My Life, In Short: One of the worst days

I've done a lot of thinking about what the worst day of my life was. I've had a lot of time to think about it since Gray died. So many different days come to mind, really, so it's hard to nail down. You see, when Gray died, it actually wasn't necessarily the worst day. I knew a week before he died that he was dying. That it was only a matter of time. Of course, May 18th was the day my heart officially broke once and for all, but it wasn't necessarily the worst day.

After I woke up today, I got on Facebook, and the first thing I saw in my newsfeed was a picture of Eliana, a little girl with Trisomy 18 (or it could be 13) who I've been following for quite a while now. She was 115 days old today and was beating the odds. She'd just had surgery yesterday to put in a trach, and I was cheering for her. Rooting for her. You see, since Gray, I've had a strong attachment to other children who have rare genetic issues. I keep rooting for them and hoping and praying for them, that they'll LIVE and beat the odds. That doctors would keep discovering things and find ways to prolong their lives and that their lives wouldn't just be living in a hospital, but that they'd be able to go home and live with their families. Sure, probably on medical equipment still and with a whole slew of doctors appointments lined up, but LIVING and at home. When I saw her picture and read the caption, my heart just completely fell. She died very early this morning, after crashing in the middle of the night and receiving chest compressions....Her parents were obviously devastated, as were the 18,000 + followers on her page. She was a miracle, and now she's living in Heaven along with Gray. Another baby gone too soon, leaving hurting parents and countless others behind.

After reading about Eliana, I was hit so hard with the reality of today's date. April 1st. April Fools Day. I cried even harder. A real heaviness set into my heart. April Fools Day 2014 was one of the very worst days of my life. I was sleeping in my room in the Ronald McDonald House. Evan was sleeping on his blow up mattress on the floor beside me. I'd just brought him back from being at home and was so glad he was with me again. Gray had undergone several surgeries back to back and been sick with a cold, so we had all been separated quite a lot in March, to aid in Gray's recovery. My phone rang beside my bed at around 5:30 in the morning and I woke with a start. I answered and Gray's nurse informed me that he was having some trouble keeping his oxygen sat's up, so they were putting a nasal cannula on him. I was fairly incoherent in my half-asleep state, but something sounded off. I asked her a question or two, and said I was on my way up. They'd rarely ever called me so early to tell me anything of that importance. I got up, threw on some clothes and woke Evan up and helped him get dressed. I couldn't get out of the door fast enough, and we practically ran through the hospital, and up two elevator rides to get up to the PICU on the fifth floor to see what was going on. As we turned the corner to go to Gray's room, which was the last room at the end of the floor, I sensed a lot of activity. The nearer I got to Gray's room, I spotted them. Eight of them. The crash carts. Everything gets a little hazy in my memory after that, because I knew what that meant. Gray was in full-on Code, and here I had my seven year old son with me. Luckily the receptionist and tech offered to take him from me to take him to the playroom. I tried not to react but told him to go with them. I continued walking as close to his room as I could get. All the lights were on in his room and scads of people were in there, and also several nurses were out in the hall waiting... Waiting to see if anymore help was needed. The charge nurse approached me and started informing me what was going on. I think it may have been after I loudly demanded to know what the heck was going on. She told me they couldn't find pulses on him, his blood pressure was bottoming out and his heart rate was through the ceiling, but they hadn't yet had to do any chest compressions. They'd had to intubate him, and they were still working on him trying to get him stable. I could see the attending, Dr. Stock, pacing this way and that giving orders and the nurses working hard alongside. I was asked if I wanted a chair to sit in, since I was in the hallway. I said that NO I didn't want one and didn't feel like talking right now. I couldn't find my phone. Where was my phone?!?! I borrowed the charge nurse's phone and called Randall and said he needed to come down immediately. Gray was coding and things weren't looking good. The tech came and got my key to my room in the RMH and went down and brought me back up my phone. I made a few more calls to family and waited. I don't remember how long I waited out there.

I was finally allowed in the room and only a few more nurses were there, still inputting things into the computer and preparing for shift change. Needless to say, handing off a patient who had just coded for a few hours wasn't easy. Evan was brought back to me and he asked me a few questions, which I tried to answer as best and lightly as I could. Trying to protect my boys while my heart was breaking is one of the hardest things I've ever had to do. I can't even explain how it feels to live in two universes like that. Your dying kid lying before you in a bed, and your perfectly healthy and alive son wanting to know why he's up so early and what are we gonna do now Mom?? I had a rolling screen brought in and got him some blankets and pillows and laid him down on the couch beside me and I sang him to sleep. The screen blocked some of the light and the activity in the room....I didn't want Evan to be scared or know anything dramatic was going on. Randall showed up not long after, then my Mom and her friend. I think either my Dad or my Mother in law came to pick up Evan and take him home once again. I remember sitting on the couch most the day completely dazed. Gray had pulled through once again, but was hooked up to 2 IV poles worth of meds, was intubated and they still couldn't find great pulses on him, or for the next couple days for that matter. It was unbelievable. I was completely numb.

That was the day I broke. That was the day I knew things really weren't going well. That was the day I knew my son would probably never come home. I was completely shattered. I think that was the day I told Susan, our Palliative Care NP, that I was done. I had no hope left. My hope was gone. I completely broke down. You see, up until that day, I always had hope. We had a plan. Gray was beating all the odds. Every day he made strides and jumped over another hurdle. We'd had family care meetings with all his doctors and they gave me 6 weeks as a goal. Hopefully by then we'd be taking him home. But that day, the second time Gray coded, I knew it wasn't good. I sat there on the couch in his room, Room 555 I think, and looked at my sweet, beautiful boy, attached to everything and my heart completely broke. He had gone through so much, but how much more could he take?? I cried out to God. I prayed with words that weren't there, and begged the Holy Spirit to plead for me. If you're going to send a miracle God, let it be NOW. I'll never forget what Susan told me that day. She looked at me and calmly said, "There's always HOPE. Sometimes you just have to hope for something different." I knew what she meant. It hit me hard, but it gave me a spark back. I never stopped hoping. I never stopped fighting, but I knew I was probably hoping for something else, unless God supplied a miracle....and I kept telling him that..."Lord, if you want to perform a miracle, now would be a good time." But, you see, I'm a realist too. I know God doesn't always provide the miracle we want. His ways are not our ways. Sometimes His healing doesn't happen on this earth.

But, I kept hoping. It was a small sliver of the hope I had before, and it was a different hope. Sure, I still hoped Gray would be healed and I prayed that this one final surgery would do the trick....but the odds were so stacked against him. So, I started hoping for TIME. As much precious time as possible. I hoped he wouldn't suffer. I hoped death would be peaceful and swift. I hoped I wouldn't have to make a hard decision if he happened to Code again. I hoped I would be there when he went to heaven. I hoped everyone would get to say goodbye. And, I still hoped and prayed for God to heal my son. For him to be the modern day Lazarus. Let Gray be a beacon of light to the world to show God's amazing healing power!!! Let that be MY son. Please, God.

Within two days, all the IV poles were taken out of Gray's room and he was extubated. We marveled at God's mercy. Where Gray was never quite the same after that, there was a shift inside me that day on April 1st. I knew then, even more than I already knew, to value the time. To make every moment count. To love like there was no tomorrow, because I didn't know if there would be one. God gave us the gift of time. 48 more days to be exact. I loved on my boy like there was no tomorrow for every single one of those days. I didn't allow myself to shut down or walk away, but stayed there fighting with him and for him. Susan talked with us and had a full sized hospital bed brought in so we could all sit up with Gray, hold him and sleep with him as much as we wanted. I started thinking of his room as our home, because that's where my boys were---all of them. We spent as much time as we could with Gray and just loved on him. God, I miss him so very much today. I'm so thankful for each day I had with my son, even those very traumatic, hard days. Because, it was one more day.

I'll never forget April Fools Day for the rest of my life. It was the day I almost lost my son, but God gave him back to me for a little while longer. I'm so glad that He did.

I love you, Gray, and hope you're having a wonderful time up in Heaven. I'll see you soon, okay?

"Though he slay me, yet will I trust in him." ~Job 13:15a