Wednesday, August 28, 2013

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.

Friday, August 23, 2013

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.

Friday, July 26, 2013

I Will Always Remember

Happy Birthday to my sweet boys (one day late here, because yesterday was a super busy day). I can't believe it's been four years since that dreadful c-section. I wrote the follow several weeks ago, but just haven't posted it yet. I actually submitted it to Still Standing but never heard from them so I am assuming they did not choose it for posting, which I am fine with. I suppose I should just let it all out here instead of there.

I remember the sound of my sobs after they told me my son’s heart had stopped beating. It felt like an out of body experience, almost as though I was floating away from reality because the pain was so deep. 

I remember going to the funeral home to sign paperwork and fighting the urge to run and find his body. Later I realized that since we chose cremation he wasn’t there, but at the time it took all I had to leave him for what I thought was the second time. 

I remember praying with my husband for God to heal our son. We slept in the NICU night after night and held each other as we cried and prayed for a miracle. 

I remember it all. 

But even more than that, I remember seeing his face for the very first time. His frail little body was hooked up to a ventilator and he looked exactly like his healthy twin brother, and I fell in love instantly. I reached through the incubator and touched his leg and he stole a piece of my heart he always has with him. 

I remember when he first opened his eyes what it felt like to know that he knew what his momma looked like. Later that day I got to change his diaper for the first, and only time. He peed on me. Twice. 

I remember when he had a silent baby fit only NICU mommas can understand. I held his hands and sang to him and he opened his big blue eyes and looked at me memorized and stopped fussing. He knew his momma, and it that moment our bond was unbreakable. 

I remember when they placed him in my arms for the first time. It was just hours before he died, and in a strange way life was as it should have been for a few moments. My son was in my arms, exactly where he should have been every day the previous five weeks. 

Every day, every moment, I carry the moments with me. I remember the perfectness that was my son, and the horridness that encases his death. I am his momma, and he is my son. 

And until I see him again and form new memories in Heaven, I will remember.

Wednesday, July 10, 2013

A Million Thoughts

July is always a hard month for me. Normally I just get so stressed and crazy that I completely break down before I realize it.

This year, I am eating my way through the month. When I have so many things going through my mind I snack. And snack. And snack. I am trying so hard to maintain the weight I've lost, and keep losing weight. Right now it just feels hopeless. And just now I am sitting on my couch trying to figure it out, and then it hit me.

It's July. The boys birthday is coming up. And instead of planning a birthday party for twins, its a party for one. And so all I want to do is eat an entire bag of chips. But tonight I won't.

We typically plan for Will's party in August so it gives us a little reprieve from their birthday month, but now I am in planning mode and going over and over what it should be. Who we should invite, and if anyone will come. My guess is it will be a small party, with just a few friends we have. We don't have any family that live within 3 states of us, so that always sucks. My parents do always come in for Will's party and that's awesome to have them. But very few other people. We've made a lot of friends through the years, which is really nice, but it will still be a small party I think.

And I have no idea where to have it. I really want it at the zoo, but Will keeps saying he wants it at a local kids indoor play gym/arcade place. All I can really think about it where would MJ want it at, but I'll never know.

Today I was driving and wondered if anyone ever thinks of my as a mother of three. Anyone who we hang out knows MJ. His pictures are up in our house, and we talk about him freely. But I wonder, when I am thought of (if I'm ever thought of) if people think Megan: mother of three. Or if they just think Megan: mother of two. It really bothers me that I don't that answer.

I have made one good friend within the last six months and she is amazing. Almost every time I see her, she makes a point to say something about MJ. She even flew all the way to Chicago to go to our annual walk for MJ's Memories. She called me to ask if she could put MJ on her finger nails when she got them manicured. I wish more people were like her, and weren't scared of talking about him or asking me about him. I wish society was more accepting like her. She's a great friend, and I am really lucky to have her.

Fifteen days and my boys will be four. Fifteen days and we'll celebrate with only one of them.

I miss you even more every day MJ.

Thursday, June 20, 2013

Catching Up

It's been awhile since I've written anything. Lots of changes have happened, and all of them have generally been good.  A few months ago I got head hunted by a company and while that opportunity didn't work out, I did throw out my resume at a few places to see if anything would happen. In doing so, I got an interview and decided to make the blog private while I was going through the process. I really waivered on that decision. Part of me felt as if someone Googled me and made a decision about my work capabilities from a blog that I write about my grief, then I wouldn't want to work for them anyway. The other part of me thought that this part of my life is my private soul, and while it is an open blog, I am not even sure if anyone reads it any more. It's mainly for me. Or other grieving mommas to find and know that someday, somehow they can come out of the horrible trenches of grief and learn how to live again. I needed those blogs when I was in the trenches, I needed those women who could breathe again without the physical pain of grief. So that's why I keep it open, and that's why I had it private for a bit.

So I've been through the interview process, accepted the job, and I started this passed Monday. I am working with Medicare patients on how to better manage their own health care. I don't have a medical background, but I am super excited about the job. I already know I am going to love it. This week I have had a lot of one on ones with my new team members and learned about them and their jobs and they learned all about me. Basically it's been quite a few meetings of 'how do I break the news that I have a son that died' for me. Or do I even break it? It came up with about half my team, and other team meetings just revolved around work. I have to say that I hate this part of meeting people. I hate going through it all, the questioning in my mind, and worried if I am going to cry. I hate this part of the new life we've got without MJ.

It's almost July and that means another birthday for my boys only celebrating with one of them. My hubby asked me about party planning the other day and a big part of me just totally dreads it. While pregnant that was my worst fear- planning a birthday party for only one of my twins. Every year that nightmare just comes true and I typically do a party a few weekends after their birthday. Last year I broke down in sobs in my office. Luckily my office partner was amazing and just hugged me while I cried for a bit. My new office partner is knows about MJ, but I don't think I'll have that relationship with someone in such short of time. So I am nervous for their birthday. I won't be taking the day off, because I am taking the day that MJ died off, and my first 90 days I am not supposed to take any time off, unless I tell them ahead of being hired, and I really wanted to ask for minimal days off.

I can't believe its been almost four years. With July coming up, and so many reminders of where we were four years ago, this momma's heart is hurting. No matter the time, no matter how many years, weeks, days, or months it has been. I miss my son. I ache for my son, and grief, at times, is so overwhelming.

Wednesday, April 10, 2013

The Twin Thing

I've been having a hard time lately with the twin thing. For some reason it's been thrown in my face a lot, lately. Mostly inadverntly in ways that shouldn't really bother me, but they do. A lot. I don't know why I didn't get to keep both of my twins and I just hate it. Will is SO amazing and I swear I love that kid more each day, which doesn't seem possible today, but tomorrow it will.

Why didn't I get to keep both? Why didn't I get my miracle? Why can't I be the one shouting out praise for the Lord's miracles? I am angry and bitter today. I hate this feeling. I don't want to feel like this, I don't want to only have a taste of what its like to have twins.

And that taste was so sweet, and so amazing. I want it back. I want him back. I want them both. I feel like I am a little kid kicking and screaming today because I just want. them. both.

WHY WHY WHY WHY did he have to die?

Monday, April 1, 2013

MJ's Video

I've once again updated the video I made for MJ. Here it is in case anyone wants to see it.

Saturday, March 30, 2013

CDH Awareness Day

Tomorrow we wear Turquoise. It is Congenital Diaphragmatic Hernia (CDH) Awareness Day. MJ was born with CDH. In case you are not aware, CDH occurs when the diaphragm does not fully form, leaving a hole in the muscle that is supposed to seperate the stomach organs from the chest cavity. Due to this hole, the stomach organs then migrate and grow in the chest cavitity, and severely hinder lung and heart development. Here is a diagram to visually explain.

You can see that the left lung is underdeveloped squished due to the organs being in the chest cavity. (This picture also links to further details on CDH).

If you can, please wear turquoise tomorrow. I know its Easter Sunday, but just a little bit would mean a lot! To me, CDH Awareness Day is a day for MJ. To celebrate and remember his life. To be honest, it is kind of similar to his birthday to Willie and I. Mostly because since MJ is a twin, their birthday has to be for Will. It's just not fair to Will to treat it any other way.

July 25, 2009 I delivered two amazing sons. But we only celebrate with one, because it is not fair to let Will's birthday be marred with sadness because MJ isn't there. Don't get me wrong, in the quiet of the morning and the still of the night, I weep. But that day, and that party I smile and celebrate Will's life. So March 31 is a day for MJ. Along with August 29, the day MJ died. And October 15, Pregnancy and Infant Loss Awareness Day. He deserves some special days, too- you know?

MJ lived for 35 days, so I think that three days out of the year that are 'his' are more than okay. I know my baby loss mommas get this. And I sadly know that sometimes not even family try to understand. So to honor and remember my amazing little boy who fought harder and braver than I thought possible, I WEAR TURQUOISE.

Monday, March 18, 2013

But I Want Them All

Today we decided to spend the day and night at CoCo Keys Water Resort in Kansas City. Willie is going out of town next week and so we wanted to do something fun with the kids, because this will be the longest they have gone without seeing him every day. (I have no idea how you military families do it!)

About half way through our first day we were sitting in the kiddie pool and look to our left to see the cutest set of twins in matching swim suits. As I always do when I see twins I immediately started to think about how I should be thankful for what I have, instead of dwell on what I don't. I was holding Maci and thinking about how hard it was to conceive her, and that she probably wouldn't be here if MJ lived.

And then I thought why am I trying to convince myself of this foolishness? I WANT them ALL I have carried four children in my womb, prayed for four children, bonded and loved deeply four children. I hold two of them in my arms today. Pretty shitty odds if you ask me. I want them all. MJ died in my arms almost four years ago. I miscarried a baby in January 2011. Why can't I have them all?

So many people, people who don't deserve the wonderful amazing children they are blessed with, don't care. And us, we'd do anything for our kids. We prayed and prayed and asked God to let us switch places with MJ. And at 35 days he slipped away and there was nothing we could do. I want them all, I don't want only half.

Friday, March 8, 2013

Sometimes I See Double

(I submitted this post to Still Standing and it was published on March 5, 2013, head here to see the original posting.)

Sometimes I still see double. It’s been almost four years since I held my twin sons in my arms for the first and the very last time. Will was born, and still is perfectly healthy. MJ fought a battle with a congenital diaphragmatic hernia (CDH) for 35 days before we were given the choice to let him die on an operating table or in our arms. We held him and we got one moment, which lasted a few hours to feel the weight of two infants in our arms.

The first year I swear I saw two babies every time I looked at Will. Very slowly MJ’s ghost seemed to fade from my mind as Will got older. The more time that passed the more we became parents to one living child and less parents of twins in which one died. We met new people and did new things and were completely focused on giving Will the childhood we longed to give two little boys.

We sacrificed a lot those first few years. Someone once told us that we had to ‘fake it till we would make it’. Somewhere around year three we started feeling like we were making it instead of faking it. Will, and now Maci Jayne- our rainbow baby, lack for nothing. They are spoiled in a way that only living children of bereaved parents can be.

Now Will is starting to understand and grasp that he is a twin to a brother he can only see in pictures. He likes to look at them and ask questions that we don’t have answers to. His eyes get so big and sad when he asks ‘Why is MJ in the sky? I want to see him.’ Those are questions that won’t ever be answered this side of Heaven.

I wonder if we are doing it right. I wonder if we talk too much about MJ, or if we talk too little about him. I wonder if we are exposing him to a side of life that is far beyond his little minds comprehension. Especially when he asks if the zoo’s pregnant orangutan’s baby will go fly in the sky like MJ.

I suppose we can only do the best that we can, but really- what is the best that we can? Will and Maci seem happy. They laugh a lot and are both further socially and academically than where guidelines suggest they should be. So I suppose however we are doing it is working.

But I still sometimes see double when I look at Will. When he’s brushing his teeth, or running up the stairs, or when I kiss him goodnight I wonder how it would be to kiss two little heads in two little beds like I dreamed the moment the doctor said ‘Its twins!’ And the more Will asks questions the more I wonder what it could be like if he lived, and the more I long for what my mind sometimes tricks me into seeing.


I've seen so many signs from MJ today, too many to be a coincidence. First, I save MyCokeRewards points, and today I was plugging in my points to the reader. I've been saving them for almost a  year and only have come across two or three that have 'MJ' as part of the number/letter sequence. Today I came across two back to back. I save each one that has the 'MJ' sequence, I'm not sure why, but I just love seeing those two letters so I save them whenever I see them.

Earlier this week I got the mail and we got a flier from 'MJ's Auto Body'. I've never heard of this place and apparently they've been in Topeka for quite some time. Totally makes me want to take my car there!

And today I was shopping for items on my lunch break for MJ's Memories. We are getting ready to donate our 1,000 care package to NICU families in MJ's honor, and the song 'One More Day With You' came on the radio. I totally broke crying.

These little things are just too much too close to be random. I know it has to be my boy sending me his love. It's almost been four years since we've said hello and goodbye 35 days later. The end of this month is March 31 and CDH Awareness Day. March 31 kinda begins the 'hard time' of the year for me and it ends with the day he died, August 29. So many memories and flashbacks happen during this time for me. Four  years, its too long to comprehend at times.

Saturday, February 2, 2013

Who We Are Today

I've got so much to say, but then again so little to say, as well. Today we took the kids (Will and Maci) to the indoor water park in Kansas City. It was so much fun. So much so that I actually felt guilty for feeling like that. It's been a long time since I've felt guilty for feeling happy. I generally am able to avoid this. But lately its been a different type of happy. The kind of happy that I feel like dreamed of when I found out I was going to become a mother. I love, love, love seeing Will and Maci's faces light up. I love providing the type of childhood that they will remember with fond, happy, and loving memories.

So why do I feel guilty? Is it because I never thought I'd be here after MJ died? Or is it because I swore I'd never be here after MJ died? We were at the water park today and I was trying to imagine what it'd be like with MJ, too. And I couldn't really imagine it. I have no idea what raising twins would be like, yet at the same time I am a mother of twins. I have no idea how different life would be with MJ. Would we live where we live now? Would we have Maci? That's almost a question I can't ask myself. I needed Maci. I needed Maci more than I ever could have thought. If we never have another baby I'm okay with that. And that's only because of the joy and Maci has brought us. I'd like another baby, but I no longer need another baby like I needed Maci.

Our lives revolve around Will and Maci. Their needs, their wants, they are our everything. I guess maybe I am accepting that MJ isn't part of our life in that way anymore? For this reason I am so thankful for MJ's Memories. Without that MJ would really not be a huge part of our life. We are able to keep him in our life through the good we do in his name. Next month or two we'll have donated over 1,000 care packages and memory boxes to NICU families. And its all because of him and the impact he made on our life. We talk/think about MJ's Memories pretty much daily- and that allows us to say him name daily.

This year I'm thinking that I want to have a cake again on his Angel Day. I guess I need to see a cake with him name on it. I'm not sure why I need/want that, but I do. Maybe because their birthday is all about Will. It is not fair to Will to share his birthday with MJ, and so we've chosen to have that day be Will's only. And because of that we'll never have a cake that says 'Happy Birthday in Heaven MJ'. So we can have a cake on his Angel Day. And celebrate his life. All 35 days of it.

So today, who we are is quite different that who we'd ever thought we'd be back on December 8, 2008- the day we found out we were pregnant. And vastly different than who we'd thought we be on January 8, 2009- the day we found out we were having twins. We are raising a twinless twin and a rainbow baby girl. And forever missing our angel in Heaven. But really, all three are involved in our daily lives and shape our days. I love them. I miss him. My children are my world, in three very unique ways.

Thursday, January 17, 2013

Fast Forward with the Topeka Chamber

Hello! If you have found your way here via the Fast Forward Topeka Chamber group welcome! We are very excited to be part of the January Inspire Series and look forward to seeing everyone on the 24. Since 2009 we have donated over 900 care packages and memory boxes to families with a baby in the intensive care units. I invite you to find us on Facebook here, or check out our webpage with Project Sweet Peas- our parent organization here.

In July 2009 our family welcomed our identical twin boys, named William Glen and Michael Joseph 'MJ'. MJ was born with a congenital diaphragmatic hernia, or CDH. This occurs when the diaphragm does not fully form, which allows the stomach organs to migrate and grow in the chest cavitity. This severely hinders lung and heart development. MJ fought through three surgeries and held on for 35 days before he passed away in my arms peacefully on August 29, 2009. Shortly after his death, we found Project Sweet Peas and started a division in his memory. We are very thankful for the amazing support of Fast Forward and the Topeka community!