tag:blogger.com,1999:blog-32056724289371692202024-03-13T12:26:03.655-07:00MJ's MemoriesLiving Without and Honoring Our Son MJMeganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.comBlogger148125tag:blogger.com,1999:blog-3205672428937169220.post-18732035498154984372013-08-28T22:04:00.000-07:002013-08-28T22:04:03.434-07:00Four Years AgoWell 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 . . .<br />
<br />
<i>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!" <br />
<br />
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.
<br />
<br />
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." <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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? <br />
<br />
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. <br />
<br />
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. </i>Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-42684243864046271682013-08-23T21:39:00.001-07:002013-08-23T21:39:36.798-07:00My 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.<br />
<br />
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!<br />
<br />
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.<br />
<br />
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?'<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-39274117518424713472013-07-26T18:03:00.001-07:002013-07-26T18:03:14.619-07:00I Will Always RememberHappy 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. <br />
<br />
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2382">
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. </div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2382">
<br /></div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2385">
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. </div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2385">
<br /></div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2386">
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. </div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2386">
<br /></div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2387">
I remember it all. </div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2387">
<br /></div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2388">
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. </div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2388">
<br /></div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2389">
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. </div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2389">
<br /></div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2390">
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. </div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2390">
<br /></div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2391">
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. </div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2391">
<br /></div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2392">
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. </div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2392">
<br /></div>
<div class="yiv1535942172MsoNormal" id="yui_3_7_2_1_1374886796496_2392">
And until I see him again and form new
memories in Heaven, I
will remember. </div>
Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-30362276460878325382013-07-10T19:50:00.001-07:002013-07-10T19:50:38.755-07:00A Million ThoughtsJuly is always a hard month for me. Normally I just get so stressed and crazy that I completely break down before I realize it.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Fifteen days and my boys will be four. Fifteen days and we'll celebrate with only one of them.<br />
<br />
I miss you even more every day MJ. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-2243577583232750122013-06-20T20:08:00.000-07:002013-06-20T20:08:22.956-07:00Catching UpIt'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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-35833007134391218342013-04-10T17:41:00.000-07:002013-04-10T17:41:07.423-07:00The Twin ThingI'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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
WHY WHY WHY WHY did he have to die?Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-16271424766487958292013-04-01T18:55:00.001-07:002013-04-01T18:55:53.693-07:00MJ's VideoI've once again updated the video I made for MJ. Here it is in case anyone wants to see it.<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/w-YwlaBe63s" width="560"></iframe><br />
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http://www.youtube.com/watch?v=w-YwlaBe63s&feature=youtu.beMeganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-75673544148779470372013-03-30T06:02:00.002-07:002013-03-30T06:02:24.630-07:00CDH Awareness DayTomorrow 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.<br />
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<img border="0" height="320" src="http://2.bp.blogspot.com/-rvkUpeh0rNo/UVbfbDVAywI/AAAAAAAAAio/ydqq2mPuM5I/s320/CDH-Pre-01.png" width="320" /></div>
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).<br />
<br />
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.<br />
<br />
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?<br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-1174104666674967502013-03-18T12:26:00.002-07:002013-03-18T12:26:38.662-07:00But I Want Them AllToday 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!)<br />
<br />
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.<br />
<br />
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?<br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-40603888865666697762013-03-08T20:49:00.005-08:002013-03-08T20:49:48.567-08:00Sometimes I See Double<i>(I submitted this post to Still Standing and it was published on March 5, 2013, head <a href="http://stillstandingmag.com/2013/03/sometimes-i-see-double/" target="_blank">here</a> to see the original posting.)</i><br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-52631227404569430432013-03-08T20:40:00.001-08:002013-03-08T20:40:50.493-08:00SignsI'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.<br />
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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!<br />
<br />
And today I was shopping for items on my lunch break for <a href="http://www.facebook.com/mjsmemories" target="_blank">MJ's Memories</a>. 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.<br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-25625825610559806172013-02-02T15:43:00.000-08:002013-02-02T15:43:22.865-08:00Who We Are TodayI'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.<br />
<br />
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 <i>need</i> another baby like I needed Maci. <br />
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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 <a href="http://www.facebook.com/mjsmemories" target="_blank">MJ's Memories</a>. 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.<br />
<br />
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. <br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com2tag:blogger.com,1999:blog-3205672428937169220.post-70706008162480747522013-01-17T14:17:00.001-08:002013-01-17T14:17:40.902-08:00Fast Forward with the Topeka ChamberHello! 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 <a href="http://www.facebook.com/mjsmemories" target="_blank">here</a>, or check out our webpage with Project Sweet Peas- our parent organization <a href="http://www.projectsweetpeas.com/" target="_blank">here</a>. <br />
<br />
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!Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-13613313493911088442012-12-30T12:11:00.002-08:002012-12-30T12:11:51.855-08:00The End of Another YearWhen 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.<br />
<br />
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.<br />
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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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
Maci will be one in a few weeks. I am in shock in how fast this year has gone. In a good way. <i>I remember this year</i>. 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.<br />
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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,<br />
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<br />Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com1tag:blogger.com,1999:blog-3205672428937169220.post-59376122304865351702012-12-10T14:11:00.001-08:002012-12-10T14:12:04.961-08:00Christmas 2012<i>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</i><i> 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</i><br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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 <a href="http://www.facebook.com/mjsmemories" target="_blank">MJ's Memories</a>, the division of <a href="http://www.projectsweetpeas.com/" target="_blank">Project Sweet Peas</a> 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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-5861713288851491192012-12-05T19:19:00.000-08:002012-12-05T19:19:04.617-08:00Lately 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.<br />
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Which makes me remember more and more how much I don't remember of Will during his first year.<br />
<br />
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.<br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-69589438960571425302012-11-04T15:12:00.001-08:002012-11-04T15:12:57.834-08:00Where I'm AtIt'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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-13844135647393703082012-10-24T07:55:00.002-07:002012-10-24T07:55:49.419-07:00SeasonsI'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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-20069482082766808792012-09-28T11:58:00.001-07:002012-09-28T11:58:10.849-07:00SurgeryWill 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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com1tag:blogger.com,1999:blog-3205672428937169220.post-54262950966808295062012-09-21T12:20:00.003-07:002012-09-21T12:20:23.768-07:00Odd One OutTonight 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. <br />
<br />
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 <em>he</em> <em>lived</em>. 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. <br />
<br />
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 <em>so many</em> 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. <br />
<br />
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. <br />
<br />
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. Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-56076654198093130422012-08-29T05:51:00.001-07:002012-08-29T05:51:10.603-07:00Three Years AgoI 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 . . .<br />
<br />
<i>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!" <br />
<br />
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.
<br />
<br />
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." <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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? <br />
<br />
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. <br />
<br />
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. </i>Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-78047369520944733512012-08-25T22:21:00.002-07:002012-08-25T22:21:58.355-07:00ThreeI 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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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. . .Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-33999634699711216032012-07-25T08:26:00.000-07:002012-07-25T08:26:22.683-07:00Three Years.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. <br />
<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-30077291673311689072012-07-08T13:59:00.001-07:002012-07-08T13:59:39.464-07:00Almost Three YearsI 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com0tag:blogger.com,1999:blog-3205672428937169220.post-1985190749645914962011-10-15T14:37:00.000-07:002011-10-15T14:38:31.606-07:00A Few Much Needed UpdatesSo it's been FOREVER since I've blogged. Not that I haven't wanted to, just that there's been so much going on that I've not really known how to include it in this blog. I've always considered this blog MJ's, so to write about anything else just felt out of place.<br />
<br />
So here's whats been going on since I last updated about me. We miscarried in late January/beginning of February. It was the miscarriage that wouldn't end, and I had to have a D&C. It was <i><b>horrible</b></i>. Painful, both emotionally and physically. We gave it the mandatory two cycles until we started trying again. (Although I will admit, we tried, just without any fertility medicine help.) Our first cycle back, we did IUI again. We found out that indeed we were pregnant, the IUI worked, on Friday the 13th of May. I laughed. I couldn't believe that after all we had been through, our first cycle back we conceived again. Two weeks later was our big ultrasound (the same ultrasound that last time there was no heartbeat). I expected to see more of the same, but this time it was different. There was one beautiful heartbeat on the screen. Everything was just as it should be. A few weeks later I stopped taking the progesterone that the last time, kept my body from miscarrying. I waited for the bleeding to start, but it never did. The next doctor appointment a few weeks later, I waited for us not to be able to hear a heartbeat on the doppler (we didn't have an ultrasound scheduled). We heard it. A few weeks later, at our ultrasound appointment I waited for them to tell us that this baby would have CDH, just like MJ. They didn't. This baby is perfectly healthy in every way possible. Oh yeah, and this baby is a GIRL.<br />
<br />
Today I am 26 weeks pregnant and everything seems to be going just as planned. I spent SO many weeks waiting for the other shoe to drop and for something to go wrong. It hasn't and I am just now beginning to believe that I will have a baby girl in my arms come January 2012. In three weeks we'll schedule my c-section, which I am guessing will be around January 13, 2012. It will be a Friday, Friday the 13th, which I oddly find comforting thinking that this baby will be born on Friday the 13th.<br />
<br />
So because I have always viewed this blog as MJ's, I created a new blog, a family blog. I'll still update this one from time to time, because I will always miss him. I always long for him, I always hope and pray that somehow this is a bad dream and my son didn't die. I'll never move on from his death, but I can move forward, and I guess that is what this new blog is about. Moving forward and embracing life instead of waiting for the other shoe to drop all the time. So if you'd like, please come join me on the new adventure of having a sweet little girl come into our lives in January <a href="http://willieandmegan.blogspot.com/">here</a>.Meganhttp://www.blogger.com/profile/13440297344300028377noreply@blogger.com1