Friday, May 31, 2013


"An unturned bed, an empty chair,
I look around, but no ones there.
Toys untouched, unopened books,
This isn’t how this room should look.
Somber faces, swollen eyes,
A river of the tears we’ve cried.
Silence overwhelms this space,
Since we last did see your face.
Trying so hard still to see
All the good you made of me.
Trying harder all the while,
to feel the warmth of your sweet smile.
You were our light and air to breathe
Now memories are all you leave.
We promise you that we will try
to have the strength to say goodbye.
We will miss you so much every day
The pain will never go away.
You were the bravest boy we ever knew
and now we need to be brave too."

by Kate Sytsma (we love you!!!)

This poem was written for us and our little warrior by a very dear friend of ours, who is also a Super Mom (she has 2 kiddos with Mito.)  
She wrote it a few days after Eli's passing and shared it with us. 
It was read graveside right before the balloon release at Eli's burial.  It's beautiful.  It's more than beautiful.
I haven't been ready to share it online yet.  It's been something I've kept close to us, held personally in my heart, but I want to share it now, especially today.
Today.  It seems like any other day to most.  It started that way but as the day moves I become more and more anxious.  Tonight is the night.  We meet with the funeral home to make our last big choices.  Tonight we will be finalizing our choice for Eli's grave memorial.  We should be selecting summer outfits, picking out the outdoor little tykes cottage he was going to get this summer, ordering aqua shield's so he could go swimming in the new pool we promised him, taking him to the book readings he loved, and watching the rain out his bedroom window.
 But instead I have to pick out words, and how we want his birth and death dates to look, and if we want to use a pictures, and what granite we want to use.  Do we want an inscription?  How do we want his name to be?  Which of his many nicknames do we want to use?  It hurts.  It panics me.  
A river of tears; This isn't how our lives should look....Kate you were oh so right.

Wednesday, May 29, 2013


Yesterday was hard.  Yesterday was way more and different than hard but I again have no word that fits.

Yesterday was 1 month.  1 month since I held my baby while he died in my arms.  1 month since I felt his warm body tucked up against me.  1 month since I felt his little fingers wind around my neck when he hugged me.  1 month since I've seen his smile.  1 month since I looked into his eyes.  1 month since I heard the swooshing of his machines.  1 month since I have touched the life saving medical equipment that kept my son alive every day.  1 month since I saw the rise and fall of his chest while he breathed.  1 month since I heard the beat of his heart in my ears.  1 month since my family was complete, whole.  1 month since I was alive inside.  1 month.

It can't be so.  I don't even know how I survived this month, yet here I am.  There are so many months that lay before me and I don't feel as though I have the strength to do that.

Sunday we went to church for the first time since Eli's funeral.  As we pulled in Ben says "I can't wait until I die, so I can play with Eli again."  My heart froze.  Again my beautiful, young innocent heartbroken children, speak the words that lie within my soul.

Church was hard, although again that word doesn't fit.  I had to leave at one point.  When I came back my seat had been taken so I moved to another seat.  I looked down and there was a butterfly sequin on the ground right next to me.  After service I went to pick up the younger 2 from sunday school.  As I walked past Eli's classroom I looked down and there was a gold sequin in the shape of Mickey Mouse's head.  WOW.

Tears are beginning to flow more often.  They come on in huge sudden torrents.  Completely uncontrollable. They leave me feeling empty and worn, and they leave my body in the same type of torment that it was during the week of the funeral planning.

Bob and I went out this past weekend for dinner and a movie.  We posted a basic pic of us on our night out with partial smiles.  Comments were made about how happy people are that we are finally smiling again and doing better.  That's the thing.  We have been smiling many times at points thru this whole month.  We have been downright laughing to the point of tears at times.  Are we doing some things?  Going thru the motions of some semblance of life?  Yes.  But please never assume that means we are "better".  There is NO "better"  Child loss isn't a sickness that we will magically recover from.  We are hurting.  With every breath we take we are empty, we feel pain.  Please realize that we are still hurting, and always will be.  We still need friends and family, and help and comfort, and words of encouragement.  We still need to know that others are out there and supporting us and thinking about us.

For those who checked in on us yesterday,(and those who check in on us almost daily!!!) thank you!  You know who you are.  We can't tell you enough how thankful we are for your texts and calls and messages!  They mean the world to us!

So I guess here I sit.  It's 1 month and 1 day.  It hurts just as much as 1 month did, and 4 weeks did, and 2 weeks did, and 1 day did.  It all hurts.

This is a picture from our private family time with Eli.  At this point everyone else had already had their time and had left.  It was Bob and I's last time to ever spend alone with Eli.  Fuck I miss his little hands.

Friday, May 24, 2013

6 yr old wisdom

I'm broken.  I'm hurting.  I feel dead inside.
I get up.   Shower, dress, eat. Do what needs done all day every day.  I feed everyone on time, I clean the house, I'm even eating myself now regularly.  But I'm DOING nothing.  I'm simply a shell of a person going thru the motions of each day.
I even laugh and smile sometimes, although it doesn't feel enough to actually warm me up inside.
I don't actually enjoy anything.

There are moments where I'm driving down the road and my mind won't stop.  It just goes and goes.  The vehicle is usually the time it goes to the darkest moments, the darkest places of that night.  There is nothing to do in the van to make it stop.  No movements possible.  No speed cleaning a room.  Nothing.  The memories flood me.

Dreams or better called nightmares come sometimes.  In one dream I stepped out to the nurses station on the inpatient floor to warm my dinner.  When I got back into his room the nurse was tearing his room apart yelling frantically that she couldn't find Eli.  His bed was there with his blanket and baby but empty.  When I wake from these my mind is racing.  Going thru all of the moments, the memories, in terrifying detail.

School events are the same way.  Since Eli passed, Ari had her very first kindergarten music program, kindergarten graduation, Ben had a school program, Emily graduated elementary school (6th grade) and had a music program.  It's painful so very painful.  All I can think about is how much Eli loved going to these events.  He loved roaming the halls of the kids school, interacting with the kids, enjoying his celebrity status there.  (most of you probably remember the big school Mito awareness week last Sept that the kids put together for Eli.)  He loved to wave at his siblings and clap at all the wrong and right times.  No matter what, we did everything we could to take him to all the school events, for him and for his siblings.  These times are almost impossible for me now, as the void feels HUGE at all these special family moments.

The first time we took the kids to Eli's grave we were laying back looking at the tree.  The tree where Eli's mickey balloon got stuck on the day of his burial. Watching down over us all.  The same tree that the next day no longer held the mickey balloon because it flew away.  Ari asked why it's gone.  Bob said that Eli got free and flew after after we all left the burial, after he knew we were ok.  Ari looked up and said but daddy we will never be ok, Eli's gone.  There was nothing we could say.

The young innocent 6 yr old who is wiser beyond anything she should ever have to be for 6 said what we were all thinking but to afraid to ever say out loud.

We will NEVER be ok.

I kept saying at the hospital that night that I felt as though I was dying with Eli that night.  They promised me I wouldn't.  As we were leaving the hospital they thought that I hadn't, they thought they were right.  They saw "me" walking out the doors, thinking to themselves, see we said you wouldn't die, and you didn't.  I know that they are wrong.  I died with my son.  He and I died in each others arms.  There is no doubt in my mind that a piece of each of my family members died that night too, and myself completely.  Eli was my entire world.  There was nothing outside of that.  He was me.  I was him.  Every moment was Eli and I.  Every piece of my brain was wrapped up in his care and life, my hands were always busy keeping him alive, my feet moving from activity to activity, appt to appt, my heart and soul were so deeply bound with Eli that they simply can't go on.  Every friend, acquaintance, activity, it was all Eli.  He was my life.

I'm left feeling empty and alone and dead.  I feel as though I have nothing left to give, yet I'm doing exactly what I'm supposed to be for everyone else.  On the outside it looks just right, doing everything I need and should do.

I'm terrified for the day my kids are grown and on their own, as right now they are what keeps me busy.  It isn't enough to keep me, ME, but it is enough to keep me busy.  And right now busy is all I have left.

So in closing.
Yes Ari you're right.  We will never be OK.

Monday, May 20, 2013

Video from Eli's visitation

This video was played at the visitation. We handed over our computer, and memory cards, and CD's and pictures to our amazing photographer friends and they created this masterpiece! My beautiful tiny boy!

Click for Video

Tuesday, May 14, 2013

3 Pictures

We have over 600 pictures from the evening, night, morning, and week to follow up to the visitation.  At some point we will share more in a slideshow fashion but I'm not currently emotionally able to put one together.  That being said there are 3 pictures that are my favorite.  I'm not sure why.  The raw emotion I remember from the time and was soooo clearly captured in the photos might be the reason.  The bond that the 4 adults in these photos have is unbelievable.
Quick rundown of the players.
Me and Bob.  obvious.  Eli's parents.
Lauren.  Eli's primary nurse.  She has been his nurse for 1 1/2 yrs, working 40-60 hrs a week.  Beyond that though she is our family.  She was over almost daily and spent so much time with us.
Mike.  This is Eli's primary doc.  Sometimes I felt as though he and I talked more than me and my hubby.  He would answer my calls morning, noon, night, evening, and weekend.  He would  meet me in the ER, he would call ahead to make things smoother.  He spent countless hrs on the phone, email, fax for Eli.  He grilled and prep residents for the chance that Eli might call in during "off hrs".  He was our lifeline.  When Eli coded the first time and they started intubating Mike was called and showed up VERY fast in his comfys and spent the entire night and morning by our side.
The 4 adults in these pictures were the pall bearers.  For the last times we felt the weight, we carried Eli alone.  It was us.
So here are the pictures.  I'm sorry if these are hard to look at, but imagine living them?!

Sunday April 28th 4:07am

Sunday April 28th 4:08am as Mike gathered the strength to say those words and we all held our Hero

Sunday April 28th 4:08am right after Mike said those words "Time of Death 4:08am"

Tuesday, May 7, 2013

What happened??

This will be disorganized.  things won't be spelled right.  punctuation will be wrong.  sentences will be wrong.  i simply have to type the words.  feeling may show so strongly at points and others may sound so numb.  this is the best i can do now.

we were supposed to have more time.  we weren't on hospice.  this shouldn't be our story.

What happened?  We are being asked that a lot and honestly we are asking that question ourselves.  It's all a blur, it's emotions, fear, pain, torture, it's spiraling downward into oblivion.

Eli had surgery on Thursday April 25th at around 2:30pm.  He had his tonsils and adenoids removed, tubes placed in his ears, and a bronchoscopy.  The docs said it would all help and was a good idea.  As I said previously I was concerned.
Eli came out of surgery with some increased O2 needs (normal after surgery), trouble keeping his blood sugar up (not quite normal but not holy cow out of normal), and some choking spells (which they expected from the increased secretions after surgery.)
They sent Eli home Friday April 26th around 6pm.  The attending begged his primary doc to take over at home care.  We got home and Eli had yet another round of choking around 7pm.  He got situated and we got him to bed on his mattress upright in the middle of his room.  Bob and I threw a futon mattress on the floor next to him keeping watch over him all night.

The next morning, Saturday April 26th Eli was still struggling.  I called thru the paging system and finally got in touch with his primary doctor.  It was agreed that it sounded like Eli had aspiration pneumonia, and it was decided to bring him in.
We got to the ER around 1pm.  They did chest xrays and sure enough a touch of cloudy in his right lung.  He was needing more and more O2 at this point.  They decided to admit him to PICU around 2:30pm.  They asked me if he had ever been intubated.  I said yes of course.  Bob got to the hospital around 3pm and we all got to PICU around 3:30pm.  Eli's struggle continued to get worse.  They put him on a high flow O2 mask.
This is where time starts to get blurry.
Around 5pm Eli had his first seizure of the night.  Breathing was harder, his temp was up.  His heart rate at this point was 170's and his resps around 70ish.  They switched Eli to 100% O2.  3 more seizures followed.
They started BiPAP around 7pm.  He continued to struggle.
Around 8pm we were holding him in bed and he had a huge seizure and stopped breathing.  The nurse grabbed him and started bagging him. At this point they called his first code.  Everyone swarmed.  I lost it and collapsed in the hall.
They intubated Eli at this point.  They couldn't get him on the vent.  I watched the monitors for so long.  His O2 level was around 6 for so long.  His HR and resps a mess.  This went on for around 1 hr.  They couldn't get him onto the vent and he tanked even more every time they tried.  They bagged him for so long.
Another chest xray.  pneumonia getting worse.
Around 10pm the docs said he had a 90% chance of pulling thru.
He kept coding.  They couldn't get him on the vent still.  His O2 level hovered around 50-74.
They had him running on 10 or 11 IV machines at this point.

Around midnight on sunday april 28th the doctors wanted to try the hail mary vent.  They were out of options.  Eli had already coded maybe 3 or 4 times at this point.  The team never getting him stable, never being able to leave his side.
another chest xray.  pneumonia worse.
they tried the hail mary vent.  the docs said they would give it 30 minutes.  it didn't work.
another chest xray.  our world ended.  every drop of air was sucked out of us.  we were crashing, falling, dying.  the blow was like none other.  Eli had ARDS...Acute Respiratory Distress Syndrome.  It's fatal.  Eli's lungs basically freaked out, the pneumonia causing them to attack themselves.  The final chest xray that was less than 2 hrs before the last showed his lungs COMPLETELY white.  At this point the docs said we had less than 5% chance.
At 1am Eli's primary doc (he was called hrs before and stayed with us the entire time) made the call.  Bring the kids.  The kids arrived around 2am.
We took each child in to see Eli.  It was heart wrenching.
eli's primary doc (also the kids doctor) and the head of the hospice dept took the kids into a room and talked.
the kids had a 2nd PICU room next to eli's set up with toys and food and drinks and pillows and blankets.  they were able to move about between their room and eli's room.  the hospital had so many people there to help one on one with each child.  allowing them to have special care and do as they needed.
At 2:30am bob and I were in the hall with Eli's primary doc.  There is nothing more we can do.  His body is shutting down.  He isn't breathing.  He was so swollen.  kidneys not working.  heart could stop at any moment.  can't cause him this pain.  DNR.  DNR  DNR.  This is the words that were being said to us.
we were standing in the hall right outside his open door at 3am discussing signing a DNR when Eli went into a full code.  He stopped breathing.  His heart stopped.  Everyone rushed.  We heard the PICU doc yell for CPR.  We rushed into the room saying no no no.
He grabbed us across the bed and said you have to say it.  you know what this means.  i kept screaming that i hadn't held my baby yet.  they had never got him stable for us to hold him.  he shook us saying you have to say it.  Eli's primary doc was behind us holding us up.  I looked at the PICU doc and screamed DNR STOP.  As I did our kids screamed and ran into the room.
it was a flurry.  the team ripped all the cords and monitors off of Eli.  He was in my arm in milli seconds.  they shoved us on the bed.  bob and i on the bottom, eli on my chest and bobs, the kids piled on the bed on top of us.
i took the intubation tube from eli's mouth and threw it across the room.  we took off the last few monitors.  we turned on music...Josh Groban "Awake" we all sang.(this is the song that Josh Groban dedicated to Eli 2 yrs ago during his Wichita concert, and the song that we have since played for Eli hundreds of times.)  we held him.  we cried.  oh did we cry.  we did his footprints and his hand prints in clay.  the kids loved on him and kissed him.
we stroked his beautiful hair.  we held his hands.  we kissed him.
the only people in the room were bob and i, the kids, lauren, cheryl (our good friend), Eli's primary doc, the hospital chaplain (a friend of ours)...everyone else had left.  all the monitors were off.  it was just us and our baby.
at 4:05am i looked at eli's primary doc and begged him to do it.  knowing what he would say.  knowing that eli had passed soooo long before.  he listened to eli's back 4:06am.  he listened to elis front 4:07am.  he said those dreaded words at 4:08am while he, bob, lauren, and i held eli.
michaella and my parents arrived around 4:45am.  we were still curled up with eli in bed.
around 5am lauren picked up eli while bob and i stood up.  they brought us a basin of warm water and a huge stack of washcloths.
we used eli's soap and we all gathered around the bed and bathed him together.  we used lotion, and did his tubie care.  we brushed his hair.  put on his socks and diaper and pj's and glasses.
all the while the hospital chaplain took photos of our time documenting the whole evening and morning.
we took family pictures.  we said our goodbyes.
the moment it was time to leave jace lost it.
at this point we hadn't slept.  we hadn't eaten.  we had no idea what we were doing.

we all finally left the hospital together sometime after 6am and stood together in a circle in the parking garage crying.

so much happened during the hrs, days and week to follow but i can't go into it now.  I'm worn out from simply typing the above.

Wednesday, May 1, 2013


Eli's obituary can also be seen in the Wichita Eagle, Kansas City Star, and the Dubuque Telegraph Herold Today.