Monday, September 30, 2013


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.

Monday, September 16, 2013

Money, or more accurately the lack of It!


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!

Friday, September 13, 2013

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!

Wednesday, September 11, 2013

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