Friday, November 29, 2013


Wednesday night we started backing pies for thanksgiving dinner the next night and I lost it.  Uncontrollable crying and tears that simply wouldn't stop.  I was so scared that I wouldn't make it thru the next day with the baking of a pie was that painful.

Thanksgiving morning was also 7 months since we lost our tiny man.  We got up and went to the gym and burned over 650 calories.  I put it all into my exercise.  We hit the store and finished a touch of baking.  I knit for a bit until it was time to head to my parents.

We ate, not really discussing at all that it was a holiday.  Bob and I went on a walk after dinner burning another 200 calories.  By the time we came home I was exhausted and was ready to go right to sleep.

We did everything we could to make it a regular day, no extras, no fluff, pretending it wasn't a holiday or anything extra.  For thanksgiving that all in all worked.

Christmas is already proving to be another issue.  The kids lost it when we talked thru what type of decorations we really wanted.  Ben screamed that we were getting a tree, end of story.  So here I sit in my living room.

Today we went shopping for our ornaments and a tree.  We also selected our tree topper which will be specially made by my mom.

Christmas decorations on all the shelves, an 8 ft tall tree covered in LED lights, and decorations covering the walls, and doors, and pretty much every surface.  In the midst of my coffee table is the sleigh.  The sleigh that held my baby when he was a few days old for his newborn Christmas pictures.  Yet it not longer holds my baby, the memory of it feels so damn recent and fresh.  The moment the sleigh came out of a box the tears poured, yet again.

Tomorrow the kids want to do ornaments.  Nothing is more personal and special for our family than ornaments.  Every year each of us picks an ornament and our collection grows.  I have my ornaments all the way back to the year I was born, as do the children.  The stories that are told as we unpack and hang each ornaments have always been one of my favorite parts of Christmas.  This year I am unsure how to make it thru all of this.

If it weren't for the oldest 4 there would be no Christmas for me.  I would do everything I could to make it a normal weekday, like I did for thanksgiving.  But that simply won't be possible.   There is no way to take the holiday out of Christmas.

For now I'm trying to blur out my vision, numb my heart and soul, and walk thru the world like a ghost.

My next hurdle is sunday.  Sunday, December 1st.  4 short years after I gave birth to my beautiful boy, yet I buried him 7 short months before.  How can the world be so fucking cruel to not allow my beautiful bright shining smiling ray of light to never see his 4th birthday????  How can I still be here, standing and breathing and walking around without him?  Why could my body grow and nurture and birth such a beautiful creation, and then when it is needed the most not be able to protect my baby??   How can a world be so cruel to not allow a mother to lay down their life to save their child?  We say it so simply all the time "of course I would die for you.  I would lay down my life for you."  Yet we can't.  We fucking can't.  We don't control it at all.  We aren't able to do a damn thing when it all comes down to it.  All I could do is scream and cry and rock him and hold him and talk to him and sing to him and stroke his hair and beg...oh did I beg.  But it did nothing, nothing.  Here I sit at the time of year I'm supposed to be so happy and thankful.  When I should be shopping for his 4th birthday.  When he should be placing his ornaments on the tree.  Here I sit empty and broken and there isn't a damn thing I can do but grieve; and fuck am I grieving.

Tuesday, November 26, 2013


Me.  Who is that?  I'm not sure anymore.

I know who I was 5 yrs ago.  I know who I was the morning of my 18 wk ultrasound with Eli.  I know who I was when I gave birth to Eli.  I know who I was when he received his ultimately terminal diagnosis.  I know who I was when we started palliative care.  I know who I was when I watched them wheel my baby back to his final surgery.  I know who I was when I took my baby back to the ER that final afternoon.  I know who I was when my baby died in my arms.  I know who I was when I kissed his cold head before closing his coffin for the final time.  I know who I was when I crumbled as his coffin was lowered into the ground.

But who am I now?  I have no idea.

I'm at the point of my life that I used to always dream of.  The kids are all in school full time.  I'm home alone 8 hrs a day.

There is a quietness in the house that chills me to the deepest depths of my soul.  The clock mockingly ticks past 8am, 10am, 11am, noon, 2pm, 3pm.  Med times, IV times, feed hook ups, shots, blood sugar checks.  It's all ticking by and here I sit.

Yesterday was my first day home alone.  I know to some this seems like a dream come true.  I know many wish this was their life.  Right now I don't.

Thanksgiving will be 7 months since I held my baby and I have yet to really grieve.  I've been so engulfed with the kids over summer, school starting, babysitting, and the move.  I have tried so hard over these last months to keep it all down.  Focus, be strong, push thru, let the numbness overtake all emotion.   Yet here I sit now with nothing, no responsibilities and the grief is there, much harder to push down for "later".

I find the tears are quick to flow, my mind is quick to wander to thoughts of Eli.  My heart is constantly aware of the ache, the emptiness.

7 months later, the world has moved on, yet I'm just at the tip of the iceberg, the numbness wearing thin, the pain flooding in.

My mornings are spent at the gym.  I'm taking 3 classes a week and working out 6 days a week.  This morning I logged an upper arm strength training, 4 miles on the bike, and 4 miles on the track.  I didn't want to stop.  Stopping means my planned activities for the day to keep me busy end.
My afternoons is TV and knitting.  Working as hard as I can on the blankets for Eli's Promise donation to the PICU where he passed.

At points the tears and grief almost feel welcome, as the numbness brings about it's own level of pain.  At points I just wish I couldn't curl up and turn off the world.

I'm on day 2 of the rest of my life and I have no idea who I am.  All I know is that I can NEVER go back to who I was.  I am forever changed, good and bad.

In closing we received a few more sneaks from our family photos to share!

Eli's "I love you" sign.  He learned this one not long before he passed.  Will always be so very special to our family

Friday, November 22, 2013

Pictures, We did it!!

We had family pictures taken on Wednesday.  I have gone round and round on how I wanted to handle them, how I felt about them, how I wanted to do them, everything surrounding them basically.

When we got there I felt awkward and uncertain and on the brink of tears.  We walked to the location carrying a picture of our baby and our capes.  There was no baby in our arms, no cords and tubes and lines to juggle, no bags to swap from shoulder to shoulder, no O2 tank to keep from squealing, no shirt to pull down over the tubies, no glasses to push back up his tiny nose.  Nothing but a flat pictures.  It was heartbreaking.

We started with Eli's capes.  When I was pregnant we had family pictures taken in the fall.  The photographer captured a picture of us all walking away holding hands.  This is what we needed to do again.  The first time Eli was in my womb, the second time his capes fluttering along behind us as my baby lays in his coffin 2 1/2 hrs away.

We moved on to family pictures holding Eli's picture, his capes blowing in the breeze behind us.  It seems so unreal.  Not a minute goes by that I don't think about holding my baby, and what I would give for one more cuddle.

As we went thru the session the picture and capes were put away and we transformed into a family of 6.  The first few pics felt so wrong, the guilt poured over me.  This isn't how we are, this isn't our family.  We aren't 6, we are 7.

As we got going we relaxed and smiled and played.  We climbed bridges, climbed trees, ran thru fields, practiced walking in straight lines.  Smashed feet so bad they went numb, got cut by a giant tree, climbed picnic tables, threw leaves, told jokes, and so much more.  By the time it was done we had enjoyed ourselves surprisingly.

But the emptiness was there, the loneliness, the heartache.

For almost 4 years my life revolved around keeping my tiny man alive and as healthy as I possibly could.  Now here I sit having no clue who I am, as I WAS Eli.  Eli is gone and I now feel like I'm still trying to figure out how to live for Eli, how to keep Eli alive.  I'm not living and I'm not dead.  It's a very strange limbo.

I have now seen 2 sneaks from our photo shoot and I see us a family of 7 with a deep deep hole in the midst of us, where our 7th member is missing.  Eli was our light, our heart, our soul.  He was a pure beautiful soul that lit our family and the world up with his smile.

I can't imagine having done these pictures in any other situation.  It was perfect.  Our photographer is a friend I have known for 8 years, who also lost her mom a month before we lost our little guy.  She got it, respected it, understood it.  The location was amazing.  The leaves were off the trees and covering the bridge.  It was a bit cloudy.  The worn covered bridge.  The wide open fields.  The huge overwhelming old tree.  The only thing that could have been any better would have been my baby in our arms.

Here are 2 of the sneaks.  I hope you love them as much as we do.  More to come!

Tuesday, November 19, 2013


Every time I think it's as hard as it can get, something comes up and hits me like a ton of bricks.  I can't even imagine sometimes that this journey, this pain, this torture, this emptiness could get harder.  I can't imagine that I can handle anything more.  

Today we started a bit of Christmas shopping.  All over the toy store my eyes would fall on gifts that would have been just perfect for Eli.  Yet they don't go in the cart.  Then there it was.  Eli's favorite gift from his birthday and Christmas last year, his roller coaster.  The tears stung my eyes immediately.

By the time we were in the car my chest literally hurt, the panic and pain over taking me.  The tears burned my eyes so badly I could hardly see.  

We have thanksgiving next week.  Then Eli's birthday on Dec 1st, followed by Christmas and a whole new year.  I'm not ready for any of this.   I want to curl up in a ball and sleep until the holidays are past.  I don't want a tree, I don't want to decorate, I don't want to shop and wrap gifts.  I don't want to celebrate.

I know that we have 4 living children and they so love the holidays.  We will do it.  We will participate.  We will get into the full swing of it.  We will do it for them.  

But oh how hard it is.  The pain is beyond magnified these last few weeks seeing the holidays creeping into our lives.  It hurts so bad at times, it's hard to breath.

I find myself avoiding anything that makes me think of Eli.  I don't play any of my favorite songs, because they were played at the visitation or his funeral.  I rarely look at pictures because seeing his beautiful face is brutally painful.  I don't touch his things, heck sometimes I do everything I can to not look at them, as all they do is remind me that he's not here using them.  I try not to look at clothes when we are at stores, as I always loved picking out his adorable little outfits.  I avoid toys and kids books.  It pains me to look at holiday decorations, as all I can think about is him not being here for the holidays.

Tomorrow we take family pictures.  How do you take family pictures when part of your family is missing?  I don't know.  

The guilt is overwhelming at times as well.  If I do enjoy something, or get momentarily excited looking at a decoration, or the thought of taking pictures and displaying them of the 6 of us, or so many other things...  It all seems wrong.  I know that we have to go on and be a family, the 6 of us, but it's not that easy.  It's simply not.

I don't know how much harder it's going to get but I do know that the pain of child loss is all consuming, brutal, painful, intense, breath robbing, numbing, guilt ridden at times, lonely, and hard.  Oh so hard. 

Monday, November 11, 2013

What's Autism?

Autism.  What is it?

To some it's defined by characters they have seen in movies.  To some it's something they hear about in the news and see with a puzzle piece ribbon.  To some it's the 2 ends of the spectrum, either being a non-verbal child who rocks uncontrollably in the corner pounding their head against the wall OR the child who is just a bit socially awkward.

What is autism to us?
It's sometimes all of the above.
It's a daily part of our life.  It brings extraordinary amazing surprising pieces into each and every day and it brings frustration, exhaustion, sadness and sometimes blood boiling pieces into each and every day.

As most of you know our 8 yr old is Autistic, and he also struggles with OCD, anxiety and sensory issues.  This makes for interesting life situations.

Things that are so easy for the rest of us aren't always so easy for Benjamin.
Some examples?

He has to be called the correct name at the correct moment.  That is sometimes Ben, Benjamin, Mom, brown bear, snuggle bug, his best friends name, or whatever name pops into his head at that moment.  If you pick the wrong one he can get frustrated, angry, or simply acts silly.

He can't handle clothes shopping, trying on clothes, or sometimes clothes in general.  This will result in all out loss of control, where he screams and panics to the point of almost being asked to leave stores.

He can't handle restaurants as they are crowded, loud, he has to sit still way to long, and waiting for food after ordering is to much for him to handle.

He doesn't like to go to the park, the zoo, outings, fun activities, family visits, shopping, or any of those other places.

He doesn't like to eat or drink.  He has no desire and will go days without drinking if not prompted.  He will eat if he's being strongly encouraged and bribed, unless it's a good day then he'll eat a bit on his own.  This means he's tiny and gets sick and dehydrated easily.

He can't sit still.  EVER.  This makes for interesting times at home, in school, and out in the wild.  We have had to use door alarms to know when he's taking off, he's required to hold hands in public or he just disappears, his teacher has him sit as far from the door as possible AND keeps her door closed so she has more warning to catch him before he walks out of the classroom, and he has been lost at school and the sheriff's department has had to shut down the whole place and search for him.  He spins and flips and kicks, which means he can't be to close to people or they will get hit by him.

He yells and squawks randomly.  He says horribly inappropriate things whenever it comes to his mind, and he usually says them as loud as possible.  He needs constant prompting to speak properly when spoken to.  Someone says "Hi", we say "Ben what do you say?", and this goes on for the whole conversation.    I don't know how many millions of times a week do I say "Ben what do you say?".

He has obsessions.  Huge obsessions.  They change at the drop of a hat.  When we are in an obsession it's all life consuming.  Right now it's minecraft.  Sometimes it's toys, or books.   Heck it's even been berries in the middle of winter in Iowa.  His one constant obsession is brown bear.  From the book "Brown Bear, brown bear".  This is the book he learned to speak with and it's his life love.  He has a stuffed brown bear that goes everywhere with him, and when he's not in the mood brown bear will answer yes and no questions for him, sometimes.

Ben struggles to use silverware and write legibly.  He also struggles to walk down stairs and can't seem to get the foot coordination for it.  He can't handle words that have multiple meanings, he can't handle abstract thoughts and he hates figurative speech.

Ben is also incredibly smart.  Oh so smart.  School work is a breeze for him if you can just get him to focus.  He is a good reader, and can do math in his head.  He loves art and can draw some really neat intricate drawings.  Origami is a favorite of his and he can make his own creations without the help of a pattern.

Ben has a great memory and can memorize songs and many abstract facts.  He has learned some jokes and loves to say them in his little Ben way.  I'm not sure who laughs more, us or him.  He can be such a little cuddle bug and loves the sensory of being snuggled so tight.  He laughs easily, and his laugh is so very contagious.  He sees so many things, although he struggles alot with emotions.  He loves video games and is really really good at figuring them out.

Benjamin is in the 3rd grade and school is getting rougher for him.  This move has been amazing for him.  Today was his IEP team meeting.  A lot of changes have been made.  Ben simply can't handle being in a regular classroom with 1 teacher to 24 kids.  He roams, gets into trouble, shreds his work, walks out of the room, throws sand, doesn't do his work, and so many other things.  It's been decided that Benjamin now requires 1 on 1 support at all times.  He will have a para always with him at school to completely focus on Benjamin, as his behavior is disruptive to the class, it hinders his own learning, and can be dangerous.  He is also needing more sensory breaks and input so the OT is looking into compression garments and such to see if we can get more results than we are currently with the weighted vest.  He will also be getting further evaluations from OT and PT.  He will be needing accommodations on testing.  His speech goals have also been slightly adjusted.  His teacher is having problems finding things that motivate Ben and we also have these same issues.

These changes bring mixed emotions for us.  We are glad they are pushing so hard to find solutions for Ben and to help get the perfect fit.  We are excited to see the changes that everyone is hoping for.  BUT  I'm feeling a bit heartbroken by yet another regression, by needing more help, more interventions.  It's tough as a parent.  We know that this is the right choice, but that doesn't always make it easier.

So what is autism for us?  It's all these things and sooo much more.  It's our life.

Tuesday, November 5, 2013


Saturday was a nice day, it started out so normal.  We went to the park, went to the grandparents house, ran a few errands, listened to music and had cinnamon rolls for breakfast.  Driving home my brain kicked into it's favorite run-away mode.  Except this time it didn't go thru all the normal things.  There was no battle of information, no replaying of scenes, no convincing or trying to wrap my mind around it.  Loud and clear it rang thru my head....


That was all.  That was all that was there.  Loud and clear.  Flashing lights thru the fog.
It left as quick as it came and the tears started.  It was brutally painful.  For that briefest of moments there was no fleeting thought that he was still here, or coming back, or that this was all a dream.  For that brief moment, it was real.  It was so very true and real.   There was no hint of anything more.

It was brutal and cold and painful.  It is my reality.  I know this but the blur and fog and numbness has been so strong that sometimes I could almost pretend that all I was doing was breathing and nothing else existed.

I don't know what is to come.  But I know that at 26 weeks and 6 days since I lost my baby that my body and mind and soul are trying to pull out of the fog and wrap around the concept that my baby is gone.

I'm not sure if I'm ready for this.  Not that I feel that I can ever be ready for this reality.  But the numbness and fog definitely has it's positives.

Where will I be a minute from now, and hr from now, a week from now, a month from now,  a year from now, or a lifetime from now?  I have no idea, and quite honestly I don't want to know.  The pain of child loss is so intense I simply can't think that far ahead.  I know where I am RIGHT NOW and that's all that I can handle.

Please hang in there with us.  Please remember that it's not something that we will get over.  There is NO cure.  We won't just move on.  This is our baby.  We are grieving and we will always be grieving.  Please always remember that we are still so very early in this process, in this new life without a piece of our family, our life, our identity.

We are trying.  We are doing the best we can at the moment that we can do it.  We can't slow down the process, rush the process, pause it, hide it, or control it.  Child loss rules and we go with the flow, ebbing, and ducking and swerving and holding on for dear life.

Please help us hold on too.

Monday, November 4, 2013


We are home.  Moved, unpacked, kids in school, mostly situated.
I'm relieved to be home.  I am missing Eli more than I had imagined though, and that's been tough.

Ariana ~ She's loving the new school.  She was more nervous than expected the first day and by the time she was picked up that afternoon, she was happy as could be and had of course made a whole group of new friends.  She is such a social butterfly and makes friends wherever she goes.  She has enjoyed sleeping on the top bunk in her shared room with Emily and hasn't fallen out of bed at all!

Benjamin ~ Wow.  It's been such a shock how this move has effected him.  His new school has been AMAZING.  His teacher has been great in getting things set up for him.  He had all of his labels and schedules on his desk and ready to go.  Right now we have been sending a weighted vest back and forth while they get situated.  They have 2 sensory rooms that they take him too as needed during the day to allow him to get rid of some of his extra energy.  He has started speech and says he likes his new teacher.  He has come home fairly relaxed and has even told us some stories about his day and what he's learning, which for Ben is un-heard of.  We are hoping this continues!

Jace ~ He's enjoying his new school as well.  Elementary school goes thru 5th grade here so he's enjoying being the top dogs in the school!  :)  He has already gotten involved in band and they meet 3 times a week, which is 1 extra time then he did in Overland Park.  Jace and Ben have easily fallen in line sharing a room, as this has always been their preferences, even when we had enough space for them to have their own rooms.

Emily ~ She's doing well with school.  She likes her new school and has already made friends as well.  She's involved in orchestra and choir, and that is and probably always will be her top priority!  She has an audition on Thursday to get in with a very accomplished elite private tutor here in Maize, so she's practicing away for that.  It's been a bit more of an adjustment for her sharing a room with Ari, but not to bad.  Ari prefers to be out in the family room so Emily ends up getting all of the privacy that she wants.  Emily celebrated her 13th birthday on the 27th of October.  I still can't believe we officially have a teenager!  She's getting so old!

Bob and I are getting situated.  It's been a big move and a big adjustment but we are already seeing so many of the things we had hoped to see with this move.  We are definitely confident that we made the right choices.

Halloween was tough for all of us.  The first big holiday without our baby.  How he loved dressing up and seeing his siblings dress up.  He would always get bundled up in his wheelchair and loved going house to house seeing all of the kids.  I was very thankful that it was dark out as I had tears pouring down my face for the first half of trick or treating.  It was tough.

I will get more up soon.  Just wanted to give a quick update letting everyone know that we are here and getting situated.