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

4 months

Today is 4 months.  It seems so unreal.  Still such a blur, yet painful as could be, yet numb.  It's still a confusing mix of emotions.  I miss my baby so very much, and words can't even begin to describe how this journey thru grief and child loss has been.  I simply can't find the words right now to fit the thoughts and emotions.

The rest of us you may ask?

Ariana is busy in 1st grade!!!  I can't believe how big she's getting, so fast.  She's loving school, as always.  She is in class with some of her friends from the last 2 years and many new ones as well.  She likes her teacher and is so happy that her classroom is right by a bathroom again this year!  :)  The first few weeks they did color learning and she had to wear a different color each day.  She really enjoyed this and had a lot of fun matching her hair bows with each outfit.

Benjamin is getting settled into 3rd grade.  His teacher this year seems like a good fit and is pushing to hold Ben just as accountable as all of the other kids in his class.  She's been pushing hard to keep him drinking his water in school and to keep focused.  She immediately put in place all of his necessary "supports" and even came up with some extra ways to extend out Ben's heavy work with some extra "chores" and responsibilities.  Homework will begin this next week and that has always proven to be a tough one for Ben so we are hoping to come up with a good system for that.  Health wise we have been pushing and slightly encouraging to keep him eating and drinking.  Some struggles and I'm guessing he's still not quite perfect as his eyes are still pretty dark, but he's doing better than expected with transitioning back to eating at school.  Michaella works hard to fill in the gaps when he's home of what we suspect he lacked at school.

Jace is settling in quickly into 5th grade!!  He's been doing decent with keeping up with the work, but definitely had a few issues with some things picking up quickly academically.  Jace started band this last week and is hoping to play the clarinet.  He has also decided that he wants to join choir and has his first practice tomorrow.  He's happy to be back with all of his school friends and has been using the phone to chat some.

Emily has quickly adjusted to 7th grade MIDDLE school!!!  Talk about WOW.  I can't believe I have a middle schooler!  She loves switching classes and getting to move about the school.  She quickly figured out her locker, which is a good thing as she has 3 of them.  She is in all advanced classes and the workload has definitely proved to be quite a bit, but so far she's done very well keeping up with it.  She's in choir and auditioning for honors choir as well.  She is also in orchestra (of course) and they also meet 5 times a week.  She's still doing private lessons once a week as well.  It's definitely a lot to keep up with but she's doing well and this is what she wants.  Doesn't leave a whole lot of free time, but she loves music so it's not so much work for her.  She's made many new friends and is loving a larger group of kids to get to know.  Her asthma has been a bit of a challenge but hoping that levels out soon.  She met with the allergist last week and she made a few slight changes to her meds.  Emily goes back tomorrow for full allergy testing, as her doc is considering putting her on allergy shots instead of the 3 oral meds she takes daily.

Lotte is busy adjusting to her senior year in the USA.  She's enjoying her classes and meeting a lot of new friends.  She is playing tennis so this keeps her busy every afternoon and has also been a great opportunity for her to meet friends as well.  This past weekend she went to a Royals game with a few other exchange students.  It was definitely a really cool experience for her!

Me.  Hmmm.  I am off of antibiotics for the first time in months.  They ended up doing a CT scan of my kidneys last week as they were getting concerned after 5 infections.  Good news...my kidneys looked good.  Bad news....my liver didn't.  The urologist sent all of the info to my primary doc, who sent it out to a specialist, who is scheduling an appt so we can figure out what is going on and what needs to be done.  We are trying to process all of this and are honestly not sure how we feel.

Bob has had a rough week and a half.  His GI system is in a bad cycle and they couldn't get it back under control like they usually can with a few med changes.  They ended up scheduling a colonoscopy and EGD.  He had that today.  We now have to wait 2 to 3 wks for the biopsy results.  In the meantime they changed up some meds to see if that helps any.  He had a rougher time with anesthesia and all but is resting this evening.

So that's us in a nutshell right now.

I will get back to blogging more consistently...I promise.  I'm just trying to process so much right now and quite honestly I'm struggling.

More soon.

Always and forever tiny man!

Life Updates

What's going on in our household?

Emily ~ She's been pretty busy babysitting.  She's still busy as ever with her violin practice and private summer lessons.  She singing constantly and can never get enough of music.  She has been reading a fair amount as well.  She's still working on her duct tape projects and has started making some friendship bracelets again.  She's preparing for the start of 7th grade in just a few short weeks.   She has her rougher days where her grief all but overwhelms her.  At her age she's pretty open about simply saying she's upset and missing tiny.

Jace ~ He's busy as always.   Constantly moving.  He's been joining me at the gym frequently and has made some friends there that he enjoys chatting with.  He works out some, sips tea, and visits with friends.  It's his own time and for that he really enjoys it.  He's getting ready to start 5th grade in just a few short weeks as well.  His grief surfaces more at night when he stops moving, sometimes making sleep a bit tough.

Benjamin ~ He's in a mood lately.  He spends most of his days in his footed pj's playing his electronics.  We've had alot of issues with him eating and drinking enough.  Last week we ended up having to take him in and the doc attempted IV access as he was so dehydrated.  We are fighting constantly to keep him drinking as that is top priority.  His doc thinks it's his way of dealing with grief.  Ben is getting ready to start the 3rd grade in just a few weeks.

Ariana ~ She's girly as ever.  It's all princess games, girly dress up, and baby dolls.  She wears dresses every opportunity she gets and believes all of her dolls should do the same.  Her american girl dolls now own more shoes than she does!!  She deals with her grief by talking about death constantly.  She is the first to chat about Eli as though he's coming back any moment, and has no problem openly talking about her memories.  She will be starting 1st grade in just a few short weeks.

Hopkins ~ Our little furry friend is busy as always.  He's almost housebroken and loves staying close to  one of us.  He is a little over 3 months old and loves to run thru the house at full speed.  He can jump on the couch and spends all of his nap times curled up on the couch next to whoever might be sitting.  He loves his toys and has learned to play fetch with a tennis ball.

Bob ~ Busy working as always.  He's on a more stable work schedule so we actually get to see him a bit more consistently.  The stress of his job is definitely still high.  When home he and I have been working out together and going on long walks.

Me ~ I'm here.  I read alot.  I crochet.  I play games with bob or the kids.  I have been working out twice a week with a personal trainer and then as many more times as possible each week on my own.  I'm working on running and hoping to run my first 5K the end of Sept.  It's something I'm finding to really enjoy.  I still can't seem to keep up with cooking, which results in alot of ordering food.  The kids are loving that for whatever it's worth.  I'm learning to "hide" my grief a bit more and make it thru the days.  I can atleast finally give a good socially acceptable answer when the customary hi how are you questions come along.

We are starting family grief counseling classes where we can be around other families who have experienced grief of their own.  We are looking forward to sharing experiences with others, even though it's super nerve wracking as well.

It's been 2 months, 2 weeks, 5 days, 14 hrs, 45 min and 20 sec OR 11 wks 3 days 14 hrs.  We are surviving the best we know how and that's really all I can say at this point.

Life will be changing for us in the next few weeks.  We are excited and a bit apprehensive for these changes.  Either way we know that change is inevitable and necessary.

oh and as always we are constantly walking around eyes open, witnessing our tiny hero in the butterflies that hang all around us, the lone bird who sits on the line outside our house staring at our home, the lone bird that circles over his grave all so often, then glitter we find around, the wind in his chimes, and the rain that seems to always fall at the perfect moments that our souls weep.  Our eyes and ears and hearts are always open for signs of our little man!

Journeying thru Grief

"Time to quit living in the shadow of the dead and get back to the world of the living.  You have 4 other kids."

"Time to quit wrapping yourself up in the death of the dead and get back to playing a meaningful role in the life of the living."

These are 2 comments that were posted on my last post, both by the same person with a fake name and profile.  I really could care less who posted them, but I do care for myself, my family and for ALL the other families who have lost someone close.  This isn't how it works.  These are the types of things that should NEVER be said to someone going thru loss, thru the grieving process.

These comments were posted to my family 9 weeks and 6 days after our son, our brother, our tiny hero passed away in our arms right in front of our eyes.  9 weeks and 6 days after we watched our child go from full of life to struggling for every breath he took to not breathing to his heart finally stopping.  After we watched the doctors work for 14 hrs trying to save our baby as his life slipped away, as the doctors and nurses and our family tried to desperately grasp as our grip loosened.  As we watched them begin CPR, as we screamed for them to stop, as the tubes and wires were ripped off our baby.  As we spent our final moments with our son, our brother, wrapped in our arms in a twin hospital bed in the middle of ICU.  As hrs later we bathed our hero for the final time, dressing him in his beautiful pj's, making sure each hair on his little head was perfect, that all of his lotions and tubies and covers were properly in place.  As we walked out of that hospital hand in hand pushing an empty wheelchair, never to be filled again.  As we walked into our home without our baby, noticing all the quiet empty spots.  As we planned a funeral for our 3 1/2  yr old baby.  As we kissed his cold head and closed his casket for the last time.  As we sat thru a funeral, an event that you always picture for someone who has lived a full life, yet for us was a small coffin, and teddy bears, and children's books, and stories of peek a boo and messing with the darned washer.  As we carried that way to light coffin to it's final resting place.  As they lowered the coffin into the vault and the vault into the ground.  As we watched Ben feel emotions and cry, something we have never seen.  As we witnessed Jace try to jump into the grave because he couldn't handle his emotions.  As Emily had asthma attack after asthma attack as overwhelming tears constantly racked her body.  As Ari kept asking when we got to take Eli home. As I crumbled to the ground because my legs could no longer stand.  As Bob shook with emotions to much for him to handle.  As tears poured down our faces and our friends and families as well.

Do NOT tell us to get over it.  Move on.  Join the land of the living.  What is it exactly that you think we do each day?

We cook, eat, play games, read books, swim, go to the movies, eat out, shop, go to museums, go to the park, workout, run, walk, goof off on electronics, clean house, go to work, babysit, have date nights, have dinner and game night with friends, pay bills, talk on the phone, crochet, practice violin, get together with friends, have sleepovers, fight sometimes, go to time outs, get in trouble, visit with family, celebrate holidays and birthdays, go to doctor appts, go to school events....visit our tiny's grave and mourn and cry and laugh and tell stories and look at pictures and GRIEVE.  That's exactly what we should be doing.  

We have been thru hell and we are doing a damn good job of making it thru each and every day.  A part of us is missing and we are allowed to grieve and live at the exact same time.

Please allow us to grieve.  Please allow other families to grieve too.  Losing a child, sibling, grandchild,  spouse, parent, grandparent, friend, and so many other important people in our lives is HARD.  It's painful.  It's brutal.  Allow the grief process to happen as it happens.  Grief is vital and so is good support.  Be the support that we and so many others on the journey of grief NEED.

Funeral and Burial Video

I have been meaning to share this video for a few weeks but just haven't yet. I'm honestly not sure why.
Like all of the videos it is raw and unedited photos. Our amazing photographer friends both spent the day capturing Eli's funeral and burial. They got the laughs, the tears, and everything in between! They are beautiful!

Be sure to have your speakers on.  For those who attended the funeral it will sound familiar, for those who didn't attend, the songs in this video are the 4 songs we chose for Eli's service.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Passing of Time

I have a countdown timer on my phone.  We have used it for years to countdown to birthdays, anniversaries, and major holidays.  It's something we have always enjoyed to help build and keep excitement for these events coming.  The passing of time has always meant we are closer and closer to the exciting event that we have waited so long for.

I now have the opposite; yet my brain and heart and soul can't wrap around the concept.  The counter on my phone now counts from the date we lost our beautiful boy.  It has NO ending.  Yet when I look at it, when I see a calendar, or hear the date spoken, or when my body simply feels the passing of time I think, ok we made it 8 wks, just a few more that we have to make it and then I get my baby...oh wait.  There is no, and then.  Yet I can't wrap that up inside of me into a package that I can absorb.  I simply can't.

The counter of losing my baby never ends.  How is that?  How can I be expected to deal with this day in and day out with no end?  With no goal of making it thru?  No reward at the end.  No happy moment or time.  It simply counts until the day that I die.  How can my heart and soul be expected to with stand that?

Every morning  I wake and for those few brief moments in between sleep and awake I listen for the swish of his machines, the tick tick tick of the monitor, the slightest crackle of his video monitor.  I expect it to be there.  Every single morning I have to again come to the realization that he's gone.  My baby isn't there.  The never-ending counter is ticking the wrong direction into oblivion.  Every night I go to bed knowing that my baby is gone, yet every morning I must learn all over again that my arms are empty.

It's cruel.  Beyond cruel.  The life that I now live.  Having to relive my baby's passing every morning.  Having to watch the timer count to nothing, when only a click of a screen away it's counting to our birthdays and anniversaries, and holidays. 

I don't have to make it to a certain day.  I have to make it until the day I die and I get to go join my baby.  I don't want this to be my life.  I don't want to wake up each day ready to go snuggle my beautiful boy and brush his blonde hair back from his face every morning with my fingers so I can kiss his little forehead; only to slam into the brick wall off child loss so hard that it takes my breath away.

This isn't the life that I asked for or imagined. 

I wouldn't give up the time I had with my Tiny Warrior for anything, but this pain is one that I can't imagine carrying for the rest of my life.  I can only watch the counter tick into oblivion, and do my best to keep up with each and every day.

The passing of time hurts so very much. 

tick tock tick tock

Smiles and Laughter

I NEED to make sure that everyone understand that it wasn't all tears.  We smiled.  We laughed.

These were right before the service, in the family room at the church that was set aside for the immediate family and close friends.  I honestly don't even remember now what was said, but it was something about Eli and we all just laughed and laughed.

This was as we were getting ready to walk into the service and the wrong song started playing, It was the "Signing Time with Alex and Leah"

This was during the service.  Pastor was talking about the ornery side of Eli.  It was all about Eli's troublemaker times and he combined and used all the little stories from Eli's life that we all sat around the living sharing one afternoon during the week before.  It was am amazing time a midst a week of turmoil.

This was during the service when Pastor talked about how very much Eli loved  playing peek a boo!!!

This was after we carried Eli's coffin from the service to the hearse.  Mike (Dr Lewis) told Bob that he was so strong. Bob said heck no.  Mike said you should win an Emmy your acting so strong!  

This was graveside.  I wanted us to hold Eli one last time, the 4 of us.  It was me and Bob, Lauren (Eli's primary nurse) and Mike (Dr Lewis, Eli's primary doc).  I commented that it was our last time to carry the weight of Eli together.  I imagined it weighing more and said so.  Mike looked at Lauren and I and said "Did one of you miss a feed?  Didn't you run enough IV fluids.  Must be why he lost some weight."  It was exactly what the 4 of us needed at that very moment.

As Eli's coffin was set atop the vault, Emily could no longer control her emotions, which means she couldn't control her asthma either.  I did what I had done countless times that week.  I started singing and signing the ABC song.  This was Eli's favorite song and the first one we ever learned to sign.  He would clap and sign "more" repeatedly for us to do it over and over.  All week it worked to calm all of us down.

This was the balloon release.  Eli's mickey balloon and a few others got stuck into the tree, because of the wind that day.  Just a few weeks before the kids frisbee had gotten stuck in the and Michaella and I pulled our van under the tree climbed on top of it with ladders and sticks and brooms and finally got it out.  Eli had stood in the doorway watching us out the window clapping and cheering the entire time.  Bob was less than thrilled with us when he got home, but once we told him how Eli clapped and cheered he couldn't help but smile.  Eli got us out of so much trouble that day!  

As a side note Eli's balloon got free somehow after our family had left.

Visiting with family and friends afterwards talking about Eli, and random other moments of laughter during it all.

I guess my reason for sharing these is so others know that we have found moments of laughter and that it's ok to laugh.  We sure did.  

There were many evenings during the week before late at night where the kids were in bed and all of us adults sat up getting our "homework" done each evening.  At some points someone would say or do something and we would all laugh so hard until tears were pouring down our faces.  Moments that I can't even remember having in the last few years.  At points we felt guilty and at points it felt so good to laugh.  

It was needed.

I just wanted to share that it wasn't all tears.  Our little man was ALWAYS smiling and there were times where so were we.

and wow do I miss his smiles.