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 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. 

Wednesday, October 2, 2013

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.