When 2009 ended and 2010 came to a start, I remember feeling so devastated that the year that MJ lived and died was ending. It hit me much harder than the holidays, I think mostly because I expected the holidays to be bad, but never expected the start of a new year to be bad. Now, the end of the year and the start of the new one always brings back some of those memories.
It is very hard to believe that 2013 will bring four years since I last held my son. Part of me wishes it was just yesterday and I could jump back into that horrible, smokey grief again. I feel for the most part I am in a really good place, with moments (sometimes lots of moments) of the horrible pain. But that pain makes me feel so close to MJ. For some reason, the worse the pain the more connected I am to MJ. I think that it because I relate the pain to the moment I held him first and last.
I have worked really hard to be where I am at, to be able to provide the emotional stability for Will (MJ's twin) and now Maci. I can truly laugh and I can feel true joy again. There was a time that I never thought that was never going to be possible.
And now a part of me feels guilty that I have been able to move this far forward. Is it too soon? Have I moved forward too fast? Am I betraying MJ by being happy? I think the answer to all of those questions is no, but I guess I can't ever be sure this side of Heaven.
I know I have to let go of the guilt. But part of me feels that I can only push it down for another time, another day when I can really assess my millions of emotions. I feel like I have to. I mean literally right now Will is jumping next to me on the couch and Maci is crawling around on the floor giggling her adorable little head off chasing our dog.
Maci will be one in a few weeks. I am in shock in how fast this year has gone. In a good way. I remember this year. I have beautiful, amazing memories of the first year of my daughter's life. I don't have that with Will- all I can remember is grief. And quite obviously I don't have any memories with MJ beyond 35 days. I have had so many firsts with Maci. A newborn photo shoot at just days old, she never left my side during our entire hospital stay, amazing memories, and an entire year of breastfeeding. I wanted that so badly with my TWINS. I gave up breastfeeding Will at just six months. Emotionally I couldn't handle it anymore. I am so proud that I've been able to get this far. But again, it just reminds me of what I missed out on when MJ was stolen from me way too soon.
I don't think I'll ever really be able to be 'normal' (whatever that is) again. And that, I have accepted. I am okay with who I am because MJ died. But I'm not okay that MJ died. If that makes sense. Sometimes every moment is bittersweet, and that's okay. Other times I absolutely hate the bittersweet and literally want to to burn in hell. Acceptance is a really funny thing. We bereaved mommas work so hard to get it, then we get it and question the hell out of it. I am sure one day I'll get to the point where I have accepted that I accepted who I am, but till that day comes I guess I'll always be who I am,
Sunday, December 30, 2012
When 2009 ended and 2010 came to a start, I remember feeling so devastated that the year that MJ lived and died was ending. It hit me much harder than the holidays, I think mostly because I expected the holidays to be bad, but never expected the start of a new year to be bad. Now, the end of the year and the start of the new one always brings back some of those memories.
Monday, December 10, 2012
If we never experience the chill of a dark
winter, it is very unlikely that we will ever cherish the warmth of a
bright summer’s day. Nothing stimulates our appetite for the simple joys
of life more than the starvation caused by sadness or desperation.
In order to complete our amazing life journey successfully, it is vital
that we turn each and every dark tear into a pearl of wisdom, and find
the blessing in every curse. ― Anthon St. Maarten
This quote truly means so much more then I could ever really say. I've never known that I could feel so low, so dark, and so gutted before becoming a bereaved mother. Since that moment that doctor whispered, 'MJ's gone' in my ear on August 29, 2009 I've had the worst, most terrible feelings and emotions you can imagine.
But I've also had the undeniable thrills of pure and absolute love and joy that can only come with motherhood. Sometimes I think that I'm able to love my children clearer and better because I've said goodbye to one of them. When we chose to take MJ off of life support and let him pass away in our arms, I've never felt more at peace with losing him. It was almost as if God was speaking to me and telling him that MJ could do no more. At times I miss that peace, at times I am angry, at times I am so sad I can't explain it. I wonder how long it will take for me to find the blessing in the curse, as Anthon St. Maarten suggests. Sometimes I feel like I am on that verge, but at times I feel like I am so far away from that thought.
I miss MJ a lot. We were putting up our Christmas tree last weekend and it really got me seeing all of his ornaments. Every year we buy an ornament for him, to remember him by. I love to get one with a Baby Sleeping on the Moon type theme. Every single ornament is beautiful, but just adds to the fact that he's not here. They are tangible things to exhibit he was here; he was alive. But they are also tangible things to say he not here, and he won't ever come home.
This Christmas is Maci's first. It seems like another lifetime that I was pregnant with her. I remember I was so incredibly scared we wouldn't bring her home. I remember our families bought her many Christmas presents, and as I opened them I said a silent prayer I wouldn't have to go through them after another funeral for one of my babies. Her birth brought a lot of healing to my broken heart. I never understood what it was like to simply have a baby and come home. I mean, yes, Will was healthy and left the hospital with us when I was discharged. But we left one hospital to go to another, where we basically lived for 5 weeks until MJ died. I never realized how scarred I was from their birth, the NICU stay, and the surgeries until Maci came. I obviously realized how scarred I was, and still am, from MJ's death. But the aftermath of having a CDH/NICU baby is also an indescribable one.
Along the lines of their birth we are going back to KU Med for the first time since we left with Will to head to Children's Mercy on July 28, 2009. We are hosting a Teddy Bear Drive for MJ's Memories, the division of Project Sweet Peas we started after MJ died. We hoped to have 100 Teddy Bears donated. There are currently about 350 in our MJ's Memories room! So we have decided to donate to as many NICU's as possible with the Teddy Bear donations. Its gonna be hard walking into that hospital and back to the floor I was on bedrest on for two weeks, delivered my boys, and saw one off to Children's Mercy via an emergency transport. I'm nervous walking back into it. But I also believe it will be good for us. It's been over three years since we stepped foot off that hospital. We've been through the worst, and dealt with a lot of its aftermath. Who knows? Maybe we'll even have a little bit of healing going back there to donate Teddy Bears in MJ's name.
Wednesday, December 5, 2012
Lately I have had this feeling more and more that Maci looks like MJ. I don't know why I don't see Will in her eyes. I just see MJ. Her round, cute, adorable, little face reminds me so much of his round, cute, adorable little face. Which doesn't make a whole lot of sense because Will and MJ were identical twins.
Which makes me remember more and more how much I don't remember of Will during his first year.
I wish I didn't have this life. I wish all my children were alive. I've conceived four children. I hold two in my arms. Pretty bad odds if you ask me.
Yesterday I attempted to explain to Will what a twin was and how he has and doesn't have a twin brother at the same time. Conversation #1,893 that sucks.
Sunday, November 4, 2012
It's been almost three and a half years since we said hello and goodbye to MJ over the course of 35 days. Looking back it feels like we simply watched him die over five weeks that summer in 2009. It's hard. Oh. So. Hard.
So many people simply cannot imagine, for that I am thankful there are so few people who really get us, and what we've been through. But then again it is incredibly hard to relay the people we have emerged to become in the wake of intense grief and mourning. I feel alive again. For the first time in a long time, I feel alive. After the birth of Maci I was in a blissful bubble for awhile. I was SO incredibly thankful and amazed she was here, and alive, and healthy. I spent my entire pregnancy with her fearing she'd never live to come home. I planned her funeral in my head many, many times over. Having her here, in my arms and alive was pure bliss for the first six months of her life or so.
Then summer came and the boys' third birthday. For a long time I had decided there would be no birthday party for Will this year. I didn't think I could really handle it. This birthday was so much harder than last. The pain was much more intense this summer. Then the end of August came, and the anniversary of when MJ died. September was a really hard month for me. Willie and I had an incredibly busy summer (Maci had been to California, New York, Chicago, and St. Louis by the time she was 8 months old!) and we needed life to calm down. In the middle of our craziness my grief intensified and by September I had nothing left to give. I shut down and took it out on my husband. Thankfully, I married a pretty awesome guy and he loved me through it. September was our roughest month as a couple. I am so thankful we are on the other side of that. I am leveling off, and my grief it not so intense. I always, always ache for MJ, but not as intensely as I did this summer.
Things are still hard though. No one will ever quite 'get' us. And that is coming through more and more lately. We are whole heartedly different people then we ever thought we would be. We grieve differently then most people do, too I guess. We strive to keep MJ in our daily lives as much as possible. We talk about him, show his pictures to Will and Maci, and make sure he has special days, just like our other children do.
But for some reason that is getting harder and harder to do for MJ. Not for us, but for people around us. It hurts, a lot to realize that his existence is slowly fading. It won't ever fade for me, at least I never plan on it. We were told recently we needed to start moving on, and letting go. I can't and I won't. Its very simple for me. I have three children. I will do everything and anything for each of them. Those people who tell us those things, or who compare our loss to the loss of parents, friends, or other family members hurt us beyond anything they could imagine. Its not the same. I may sound harsh and probably a little jaded. But having my son DIE IN MY ARMS is not, and can never be compared to the loss of a parent, or friend, or aunt, or uncle. I hate that we've been told its the same. I hate that people think they get it when they never even met MJ.
So where am I at? I am happy, for the first time in a long time I am happy. But I also have a broken heart. Will and Maci have helped me heal in ways I could never explain. But I am forever scarred, and MJ is worth that. My son is worth and was worth the pain each and every day. I have found a way to live with it, and yet it still breaks my hear that others think I need to forget. Maybe one day I'll have the strength to say screw 'em and what they think. I'm not there yet. Each and every day I am getting better, healing more, but missing my son more at the same time. That's where I'm at.
Wednesday, October 24, 2012
I've been thinking a lot about the seasons lately and how greatly affected I am by the changing weather. Summer used to be my favorite season, my favorite time of year. And while at times it still is, I also dread it in so many ways. Summer is when Will and MJ were born, and shortly after, MJ died. It's so hard to go through their birthday, and then subsequently MJ's death five weeks later. July and August are really the hardest. But then I remember the anticipation of their birth during that summer three and a half years ago. I was so incredibly excited to become a mother to my twins. I didn't have a clue MJ would die. We knew MJ was going to be born sick, but I truly never thought he would die. I was worried, yes, but the thought of death was largely ignored in my pregnant mind.
The Fall after MJ died was filled with pain and overwhelming grief. We tried to do out best with and for Will. We took him to a pumpkin patch; went out and about with him, and our hearts were beginning to feel again as the numbness wore off. It was both good and bad, as the pain really started to cut, but we were also able to smile and find humor again. I am finding much of the same this Fall. I am beginning to feel like I am in a really good place. I am able to say without hesitation that I am happy. I look back at the past three years and am feeling like we are on the upswing of healing, rather than the downfall of horrid pain. And it amazes me how many times I have thought and felt that. I suppose I always will, as this grief thing is ever changing and will take a lifetime to figure out. I suppose I never will actually figure it out, though. At time I can't believe its been three years, and at times it seems like its been forever.
Spring was a new beginning for us the year after MJ died. We had decided to start trying to have another baby. I stopped breastfeeding, and we waited for my period to come so we could start to try. It didn't come, and we were surprised. I was surprised. I truly thought there was no way we would have to go through fertility treatments again after all we'd been through. I was wrong, very wrong. For some reason I just thought there was no way we'd be exposed to so much pain again. We were. But we were still healing. And then summer came.
That summer we were starting to come on the first year birthday for Will, and MJ's first anniversary. It hurt and was harder to go through then I ever thought. I felt that year as though I was reliving each and every moment again, with each day passing. I think I was numb on Will's birthday. We made that day all about him, and you'd never know from the pictures. Their birthday has to be about Will. It is the only way to do it in our minds, so July 25 is always a happy birthday that celebrates Will. But I cannot lie. Those early morning moments when I think about how we should have two little boys to celebrate hurt. A lot. The pain sears right to my core time and time again that day. And those horrible days in between July 25 and August 29 are just as worse. I think of it as my 'limbo' period. Those 5 short weeks that MJ was once alive, and then it all crashes down on August 29.
Then the seasons change and our hearts feel better. Fall seems as if it is a new beginning, and we start to feel better again, maybe better than the year before.
It's amazing how each year, each season can have such an effect on my grieving heart. Alas, this is my life, and slowly I am getting used to the changing emotions that come as the leaves fall, snow comes, buds emerge, or the sun brightens.
Friday, September 28, 2012
Will fell at daycare yesterday and broke his arm. My lovely little boy broke it so bad he needed two pins to put the bones back in place, which required surgery to do so. Today was the fifth time I have handed over one of my children to a surgeon. MJ had 3, and this was Will's 2nd. It all happened so fast I didn't have a whole lot of time to think about it all, which I am thankful for. It was a lot easier to go on autopilot 'mom mode' and get him in to urgent care, the orthopedic surgeon, and then the hospital for surgery.
It really hit me today when they started to give him medicine to relax and calm him before they took him away for surgery. He was given versed to help relax and make him quite loopy. The nurse was explaining what versed was. I wanted to say, 'I already know what it is, his twin was doped up with it basically his entire life'. But I didn't. It wasn't worth it to me to bring up all the old feelings that were flashing through my mind. Then she put a pulse-ox on him and explained what that was. Again, I wanted to say, 'Yeah I am fully aware of what that is, it is one of the few momentos I have from his brother after he died, and it is currently sitting in a shadow box in my room, next to his ashes.' I hate that a 'normal' (whatever that is) parent would need to know what that is. Not this momma; not a NICU momma. As they were about to wheel him away my eyes got really teary, but then the versed made him so loopy it was so funny it lightened the mood up for both of us quickly.
Then after his surgery, when they woke him up, he had an IV and the machines were beeping measuring his oxygen level. Those sounds brought SO.MUCH.BACK. I remember staring at those machines begging God to let MJ's oxygen levels come back up. Will was statting at about 98-99% oxygen. I'm not sure if I ever remember MJ statting that high. His goal was 92% or better. The lowest it got was 17%, and that was when we decided to take him off the machines. At that point the nurses turned the monitors away so we couldn't see them. I am thankful I don't have a memory of 0% on that screen.
I swear this better be the last surgery for my children for many, many years. My heart won't be able to take it for a long time.
Friday, September 21, 2012
Tonight I am going to pack the kids in the car and make a drive to Kansas City for a CDH fundraiser another wonderful CDH family is putting on to raise awareness/funds for research. I love going to these types of events. It makes me feel closer to MJ because I am doing something for him, and something because of him. There will be four other CDH families there tonight. We will be the odd ones out because we are the only family whose child did not survive. The only family to say goodbye.
I won't lie it is going to be hard to go there tonight knowing this. Several people have asked me why I even want to go. The answer is simple to me. MJ is my son. The only way I can parent him is to parent his memory by speaking of him, talking of him, and letting people know that he lived. I'll probably cry. Or if I don't I know I'll cry the whole way home. Willie has a football game tonight (he coaches high school) so he won't be able to come. Thank goodness the kids should both sleep on the way home so I'll be able to get my cry in.
A few months ago Children's Mercy Hospital asked Willie and I to be on the NICU Family Staff Adivsory Board. We were thrilled and said yes to such an amazing honor. I was really looking forward to being part of something that can help so many families. And then we went to our first meeting and realized we were the only people who had lost a child there. Again I just feel like the odd one out when we go. No one really has made us feel that by saying or doing anything. I think maybe I just feel that way because there are so many references to things I have never been through. We will be working with the March of Dimes and to build a better NICU and we were given a list of modules to focus on. We were to pick two modules and start from there. Last meeting we picked our modules and we picked Kangaroo Care and Transistion to Home. I have no experience with either of those things. The only time we held MJ was the day he died, and quite obviously we never brought him home. I am worried we will have nothing to contribute. I am worried people wonder why we are there because we don't have any experience in the modules we chose. The other families and staff are so nice and I am probably just reading into things. But I really feel like we'll be sitting at the meetings with nothing to contribute because we've never done either of the things we are focusing on. And while I really am so happy the other families all brought their babies home, it just reminds me that we didn't get our miracle. I'm not quite sure I will be very useful to the group. I want to give it a few more meetings (we only meet once a month) and see out it goes, but at the same time I am doubtful.
We are thrown so much into feeling like an 'odd one out' so to say in every day life, that I am not sure how much more I want to expose myself to. I want to do these things, I want to contribute to CDH awareness and CMH to make things better for other NICU families. But I its also hard at the same time. I wish I knew more people who have had similiar experiences as us, but we don't. Or we do and they are mostly my online friends. One of my best friends is another CDH momma I met online. They lives in New Orleans and I've been down there twice to see her. I talk to her almost every day, and we always talk about how if either of us wins the lotto, we are buying the other a house next door to the other. Obviously she lost her son to CDH, as well. We are planning a family vacation with them in June to Texas and I can't wait. They also have a daughter that was born a few weeks before the boys (her son, Drake, would be four), so we have a lot in common.
I'd love to have more people like her in my life so I don't feel so 'odd' all the time. But this is all the entails when your child dies before you. This is our life and no matter how much I want to bring MJ back, I can't. And it sucks. A lot. I always think that someday I'll figure it out, but I don't think that will happen on this side of Heaven.
Wednesday, August 29, 2012
I can't quite believe its been three years since we had to choose 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. MJ's little sister Maci has brought new life and new hope into our lives. But three years ago today when my heart shattered and piece went with MJ when he died. 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 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 turning into a color mixed 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 goes 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 feed 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 hearbeat 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 obivously 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 Wendy's. I remember it tasting bland and not good. 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 broughts 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 autopsey, 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.
Saturday, August 25, 2012
I can't believe its been almost three years since I held him for the very first and very last time. This year is much harder than last. I'm not quite sure why, but the pain that makes me want to double over and sob has frequented me many times the past few weeks.
So many, many moments lately I have been thinking about life with twin three year olds and a seven month old baby girl. But that is not my life. I just can't seem to fathom how it would be if MJ lived. And that really breaks my heart.
Three years. It seems so long and so short all at the same time. There's nothing I wouldn't give to go back, even for just one day, one moment to see him again. My mind is quite messed up lately it seems. It seems so 'normal' to me to have a son who died. And at the same time, the concept seems to strange. All at the same time. I think I will forever feel this tormented. Nothing will ever seem quite perfect ever again. I am okay with that. I am okay with missing MJ for the rest of my life.
I just wish I could have a few moments every now and again when the pain is almost too much to bare to have him again. It would make it all seem so much easier. Though I know it will never be. . .
Wednesday, July 25, 2012
Three years. I can’t quite believe that it has been three years since my beautiful boys were born. Three years since I ‘officially’ became a mother to twins. I look back at those pictures and my heart aches because it seems so far away. Like I am trying to grasp and hold onto the moments but they fall through my fingers like sand at times. I have the memories, and those seem to never fade. Sometimes it feels like I can remember each and every moment of those 35 days. But the emotions and the feelings of those moments and the feeling as though I am a mother of twins are fading. I remember being scared. I remember being happy. I remember the ache of wanting to have both of my boys at home with me. But those are fading.
And those are the feelings and emotions that I feel connect me more with MJ. I long for him so much. But more and more it feels as though I am long for a memory instead of my son, if that makes sense. I look at Will and see him so happy and connected and well, three years old today. And I can’t imagine how it would be to have twins. I can’t imagine the relationship Will and MJ would have. I can’t imagine the emotion of watching my twins grow up. I can only see Will. I used to see Will and MJ and it would tear me apart to see a ghost right next to Will. So in ways I am glad I don’t see that any more. It’s not fair to Will to see him as two. I can’t let MJ’s ghost follow him around in my mind all day. But now it makes me miss MJ so much more, because I don’t see him in Will as much as I used to. The concept of being a mother to twins is becoming further and further away from. We have met so many new people in the three years since we’ve had our boys. Some of these new people don’t even know of MJ, as they are only acquaintances. The teachers at Will’s daycare, only a few of them know. And really, for Will’s sake, I think that is how it should be. I never, ever want my grief and my own feelings and aching for MJ to affect Will. I want Will to know how much he is special and unique and was an answer to my prayers and how much he is loved as an individual.
But that is so hard to do some days because the aching and longing for MJ seems to grow as time passes. Every day, every picture, every moment with my family I know that MJ is always missing. I am so incredibly lucky to have amazing parents, sisters, and inlaws who will never allow for MJ to be forgotten. My sister talked about MJ at her wedding and how much she missed him to everyone there during her thank you speech. My inlaws remember MJ every day. My parents put on a fundraiser for MJ’s Memories every year. Those moments and so many more help to ease our pain. But it will never go away, we will always ache for him. Our family picture will never be complete. And the tears will always flow. I’d give anything to go back and relive one more day with MJ. To touch his skin and kiss his face. Hold him and love him. One day would get me through the hard days so much better then what I have now. I never thought he would die, until he actually did. I never tried to imprint the moment in my brain until I was holding him for the first and last time. Some of those memories are cloudy and I hate the cloudiness. I want them to be clear and fresh in my mind. I’d really like to wake up and be back at the hospital and in those moments. Quite honestly I would really just like my son back.
Some day I will see him again, but right now that seems so far away. Three years, I really just can’t believe its been three years.
Sunday, July 8, 2012
I really cannot believe that its been almost three years since our boys were born. Will has turned into quite an amazing little boy. As always, and lately even more, I am missing MJ. This year seems to be harder than the last one. Their first birthday I am pretty sure I was still numb, although I didn't think so at the time. Last year I was pregnant with our baby girl Maci (who was born healthy! in January), and I think I was so scared those nine months I couldn't really think about anything else. This year sometimes it feels like its hit me full force in the face that one of my twins is gone.
We were gonna throw a big kid party for Will this year, but emotionally I just can't do it. So instead of a big party I think we are just gonna have a small BBQ at our house, like in the year's past, but not as big, I just can't do it this year.
It has been incredibly way too long since I have blogged. SO MUCH has happened. As I mentioned earlier my beautiful baby girl Maci Jayne was born on January 13, 2012. She was a whopping 9 lbs 5 oz and 21 inches long. She was everything I could have imagined and more. Her pregnancy and birth were so peaceful, just like it should be. I didn't know how much I needed her until she was here. I feel as though I am truly able to love wholely again. I feel like we've come full circle in the aspect that we are able to move forward in our lives and give to our kids what we've always wanted. As almost six months she is rolling over both ways, a big baby girl and just so incredibly full of love. Will is an amazing big brother. He loves her so much, sometimes its heart wrenching to see. I wish I could see him with MJ, and see how two little boys would love their sister so much.
Will is starting to understand that MJ is his twin, a brother who should be here, but is not. This is new territory for us and one that I am not quite ready for. A few weeks ago he was crying and told me he was sad because MJ was not here and he missed him very much. We are bringing him to a grief support meeting at Children's Mercy in two weeks for siblings. They start them at age 3 and its really perfect timing.
Each day, every moment I miss MJ more. I didn't think it was possible to miss him more each day, but that is how life is. I am learning to live without him. Each day and each experience is something new, and another moment without him.
When Maci was just two months old we bought a house. We left our townhouse that we were supposed to bring our twins home to. That was hard leaving, but this new house is so wonderful for us. We are really happy here. Our hearts and arms are almost full. One little boy will always be missing.