Tuesday, December 31, 2013


2013 has robbed me of my very breathe, has broken my heart into a million pieces, and has shattered my soul.  I can't wait for the year to end, yet I'm terrified to never again live in a time that my baby took a breath.
I came into this year a very different person that I leave it.

This year has seen brain surgery, many hospitalizations, the death of our beautiful boy, the burial of our beautiful boy, the loss of my husbands job, our finances in shambles as we struggled to pay for a funeral, our move home, and the struggles of our oldest 4 as they grow and learn to deal with grief.  This is a very vague summary of what we have seen this year, but it hits the highlights.

Again I stand by what I told the doctors that night as my baby lay dying in front of me.  I told them, "I will die with him, I will take my last breath as he does.  I will die too".  I did.
I died that night at 4:08am, I took my last breath.
My heart, my soul, my spirit were crushed.

I am still drifting, still gasping for air, still trying to find a place to grab hold, trying to find a sliver of who I am.
It is beyond hard to find a person in the ashes, to rebuild from such damage.  The strength and willpower and determination that are needed to piece together the broken pieces is simply to much, right now it's not something I have.
The pieces won't go back together.  They no longer fit.  There are to many shards and splintered pieces, to rebuild.  I am forever damaged.

My hope for this year is to find something.  One piece that I can grow and latch onto and cultivate.  One piece to begin building around.  One piece of who I was, to begin building who I will be.  That one piece will still be broken, damaged, tortured, but my past must move forward with me, as there is no other way.
That one piece must be memories, my love.  The most painful piece to carry forward, but the one piece that I could never bear to leave behind.

I want to take this moment to thank you all for hanging in there with us during this most painful of years, 2013.  I can't tell you how blessed we are to have you all in our lives, as I truly can say I wouldn't be where I am now if it wasn't for so many of you.  We have gained friends, lost friends, grew friendships, and changed friendships.

I want to thank you for bearing with us, for allowing us to grieve, for supporting us no matter what.  Very few have tried to change the course of our grief, many have fought for our rights to grieve, and almost all have held us up in our grief.

I would love to tell you that we are ready to take hold and do this on our own, but I'm not there.  I'm trying.  I truly hope that you see that I'm trying so very hard.  I'm searching for something to grab hold of, something to keep me a float.  There are days I think I'm almost there, days where I almost look real and whole and alive, even though I'm dead inside.
I promise to keep fighting, to keep moving forward.  I will rebuild.  I will.

Lastly thank you for loving us, for loving our tiny man.  We never doubted how loved we were and how loved Eli was, but seeing the love and support these last 8 months has been overwhelming.  We know our tiny man lives on in so many hearts around the world.

So here we sit.  There are hours left of 2013.
My baby has been gone
8 months, 5 hrs, 45 minutes, and 4 seconds OR 35 wks, 2 days, 6 hrs.
The rolling over of a year won't stop that clock.
For good and bad the year has ended, and the new year is unpredictable.  We sure learned how life can change in a single breath this last year.
I can only hope that this new year is gentler, we can't handle anymore.

It's time to rebuild.  It's time to find something in the ashes.
2014 here we come; be gentle to our family and to our Mito community.

Fly high tiny man, but always stay close.
Always & Forever

Sunday, December 22, 2013

Moment by Moment

It's the final stretch before Christmas.  For our family this means no longer months and weeks to prepare.  We are no longer taking it day by day.  
We are down to moment by moment.  What can we do to hold it together for that moment in time?  
It's been hard.  
It snowed yesterday.  I clearly remember this past January.  We had a big snow storm after my brain surgery.  I remember watching my tiny man watching out the window as it snowed.  He watched his siblings play and got so frustrated that he wanted to go out too.  Finally his nurse bundled him up in so many layers and out he went.  Eli got to be outside in the snow.  Who would have known that would be his first and last time to ever stand and walk in snow.  He was so excited and smiled his big beautiful smile.
There was only 1 other time he was ever in snow.  When he was 1 yr old and was so sick.  We were hospitalized and it was the first time the doctors began talking to us about quality of life.  We pushed so hard and finally they agreed.  We put layers of clothes on Eli, bundled him up with so many blankets, but on a face mask, and laid him in the red hospital wagon.  Of we went.  He spent 3 whole minutes outside looking at the snow and even touching a small handful.  
It again snowed on our private family visitation day with Eli at the funeral home.  We got to spend hrs together as a family, talking to him, taking turns alone working on the sticker book that he never got to do, and relishing the final times to ever touch our baby.  It snowed that day.  It snowed on the van, the snow covered the tulips in front of the funeral home.  It had to be our tiny man.
So here we are days before Christmas with snow.  The kids wanted to go out so out we went.  Bob and the kids ran and had snowball fights, made snow angels and laughed and played.  I took pictures and drew Eli's name in the snow.

My heart was breaking.  Everything reminds me of him.  Everything reminds me of the emptiness now.  Everything reminds me that this will never end, that this will be the rest of our lives.  I grieve for it all.

After everyone warmed up the kids were needing to keep moving.  So that we did.  Down to the pool we went.  

These final days have brought about a stillness over our house, an anxiety in the kids, the missing piece is so apparent.  

I have been constantly amazed at the strength of our kids and at how very clearly they grieve.  It is different then how we grieve as adults, but boy do they grieve.  They feel the emptiness.  They feel the loss.  

The days building up to Christmas this year haven't been the same.  There are a few things they have insisted on to make the holidays feel like normal, mainly a Christmas tree, but other than that there hasn't been the Christmas push.  I long for it be over, even though I know it won't truly be over.  Never again will it be the same.  I grieve for what the older 4 have lost.  They haven't just lost their brother.  Their hope has been crushed.  They have learned how quickly life can change.  How cruel the world can truly be.  They have lost the childish belief in all things good.  They know it simply isn't so.  I grieve for the innocence of my children.  

I grieve.  I grieve for it all.  I grieve for what was.  I grieve for what never will be. 
It is overwhelming, all consuming, exhausting.  I'm exhausted.  I'm broken.  I am not strong. 
I had many a long talk with one of my best friends this week and she said the words I've needed to hear for so long.  She told me that she sees me, she sees that I'm broken, that it's ok.  She said she sees me, and I truly believed that she meant it.  It meant the world to me.  Such simple words, but knowing that she truly SAW me right were I was, broken and grieving and lost.

So here we sit.  Moment by moment.  Playing games, watching movies, playing in the snow, swimming, baking, drawing, and anything else we can scrape together to keep us moving forward, to keep us busy, to pass the time.  For we know in a few short days there will be no denying that it's Christmas day and our baby is GONE.

Tuesday, December 17, 2013

Rough Week

I'm struggling this week.  I've been in a bit of a slump and can't seem to pull myself out of it.  Christmas is so close.  It's really hitting me hard.
To top it all off the boys are a mess.

I will start with Jace.  He's continuing to have problems sensing when he's losing control of his temper and stopping the explosion.  Yesterday at school he was asked by the teacher to sit down and he refused.  He was asked again and was verbally aggressive with his refusal.  The teacher said sit, or I call the principal.  Jace apparently sat down very angrily and began muttering very mean things under his breath.  The assistant principal talked to me this morning, letting me know that he would be pulling Jace out to have a long talk and that Jace would be punished.

Benjamin.  Oh my little Benjamin.  I don't even know where to begin.  Our school in Overland Park didn't hold Ben accountable to the same standards as the other kids.  He didn't have to do his work, he was allowed to be up and moving and to roam around.  They simply didn't push him to keep life with Benjamin easier.  Our school here will not allow that and expects Ben to do his work, be with the group, and be respectful and safe.  We are beyond thrilled that this is what they expect of Benjamin.  Problem is Ben isn't thrilled.  He's struggling.  We have now had 3 IEP mtgs since moving here.  Each of his day reports this last week or so have showed major issues.  Benjamin is hitting, pushing, stealing, arguing, yelling, and refusing to do work.  Yesterday sheet came home showing that he had hit and/or pushed 3 students as well as his para.  The IEP meeting today discussed alot of these changes with Ben.  

The decision has been made to regress back to a full visual TEACH schedule.  We will use pictures and words and they will be mapping out every aspect of his school day.  This used to work well for Benjamin and with the big struggle they feel that it is worth a try again.

Secondly they are going to start scheduling sensory breaks and see if they can find a schedule to have him going BEFORE he actually needs the break.  Once Ben hits his limit, he hits it hard and fast and it's hard to back track.  So hoping to get ahead of it and keep sensory breaks often enough.

PT met with Ben, and evaluated him for the concerns with stairs.  Currently the hope is that Benjamin simply needs more practice going down stairs.  We will begin working more on stairs and see if that helps him get comfortable with it.

OT also has done some further evaluations.  She spent a bit of time watching Ben use a pencil and going over writing samples.  It doesn't appear like the issue is specifically with his hands, although he is a bit awkward holding the pencil.  He does have issues writing and forming letter and number shapes.  He does all of his writing from the bottom up and this causes some problems.  It is also hard for him to focus long enough on his writing so it gets very slanted and sloppy.  They have decided to keep working with him on writing but starting to push him towards keyboarding.  They will begin having him practice more, and the long term hope is he will pick it up and be able to do a larger bulk of his work by typing on a computer screen instead of having to use pencil and paper.  Currently Benjamin isn't interested in typing either, as he just wants to play games on the computer.  It will be a slow process.

Next Benjamin is struggling on the bus.  This last week the assistant principal even had to get on the bus to deal with him.  It has been decided that Ben is struggling to much on the bus for that length of time without any direct adult supervision.  The school has decided that they will be changing Benjamin's busing and putting him on a special needs bus with para supports.  They are hoping to have this start tomorrow morning.

Not even 2 hours after I left the school, my cell phone rang.  It was the school's principal.  Benjamin was in his office.  Ben's para had taken Ben for sensory break and had a list of 3 activities he was to do.  Benjamin didn't want to, he only wanted to play with the ball.  She told him no.  He threw it at her and took off running.  As she chased him thru the school he yelled at her to "fuck off".  He was finally captured and taken to the principals office.  He informed the principal he learned this from Minecraft videos.  (We have known for some time about the minecraft addiction.  Ben is literally addicted to it and goes thru full withdrawals when it is taken away, even if only for 30 minutes.  We are in the process of slowly weaning off of it but it's not an overnight thing)

The school had the principal, social worker, counselor, and assistant principal in there dealing with Benjamin.  It was decided to keep him in the conference room for lunch and recess and attempt to get some things organized and such before trying him back in the classroom this afternoon.  We are running out of options for Benjamin, and I know the conversations that lie ahead.

The above is just the boys.
To top it all off one of our dear family friends has found out her cancer is back and is having surgery on Friday.  I will be there with them at the hospital.
I'm dealing with some depression and tons of grief as I struggle to make it thru the holiday.
The girls are busy as heck with it being the last week of school.  We have concerts and lessons and practice and parties and so many other events we are trying to keep up with.

I'm trying to stay focused, but it's slipping.
I miss my baby.  I miss one of my best friends.  I miss what life used to be.  I miss being happy.  I miss the smile on his face and the old soul look in his eyes.  I miss the medical community that was my family.  I miss feeling alive inside.  I miss me.

So here I sit waiting for my boys to come home in 45 minutes, unsure exactly how I will deal with them.  Bob and I have decided that they will be told their grounding begin immediately and until he and I have a chance to sit down and talk we do not know how long it will go and what may be added to the electronic grounding.  I'm terrified to be the one to tell them this as I know it will send Benjamin into a tailspin.  Last night he lost his ipad time (30 minutes) and he screamed for over 2 hrs.  It's going to be a long night, and the cherry on top is Emily has her Christmas orchestra concert tonight!

Cheers to the holidays.  Get it done, get it over with, and get the heck out of here till next year; because I am sooo done!

Friday, December 6, 2013

Merry Christmas 2013

In light of the holiday season, finances and time we have made a video Christmas card! Enjoy!

Sunday, December 1, 2013

Birth and Death

The day Eli was born we found out that it wasn't just his kidneys that were affected and that there was ALOT more going on and that we had a sick little boy.

 On his 1st birthday we learned that his vision and hearing were severely affected and he failed his sleep study showing that he needed increased help breathing at night as well as day time.

On his 2nd birthday he was incredibly sick and we were fighting for our lives to avoid a trach.  He was struggling deeply with secretions and breathing.

On his 3rd birthday palliative care joined Eli's team and the sicknesses were taking a toll.

On his 4th birthday we can only visit his grave as our baby is GONE.

I am unsure how many times over the course of the years that we were unsure if he would make it thru the night.  The words "quality of life" were mentioned more times than any mother should ever have to hear.  Progression was visible and measurable.   We lived in a hospital more than at home.

Yet my Tiny Hero thrived.  He was always up for the challenge.  He was so strong and such a fighter.  He didn't care what the doctors and experts thought or expected.  Eli carved his own path thru this disease, thru the world and thru our hearts.

Here I sit exactly 4 years later remembering in detail the day my tiny man was born, and remembering in the detail the day he died.  This shouldn't be.
There should be wrapping paper, bows, gift bags with tissue that he can easily rip open.  Giggles and laughter.  The kids singing happy birthday.  Cupcakes with frosting.  The nurses turning their heads as tiny drops of frosting is placed on his lips.  His little "cake" should be out with the "candles" lit up.  New toys for him to explore, a huge stacks of books for him to read.

We knew we needed to do something.  A bit to honor Eli and honestly a bit to keep us moving and not having to much down time for our minds to roam.

I have been participating with "I Run 4" and "I Run in Remembrance" Groups so we decided to head out for a walk in memory of Eli.  We decided that we wanted to do 4 miles since it's his 4th birthday.  All 6 of us headed out to the park, and walk we did. We ended up "donating" 28.2 miles total in honor of our little man.

Now I'm at the end of the day feeling completely spent and wondering now what.  Thanksgiving was tough.  Then I was immediately thrown into Eli's birthday.  And Christmas is right around the corner.  I feel drained and have nothing left to give.

My brain is struggling so much to wrap around the fact that he is GONE.  I never knew a birthday could feel this way.

I want to end with a quick thank you to our friends and family who have been checking in with us and letting us know how much you all care.  I apologize for not responding to each and everyone but please know that we as a family all read your comments and messages and emails!  They definitely warm our hearts!  Our little man was amazing and touched so many lives and we are so honored to have been his family.

Elias "Eli" Richard Tomkins
Our Tiny Hero
December 1, 2009 4:02pm
April 28, 2013 4:08am

Happy 4th Birthday My Beautiful Boy!!!
You are forever missed!

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.

Sunday, October 20, 2013

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.

Wednesday, October 16, 2013

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.

Tuesday, October 8, 2013

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!!

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!

Monday, October 7, 2013

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.