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!