Wednesday, June 26, 2013

Passing of Time

I have a countdown timer on my phone.  We have used it for years to countdown to birthdays, anniversaries, and major holidays.  It's something we have always enjoyed to help build and keep excitement for these events coming.  The passing of time has always meant we are closer and closer to the exciting event that we have waited so long for.

I now have the opposite; yet my brain and heart and soul can't wrap around the concept.  The counter on my phone now counts from the date we lost our beautiful boy.  It has NO ending.  Yet when I look at it, when I see a calendar, or hear the date spoken, or when my body simply feels the passing of time I think, ok we made it 8 wks, just a few more that we have to make it and then I get my baby...oh wait.  There is no, and then.  Yet I can't wrap that up inside of me into a package that I can absorb.  I simply can't.

The counter of losing my baby never ends.  How is that?  How can I be expected to deal with this day in and day out with no end?  With no goal of making it thru?  No reward at the end.  No happy moment or time.  It simply counts until the day that I die.  How can my heart and soul be expected to with stand that?

Every morning  I wake and for those few brief moments in between sleep and awake I listen for the swish of his machines, the tick tick tick of the monitor, the slightest crackle of his video monitor.  I expect it to be there.  Every single morning I have to again come to the realization that he's gone.  My baby isn't there.  The never-ending counter is ticking the wrong direction into oblivion.  Every night I go to bed knowing that my baby is gone, yet every morning I must learn all over again that my arms are empty.

It's cruel.  Beyond cruel.  The life that I now live.  Having to relive my baby's passing every morning.  Having to watch the timer count to nothing, when only a click of a screen away it's counting to our birthdays and anniversaries, and holidays. 

I don't have to make it to a certain day.  I have to make it until the day I die and I get to go join my baby.  I don't want this to be my life.  I don't want to wake up each day ready to go snuggle my beautiful boy and brush his blonde hair back from his face every morning with my fingers so I can kiss his little forehead; only to slam into the brick wall off child loss so hard that it takes my breath away.

This isn't the life that I asked for or imagined. 

I wouldn't give up the time I had with my Tiny Warrior for anything, but this pain is one that I can't imagine carrying for the rest of my life.  I can only watch the counter tick into oblivion, and do my best to keep up with each and every day.

The passing of time hurts so very much. 

tick tock tick tock

Thursday, June 6, 2013

Smiles and Laughter

I NEED to make sure that everyone understand that it wasn't all tears.  We smiled.  We laughed.

These were right before the service, in the family room at the church that was set aside for the immediate family and close friends.  I honestly don't even remember now what was said, but it was something about Eli and we all just laughed and laughed.

This was as we were getting ready to walk into the service and the wrong song started playing, It was the "Signing Time with Alex and Leah"

This was during the service.  Pastor was talking about the ornery side of Eli.  It was all about Eli's troublemaker times and he combined and used all the little stories from Eli's life that we all sat around the living sharing one afternoon during the week before.  It was am amazing time a midst a week of turmoil.

This was during the service when Pastor talked about how very much Eli loved  playing peek a boo!!!

This was after we carried Eli's coffin from the service to the hearse.  Mike (Dr Lewis) told Bob that he was so strong. Bob said heck no.  Mike said you should win an Emmy your acting so strong!  

This was graveside.  I wanted us to hold Eli one last time, the 4 of us.  It was me and Bob, Lauren (Eli's primary nurse) and Mike (Dr Lewis, Eli's primary doc).  I commented that it was our last time to carry the weight of Eli together.  I imagined it weighing more and said so.  Mike looked at Lauren and I and said "Did one of you miss a feed?  Didn't you run enough IV fluids.  Must be why he lost some weight."  It was exactly what the 4 of us needed at that very moment.

As Eli's coffin was set atop the vault, Emily could no longer control her emotions, which means she couldn't control her asthma either.  I did what I had done countless times that week.  I started singing and signing the ABC song.  This was Eli's favorite song and the first one we ever learned to sign.  He would clap and sign "more" repeatedly for us to do it over and over.  All week it worked to calm all of us down.

This was the balloon release.  Eli's mickey balloon and a few others got stuck into the tree, because of the wind that day.  Just a few weeks before the kids frisbee had gotten stuck in the and Michaella and I pulled our van under the tree climbed on top of it with ladders and sticks and brooms and finally got it out.  Eli had stood in the doorway watching us out the window clapping and cheering the entire time.  Bob was less than thrilled with us when he got home, but once we told him how Eli clapped and cheered he couldn't help but smile.  Eli got us out of so much trouble that day!  
As a side note Eli's balloon got free somehow after our family had left.

Visiting with family and friends afterwards talking about Eli, and random other moments of laughter during it all.

I guess my reason for sharing these is so others know that we have found moments of laughter and that it's ok to laugh.  We sure did.  
There were many evenings during the week before late at night where the kids were in bed and all of us adults sat up getting our "homework" done each evening.  At some points someone would say or do something and we would all laugh so hard until tears were pouring down our faces.  Moments that I can't even remember having in the last few years.  At points we felt guilty and at points it felt so good to laugh.  
It was needed.
I just wanted to share that it wasn't all tears.  Our little man was ALWAYS smiling and there were times where so were we.

and wow do I miss his smiles.

Wednesday, June 5, 2013


There are so many pieces of that night that I didn't include in the What Happened post.
Pieces I'm ashamed of.  Pieces I feel so guilty about.  Pieces that hurt so very deeply and so badly that I feel like my heart stops too when I think of them.
They are pieces I thought only I felt, pieces I thought that I was so weak that I couldn't handle and that others were so much braver and stronger.
In the few weeks that have already passed I have spoken to other moms.  Each of our journeys are as unique as our fingerprints but that being said there are some things that were the same over and over and over.  Surprisingly some of the things I am so ashamed of and feeling so weak about are some of the big things I keep hearing over and over from others.
Others are just as afraid and ashamed to say these things.  It's so sad that we are all so scared to say these things out loud for others following in our painful footsteps to know.  For others who come after us to see that these things are normal, these things are ok, these things don't make us bad.  These things come from intense pain, so much shattering pain that our bodies simply can NOT handle it.

I reminded myself that I have always vowed to stay open and honest.  I have vowed to share our journey, raw and unedited.  I don't want others to think they are alone.  So here it is.  Raw.

When Eli had his first seizure I collapsed in the hallway against a chair. I couldn't be in the room.  They got him "stable" at that point and I went back in.
When Eli had his huge seizure in our arms and stopped breathing I ran out of the room and collapsed on the floor screaming.  Someone came to me and tried to help me.  I couldn't move.  I could only scream.  I stayed in the hall for probably an hr.  2 nurses and a chaplain held me up.  I couldn't move.  I couldn't go in Eli's room, I couldn't even look in there.  I could hear them.  I could hear the beeping.  I could see the monitor in the hall flashing 4-6 for his pulse ox for almost 1 hr.  I could only yell questions at my husband.  I couldn't step in there first hand to see what was happening.  I made my husband be there with Eli and all of the doctors standing at the end of our sons bed while they intubated and bagged him.  I grabbed his nurse at one point as he was trying to get to eli and told him to save my baby.

I couldn't walk or stand without holding on to someone or something.  I felt like nothing was real.  I didn't feel as though my feet were on the ground or that the world was holding me upright.

At one point during the night I had to go to the waiting room.  I layed down.  I couldn't sleep.  I was so dizzy and nauseous I could no longer move.  I layed with a blanked pushed over my mouth as hard as I could to try to keep from throwing up and to stifle the screams that were inside of me.

When my husband came to me after maybe 30 or 45 minutes he told me that they were trying their last thing.  The hail mary vent.  He said it wasn't working.  He said I needed to come.  I laid there staring blankly.  I didn't flinch.  I didn't cry.  I didn't move.  Finally when I was able to move I first walked to the bathroom to be ill, before barely walking back to my sons room.

I went to Eli.  I begged and pleaded with him to be strong.  I told him over and over how strong he was.  How he had to keep fighting.  I never once told him that it was ok.  I simply pleaded with him to keep fighting.  It never once crossed my mind how much pain he might be in, I just pleaded with him to not give up.  I cried a million tears on him.

I made his primary doc make some calls.  I made him decide when to bring the kids.  I made him talk to the kids.  I couldn't do it.  He sat them down.  He talked to them.  He told them what was happening.  I sat there blankly crying and staring.

I called up a good friend of ours early in the evening.  She spent the entire night with us.  She had to go thru the torture of such a night.  Another friend had to come up with the children.  A good friend of ours had to be with us all night taking photos of every moment.  I pulled people into this night that didn't have to be there.   I asked them to be there because I was to weak but this made them have to experience this pain too.

I made my husband stay at the foot of Eli's bed.  I didn't let him leave him because I was to weak to be there.  My husband didn't pee, not 1 single time in 16 hrs.  He stayed there.  He watched every single second, without his wife by his side at times.

I didn't research anything.  I didn't check the meds they were giving.  I didn't push for answers and options and help.  I didn't fight and ask for second opinions.  I didn't push for a miracle.  I didn't question everything. I didn't ask for his sugar checks and temps.  I didn't.  I don't know what pain meds they gave my baby.  For the first time in his life I can't tell you any of the medical things happening.  All I know is my baby was dying right before my eyes and so was I.

I told the PICU doc and our doc and the nurse that I was dying with Eli.  I told them that if and when he died I just knew that I would too.  His PICU doc grabbed my shoulders and looked at me with a pain in his eyes that I had no doubt what he was going to say.  He had lost a child too.  He said he had felt that same feeling.

We stood in the hall many times.  His primary doc showed us Eli's chest xrays as he explained what was happening.  He had requested from the ICU doc for him to be the one to talk to us.  He told us it was ARDS.  We begged for a fix.  He told us that ECMO may have been a very small possibility for a "healthy" person but not for Eli.  He also told us that nobody in our state does it and Eli wasn't stable enough to transfer to a CT scan let alone another hospital.  He told us we were out of options.  I just stared blankly at him.  The next words out of his mouth were about not wanting Eli to suffer.  He said at some point Eli's heart would stop.  DNR.  We said we don't know.  We asked him what to do.  At this point we couldn't even think.  We couldn't.  He stepped away to talk to the PICU doc.  Bob and I stayed in the hall outside of Eli's open PICU room talking.  At that exact moment the alarms went off, Eli's heart had stopped while we stood in the hall discussing the DNR.  I ran to the doctor.  I didn't run to my baby's side.  I ran for the doctor and literally drug him by the arm to Eli's room.  I stood in the hall while everyone flooded my baby.  My body couldn't move until I heard the PICU doc yell start CPR.

Then I was all movement.  I flew to Eli's bedside with my husband and Eli's doc right behind me, as I yelled stop.  The PICU doc grabbed me.  He said you have to say it.  I begged him.  I screamed at him that I hadn't held my baby yet.  I kept yelling that over and over.  He shook my shoulder and said you have to say it.  The moment the words were out of my mouth my kids screamed and ran for Eli.  I broke them.  I broke them.  I made the call.  I said those words.  The docs and nurses and respiratory and I all started literally ripping the tape and cords and monitors and lines off of my baby.  I grabbed him and they swung me around and shoved me on the bed with him, bob being pushed onto the bed with us.  They shoved the kids forward on top of us.  I held him. I held him so close and so tight.  I couldn't let go.  I couldn't let anyone else have those last seconds with him.  Bob had his arms around both of us.  the kids arms and faces all around us.  At some point we removed the tape and pulled the intubation tube out of his mouth and threw it across the room.  The nurse removed the cath for us so it was simply our baby.

I couldn't move him.  We stayed that way for sooo long.  In the end Lauren had to lift him off of me because I couldn't do it.  I was the last one to hold my baby.

I am not strong.  I'm not. I'm still not sure if that's ok.  I feel as though I let my baby down.  I feel as though I abandoned him.  His heart stopped when he was laying in that bed alone and we were in the hall going back and forth over that fucking DNR.  We should have been there with him.  He shouldn't have been alone.

and please don't think that my fuck ups stopped that night.  I was numb.  I didn't help my kids.  I didn't help my family.  i didn't check in with my friends that we had up there that night with us to see if they were ok.  i shut down.  I cried.  i refused food.  I walked around blank.

I couldn't move at the funeral and froze in the doorway.  i had to be held up by a few people and shoved down the aisle.  I collapsed graveside pulling many people down with me.  I watched as one of my sons tried to jump into the grave yet I did nothing.  I didn't even know that my other son was crying for one of the first times in his life and NOBODY was with him or knew because they were attending to me.  We found this out after the fact in pictures.  I never checked in to make sure others were ok.

Then I shut down for weeks.  No tears no emotion no nothing.

now the tears are uncontrollable and it makes the kids upset too.  so then I try to hide my tears when they fall.

so again I say.  I'm not strong.  I'm not perfect.  I'm human.  I'm shattered.  I'm forever broken.

I also know for a fact that so are others.  so i guess my point in sharing this is for those like me, those like us, please know that this is normal, this is ok, you aren't alone.  we are all here walking this road.  we are broken too.