my eyes. It was just so fucked up.

I tried to play happy. We put on our orange, decorated Tyson's hospital room to an embarrassingly gaudy level, brought snacks for the PCICU, kept Tyson's tv on College Gameday, and we would even venture out into the real world for a beer at various bars by the hospital. I think Justin actually enjoyed it. He needed breaks and he needed the real world. I didn't. I hated being out there with normal people who smiled and laughed and got angry about football. I used to get emotional about football too, but on those days football didn't matter and I felt so damaged and awkward in public. So after a beer and a few smiles to appease my husband who thought this break was what I needed, I would excuse myself to go back to the hospital room to sit with Tyson.

I would walk back through all the happy people on the streets between the bars and the hospital. I was jealous of their ignorance as to what was happening just across the street in the big building full of sick kids. What is sadder than sick kids?! They didn't want to know about that, not on their happy game day. I didn't blame them... I didn't even want my worst enemy to see and feel what I was slowly becoming numb to. I remember walking alone so many times back then and the sun always seemed so painfully bright. Maybe it was because all I wanted to do was lay on the ground in a ball and die. But I couldn't do that... not until Tyson died. So I continued to go through the motions of what I thought could pass as socially acceptable... I continued to act like I still gave a shit about football.


When you watch your child, the child that grew inside of you for almost 40 weeks, when you watch them suffer to the level that Tyson was suffering... well, it isn't natural. It is horrific and it feels evil. We do it, the parents and the doctors and nurses and medicine... we all do it because we hope that it will be worth it, that after this hell, there can be happiness. But when is enough, enough? I know in my heart that each mother and father of these kids that suffer in hospitals everywhere have their own "enough", and no one on the outside can ever understand when that time should be but them. My enough was after Tyson's second crash... He was on ECMO again, which meant his heart and lungs were being powered by a machine. He was also on a dialysis machine that was working for his kidneys. His brain was bleeding. He was medically paralyzed because you can't move when your chest is open with the ECMO cannulas delicately attached to your heart... that would be bad. He wasn't a candidate for transplant because of how sick he was. So Tyson laid there, splayed out like a dead frog and looking like a cruel science experiment and I just stood there and watched. The doctors said they had no more options and that he didn't have much chance to live and if he did live, they had no idea of his quality of life. And I just stood there and watched. I was helpless. My baby's body was dying, but we wouldn't let him. We just added more machines and more iv drips, and we watched.

I was done. I was angry and I remember yelling at God, "if you want him, just take him already! What is the point in this suffering?!" I checked out and I just waited. When Tyson died, I could die. I never thought that I would kill myself, but I knew I would never come back. I knew Justin would leave me because he is strong and he would be ok, but I would never be ok. I would never come back... I thought of Tyson's funeral, imagined his body in the back of a big black SUV (the only person I know in the funeral business drives a black SUV), and tried to decide where we would even take his body. This is what I did for three days... the three worst days of my life. I began to grieve Tyson's death while he was still freaking alive... my biggest regret of my life.

It was on that third day that I snapped out of it enough to know I had to talk to Tyson. If he was going to die, he needed his Mom to be with him and he needed as much love as his little body could take in while he was still here. I sat with him and I cried. I had a rule that no one was allowed to cry next to Tyson, but on this day I broke my rule big time. I told him how much I loved him, and that I really wanted him to live and keep fighting, but I told him I only wanted that if he did. I told him it was ok to stop fighting if he was done, and that I would love him just the same. This was his life, not mine, and I needed to believe that he wanted to be here, and that we weren't forcing him to stay alive against his will.

A couple days after our talk, the doctor's took him off ECMO successfully which surprised everyone. It was from this low point that Tyson slowly got better and better. I know it could just be science, and it could have been God's will the entire time, but I choose to believe that it was also Tyson who chose to live. That he would have wanted us to let him suffer the way he did so that he could live and enjoy this life that he has today.


A year later, college football is starting again and I remember these dark days so well. I had to fake smiles and force motions, but now I can see that I had to do all that to survive. It wasn't about tricking anyone or trying to fit in... I think I had to pretend to enjoy things to keep my soul alive in a way. It's like I gave my happiness a placeholder... like instead of letting that part of me wither away, I kept it open by at least trying. I tried to live and I tried to enjoy football and friends and movies. The point wasn't that I was empty, it was that I was trying.

This football season, I'm ready to start filling up those placeholders that I made a year ago. I'm ready to be happy and have the capacity to truly enjoy something that is the opposite of life and death... a game... of men in tights... running with a ball. I'll never ever forget about all the kids that are sick in the hospital across the street, but the whole point of that hospital and the whole point of their fight is so they can grow up and enjoy these wonderfully simple parts of life.

Tyson baby, get ready for your first season of college football. And in case you didn't know, you bleed orange.

1 comment:

  1. Meg, that was an incredibly raw and touching account of some of the hardest days of your life. As a fellow heart mom, most of us can understand just how you feel, whether we have hit all time lows or still just praying they don't happen. Thank you for sharing your thoughts with all of us, for me, it is so nice to be able to remember those "this time last year" moments and see how far your warrior child has come! I'm so glad your family is doing well this time this year!