Grieve

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.

Me

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

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!

Hard

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. 

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.

Gone

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....

MY BABY IS GONE.

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.

Home

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.

Guest Blogger : Another Perspective

My Guardian Angel

~ Emily, Eli's biggest sister

All done all done, my brother Eli had surgery on his tonsils and adenoids. Not even twelve hours later he was aspirating or choking. ‘’Hurry! Hurry!’’ my mom said as I rushed to help her pack to go to the hospital.

A few minutes before Eli left for his final hospital time.  April 27th, 2013

 When my mom went to pack his medicine she told me to hold Eli. So I sat down and held his weak little body up on a boppy to keep him from choking. Little did I know that that was the last time I would hold and see my brothers little eyes, and the last twelve hours until my life would completely crumble or break forever. When my mom had everything packed and ready to go she told me that Lauren (one of Eli’s nurses) would be taking us to her house to sleep and then take us to her church the next day. So my siblings and I went with her to go eat dinner at her house. After dinner my siblings and I talked to Lauren and told her that we were worried about Eli (which we do every time he is in the hospital) so we all sat down and tried to comfort each other. The little kids went to bed and I stayed up and talked to Lauren some more then we both went to bed. Emily! Emily! Is the sound I woke up to. I screamed as there was a person trying to talk to me. I immediately started crying for I knew it was about Eli. As I was crying she told me that Lauren had left around ten pm, that her name was Amy, she was watching us and that she was supposed to take us to the hospital. She explained to me that Eli was not doing very well and that we needed to hurry and wake the kids up quickly so we could make it to Eli. She told me also that my mom tried to keep from calling her to bring us up here but now it was time and that my mom couldn’t hold it anymore. Tears ran down my face as I woke the kids and told them what was going on. I watched their faces when I told them it broke my heart to watch them react to the news.

All of us kids were in pajamas and we rushed out to the car. I carried Benjamin as he was crying and yelling Eli’s name. We got to KU and I ran inside and rushed to my brothers side sobbing. My mom was in there her face was wet with tears and my dad was by her side sobbing quietly. There my brother was limp, weak, and hooked up to all of these machines. His eyes were closed and he was barely breathing. I hurt my heart so much I became so anxious and depressed. Mom told me the machines were keeping him alive for the moment and basically breathing for him. My mom, dad, and I begged the doctors to tell us what was going on. I ran to my dad and wept really hard.

My siblings and I all went back and forth between two hospital rooms. One room had Eli and the other room was a place we could go to weep and try to keep from panicking (which didn’t work we all panicked) and both places were cold to me. Then later on the doctors and all of us had a meeting they said that Eli was barely breathing and that they were going to try one more thing to help him. They also said that the machines were only going to keep him alive for a few extra minutes. After the meeting I called my friend Anahi and we stayed on the phone for thirty minutes while I wept and told her what was going on and how she tried to comfort me. Mom, Dad, the kids, and I were talking when Eli started beeping. The doctors rushed and starting doing CPR on him. My mom and the rest of us screamed for them to stop. My parents had to physically go over there and tell them to stop CPR. They stopped CPR and my family just ran over to Eli and carefully pulled off all of his medical equipment. The rest of my family stood around Eli and we cradled him till he had to go.  Our family doctor Dr. Lewis came in and held my parents tightly as he announced time of death with teary eyes. We cried a lot, bathed Eli, put his pajamas on him, and said our last goodbyes.

We packed his stuff up in a cart and walked out of the hospital teary eyed. We all had mixed emotions. I was confused, angry and sad all at the same time. To this day I still can’t accept my brother is gone. I ask myself why he died and sometimes I blame myself to.

            Now five months later my family goes every once in a while to visit him. My family and I now know the meaning of the quote ‘’ Live everyday as your last remembering that for some it just might be.’’ It came so unexpectedly we went from playing with Eli to burying him in less than seventy-two hours. This is my family’s story.

Books and Toys and Electronics OH MY!!!

What a weekend it was.
Friday morning we picked up the moving truck and started loading it full of books and toys and electronics and itunes cards and activity kits and so much more!!!  It was amazing and overwhelming!  You guys were amazing.  We ended up with around 2500 books, 10 boxes of toys, 2 boxes full of electronics, 2 large itunes gift cards, 2 boxes full of activity kits, and so many large toys and play structures that I can't even list them all.  A big group of us headed to KU Medical Center right after lunch.  We were met there by Eli's doc, scheduler, and many of the other people in our hospital team, as well as the hospital photographer and our local TV station news team.  (we didn't know they were coming).  We first unloaded all of the toys and some of the books onto carts and dollies and such and spent almost 20 minutes waiting for all of us to get it all thru the elevators and up to the Peds floor.  I broke down in the hallway right outside the Peds/PICU entrance.  It was really hard.
We had so many things that they had to use one of the large patient rooms to load it all into.  We all had a chance to talk, and cry and laugh, and share stories of Eli.  It was hard and wonderful all at the same time.
The news team did their interviews and got all of the their shots.  It was overwhelming.
Eli's doc was able to spend a few moments alone with Bob and I.  We all went over the PICU together and spent a few moments standing outside of room 24.  I had wanted to go in, but there was a patient in the room.  It was strange.  The room seemed so normal, so typical.  Just a hospital room.  I stared at the door, expecting to feel something, but numbness took over.  The Peds floor was tough, seeing the halls that my son ran down and played in, the playroom that he explored, the staff we spent so much time with.  The PICU was cold and numb.  The last moments I spent with my baby were all wrapped up in that room, his final breath, his last bath, the last time I ever held my child, yet I felt nothing looking at that closed door.  It was strange.
We re-joined everyone and had to drive over the book sorting facility to drop off all 2500 books.  They were amazing there as well.  They took us into their book library and let the kids look around and explore.  They took photos with us and our books, and listened to stories of our little man.
As hard as the experience was, it was doubly amazing.  To know that my little man's smile and playful nature will continue to bless the halls and rooms of the hospital, and the homes and families of so many patients.  His legacy will continue to live on even though he's not here anymore.  This melts my heart.
I try so hard to make it feel enough.  To make my heart and soul and mind all sync up together in the knowledge that so many love our little man and that his legacy lives on, but I can't lie.  It's not enough for me.  As my arms are still empty.  It helps some, but it's never going to be enough.

That afternoon we all came home and loaded up the moving truck yet again for our first load to Wichita.  Bob and I left Saturday morning and came back Sunday morning.  We got a lot hauled and organized.  It was exhausting but well worth the trip.

This week is busy finishing up things here.  The kids have another concert next week and parent/ teacher conferences.

Last night was our final night at our family group grief counseling.  This cycle has ended and won't start up until the new year, long after we are gone.  We are very thankful that we participated and hope to find a similar place in Wichita.

We leave 1 week from tomorrow.  It's still a very bittersweet feeling for me, but I'm ready.

I will get more updates soon.

Updates and Calls for Help!!!

So many changes in our life and I'm anxious but so very ready!

First, we are moving.  We are moving back to Wichita.  The opportunity came up, and it was to good to pass up.  We have been working on packing, slowly but surely.  We will be running the first load to Wichita this weekend, but not officially moving until the 24th.  The kids are mostly excited, a bit sad to leave behind some friends, but excited to get home to our friends and family there.

Secondly, It's official! I have decided to sell Mary Kay. I met an amazing woman at a fundraising event, and we got to be friends. I tried out some of their new products and fell in love!! I have decided that this feels like a perfect fit for me! 
I want to go into this always remembering that everyone is a unique individual, with a unique sense of style, desires, budgets, and goals. 
My goal is to grow with myself and with the company. I want to use my profits to pay for Eli's headstone AND to do a whole lot of fundraising and donating for Mitochondrial Disease.
Please visit my website and look around! Ask any questions that you have and I would love to chat by phone, in person, help set up facials or parties, and get you started with these amazing products! You do NOT have to be local. I can deliver products to you and am also more than willing to ship! I will do free shipping for any orders over $75!!!!
I have an order goal that I have set for myself and I have 10 more days to reach it! Please help me reach this goal! Every person who places an order will be entered into a drawing for free product AND if I reach my order goal in the next 10 days I will donate 25% of my profits to the UMDF. 
Please order and please pass this along as well! Thank you for your continued support!!
www.marykay.com/hmtomkins

Life is super busy these next 2 weeks.  Emily has an orchestra concert and a choir concert.  Jace has an orchestra concert.  We have 2 school events.  We have our final night of our family grief support group.    We have parents teacher conferences, an IEP mtg, a team mtg, and a SIT team mtg.  This doesn't include violin lessons, choir practice, flag football practice, and all of that.

Our biggest activity these next few weeks is we are visiting the hospital where Eli passed away.  We have finally finished sorting and labeling all of the books, toys, electronics, and activity kits and will be taking everything to the hospital this friday to donate.  We have so many things that we will be using a moving truck to help get it all there.  This is because of YOU guys.  You have been amazing in donating to Eli's Promise over these last 5 months.  We are so blessed, and it has warmed our hearts to know that so many people loved our little man and that he touched so many lives.

I'm nervous about going as this will be a very emotional time for all of us.  The kids are off school that day, my parents will be in town, and many friends and even some of Eli's doctors and team will all be meeting us there!  

So how are we other than all of the above?  Busy.  I'm doing the best I can to keep busy and get thru the days and times.  I'm so very ready to be back home and the time can't come fast enough.  I will miss Eli so very much, but will be looking for just the perfect spot to move him this summer.  

The thoughts of leaving our home, the last place that we will ever live that we shared with Eli is also daunting.  There is a part of me that can't wait to get away from the empty spaces that further remind me what I've lost, but there is the other part of me that feels a bit of comfort from being in his room and such.  

We are at 5 months, 1 week, 3 days, 7 hours, 36 minutes, and 48 seconds.  I still have that feeling that if I can just make it a touch longer that this will all be over with.  

One final request.  There is a group called Mito Wishes Upon a Star that sponsors children with Mito for the holiday season.  Our family has done this every year.  We have loved shopping for a child and sending them gifts, and always enjoy seeing the pictures posted as the kiddos open their gifts.  They are in need of more sponsors this year.  Sadly more and more children are being diagnosed with Mito and the goal is to help each and every one this Christmas season!  Please please consider supporting a child this year!  You can find the group on facebook or email me at ejbamommy@gmail.com and I can get you hooked up with them!  Thank you!

A Few Fall photos

Our Mito Awareness Picture

Fall Decorating for Tiny

The 4 kids in the tree at the cemetery that has some of the Balloon's from the release graveside.  the kids love to go under it and collect any pieces of balloons that fall out.

Bob and I this morning visiting tiny

Eli's new scarecrow

Our family at the Energy for Life walk this year

Bob and I under the same tree mentioned earlier.  Emily took this!  She did a good job.

More fall decorations

His fall decorations.  Eli's car that Benjamin picked out for him.  Also my new butterfly paperweight that Bob and I found. 

Shared Custody

This is a topic that has been on my mind lately.  It has come up multiple times in our medical circle and I can't help but think more and more on it.
It's something that over the last 3 1/2 yrs Bob and I have talked about extensively, almost exhaustively. I think it's time to address it.

I bet we are thinking something different at this point.  Most of you are thinking about divorce, court orders, split parenting, custody battles, and your ex's.  As much as I could talk about those things, that isn't what I'm referring to.

Bob and I shared custody of our tiny hero.  We shared custody with social workers, case workers, therapists, interpreters, teachers, doctors, surgeons, PA's, home nurses, hospital nurses, respiratory therapists, schedulers, pharmacists, child life specialists, nursing agencies, our medical online and local community, and all of the other people who shared a vested interest, need to protect and nurture, and downright love for our little man.

Eli was never just our child.  I was never just his mother.  From the moment we found out on our 18 wks ultrasound that our little baby was a boy and that he would be sick, we began to share custody.  At first it seemed ok.  A bit like a basic doctor visit.  Chat about him at the office but ultimately he was our baby.  We could go home and talk about things together, privately, just the 2 of us.

After Eli was born we had a few days at home.  We watched him get sicker and sicker.  Within days he was back in the hospital and at that moment shared custody became a real and permanent part of our life.  We left that hospital on Christmas Eve with a van full of medical equipment, a handful of prescriptions and medications, home nursing, and tubes coming out of our beautiful perfect little boy.

Things in our home immediately got sold, packed up, shoved into storage to make room for all of the medical equipment.  We learned new ways to care for a child that we had never heard of.  Nursing started showing up every day.  Our children quickly learned how to have a 3rd adult always in the home.  Bob and I quickly learned about how much privacy meant to us, because it was gone.  Every conversation, every kiss, every fight, every frustration, every messy dish, every unattended load of laundry, every tear now had a witness.  We learned what it meant to trust someone we had just met with our home, our family, our private home life, our baby's life.

As time went on all of these things increased.  We had to look for housing simply to accommodate Eli's medical equipment and his team and his therapies.  Homes that were walker and wheelchair accessible. Homes that allowed nurses to be able to safely carry Eli around and navigate stairs.  We bought furniture to fit our ever expanding family.  Larger couches, dining room table with more chairs, etc.  We learned to cook larger meals so we always had food to feed whichever nurse was working that day.  We cleared out entire closets just to house the nurses supplies and paperwork.  Birthday dinners, family holidays, home celebrations all included and extra chair, an extra gift, an extra bit of love extended to our new family additions.

Doctors became friends, as I spoke to them more than my own family and friends.  I knew all the nurses, and schedulers, and receptionists.  They were my friends, my confidants.  We talked about life.  We talked about Eli.  We cried together.  We discussed options, and quality of life.  I entrusted them to care for my child day and night, weekday and weekend.  They answered my calls no matter the time of day, no matter what.  They were always there when we needed them.  They helped make medical choices, they helped talk about quality of life, they talked to my little man, tousled his hair, colored with him, read books with him, played drums with him, they were on TV with him, they held him, they watched him grown, they noticed the tiniest changes in him and looked into it.

At the end instead of turning the other way, they came running.  They showed up in PJ's and sweats, with caffeine to stay awake as long as it took, they gathered everyone, they called people all day and night and the next day.  They fought valiantly for our tiny hero.  They cried when we cried, they dropped when we dropped.  They hurt.  They gathered and struggled.  The pain shown thru lighting up the entire PICU floor.

They held us, they cried with us.  They gathered around us and held us up when we couldn't stand.  They shared custody.  The baby that died in the early hours of the morning wasn't just my baby, it was our baby.  I shared custody.

I don't regret this for a moment as I truly believe that Eli wouldn't have made it as long as he did, he wouldn't have been as strong as he was, as healthy he was at the moments that he was, he wouldn't have gained the skills that he did without all these people.

BUT as a mother my heart and soul aches.  I didn't get to just be a mom.  I was also all of those people. I was a doctor, a nurse, a therapist, a scheduler, an insurance agent, a respiratory therapist, a pharmacist,  a lab tech, a coordinator, an on and on.  I had to share custody not only with the entire team that it took to keep my son alive, but with Mito itself.  The medical equipment, the interventions, the meds, all of it.

I look back now and wish so badly that I hadn't watched the clock so hard to make sure we didn't do a med late, to make sure we didn't miss an appt, or a therapy, or a glucose check, or a nebulizer treatment, or that we weren't 10 minutes late for a feed or IV fluids.

In the end he got all those things and they were important and I don't regret it for a moment, but I wish I didn't have to share custody so much.  I wish I could have been a mom more.  Held him more.  Kissed him more.  Read just one more book.  Played just one more game.  Gone to the park just one more time.

Shared custody is over.  Everyone has moved on with their lives.  The moment my tiny man was buried the world moved on.  The doctors and nurses and all the teams moved on to their next patients.  I know they still love Eli, I know they still think of him, but they are all gone.

We shared custody, but we don't share our grief.  I've been left alone for that.  Was it just a job for them?  The look in their eyes at 4:08am on April 28th 2013 tells me that it wasn't, but the 5 months since tells me for many that it was.  Either way here I sit.  My arms are empty and my heart is broken, for the rest of my life here on earth I will share custody as my baby is no longer with me.

Loss

I apologize for not getting all of my Mito week topics done.  Our computer went nuts and trying to type an entire blog post on the ipad isn't ideal.

It's been 5 months for us.  I simply can't believe it.  I can't tell if it feels longer or shorter.  I just can't imagine that this is our life and still sometimes think if we can just make it a little longer then it will all be over.

Just a few days ago another little boy (he was 11, but still to me they are so young) passed away AND another little boy celebrated his 9th birthday in the ICU because no hospice team will allow him to go home for his last time here on earth because he's to complicated.  These things are so painful for me to see and hear.  It all brings memories flooding back.

Lately some of my numbness has been wearing off, atleast going away at random points.  A lot of other  emotions pop up, but strangely not exactly emotions that I would have expected.  I sometimes feel jealous.  Oh so jealous.  I'm not particularly a jealous type in general, but child loss has brought that emotion out in me sometimes.  Another one is guilt.  That's a tough one.  Sometimes my mind flies thru all the what if's.  I agreed to a surgery that I was admittedly uncomfortable with, signed the surgical and anesthesia consents, and watched as they wheeled my baby into the OR.  Then in the end I had to tell the doctors and a room full of people to stop CPR.  If these events don't bring on feelings of guilt then I don't know what does.  Once the guilt starts the questions immediately start.  I have attempted to think thru every scenario that could have happened, every thing I could have maybe done different, trying to remember every second to see if there was 1 thing any of us could have done different.  I find myself wishing sometimes for the numb to return, as it's simply easier.

A few days ago I looked at a few of the pictures from that night, something I haven't done in quite awhile.  I have 7 of them printed in black in white mounted on poster board.  They were made for Eli's visitation and funeral by our photographers.  They are so real, and harsh, and painful and beautiful.  There is the one photo from 4:08am that is my "favorite"; if that's possible from an event as horrible as this,, and I find myself sometimes just staring at it.  It is a picture that the chaplain, our friend, took the moment Dr L stopped listening for sounds of life but the moment before he called time of death.  Bob and I are laying on the bed with Eli on his back on top of us.  Lauren is on bob's side, Dr L is on my side.  We are all staring at Eli, holding hands and touching Eli.  She captured that one last moment.  The last moment.  I knew he was gone at this point, long gone, but something about not having time of death called, made it still seem almost unreal.  That moment caught for eternity is like nothing I can ever describe.  The picture is the most beautiful thing that I have ever seen, that final moment before my world ended.  Sometimes all I can do is stare at it and try to remember who those people in the picture were, because we are surely changed forevermore.

I lost so very much on that day.  I lost my baby, I lost my nurses, my friends, my best friend, my identity, my skills, my time, the doctors and hospital staff that had gotten to be my friends, and so much more.  I lost things I didn't even realize I could ever even lose.  Some of the things lost I fought so hard to get back after Eli's passing, mainly my best friend.  I fought hard with energy I didn't even have to fight with, and in the end had to let go and give up.  I have learned during these last 5 months what matters and what doesn't matter, and who matters.

I've been surprised to see who has stayed by our side and who hasn't.  We have learned that child loss, doesn't just mean losing the child, it means losing the child and so much more.

I would trade everything for one more moment with my baby.

Money, or more accurately the lack of It!

Money.

It is a hard spot for those affected by Mito.  It is something that we ALL struggle with but rarely speak about with others outside the community, heck we even carefully skirt around it with each other.

Loss of work, modified transportation, copays, doctors and meds not covered by insurance, insurance copays, travel expenses to get to experts, modified homes, modified equipment, medical supplies that we so badly need but insurance doesn't supply enough of, medical equipment not always covered, special clothing, food while we are inpatient for weeks and months, child care for our other children while we are inpatient, gas to drive back and forth to so many appts and therapies each week, toys for therapy, special school costs, adaptive equipment for communication and therapy, therapy centers, nursing, special aides, special needs car seats, counseling and therapy for everyone involved, enormous utility costs to run all of the special equipment and to keep the house at the perfect temp for those that can't on their own.  Oh and lets not forget doing everything we can to keep their lives happy and healthy and perfect and help them live out their bucket list, and make every birthday and holiday and Christmas as VERY special as possible because it very well could be their last.

The above list is only a FEW of the "hidden" costs.  There are so many more.  I am simply listing some of the first things that come to mind for our family.

Let's not forget the above costs are while they are still alive.


Many of us end up with funeral expenses, which are ENORMOUS.  Plot, coffin, vaults, flowers, memorial folders, food, guest lodging, burial, headstones, etc.

Most of us weren't even able to get insurance policies as our little one's were to sick to qualify, and if we are it's usually thru an employer and children policies are very small and minimal.

The final costs come quickly and abruptly.  Most families are still left with bills from hospice, hospital stays, PICU stays, doctors and anything and everything in between.

Now think about the adult caregivers.  Many of us have let our health slide as we simply don't have the time, energy or money left to properly care for ourselves.  We have our docs, meds, therapies.  The stress and lack of sleep have taken a huge toll.  There are mounting medical costs for us many times as we have given our life over to caring for our "Mito patient".

We also fundraise, we step up to help families in need.  We donate our money, our time and our talents.  We hold auctions to help families in need and families who have lost.  We donate to Mito charities, we set up fundraisers, we do so much behind the scenes to help raise money so that they can possible find cures and treatments for Mito, so that it can spare our loved one, or others still fighting.

We give and give and give of ourselves financially.  They take and take and take from us financially.  So many of us are doing the best we can to get thru each month with our bills paid, food on our tables, and meds and treatments for our loved ones.

If we come online and speak of financially problems, asking for help with fundraisers, ask for donations to get to a specialist or for a life saving piece of medical equipment, or for a donation to a local walk or event, we are usually met with silence from most of the outside world.  The mito community steps up, they scrape from already empty accounts, they stay up all hrs to make crafts to donate, they do what it takes to get the money needed.  They give and give and give until they have nothing left.

This isn't a post begging for money, this is a post begging for people to think and consider and realize the financial toll that Mito and I'm sure so many other serious medical conditions take on families.  Please consider being generous.  Please consider donating to Mito organizations, families, fundraisers, local events, etc.  There are so many families desperately in need.  The difference you can make with even a small donation is HUGE.

For those affected with Mito please don't be afraid to ask for help.  Reach out!

Mito Awareness Week

What will my topics be?  I could spend the week giving statistics, odds, treatments, definitions etc...  These things are VERY important and helpful.  I do think they are important and I have no problem in the future providing this type of information and websites on where to find it.

But my life is different now, my life is forever changed and I feel like it will be best for me to help with Mito awareness from our side of it.
Some of the things I plan to blog about?

Mito in the end.  How it was for us, what it looked like, what the doctors said, how quickly it can happen.

The lifelong damage, after effects and after shocks.

The financial toll that Mito brings upon families.  (always a hard subject for some)

The physical toll Mito takes on the caregivers.  It's not just an energy depleting disease for the one effected.

Siblings and Mito.

These are just a few of the things I want to talk about this coming week.

Right now my family is working to get thru this weekend.  It's the Mito walk here in KC and I'm terrified.  We will be walking for our little hero, without him by our side.

Please consider joining our family in person at the walk, or as a virtual walker, and/or by making a donation.  All can be done on our team website
Eli's Journey Energy for Life Walk KC

Please check back in often next week for our Mito Awareness week!

Never Enough

Sometimes I try to get thru the day without thinking about Eli.  I don't pretend he never existed, I just simply try to turn off my brain to anything other than what is happening in the immediate moment.

At night I have no control.  The dreams flood me.  All being that night, that dreadful night that a chunk of my heart died with my baby.

At points during the day I even have no control.  My mind takes off.  It goes to my tiny man, it feels every thought and feeling and emotion with him, completely overtaking me.

Sometimes I can distract myself.  Find something else to quickly due, try to flood my mind with numbers, bills, budgets, kids schedule, all the mundane things of life, sometimes I can look around and see something that reminds me that you are with me.

Sometimes, most of the time, it's NEVER enough.  How can it be??

Today I went to visit Eli.  It was just me, so I got the infrequent mommy/tiny man alone time.  I spent a few minutes talking to him.  It used to feel strange talking to him, but now it comes so naturally.

Today was a bit different than normal.  I haven't been to see Eli for 3 weeks.  I just couldn't do it.  There are moments when I'm there that I panic.  I want to rip up the grass and start flinging the dirt as far away as I can.  I know that my baby is right under, that his body is so close to me.  I want to touch him, I want to hold him.  I know that this isn't possible, but it's so hard.  It's so hard to be feet above his body, his beautiful blonde hair, his tiny little hands.  I expressed to Eli my guilt over not visiting him, over trying to not think about him each day.  I talked and cried and cried and talked.

As I sat there silently with my face and arms soaked in tears, the wind all of a sudden came thru.  All 3 of his windmills began to spin, his butterfly wind chime went wild, making so many beautiful sounds, a yellow butterfly flew around the area, and the wind was so much it literally was drying tears along my face.

Sometimes these signs that he's with me make me feel ever so slightly better.  Today it wasn't enough.  The tears poured as my body shook with the sobs.  It wasn't enough.  It will never be enough.  The realization flooded over me that it will NEVER be enough.  The wind touching me, the butterfly flying, the memories (good or bad) will NEVER be enough.  I will never touch my baby again.  I will never see my baby's beautiful face.  I will never hold his hand.  I will never hear him laugh.  I will never stroke his hair and kiss the top of his tiny head as he lies on top of me sleeping.

Forevermore it will NEVER be enough.  I sat there shivering in the 95 degree temps as the realization washed over me.  My baby is gone and these moments of knowing his presence close by will NEVER be enough, yet they have to be because it's all I have.

We are coming into Mitochondrial Disease Awareness Week and the walk is this saturday.  We will be there, as painful as that will be, without our hero.  First time ever.

So many of our friends in the community are posting awareness info, statistics, info segments, etc to help raise awareness.  For me my message will be the same.  It's NEVER ENOUGH.  There aren't enough doctors who get it, there aren't enough hospitals to go to for help, there aren't enough meds, there are no treatments, there aren't enough supports, there isn't enough money, there isn't enough help, people are dying, families are being destroyed, babies and children and adults are hurting and struggling, there aren't enough moments, there aren't enough experiences, first days of school, graduation, weddings, grandkids, memories, pictures, anniversaries, birthdays, THERE ISNT ENOUGH TIME.  My baby is GONE.  So many of our friends are in the same situation.  They have buried there babies too.  There will NEVER be enough for us again.  Please help.  Please donate.  Please spread awareness.

How would you feel if it was NEVER enough for your loved one?  Time is precious, and it's up for so very many of us; to soon.

that's my awareness.  an empty room.  an empty bed.  our empty arms.  a filled coffin, buried in the ground, with only a headstone remaining.  sound harsh?  That's our reality.

Elias "Eli" Richard Tomkins
December 1, 2009 to April 28, 2013
Forever in our hearts
Taken to soon