One year later...

This post has taken me a year to write. I've thought about it many times, but just haven't been able to summon the emotional energy that it requires. I want to take you back to June 17 and 18 of last year. Back to the 24 hours that changed my life forever. I've never written about what happened the night Matthew died or why he died, and I kind of want to get it out of my system today.

As you know, I was living in Charleston while Matthew was at MUSC. Cole and Claire were in Aiken at the time. For days I had been told that Matthew was soooo close to coming home. He had recovered from his open heart surgery well and all he needed to do was be able to feed himself. We were very hopeful and very optimistic. I had stopped worrying about if he would live and was just impatient to get him home. We knew he had more surgeries in his future and just wanted him home so that we could have some peace and quiet and family time.

That Friday, June 17, my parents and brother Sam came to Charleston for the wedding of a close family friend that was taking place on Saturday. After a weeks of going back and forth to the hospital, I was really excited to have something fun to do. I had bought a new dress for the wedding and was ready to just be a "normal" person for a day.

The huge thing about the timing of this was that Sam was the only close family member that hadn't met Matthew yet. He had just graduated from college and spent a few weeks traveling and getting ready to start a new job, so he had been really busy. At the last minute he decided to come to Charleston to see me and meet Matthew. As I look back, this is just one of the many times where I can see how God really was controlling the details. We had no idea what was getting ready to happen, but God knew, and He worked it out so that Sam got there just in time.

They all got there in the late afternoon. My parents were staying in a hotel, but Sam decided to stay with me. We all met up at the hospital around 5 pm so that Sam could meet Matthew before we went to dinner. It was a sweet but hard time. Matthew had been really struggling with what I thought was acid reflux and he was throwing up a lot. He threw up while we were there and seemed a little agitated, but after being held and rocked, he settled down, so we left and went to dinner.

At dinner, we talked and laughed and I even had a martini. It was so refreshing to have my family in town and it really boosted my spirits. I remember feeling very free and happy all of a sudden. I felt like I was beginning to see the light at the end of the tunnel and I felt so hopeful. It's strange to me now, looking back, that I felt such peace and calm before the storm.

After dinner, we went back to the hospital to see the little man one more time. We didn't spend much time there because I was tired and we were planning on spending the whole next morning there anyway. My mom wanted to take some pictures, but stupid me, I was impatient and told her we'd have plenty of time the next day. So we all kissed him and told him we loved him and then we left.

Sam and I got back to the house where I was staying and decided to go on a run. Then we sat on the porch, just talking and catching up. We talked about our futures and our plans and he asked me lots of questions about Matthew. Around 11:30 pm, we decided to go to bed, so I headed upstairs to shower. I checked my phone first and saw that I had missed a dozen calls from Cole and one from the hospital.

Immediately I started to panic. I felt my heart beat faster and my hands get shaky. I called Cole first and he told me that I needed to call the hospital because something was wrong with Matthew. I called the nurses station and they told me to get there as fast as I could because Matthew had been moved back to the ICU and wasn't breathing on his own.

Sam and I quickly jumped in the car and sped toward the hospital. The whole way there I just kept saying, "This can't be happening. This can't be happening." We got there and ran to the ICU. The doctors told us that when a nurse had come in to check on Matthew around 10 pm, he was struggling to breath and his heart beat was really low. They had done some tests and thought that he was probably struggling with a side affect from surgery, most likely an intestinal issue. They were monitoring him and trying to decide if he needed surgery. They kept saying that it was very serious and that he was not doing well. I called my parents and told them what was going on and then I called Cole back and we decided that he should drive down.

After waiting for what seemed like forever, Sam and I were able to see Matthew. He looked awful. He had been intubated again, was heavily sedated, and had a thousand IV's in his little body. Such a change from just hours earlier, when he only had his NG tube in and had been alert and bright-eyed. As I sat there and held his hand, I felt a fear that I had never known before. I looked at his tiny little body and thought, "How can he make it through this? He's so little. He's so tired."

My parents got there soon after and we all just sat with him, while the doctors discussed what to do. His stats weren't good and it was getting obvious that he needed more than drugs and oxygen to keep him going. Around 2 am, his doctors told us that they were almost positive that the problem was in his intestines. You see, when a baby has a shunt taking blood to his lungs like Matthew did, his blood pressure is lower and so sometimes the blood flow to various organs can also be low. Usually babies adjust to it and it isn't a problem, but in Matthew's case, the blood flow to his intestines was low enough that it caused enough damage and his intestines leaked into his abdomen, causing acidosis - increased acidity in his blood and other body tissue. This is why he had been throwing up more, not because of acid reflux. I don't know why it happened so fast and why there weren't more warning signs, but apparently Matthew had an extreme and unusual form of this complication. His doctors explained that the acidosis had caused his respiratory and heart problems and that in order to stabilize him, they needed to go in and cut out the damage intestines.

This was when it really got scary, because they said that if it was too advanced, there might be nothing they could do. They warned me to prepare myself, that he might not make it through the night. So I had to say goodbye to my little man before they took him off to surgery, knowing that he might not make it. I don't really remember what I said or did because it all got kind of blurry.  I remember sitting in the waiting room with Sam and my parents, not knowing what to do with myself. I remember praying like my life depended on it. And I remember feeling so very helpless.

At some point, Cole finally got there and God, in His providence, allowed him to see Matthew as he was being wheeled to surgery. If Cole had walked off the elevator a minute earlier or a minute later, he would have missed him. But God worked it out so that he walked out just in time, a nurse recognized him as the father, and he got to kiss his son goodbye. He took a picture of Matthew, the last picture  we have of him. He looks awful, but here it is.

Then we all waited. And hoped. And prayed. 

And then it happened. Just like in the movies. We saw two doctors walk into the waiting room. We saw the seriousness on their faces. We held our breath. And then we heard the words, "I'm sorry. He didn't make it. The acidosis was too advanced and his heart stopped before we could open him up." It was 6:06 am. 

If you've ever lost a loved one, you know what that moment feels like. For me, it was like my body started crying but my mind went into denial. I felt like I was watching it happen to me and I wanted to tell myself that it wasn't real. I kept thinking, "NO! He still here, we can still save him, he can't die!" 

And then we were all in the room with him, crying as we looked at his calm, still body. Knowing that he wasn't there anymore, but not being able to wrap our minds around it. I helped the nurses wash him and then dressed him in a blue striped onesie. We all took turns holding him and saying goodbye. I remember holding him to my chest and sobbing, knowing that in a few minutes I was going to have to give him up and never see him again. I think in that moment I went a little crazy. I remember telling Cole that I didn't think I could leave him. I didn't think I would physically be able to tear myself away from my baby. I felt that I was abandoning him. I knew that his soul was with God and that he wasn't there anymore, but I didn't think I would be able to leave his precious little body on that table, alone. I mean, how do you tell your child goodbye? How do you leave your baby? I must have given him a hundred last kisses before we finally decided to leave. His body had started getting stiff and he was beginning to look blue and we didn't want to remember him like that, so we left. 

Leaving Charleston was so hard. I kept fighting the urge to turn around and go back to the hospital so I could hold him one more time. I really did feel kind of crazy in my grief. Irrational. Angry. Incredulous. Lifeless.  

I felt like I was in a horrible dream as I packed up my things and drove away. My mom offered to drive back to Aiken with me, but I wanted to be alone. I spent that time in the car crying and screaming and yelling. I was so mad. I was so broken. I kept looking at the empty carseat in the back seat and screaming at God, asking why there wasn't a baby in it. I felt so cheated. I kept thinking back to the night before, when I felt so happy and carefree and I felt like it was all a cruel joke. I kept asking God why He had given us so much hope, only to take it all away? 

The rest of that day and the next few days are a blur. I just sat around and cried. I couldn't do anything else. I remember telling my dad that I didn't know how to keep living with Matthew gone. I didn't know how life could keep going when I felt so empty. 

Now here we are a year later. Thankfully I feel very different. The pain isn't so sharp and I feel less empty. I cried the whole way through this post, but looking back, I'm able to be thankful for so many things. I'm thankful my brother got to meet him in time. I'm thankful that I wasn't alone that night. I'm thankful that Cole got there in time to say goodbye. I'm thankful for all the love and support that we felt, and still feel, from our friends and family. I'm thankful that my little boy is no longer suffering with his messed-up heart. I'm thankful that God walked me through this dark, dark valley of pain and helped me get to the other side. 

Today is a very hard day. I think it will always be hard. I miss my son. There's nothing I can do about that. But rather than mourning every year when this day arrives, I'm going to think of it as a countdown to when I get to see Matthew again. 

So, one year down, who knows how many to go.....