Monday, March 30, 2015

April

I am having huge anxiety over the month of April.  I get extremely tense, and agitated just thinking about the month.  I do not want Wednesday to come.   I am afraid for the month to come, afraid for the month to end. It will be an extremely brutal month in our household for Amanda and I.

In a few days, some of our best friends are having their baby.  We are extremely happy, and over the moon for them.  However, it comes during the time that we are supposed to have our child 3 weeks later.  I am nervous about this baby being born.  I am nervous for the couple, for the baby, and most of all I am nervous for Amanda and I not to take our grief and anxiety out on them over their healthy baby.  This will be a major hurdle for us to get through during our grieving process.

I am also have high anxiety over April 27th. Our due date.  The day Johnathan Paul was supposed to come into this world.  The day where Amanda and I were to celebrate life, celebrate our love for one another, and celebrate our son Johnathan.  Instead, Amanda and I won't be celebrating at all, we will be grieving that day.  These next few days, weeks and months will be by far the hardest to get through.

If I could have 2 wishes, my first one would be of course to have my healthy son back with us, but if I couldn't have that, my second wish would be to get through the next few months without having too low of lows.

7 weeks, 6 days.

Sunday, March 29, 2015

Time of our Lives

There is a popular song that plays on the radio all the time.  The song is called Time of our Lives, by Pitbull ft. Ne-yo.  The song is about not caring for a night, and to have the time of your life.  It is a catchy song, that I enjoy, for the most part.  At 3:10 in the song, Pitbull sings "Everyday above ground is a great day, remember that."  When this part of the song comes on, I find myself turning the station.  I don't know if I agree with this.  Every day above ground, I am not with my son.  I am reminded that I won't see my son grow up.

Tuesday, March 24, 2015

Group - 2nd try

A few weeks ago, I tried going to a support group.  I built myself up to go for almost a week, and when I was turned away at the door, I felt more lost and helpless than anything.  It crushed me, as I needed to know that Amanda and I were not the only ones that loss a baby.  

This past weekend, Amanda and I had a few conversations about trying another support group.  This group specialized in loss of a child.  Both Amanda and I had our reservations about going, since we didn't know if we would fit in.  Especially since we loss our child during pregnancy, and not later on in life.  

We decided to go, and Amanda and I were the youngest people there by far.  We were greeted by a really nice lady, and said that it doesn't matter if you loss your child during pregnancy or when they were in there 90's, a loss is a loss.  At this point, I knew we were the only couple there that loss their child during pregnancy, and I again felt like Amanda and I were the only one's in the world that have loss a child in pregnancy.  

We sat down around a big table, and on the opposite side of the table, people started to say their name and who they loss.  The first person said his name, and that he loss two kids, one to cancer (in her 30s), and the other was murdered (in his 20s).  My jaw dropped.  I grabbed onto Amanda's hand and listen to the rest of their stories.  The whole time we were there, I tried to hard not to dismiss their feelings and losses, but I thought, at least you had time with them.  You had X amount of years with your child.  I had my child in my arms for for 30 hours, and for those 30 hours, he was not here with me. 30 hours not years.  I did not see him open his eyes, cry, walk, run, etc.  I started to get angry with these people who had these experiences and still upset that they loss their children. I tried to relate with them, and validate their losses, because it is a loss for them. Needless to say, I don't think this group was for me/us.  

After the formal meeting, Amanda and I started to grab our coats to leave.  We turn around and there was a lady that came out of nowhere to talk with us.  She wanted to let us know that she loss a son at 7 months, and that she knows what we were going through.  She also wanted to let us know that she was a grief nurse, at a local hospital around here, and she knew that we didn't find the right fit with this group.  She recommended another group that meets in a few weeks, that Amanda and I have decided to go visit.  

I felt like Johnathan sent her to us, to let us know that we will find the right group for us, and that he is always around to help us through our grief.  

Today is day 50
7 weeks. 

Wednesday, March 18, 2015

Do you have children?

It was the Saturday before Johnathan's funeral, and I needed a hair cut.  I got up early, to go to Great Clips, so when we were done we can run errands for the funeral.  There was about a 20 minute wait, which was no big deal especially on a weekend.

Finally, my name was called and the stylist and I went to the next open chair.  The stylist that called my name, was barely out of high school, and I'm 98% sure he was hungover.  As most of stylist do, they make small talk.  It was innocent enough, we talked about the winter, and the holiday season, and what we were doing this weekend.  Inside I am falling apart, as I am there to get my hair cut for my child's funeral.   But I remember saying to myself this is easy enough, I can make it through this hair cut.

Then the dreaded question came.  "Do you have any kids?" My first thought was to get up out of the chair and walk out.  I don't care how my head looks, I don't need this line of questioning.  How dare this 18 year old drunk kid ask me if I had any children.  This is not an appropriate question to be asking anyone.

My mind is racing through many thoughts, and I needed more time to think about this question.  I asked him to repeat the question in hopes he asked a different question or if he did really ask that question I can come up with an answer in the the next few seconds.

I did not prepare myself to answer this question.  How are you supposed to prepare?  Your child just died a few days ago, you are there to get a hair cut for the funeral.  I panicked and said "no."  A major decision I now regret.  I do have a son, I do love him with my whole heart, and I do hope he forgives me for the moment of panic I had.

Today is day 44
6 Weeks 1 Day

Tuesday, March 17, 2015

1 in 160

When Amanda and I had a moment, we did what most people do, and researched about stillbirth, and researched what we could about Johnathan's symptoms.  Our google search, was filled up with blogs and various searches on stillbirths.  There is one stat that we found that just blows my mind, 1 in 160 births are stillbirths.  How in the hell can we allow this many births to end up in still?  How is the number acceptable in the medical community?  How is ok that with all of the medical advances out there, we were unable to do anything besides have more intake of protein, we couldn't do anything for our son Johnathan?  I know that people do not line up, and if you are 160th couple, your child just doesn't become still, I am not an irrational person.  My son did not deserve to be born still, he deserved to have a full life, with his first time crawling, walking, running, first day of school, first dance, first girlfriend, first heart break, college, wedding, kids of his own.  He deserved to have a full life, not being taken away before he had the chance to live.  How did my wife and I end up on the 160th birth?  How did we end up with the shit straw?

Today is day 42
Today is the start of week 6 



Monday, March 16, 2015

What is happening?

Today, I was re-reading my post from yesterday,  and I realized that I didn't put how many days it has been since Johnathan was born!  What does this mean?  I don't want to forget the days. I hurried and recounted the days on my calendar. 41 days.  Have I forgotten, am I loosing him?

I somehow feel like I am loosing him, loosing the memory, because I didn't remember the days since that day? I know this is childish, and irrational but, how could I do this, how could I have lost count of the days? Does this mean that I need to start to count weeks?  I know that one, tomorrow 6 weeks. 6 weeks, that should have been the best sleepless nights of my life.  Not 6 weeks of hardship, horror and complete sadness.

41 days.  6 weeks tomorrow.


Sunday, March 15, 2015

I'll Love You Forever

When we were in the hospital, I read, re-read over and over again I'll love you forever, by Robert Munsch.  It is one thing I knew right away that I wanted to do to build memories with Johnathan when we found out about the issues he is fighting that day in December.  It was a book from my childhood, and I felt like I needed to let him know that I would love him forever, and like him for always.  



There is a song in the book that goes "I'll love you forever, I'll like you for always, as long as I'm living, my baby you'll be."  I found that fitting for Johnathan.  In the coming days after the his death, my sister made us a beautiful paddle with his feet and the song on it.  It sits in our living room next to our fireplace.  



A few weeks ago, a buddy from high school asked me if I was going to get a tattoo with Johnathan's name on it.  I have never thought about it, and I didn't know if I wanted to have a name on my body. I could not shake the thought, andI knew it was good way to honor my son. I  have never wanted a name on my body but I thought a quote is a great idea.  I do have 2 other tattoos, and new I wanted a third, but since my second one didn't turn out the way I wanted to do it, I was nervous.  

When it comes to tattoos, there are 2 rules that I should follow, first, don't get names, and second is to wait a year and if you still wanted it after a year, than you should get it.  When we first lost Johnathan, I remember reading somewhere that you need to wait at least a year before making any life changing decisions, like a new job, moving, tattoos etc.  I broke not only one of my rules but a grieving rule as well.  But I knew what I wanted, and I didn't want to wait a year for it. 

One of my co-workers husband works/owns his own shop somewhere around Milwaukee, I just didn't know where.  He is a well known (across the United States) tattoo artist.  Jim Francis was on season 4 of Ink Master.  I was asking my co-workers some questions about him, and if he had any opening in the next year, thinking he was booked for a long time as he is a well known artist.  (for the record I found out that he was booked for the next month or so). Ten minutes later I get an email from her and said he can fit you in on Saturday.  

This was only Wednesday I had 3 days to figure out where I wanted my tattoo.  I knew the quote, "I'll love you forever, I'll like you for always. "  But I didn't know where.  I discussed a few different areas where I wanted this tattoo with Amanda and my friend Tyler, I felt the most comfortable with the front of my right shoulder. 




I ended it there as I wasn't sure if I wanted the whole quote or not, and I can decide if I want "As long as I'm living, my baby you'll be" at a later date.  I am extremely happy with my new tattoo, and the way I decided to honor my son. 

Back to the I'll love you forever book,  my wife and I have been seeing a councilor/therapist/life coach and she did some research on this book, as she has never heard the book before.  She came across this website where the author describes how he came up with the idea of the book.  He writes, 

"I made that up after my wife and I had two babies born dead.  The song was my song to my dead babies.  For a long time I had it in my head and I couldn’t even sing it because every time I tried to sing it I cried.  It was very strange having a song in my head that I couldn’t sing.
For a long time it was just a song, but one day, while telling stories at a big theater at the University of Guelph, it occurred to me that I might be able to make a story around the song.
Out popped Love You Forever pretty much the way it is in the book. "

I was extremely surprised the author wrote the book about his children that has passed.   It makes the quote that I got that much more important to me, as it came from the same place, pain, fear, love and passion I have for my son.  

Here is the website that she found it from:













Tuesday, March 10, 2015

Group

Today has been five weeks since Johnathan was born, and over the past five weeks I have learned things, and learned to let go of other things.  I have to believe that Johnathan has helped me with both.

Tonight was supposed to be the first night of group.  I text Amanda earlier today to see what time it was, and if she wanted to go or not.  She said it was going to be at 6:30, and that she didn't want to go.  Not that she didn't want to go, but she had plans to meet up with a few of her friends for dinner, and that she wouldn't be able to go back to this group for a few months because of class. I decided to go by myself.

I wanted to go, even with out Amanda, because I have been feeling like the outcast and wanted to know that we are not alone in this.   I am having a hard time relating to others, others who haven't experience true loss.  That there are others out there that are in the same situation that Amanda and I have.

Before I left home, I ran upstairs and grabbed the little people car that my Step dad, Terry, bought him in the hospital, and that we keep next to his urn.


I needed to have something/someone there to get me through the first few minutes of group. I needed to have my son with me, and this was the only way I knew he would be with me.

I head to the hospital where the meeting is being held.  It was a different hospital than the one where we had Johnathan, so it gave me some relief that I didn't have to drive the way we drove to see Johnathan during the hospital visits.  I parked in a parking spot, and walked into the hospital.  I am extremely tense, playing with one of the tires of the car I brought, as this is the first time I am going to talk about my son to complete strangers, and I am by myself.

When I walked inside the front desk lady asked "Can I help you?"

I grab my phone and asked "Where is the conference room is on level five?"

She told me that there is no meeting in that room tonight, what meeting are you looking for, and I told her.  She said it was cancelled and that it should be back next month.

In a way, I was relieved that I didn't have to go to the first meeting alone, but at the same time, I just wanted to cry because I needed it.  I needed to feel connect to my son, I needed to know that my wife and I are not the only one's who have been in this situation.  I just needed the meeting.

Today is day 37.
Today is the start of week 5.

Saturday, March 7, 2015

God

Over the past few days, I have been wrestling with a typic that not everyone can relate.  I don't know if I am now at the angry stage of grief, but I am pissed, and I am pissed at God.

I know that this is a loaded phrase, but after last weekend of writing out our Thank you cards and re-reading some of the cards and gifts we received from the funeral, God is an asshole.  A lot of the cards said something about how "I hope you find peace in God, and his love."  I am calling bull shit.

I don't want to offend anyone with this post, and everyone has a different relationship with god, as we all should.  But if God is really so loving and wants the best for us, why does he give people so much pain?  Why does he hurt  his "followers" so much, and demand nothing but love and respect back?  What about his accountability?  What about his love and respect towards us?  If he is so loving, he needs to be accountable for his actions.  He needs to be accountable to me and Amanda.  Above all he needs to be accountable to my son Johnathan, and why he couldn't have a long and happy life here with us on earth.

I believe that there is something bigger then what is here on earth, and that we go someplace after our time here.  I do believe that there is some type of God.  But I also believe in accountability. I believe that if God is all loving, and really wants the best for us here on earth, then he must not be as loving as everyone talks about. He needs to be accountable, just like I have accountability to my wife, family, friends, and to him.

How does someone, who lost a child before the child had a chance to live, find "peace and love" in God?  God has been nothing but cruel, selfish, allows this much pain. I'll say it again, I am pissed at God, and he as a lot of explaining to do.

Today is day 33.


Friday, March 6, 2015

The Look

I have talked about 'The Look" a few times before.  It is a look that people give you when they know you just went through a horrific ordeal, and have nothing to so say to you.  It is a look of pity, of I wouldn't want to trade places with you in a million years.

My first day back to work, I got this look from almost everyone.  My cube is at the end of a hallway so everyone in the hallway can look down it and see into my cube.  Every time I turned around that first day, I would see another one of my co-workers staring at me with this look on their face.  I tell myself that they just feel sorry for you and the situation you are going through, but I am one that doesn't want the pity.  Going back to work when I did was already hard enough, now add this to the list.  I didn't ask to put into the situation that my wife and I were thrown into, so I don't want your pity face.

In the future, god forbid, if this situation happens to someone I know, there are 2 things I will try my hardest not to do.  First is ask "How are you?" because we all know how I felt in a previous blog.  The second is to give "The Look", because they are going through hell, and they don't need the pity to be placed on them during this time.

Today is day 32

Wednesday, March 4, 2015

Symbols

I woke up 45 minutes before my alarm when off this morning, my mind racing.  For the first time in over a month, I was actually reviewing everything I needed to get today.  Feed the dog, take a shower, drive to work, do work, write a blog, listen to Johnathan's playlist.  And it hit me, I don't have a song for Johnathan.

Let me step back for a second.  When I was a senior in high school (10 years ago), I loss my Grandma.  One of the first thing my family did was pick out a song to play at her funeral, as each one of my cousins and I bring up a white rose to her urn.  That song was "Remember When" by Alan Jackson was that song we picked.  That song has came on the radio at during the biggest events in my life, ie moving to collage, getting married, buying our house.  When this song came on the radio I knew I was being guided by something bigger.  

Amanda and I stayed up late one night between leaving the hospital and the funeral, to build a music list to be played at Johnathan's funeral.   I have listen to this play list everyday since the funeral.  It makes me feel more connected Johnathan, I can see him.  Most of these songs have never been played on the radio.  I was getting more and more mad that I won't ever be surprised by my son when a song comes on the radio.

Back to this morning, I am laying in bed freaking out over not having his song.  I kept going through the playlist, over and over again in my head, and I couldn't figure out a song.  My alarm goes off, I get up to get ready.  I walk into the bathroom, turn on the radio, and the morning show that I listen to is having  Jerrod Niemann playing in the studio.  The first song he played was "3 Little Birds" by Bob Marley.  I had forgotten that we added this song to our song list.  My little boy told me that he wanted to be remembered by this song.  I gave out a sigh of relief, and cried.  


"Don't worry, about a thing.
 Because, everything is going to be alright."


Today is day 30.


Tuesday, March 3, 2015

How are you?

How are you?  This is a simple question, and should have a simple answer.  Before February 2, my normal answer was "Good".  I found myself never thinking about this question, mainly thought it was a conversation starter, and that was it.  Now these words are by far the easiest way to tear me down.  Especially from people who use it along with the "look".

When I get asked this question from someone who gives me the "look", in my head I am screaming,  "How the hell do you think I am, my child, my life, the reason why I am here on earth just died! How would you feel?!  I am here away from my grieving wife,  my only goal at this point is to get through the fucking day!  How do you think I fucking am?!" (Sorry for using my french!) Do these people really care and hope that I really open up to them if I answer  this question?  Or, are they just asking me so on the off chance that I might go postal, and they hope they don't make my list?  Just for the record, I won't be going to postal at any time.

"How are you" is an extremely loaded question these day.   A question that I would like to take out of everyone's vocabulary.  It is an innocent question, that I don't know how to answer anymore.  I may look fine on the outside, but I have been crying for the last month, I have been falling apart, I am not here good on the inside, I am good on the outside.

Today is 1 Month since he was born.

Today is Day 29.


Monday, March 2, 2015

Babies

When Amanda and I were at the hospital that dreadful day in December, Doctor Cruz told us to buy the protein shakes. Amanda needed to have 3 bottles of these a day, including with these shakes, Amanda needed to have at least 50% of her meals needed to be protein.  So when we left the, we headed straight to the grocery store.  We needed to pick up some of the basics, steak, chicken, pork, anything with high content of protein and of course the Pediasure Protein Shakes.  We were told that these shakes were to possibly help with adding some weight and growth for Johnathan.  For me, these shakes were the life line between life and death, and the only thing I knew as a father, I could do to save my child.  I made sure that Amanda had the three a day. When I would go to the grocery store, I would buy all the shakes that they had on the shelf.  There was a time we spent almost 70 dollars on just shakes alone.

Amanda and I were in some sort of a daze as we left the hospital, as I was driving, I was getting pissed at the driver in front of me for not going over the speed limit, and Amanda was crying next to me.  Our world was just shattered, our little girl (at this time we thought it was girl) was dying.  Some how, with a few middle fingers flying, we made it to the grocery store.

We just had a lot of information thrown at us at the hospital, and none of it sank totally in yet.  We walked into the grocery store, and the first thing we saw was this little boy.  His mom was paying for their food.  The little boy, who was no older than 12 months, just turned and smiled at us.  This innocent act from this little boy stopped both Amanda and I in our tracks.  At this point, at least for me, everything just sank in. There is a strong possibly that I won't be grocery shopping with my child.  I just wanted to turn to that woman, give her a hug and say "hug your precious little child, cause you are extremely blessed to have him here with you."  A  part of my heart broke for the first time that day.

Fast forward to the first week back to work.  I work as a Regulatory Specialist for a bank.  I don't speak to customers, so my co-workers and I will send each other different meme's about different situations.  A manager from a different department, who had no idea that it was my first week back from loosing Johnathan, sent this picture:

http://msfizz.sodastreamusa.com/wp-content/uploads/2011/03/you-rock.jpg

I broke down.  I know that she didn't know what happened, and that this was sent on accident.  However, it teared me up inside.  I almost wrote her back and asked why she was so insensitive, and how could she send something like this? Out of all the meme's we have sent back and forth, why did she have to pick this one, and why did she have to send it on the first week back?  Why?

Today is day 28.





Sunday, March 1, 2015

Birth

Tomorrow it will be 1 month since we loss Johnathan Paul.  It is hard for me to think that far ahead.  I know its only one day, but my only goal is to get through today.

It is 4 o'clock, 4 hours after we found out that Johnathan Paul is no longer with us.  We walk into the hospital, to check in.  My family is waiting in the waiting room, and Amanda's is on there way.

Amanda and I check in, and we walk to our room.  Amanda climbs on the bed, the place she doesn't move from for the next few days, while I set our bag down, and start to to 'move in'.  I am freaking out in my head, my whole life is falling apart, but I remember thinking to myself, just try to put a smile on, things can be worse, you don't have to make the tough decision on when do we need to take Jonathan Paul out and to put tubes in him to save him.

While we were at the hospital, we had three different nurses to help us get through this horrific yet beautiful ordeal.  By far our favorite was Kylie, the night nurse.  She was the most calming and up lifting when she came in to check on us, and she was the one that helped deliver Johnathan Paul.

Almost immediately we started to induce labor.  We were told that the labor could last up to three days, it all depended on how well Amanda would react to the medication.  Thankfully, it took less than 12 hours.

When we had down time, and it was just Amanda and I in the hospital room, Amanda turned to me and said that she doesn't want to have an epidural.  We discussed the different out comes, and to my best judgement I disagreed with her, and thought that she should not have to go through all the pain of giving birth.  It would be more traumatic in the long run, plus when we have our second child, she can decide not to have one, and feel better about it.  I was going to support her decision, because I knew that having to go through labor probably would have killed me.  We had 3 doctors and 4 nurses tell us that we should do an epidural.  Amanda held off on the epidural until probably midnight, and after the second dose of medication.  She was in so much pain that her body was shaking uncontrollably.  It was the hardest thing that a husband and a father would ever have to see.  I couldn't do anything to help or make things better.  As a man, especially a man that needs to fix problems, how can you not fix this, how can you not fix the situation?

The epidural took 40 minutes to insert into Amanda's back.  39 minutes longer than what I thought it would have taken.  All I knew about an epidural is what I have seen from movies, and none of what I saw was true.  I thought it was a shot into the spine, and all the pain goes away for multiple hours. This is a procedure, a procedure that if it wasn't for the nurse sticking up for me, I would have loss my right to stay in the room with my wife.

While the epidural procedure was occurring, Amanda's heart rate dropped.  One of the two doctors in the room pushed me back so she could get to Amanda.  Not only was I already scared that my son has died, but now I am being pushed out of the way so the doctors can get to my wife.  The doctor started to talk to Amanda, told her to focus on her breathing, lean on her side.  Within 30 seconds her heart rate came back up, and things went back to normal.  These 30 seconds were the longest 30 seconds of my life.  If I was kicked out of the room for the whole surgery, I don't know how I would have made it. The epidural took a few minutes to start to work, and Amanda's shakes started to calm in about in hour, and her personality came back.  We were moving closer to the actual birth of Johnathan Paul.

With our Parents out in the waiting room or in a hotel, we were told by Nurse Kylie, to try and get some shut eye.  At this point I had been up since 5am the morning before, and we are coming upon 3 am the next day, I had been up for almost 24 hours, and I wasn't even tired.  How is anyone supposed to sleep when at any moment the reason they are alive, the reason for being here on earth is on his way?

I was half asleep, when I hear Amanda calling in the nurse to see if the baby was coming.  Kylie comes in and said no nothing is there, try to sleep because you won't sleep after.  I looked at the clock when Kylie was leaving the room and it read 3:39.  I turn over on the couch and finally fell asleep.

Amanda called the nurse again, and said that she felt something again.  At this point I was annoyed, I finally fell asleep, and I needed at least some sleep.  The clock read 3:51 when Kylie walked in.  She looked, and said oh, it's time.  Once she said this, I felt horrible for thinking being annoyed, and I thought to myself, why are you so selfish during this time.  You need to be there for your wife.  (This way of thinking has always been hard for me to over come, but I am always way to hard on myself.)

Two doctors run in, and told Amanda to start to push.  This is it, this is the time where the physical part is almost over, or at least I thought.  This is the time that I will meet my best friend, I will meet the person who is the reason why I am here.  Even though I know he truly isn't here with us. I have met him, but he didn't met me.

Johnathan Paul was born at 4:03 am on February 3rd, 2015 in his sac.  The doctor said it was extremely rare.  You can see his little hands and feet in the sac, and it was one of the most beautiful things I have ever seen.  Johnathan Paul was 10 1/2 inches long and weighed 12 oz.  He was perfect in every way.  He had my exact feet, and Amanda's hands.  He looked just like me, just a lot smaller.
We had 32 hours with him in the room with us.  32 hours of hanging out with him, 32 hours of reading I'll Love You Forever, 32 hours of conversions with him, 32 hours of holding him, 32 hours to say good bye.

Saying Good Bye was the hardest thing that we have ever had to do.  Handing him over to the funeral home, just about killed me.  Why at the age of 28, do we need to plan a funeral for our son.  No parent should plan their child's funeral.

Today is day 27