Four Years Ago

Well it's been four years since we chose to take our son off of life support and pass away in our arms. It almost doesn't seem real. But then I look at his pictures, his things, and the memories come flooding back. I never believed he would die. I never believed we would live this strange life of raising a twinless twin. Will doesn't quite understand still. He talks about MJ and how he lives in Heaven, but the concept of his twin brother dying hasn't yet hit him, I literally typed this same sentence last year, so again I am wondering when he will understand. Maybe I am hopeful he never truly will because then maybe he won't feel this pain.  Our lives are so busy, busier then ever with Will and Maci.  But four years ago today my heart shattered and piece went with MJ when he died, its a piece that I'll never get back, and I really don't want it back. It's a piece that is forever MJ's. Slowly it gets easier the manage the pain. It never gets better, just easier to manage on a daily basis. Today is hard, today the memories flood back and I wonder how I made it through those painful hours of saying goodbye . . .

It all started on my birthday, August 28, 2009. We woke up that day after a few rough days with MJ, and were hoping for a much better day. After all, it was my birthday! What better present could I get then a good day with my sons. We called the hospital and they said that MJ was doing great, he had a really good night, and the goal for the day was to turn down his oxygen. He was one 98-99% oxygen, and he really needed to start making a turn and breathing more on his own. Since he was doing okay, Willie decided to go to work, at that point we were preparing for a year long stay in the NICU with MJ, and so Willie was trying to conserve his days off of work. Will had his month check up at the doctor that morning, and so I took him in late morning. After our appointment I stopped by my work to have some birthday treats, and the plan was to relax a little in the afternoon before Willie got off work and we would go see MJ. At noon I called the hospital again, and he was doing even better! I was so elated, MJ was giving me the best birthday present ever. His oxygen had been turned down to the mid 80s, and they thought they would be able to turn it down more in the afternoon. The nurse actually said, "We can't turn it down fast enough, he is doing so great!"

After a quiet afternoon, we left for the hospital. We walked up to his room filled with hope: our son was having a great day in the NICU, and it was my birthday. We never had a clue what we were about to walk into. After we scrubbed in, the entered his room to find seven to eight doctors crowded around MJ. We didn't have a clue what was going on, and waited in the wings of the room as the doctors tried to figure out what was wrong. He was have a very bad bout with pulmonary hypertension, and had a ton of pressure in his chest. His heart beat was erratic at best, and it seemed as though his little body was shutting down. We were only able to get a few peaks at MJ while the doctors were trying to find the best solution. Once we were able to get a clear look at him, we both knew. It's a moment I will never forget, a moment that I knew my son was going to die. He had enough, he couldn't fight anymore. It was something that came over me that I will never be able to fully describe, almost like someone was telling me he was done, and just couldn't fight anymore. I had to leave the room to gather myself, and went to go call my mom and sister to tell them to come to the hospital.

I went to the parent break room to use the phone. We weren't allowed to have cell phones in the NICU, and so I had left my phone in the car. My sister lived an hour from the hospital, and my mom was in for the weekend, and was spending the night with her. I struggled to remember my mom's cell phone, and so I called my dad in Chicago, hoping that he would be home. He was home, and started crying and told him that MJ was not doing very well. I asked for my mom's cell phone number, and my dad asked how bad it was. I never forget my response, "Daddy, he looks like he is dying." My dad started crying, and then I called my mom. All I had to say was that MJ was not doing very well, and my said, "Okay, we're on our way, give us an hour."

The next hour or so, Willie and I struggled for composure. We had been hit with a brick, and were praying that MJ would pull through and survive. Our nurse arranged for a room for us to sleep in a parent room that night in the NICU. They didn't want us leaving the hospital for fear he would die while we were gone. We wouldn't have left anyway, we knew that MJ needed us. The doctors discussed our options, and said that for the night his goal was to remain stable. His oxygen was back at 100% support, and he was oxygenating (the amount of oxygen his blood was getting) around 70%. His goal was to be at least 92% oxygen.

After we got settled in our room Willie ran to the hospital cafeteria to get us some dinner. It was the last time we would eat there, after we had basically lived there for 35 days. The food tasted bland and was cold.

After awhile my mom and sister got there, and we all struggled to grasp what was happening. His little body was changing hues from semi-health to a dull tone with gray and green. Everything was shutting down, and the doctors were doing all they could do to keep him alive. My mom told me that my godmother and her son were on their way to the hospital, too. She was in town visiting him for the weekend, as he went to school at the University of Kansas. After awhile they got there. It was such an amazing feeling to be able to introduce my son to only the seventh and eighth people to meet him other then the amazing doctors and nurses who took care of him on a daily basis. So many of our family live out of town, and so they could not meet him. We told everyone to wait until he was more stable, or able to come home before coming out to visit. We all took turns visiting MJ for a few hours. Only two people could be at his bedside at a time.

Around midnight that night everyone left. My mom and sister had plans to come back first thing in the morning, and we were going to try and get a good night of sleep. We went and said one last goodnight to MJ, thanking God for another day with our son. I was so thankful that he had made it through my birthday. I didn't want to remember that on my birthday my son died. (Although I will always remember it as the day before my son died.) We were physically and emotionally exhausted. We both layed down and fell asleep. We didn't have a change of clothes, toothbrush, or anything else with us for that matter. We simply slept on a bed in the clothes we had on.

I woke up the next morning about 7 am to nurse Will. We were not allowed to see MJ until 8 am because the doctors were doing rounds. At 8 am, I left Willie and Will to see how MJ was doing. I walked in to find our favorite nurse, who I thank God that she was our nurse that day. We could never have gotten through the day without her. I walked over to MJ and kissed him good morning. Megan walked over and I asked her how he was doing. She had asked what time I had last been in to see him. I told her around midnight or so and she told me that he was doing worse. His was now oxygenating around 60%, and his arms and legs were turning blue due to the lack of oxygen. I told her I needed to go get my husband and I would be right back.

I woke Willie up and told him we needed to go see MJ, he was doing worse. We were gone maybe 15 minutes, and we walked in again to find five or so doctors huddled around MJ. He was having another erratic heartbeat spell due to the pulmonary hypertension and pressure in his chest. We quietly took a seat in the corner while the doctors talked over their plan of action. Megan came over to us and said that there was something that she needed to talk to us about, and she wanted to be the one to tell us. They thought that it was the day, and that at some point that day we would have to make a choice to hold MJ, or let him die alone on his bed. We had never held him yet, and even though we knew in our hearts she was right, we still felt as though we were hit with another bag of bricks. We cried and looked at each other wondering how we could ever make that decision. A few minutes later, one of the doctors came over to tell us the same thing. She said that they weren't out of options yet, but it was coming to that point. She asked us if we wanted them to continue treatments and try to save his life, or what else we wanted to do. We said save him, please save our son.

A little while later a cardiologist specialist came in to see MJ. He was obviously on his way to play golf, or do some other Saturday activity. But first he came to try and save my son. He looked over ECHO results and came over to talk to us. He said he didn't know why MJ was having the erratic heart spells that he was having, but that it was due to the pulmonary hypertension, and pressure in his chest. He thought he had a few tricks up his sleeve that the doctors were going to try. They started him on a new medicine, and said that they would give it an hour to work, and then they would try the next one.

My mom and sister got there shortly and we caught them up to speed with the plan to save MJ. The next few hours we stayed and prayed by his bedside. Every hour or so, they would start him on a new medicine, hoping that one would start to work. His oxygenation kept falling, from the 60s, to the 50s, and then to the 40s. At some point that day my mom and sister went out to get some food for us. I think it was Burger King. I remember it tasting bland and not good, literally like sawdust. They forced us to eat, as we didn't really want to have anything to do with it. My sister and I were in the parent room by ourselves at some point, and she said that she had found an organization called Now I Lay Me Down to Sleep, and they would come take professional photos of us that day, if the worst were to happen. We had only two medicines left to try, and so I asked her to call them in two hours if these two didn't work. I told her that if the worst came, I wanted her to hold him. She promised that she would.

The next two hours came and went with no change, and his oxygenation still decreasing with each hour. The doctors came to us and said they wanted to try one last thing: switching his ventilator. He had been on the oscillating, or jet vent, and they thought that switching him to the normal, gentle vent would help decrease the pressure in his chest.  They did say that there was some arugment between the doctors on whether it would work or not, and asked us what we wanted. We said try it, do anything to help him. Amid arguments from some of the doctors, his ventilator was changed. The thought was that either it would help him, or it would cause him to plummet even more. We all held our breath and waited to see what was going to happen. There was no change, he didn't plummet, but he didn't get any better. We were going to give him an hour and then evaluate our options. The next hour was much of the same, his oxygenation was going down. I remember when it hit 25% I asked our nurse how much lower it could go, she said not much. I covered his feet because they were so cold and blue because there was no oxygen going to them. She said that his body was keeping the oxygen for his major organs, and so his extremities were getting virtually none. My godmother and her son had come back to the hospital to be with us, knowing that we were about to say goodbye to MJ.

Willie and I looked at each other, each afraid of what to say, because there was really only one option left for us. Finally I said, I want to hold my son, I want to hold him. Willie agreed, and we both cried, knowing that it would be our first and last time holding him.

Megan came over to us and asked us what we wanted to do, the time was here, and we had to make a decision. We said we wanted to hold him. I asked her if the rest of my family could come in, as we had all been taking turns throughout the day to be with him. She said yes, that in situations like ours all the rules were thrown out the window. We prepared for everything that was about to come. Megan called Now I Lay Me Down to Sleep, and arranged for the chaplain to baptize Will and MJ. We really wanted them to have that together. I couldn't imagine baptizing MJ, and not Will. It would be the last and first thing they would do together as twins.

The doctors came and confirmed our decision with us. And then the room swarmed with people helping to prepare us to hold MJ. You see, he was on a ventilator, which made it tricky. But then you also had to add in all of the other tubes that he was attached to, which included a drainage tube (from his chest, after his surgery that had not been removed yet), and probably at least twenty different types of medicine. That day, they tried EVERYTHING they could think of to keep him alive. It probably took about 30 minutes to prepare for him to be moved. Right before he was about to be moved, Megan told us that sometimes, when they moved babies as critical as him, it caused them to crash and their heart to stop beating. She asked us what we wanted to do if that happened. Did we want them to put him back on the table, and perform CPR, or did we want them to continue to give him to us and let us hold him. She explained that performing CPR on him would be pure chaos, with an extra 20 or so people in the room, and it would be very traumatic to see how it would happen for us. We told her that we wanted him, we wanted him in our arms, and we wanted to finally hold our son.

We asked for them to take away the paralytic that he was on, in hopes that he would open his eyes for us. He never did, but thought that maybe he would.

I don't think that I will ever forget the moment he was placed in my arms. Tears of joy and sadness rushed down my face. It's really an indescribale feeling, knowing that I was finally holding my son, and the pure joy that I had in my heart, but then the pure devastation knowing that it would be my last. My husband looked at me and smiled, and said, look baby, he pointed to the screen where MJ's vitals were. His oxygenation had shot up to 80%, the best it had been in over 24 hours! He knew that his mother was holding him, finally. I was so happy, I knew, I just knew that MJ knew I was holding him. We took a ton of pictures. Our family of four was finally together for the first and last time, and as sad as it was knowing it was our last, we still were able to find joy in that moment, our final moments with MJ. After awhile Willie whispered to me that he knew we had made the right decision, MJ's heart rate had dropped dramatically, and was going down. At that point we switched and Willie was able to hold MJ for the first and last time. My mom and sister had brought us a change of clothes when they had got to the hospital that day, and so I changed quickly, as I knew the photographer was nearly there. I knew that the pictures we were about to take I would treasure forever, and I did want to be dressed a little nicer then I was.

Just as the photographer got there, we had switched again, and I was holding MJ again. She explained that she herself was a NICU nurse, and she was so sorry that she had to be there. We took more photos, and then the chaplain came and it was time to baptize our twins. Since MJ was dressed in nothing more then a diaper, we did the same for Will. It would be the first and only time that our twins would be photographed dressed alike, and in nothing more then a diaper. The chaplain said a few beautiful words, and then they were both baptized. We spent a few more moments with MJ and we knew that time was nearing for us. Earlier I had asked Megan how MJ would die, how long would it take. She said that he was on so much medicine that it could take a few hours, or a day or so. She said it could be dragged out for a long time, putting us all in much more pain then we wanted. We knew that we didn't want that for MJ. Somehow letting him go sooner was more dignified to me. Letting him go on our terms was better then for him to die slowly. And so we had let the doctors know that we were ready. We had our options they told us, they could take away just the medicine, just the ventilator, or both.

Slowly the took away all of the medicine he was on, except for the pain medicine, we always wanted to make sure that he was never in any pain. It took a good 15 minutes to unhook and cap all of the medicine he had. Then they asked if we were ready for the ventilator to be taken out. We had never seen him without it, but we were ready as we were ever going to be. They took it out, and for the first time in his short life, we were able to see him without a tube stuck down his throat. He was so beautiful and amazing, it brought tears to our eyes. A few minutes later the doctor came to check if his heart was still beating. The room was so quiet, and Willie and I weren't really sure was she was doing. I had thought that as soon as the vent was taken out, he would be gone. But then I realized that it was not the case, and they were checking his heartbeat. A few more minutes after that, she checked again. And she whispered two words to me that will haunt me the rest of my life, I will never forget how they sounded, "MJ's gone." We sobbed, Willie and I, we both lost it, our son was gone, how was that ever possible?

We took a few more photos, and then I asked if my mom wanted to hold him, she kissed him goodbye and gave him back to me, and I gave him to my sister to kiss goodbye. The nurse had offered for us to give him a bath, or spend as much time with him as we wanted to. At first I thought it was something that I would want to do, but then we decided against it. MJ's body was getting cold, and I didn't want to remember him like that. I wanted to remember holding him alive, and feeling his warmth. I remember thinking it was odd that the nurse gave us warm blankets, and then I realized why she did. Looking back, I am glad that we did not bathe him. He had so many tubes coming out of him, and we would have had to work around them, and his body would have gotten colder, I don't really remember any of that, though. I simply remember my perfect little boy, wrapped in warmth, and how he fit so perfect in my arms.

We handed him over to the nurse and said our final goodbyes. Everything after is a blur, we signed some papers, authorized an autopsy, and within an hour we were on our way out. I remember feeling incredibly numb and almost as if I was having an out of body experience as we were leaving the hospital. My son was gone, and now I had to figure out how to live without him.

My Terms?

I feel like lately I have been thinking of my grief as something I want to go through on my terms. I am generally able to get through each day and be very happy with where I am at in this crazy thing called life. MJ is always on my mind, but life is so busy that the acceptance of life without MJ is there. But I do consider this differently than accepting his death.

Basically what I'm saying is that I have accepted my life without my son, but I am not anywhere near accepting all that entails his death. And now that I have put it out there it kinda doesn't make sense. But to me it still does!

Shortly after MJ died my husband and I decided that their birthday was Will's day. It's the only way we could see celebrating it. Will deserves an incredibly happy and love filled day that truly celebrates him.

S, on the boys' birthday a few weeks ago I had to call the pediatrician office to reschedule an appointment for Maci and make one for Will. After I got through the phone call the receptionist said, 'And did you want to make an appointment for Michael today, too?'

And I lost my breathe and barely whispered a 'Um, no'. She said okay and ended the phone call. And I couldn't control the tears. Why, why?! On all days for them to ask me that question. We've been with the same office for four years and never once have they made that mistake. They never even saw MJ- he never came home from the hospital!! But somehow he has a record there and I get asked if I need to make an appointment for him.

I cried for a good 10-15 minutes in front of my newish coworker at my newish job because we share an office. Bless her amazing heart she greatly encouraged me to take the rest of the day off and allow myself to grieve.

But this wasn't my plan. And as stubborn as I am I stayed and finished out the day. I wanted to grieve on my terms. I wanted to tuck my grief and the tears away in a neat little corner I have managed to make for myself and keep it there. I wanted my plan of only celebrating Will on my twins birthday to work.

And once again, like so many other times, I've realized that grief just doesn't care about boundaries or neat little corners to places to manage it. Grief is forever. Grief is a lifetime and it sneaks up on you when you least expect it to. 'My terms' exist only in my mind when the few times it works for me actually happen. Is this part of the acceptance that I haven't yet manifested yet? Maybe. Or is this a new level of grief that I don't even know of. Maybe.

Next week will mark four years since I last held MJ as he took his last breathes. Four years seems like a lifetime and a millisecond all at one. I don't want that anniversary to come, yet I do all in the same time.