Flickers of Light

I haven't blogged in months.  For quite a bit of that time I was in a pretty deep funk.  The holidays were hard, really hard.  The longer it's been since losing Eli the harder it seems to be.  I really sank into a pretty dark hole, and the world had moved on and didn't really seem to notice.
I tried my hardest to engulf myself in life and did a pretty good job of faking it when I needed to be out and interacting in public.
I finally made the decision that I needed to go back to work.  I started casually looking for a job.  Way tougher than I expected to find something to still allow me to be a wife and mother, and since I have been out of the work force so long.
I applied for a position, was called that afternoon, interviewed 2 days later, and started 3 days after that.  It couldn't have been quicker, or a better fit for me.  My job allows me to use my medical knowledge, experience, and empathy that I have for those in extreme medical situations.  The hours aren't perfect, but they work.  I enjoy it.  I enjoy feeling like I am doing something.  It's a glimpse of who I am outside of my husband, my kids, and especially my role these last years of an extension of Eli.  It's definitely been an adjustment for our family with me back at work full time, but everyone seems to be settling into a routine; with minor life adjustments of course.
The kids are SOOOO busy and growing and thriving.

Ariana ~ Ari celebrated her 8th birthday in Feb and is wrapping up 2nd grade already.  I can NOT believe how big she's getting.  She is still a Daddy's girl and a Grandpa's girl through and through.  They are incredibly protective of her, with her being the baby and all, and neither of them is ready for her to keep growing so fast.  She is growing into such a strong independent little woman.  She is rough and tough and as brave as could be, yet still maintains her princess side.  It's so much fun to watch that balance.  She lives to be outside with her bike and friends, and never wants to come in for the night.  She's still our social butterfly and knows every child on our block.  She's doing amazing in school, as always.  It's such a breeze for her.

Benjamin ~ Ben is wrapping up 4th grade, and will be 10 (double digits) in June.  Next year will be his last year in elementary school.  He's going through some big changes right now.  He's noticing some feelings and emotions and has really been watching how some friendships form and such.  The bullying incident really opened up Ben's eyes to the world around him.  He's said some things that show he's noticing and thinking ahead to middle school coming up in another year.  He's still a little jokester and loves telling jokes.  He's really going through a major tactile stage and that's been a challenge.  He wants to touch and pet everyone he comes in contact with.  At 9 yrs old we have just begun the toddler stage of exploring physical boundaries and such.  It's tougher though when hitting this stage at his age.  He's as obsessed as ever with his electronics and has learned the art of hacking.  That's been fun...haha NOT.  He's been spending quite a bit of time outdoors as well and has made a few friends in the neighborhood.  He's doing ok in school, it really just depends on the day.  He still working a lot on his typer, although doing more writing than ever before.  The switch to constant 1 on 1 support at school was the best decision we could have ever made.

Jace ~ Jace is wrapping up 6th grade (his 1st yr in middle school) and will be 12 in August.  He is situating better in school.  The para supports and SPED classes have made a big change on his academics.  He's still playing the clarinet in band, although his love is choir.  He has been invited into the 7th grade choir for next yr and is excited about that.  He spends as much time as he can outdoors as well.  It's been a tougher situation since the bullying incident in December, as that has definitely changed his relationship with some of the neighborhood kids.  He LOVES nerf guns and has been earning money so he can grow his collection.  He spent quite a bit of time shoveling driveways over the winter months.
An update on the bullying situation : Our next court date is April 6th.  The Protection Order has really helped at home and school.  The police have not had to be called out since.  After the stalking incident at school, they also made big changes and of course have copies of the protection order.  It seems to have made a big change for Emily and Jace.  We are anxious to see what happens next at court, and as always will update on the Project Jace page on FB.

Emily ~ Emily is wrapping up 8th grade (GRADUATING from middle school, HOLY YIKES) and is 14 yrs old.  I don't even know where to begin with Emily.  Let's see.  She just finished this season of Wichita Youth Symphony and will be audition to move up to the next Orchestra for the next season.  They had an amazing season and she of coursed love every minute of it.  Both concerts were amazing.  She continues to play in the church orchestra every Sunday and enjoys it.  It also gives her great stage practice as well.  She of course plays in the school orchestra as well.  She has Pioneer League singles competition coming up as well as Pioneer League Orchestra state competition.  She will be playing a solo in the state competition.  She just finished her school talent show, playing her competition piece for practice.  This Sunday she is visiting nursing homes for a recital, again for practice.  She has a school event at a state college here in Kansas, with classes and an Orchestra concert coming up next month as well.  She continues to attend private lessons 2 times a week for 3-4 hrs a week.  She is also in choir and loves it.  Last year at singles competition the colleges began speaking to her asking her where she was thinking of attending.  She has really spend this last year wrapping her head around what she wants and where she wants to go.  She has made the decision to leave Kansas to attend college to follow her music career.  She starts high school next year officially but will be taking classes over the summer starting this summer (and every yr there after for high school) so that she can be fully enrolled in Orchestra and Choir year round.  She is taking careers this semester and they plot out her next 6 years...4 of high school and her first 2 yrs of college.  She is spending time researching colleges on line and really checking out their music programs.  We are constantly in shock and awe that we are really here, that she is really growing so quickly and that these are the life decisions that lay before us.  It's surreal.  She will learn to drive this summer and is super excited about that as well.  At this point she hasn't had another seizure since the one in Dec so they think there should be no problem with her driving come her 6 month point.  She's a Daddy's girl as well, and he is a bit freaked out by how quickly high school and college are approaching.  My dad is in denial that high school begins next yr.  LOL.  Emily's life revolves around music, but she's found some time to carve out for sleepovers, friends and biking.  She's been taking a weight lifting class at school this year and has definitely found a passion in the weight room.

Bob and I ~ Busy as always.  Heck just keeping up with the 4 kids keeps us running.  We just celebrated 7 yrs on Mar 25th.  We can't believe how much time is passing and how quickly it's going.  We don't even want to think about 7 yrs from now.  Our kids will be so big and we aren't ready.
January brought my 2 yr Neurosurgery anniversary.  I went through a whole ton of testing at the end of last year.  It brought about a lot of answers and multiple questions.  That testing did confirm that the memory and fine motor issues are permanent and there will be no reversing them.  In Feb I did take myself off all of my meds and it was the best decision we could have made.  I have regained some feeling and it seems that some of the nerve issues were brought on by the meds.  We are thankful for that.  No matter what we have all just had to learn that we must accept present level and be happy with it.  Most of the time we laugh about the "quirks" and compensate when needed.

April 28th is fast approaching.  2 yrs since we lost our beautiful little boy.  Everyone has taken the day off and we will spend the day honoring Eli.  The kids have already been planning our 2 mile run that day and are looking forward to start gazing on the hill and again finding Eli's star.  I can't believe that we are almost at 2 yrs.  My heart aches.

We are taking our first big family vacation this summer, all 8 of us.  We are leaving on Memorial Day. We are heading to Branson for 5 days.  The kids are beyond excited and the more they google the more excited they become.  Ariana keeps dancing around the house yelling that we are going on vacation.  We have never taken a multi-generational family vacation.  My parents and I vacationed on Table Rock Lake and Silver Dollar City many times as I was growing up.  This makes it even more exciting to get to take the kids there.

So many others things are happening and going on in our lives but it's simply to much to type it all up.  To much time has passed since I blogged last.  Many of you follow us on FB so you are more up-to-date on day to day life.

I will do my best at keeping things better updated.  It's just been a long dark road to get to where I am at right now and writing wasn't something I was able to do there for quite some time.  I'm not for one moment claiming to be out of the darkness, I think after child loss it's simply not possible, but there are flickers of light.

We are feeling some contentment in life.

Cold and Warm @ Target

Yesterday was 3 weeks until Eli's 5th birthday, yet we only got to celebrate 3 with him in our arms.
Today it's all of a sudden turned cold.  The leaves are falling off the tree.  There is talk of snow.
Winter is right around the corner.  Eli loved the cold.  It was his time of year.
Thanksgiving.  Eli's birthday.  Christmas.

I've been really struggling the last few days.  Hating the world.  Hating how cold and cruel and how quickly life can change.

Today at Target the cashier and I were laughing about how cold it was and how we were trying to stay warm.  All of a sudden Eli flashed through my mind.  I smiled at the thought of us all bundled up staying warm and Eli spending winter in his shorts and tshirts happy as could be.
I finished paying and walked over to Starbucks and bought the young cold casher a gift card.  I wrote a little lighthearted note about staying warm and enjoying a few hot chocolates on breaks.
Flipping the envelope over I wrote "Pay It Forward. Eli's Journey".  I walked over, waited until she was done with her line of customers, set it down for her and walked out of the store with a smile on my face and my heart little bursting with warmth.
Tears poured down my face the entire drive home.

As I walked out of the store I could FEEL Eli.  He was there with me.  There was NO doubt in my mind.

These last few months I have gotten away from doing these little acts of kindness for Eli.  I have fallen a bit into daily life, just trying to get through each day.  I have also felt like I haven't FELT Eli and that has terrified me, like I was losing him, like little pieces of him were slipping from my memory.

This simple interaction at Target, the smile of the young cashier, the joking about the cold, the thoughts of the warm hot chocolate, the gift card, the cold.  I NEEDED this.  I needed it to bring me back to where I needed to be.  Eli gave me what I needed and I felt my baby again.  This is where I need to be and this is what I need to be doing.  This is what my holiday season will be.  Eli and I will embrace the cold and bring smiles and warmth to the least expecting.

Back of the Pack

I'm a back of the pack runner, way back.  I feel like us back of the packers are forgotten.
We reach the finish line and the only ones to cheer us in and congratulate us are the few family and friends who chose to wait.  The food and drinks are depleted.  The freebies and goodies are all picked over.  Most of you have left, never even realizing that some of us are still out there working our way mile by mile to the finish line.

I want to paint you a picture of just who this back of the packer is.

15 knee surgeries.  20 female surgeries.  4 miscellaneous surgeries.  Brain surgery (Jan 2013).  Chiari Malformation.  Metabolic Disorder.  Suspected Mitochondrial Disease.  Yep you also guessed it, I'm "that" fat girl.

Wife.  Mother of 5.  3 special needs children.  I held my 3 1/2 yr old son while he took his final breathes in my arms (April 2013).  Watched as his coffin was lowered into the ground.  I continued living, breathing, moving forward.

After my son passed away I started walking because I needed something, anything to keep me moving forward; to help me pass the time.  At some point I thought maybe I could run to the mailbox or the corner.  This slowly progressed.

I heard about a HM on May 4, 2014.  I knew that had to be my first race, ready or not.  May 4, 2013 is the day my son was buried, that race would be for Eli.

It was a brutal race.  I wasn't ready.  I pulled a muscle in my leg at mile one.  I fought for every single mile to the finish line, never stopping, never taking any of the outs offered to me.

It was a struggle to get back to my training.

My mottos kept me going.  "The cure for pain is in the pain." and "May the pounding of your feet crush the broken pieces into something new."

I have increased my running distances.  I can run miles now without stopping.  Slow but steady miles.  My pace hasn't increased.  My distance is slow to increase.  BUT I'm still doing it.

I am a PERSON, a history, a story, a journey.  I have fought for every mile just like the front of the packers, the speedsters.

When you pass us cheer us on too, smile, wave, and respect us.  Don't make snide comments, don't say we don't belong, don't whisper and laugh.
Sometimes be there at the finish line cheering us on, for our hard fought win.

We are the back of the packers, we are athletes, we are champions, we are RUNNERS!

Awareness Week

It's Mitochondrial Disease Awareness week.  It's the 2nd time we have had to live through this week with out our little boy.

It's been a hell of a time these last 2 weeks for our family.
Benjamin ended up hospitalized 2 weeks ago here in Wichita.  We were there for 5 days.  They ended up dropping and NG and we started tube feeds to boost his nutrition.  At that point he was sent to KC where we were inpatient 7 days.  They did all of the GI testing virtually possible, expecting to find nothing medically wrong.  Surgery was scheduled for Monday to place a Gtube.  Then with one biopsy result everything changed.  Benjamin's results should probable for EoE .  WOW.  All plans changed.  Protocol dictates the Ben does an 8 week trial of a medication, although research and the doctors aren't confident that it will make a difference.  Ben will be back at the end of the trial to re-do the scopes and biopsies.  The possibility still remains that he will have the G placed at that point.

It was an emotional 7 days.  Benjamin was placed in Eli's old room, the zebra room.  Looking out his door and across the unit, I could see the PICU room where Eli passed.  He had Eli's nurses, docs, etc.  The playroom was FULL of toys with Eli's donation stickers and Ben loved to search them all out and smile at Tiny's picture.  Ben had some major panic moments, screaming that he couldn't breath and that he would die.  It took a lot of time and an amazing team to keep him calm and work through this stay.

We got home late yesterday and we are working to settle back into normal life for a little while.  Whatever that may be.

So it's Mito week.  How do we feel?  Broken.  Awareness seems strange to us.  We are painfully, brutally aware.  We have been open and honest during our entire journey, doing everything we can to spread awareness.  How do we bring more awareness?  I can't answer that.  I can't understand how Mito isn't something known by every person walking this world.  There are children and adults struggling, fighting, dying EVERY single moment of every single day.  There are families crumbling under the weight of Mito; emotionally, mentally, physically, socially, and financially.

There is NO cure.  There are NO treatments.  All we can do is manage symptoms the best we can, keep exposure to every day illness to a minimum, balance medications, attempt to maintain quality of life, scream to the heavens and the universe for help, and in those final moments all we can do is scream and cry and beg and plead and bargain with our very own life for theirs.  Does that sound like something you want??  I didn't think so.  So please please help us.  Help us make Mito a word that EVERY ONE knows.  Help us raise money, help us find a cure; before it's to late for someone YOU love; don't think this can't happen to you...because it CAN.

Goals

Goals.  Most of us have them.  Sometimes we meet them, sometimes we don't.  Sometimes we forget we even set goals days later.
That used to be me.  I would be like, hey here's my goal, lets do it.  Then I would rock that shit for a few days until life happened and it slipped away until I forgot I had even set the goal.  Then when I would remember, if I did at all, I would reset and push the goal date out farther and farther.  I would always have a justification for myself of why I got sidetracked and of why it was ok to push the date off farther and farther.

Finally I said enough.  This cycle had to stop.  I was simply setting myself up for failure over and over again.

I joined a monthly mileage group, I started posting every single mile on a document for my online running group to see.  I started telling people what my goals were.
I decided what I needed to do to accomplish that goal and I made it manageable, a month at a time.  Each month I stair stepped it up a bit from the month before.
I held myself accountable, and the public posting helped others hold me accountable as well.

I'm not saying setting a goal has made it easy, I'm not saying it's brought perfection.  I am saying though that for the first time I'm really truly reaching my fitness goals, sometimes even smashing them.

This month I won't reach my utmost goal.
July my goal was 75 miles.  I reached 98.  For August I joined the 80 mile goal group, but set my own personal goal for 100.
My goal was also to continue my running streak.
Today is RSD (run streak day) 60.  My streak is alive and thriving.  My mileage goal is struggling.  I am currently at 75 miles for the month, with only 6 days remaining.

My fall Sunday has really affected my hip.  Today was my doc recheck.  My head is still struggling some with lingering dizziness and pain.  My hip is the worst.  She said there has been trauma too it and it's going to take time to recover.  She gave me a pain/anti-inflammatory shot and will be putting me on meds the next 2 wks to help with hip recovery.

I'm struggling with the feelings of failure for not reaching my goal for August.  I KNOW that this isn't an excuse, I know that I didn't just get busy or lazy and put it off.  I KNOW that this is beyond my control.  I KNOW but it doesn't make it easier for someone who has failed so many times, for someone who knows what it feels like to fall short.

I will reach 80 miles for August.  I will keep my streak alive.  I will rock September and my triple digit goal isn't lost, just postponed.
This isn't a failure.  This isn't a loss.  This is an athlete with an injury and NOTHING will sideline my goals, my dreams, my successes.

What are your goals?  What have you found to hold yourself accountable?

The Fall

I feared it for months after brain surgery.  I have avoided activities that presented increased possibilities. I have been careful, sometimes fearful.  We have heard the warning and lectures.  We have talked to the kids, they know exactly what to do if it ever happened.  All of our friends and family know how bad it could be.  We have joked and talked about designing helmets.  Yet it NEVER happened.  

Until it did.  Sunday at 8am I fell.  I slipped on the wood floors and fell down the wooden stairs.  It wasn't because I wasn't being careful.  It wasn't because I was in a hurry.  I wasn't participating in any dangerous activity.  I wasn't taking risks.  It happened in a blink of an eye.

I mostly remember the fall.  I remember my husband come running from the other room.  I think I said I don't know if I hit my head.  The next thing I remember is my husband over me saying baby you have to open your eyes.  Baby come back to me.  He told me I had passed out and had a seizure. 

It was a blur.  Off to the hospital.  I have never felt so awful.  I was terrified and didn't feel well at all. 

All of the questions and information being given to the nurses and docs.  Immediately rushed through triage, monitors all over me.  Questions about living wills and power of attorney.  CT scans.  On and on.  

Finally the CT was back.  No brain bleed.  No massive damage.  We do see the post operative brain changes, but don't believe there is any new damage.  Concussion, bruised/sore elbow and pain down my side and hip.  

Then here it comes.  The brain lecture.  Being told how I have to be careful, how I have to consider my activities, how I have to protect my brain at all costs.  The questions about if a helmet has been discussed and considered.  On and on.  Then he says it's not that we don't want you to live a full life, but we need to protect your brain.

Basically we want you to live a full life, but we don't want you to walk from one room to the other because you MIGHT fall.  So sit on a padded couch with pillows all around you so we know your brain is safe.

As I sit here today recovering I can't help but think about it all.  

I don't want to be that person, that patient.  I don't want to live in fear of what could happen.  I don't want to sit on the sidelines watching life pass me by, because something could happen.  Something can always happen.  

I don't want to be seen as that sick person.  I don't want to be the medically complex one.  I don't want to be treated like a breakable delicate flower, that will crumble if touched.  

That's not me.  But to them it is.  

I will forever live a balance of my medical file and ME.  

My husband has been amazing.  He has stood by me through 6 surgeries, learning to walk again, countless specialists, numerous new diagnosis', medication trials, pain management, pain unmanaged, daily life with neuro issues, and everything in between.

I can't imagine the balance it is for him too, the medical me and ME.  

I want to live my life without the medical side following me around, but that's simply not possible.  I will continue to live as I have.  I will be careful, but not so careful that life passes me by.  

And damnit if I ever need a helmet, that shit is getting decked the hell out, and I know just the person to get it done.  :)

Miles

Last week I ran 1.55 miles without taking 1 single walk step break.
Saturday I ran 3.1 miles without taking 1 single walk step break.
Last night I ran 5 miles without taking 1 single walk step break.

My strength amazes me.  The things my body is able to do.
18 months ago I was barely able to take a few steps with the walker after brain surgery.
15 months ago I had no desire to take any steps without my baby in my arms.
Now I'm running.  I'm running far.  I'm running hard.  I'm breaking PR's.  I'm pushing myself physically, mentally and emotionally.

I finished my run last night and simply couldn't wrap my head around the fact that I had just run 5 miles.  Those miles felt like something I can't even describe.  The pride.  The accomplishment.

Not emotions I'm used to having about myself.  I have always struggled to love myself, be proud of myself, to love and respect my body.  It's been a lifelong challenge.
I'm not saying I have found the answers to self esteem, body image issues.
I will however say that I'm finding MYSELF in these miles.

The saying my best friend told me all those months ago, "May the pounding of your feet crush the broken pieces into something new" is slowly but surely taking on more and more meanings for me.
I'm crushing my anger, disgust, shame and hatred for my body.  I am finding a warrior inside of myself.
My body can do things that it could never do before.  Things I was never able to push myself to do.  I'm learning to conquer my body and my mind.
No PR, no scale, no pace, no medal shows the changes inside of me.

I may not always want to run, but I will run.  I will conquer the miles, I will conquer the voice inside that says it's to hard, the voice that says I can't do it.  I will conquer it, I will win.  It won't always be pretty, but it will be ME!

I'm proud, and for once I'm proud of MYSELF!

Heat

Shit got real around here these last few days.  It's HOT.  Summer has officially come to Kansas.
I'm struggling to figure out my hydration and runs.  I got it done yesterday but in the heat of the day and it wasn't pretty at all.  I ended it short, my pace wasn't what I would have liked, and I was absolutely wiped out when I got home.
This morning I had to be at work early so didn't get it done.  Now here I sit at 4:45pm and it's 98 degrees outside with blazing sun and I haven't run.
These are the days I have to dig down deep inside of me and remind myself why I run.
I have no doubt that I will run, that I will log some miles.  I also have no doubt that it won't be pretty. These are the hardest days to run, yet the most rewarding.

Benjamin had a doc appt this morning.  All the kids did actually but the biggest talks were about Mr Ben.  It's agreed that we need to dig deep to see if there is a medical reason Ben is struggling so much with eating.  His talk of pain with food hints even deeper at a problem.  She said keep chugging along with Ensure for now, as we obviously need something, but all agree it's really not a whole life solution.  She does want to start trying to get some fiber and probiotics into his ensure each day and ideally get him to start taking a multivitamin.  His BP was up considerably, which means his meds are working, although his HR was also up quite a bit.  He sees his Neurologist next week as well for a follow up.

Simplest Moments

Wow.  I did it.  11 yrs later I have gone back to work.    Today was my very first day.  I was so nervous but that settled quickly and I loved it.  It was so nice to have something to do and be around people again.  I was more ready for a change than I even realized.

The kids are in their 2nd week of school.

Emily ~ 8th grade! Her last yr of middle school.  WOW.  She's busy as ever.  School orchestra, school choir, church orchestra, private lessons, Wichita youth symphony, plus all of her classes and a minimum of 1 1/2 hrs of practice time each day.  I have no idea how she keeps it all balanced but she does, and she even finds time to watch Teen Wolf, read books, make friendship bracelets and other crafts, and spend HOURS on her cell phone with friends.  :)

Jace ~ 6th grade!  His first yr of middle school.  Double WOW.  He's absolutely loving it.  He's in band again this yr, still working away at learning the clarinet.  He's figuring out classroom changes, different teachers, lockers, and all the fun things that come with middle school.  He's also decided to apply for Stuco.  He got a new BMX bike for his birthday so he spends as much free time as possible outside learning tricks, ramping, and many other things.  He also has become quite the popular one and spends a ton of time on his phone calling and texting with friends.

Benjamin ~ 4th grade!  My littlest Ben.  Not much has changed this year.  Benjamin is still on the para bus and still has full para supports every moment he's in school.  He is doing some of his own writing this year as well as still working on keyboarding.  So far I haven't seen any work come home where his para had to scribe for him!  Yesterday Grandpa took the kids out to Freddy's after church and bought Ben his typical cheeseburger.  Ben refused to eat anything.  When he came home I chatted with him and for the first time ever he said eating makes his tummy to full and it hurts.  He has NEVER described pain with eating.  We are wondering if that is maybe out missing underlying issue that Ben simply didn't have the words to explain.  He's still drinking his ensure most days and that's what is getting us by.  He meets with his pediatrician tomorrow so we will see how that goes.  Ben is still madly in love with minecraft and that's what he spends his free time on.

Ariana ~ 2nd grade!  She's of course LOVING school.  She is my little social butterfly who thrives being around people and friends, and she's so smart that school work is such a breeze for her.  Her teacher seems to be a good fit for her and Ari is loving it.  She has so many neighborhood friends that she is always playing with the kids and has become quite the expert at riding her 2 wheeled bike.  She is quite the balance of girly girly and tom boy.  It's fun to watch.

I'm running still.  A lot.  Today is runstreak day 52.  I'm a little over 55 miles for the month so far.  I am so thankful every day that I took that first step out the door.  I can no longer imagine my life without running.  The people it has brought into my life are amazing.  Bob runs with me almost every day as well.  We usually run at 5am every day and it's been such a special time for just the 2 of us to encourage each other on our runs and get that time to talk free of any distractions.  We love it!

I'm sure there is so much more I could/should write about but right now this is enough.  This is us, in our simplest moments.

Inspiration

It's here.  Today's the day.  They are all 4 gone to school.  I did pretty decent today.

I have received many messages this week telling me how amazing I am, how much I inspire them, how I make them a better parent, how strong I am.

These messages used to frustrate the heck out of me.  I could never figure out how to get the true nature of things across.  I wanted to scream from the rooftops how weak I truly was.  I didn't want to be looked up too.  There was so many days I was lucky to move from the couch to get a drink, let alone actually accomplish anything.  We had sandwiches for dinner.  My house was a mess.

I did NOT have my life together.  It wasn't smooth sailing.  I was in no condition to be looked up too, I wasn't a example of the "proper way to navigate grief".  I was failing.

Lately I feel a bit stronger....sometimes.  I'm not there though.  I'm not doing this right...is there a right way?  I don't have it all together.

I run.  I run every single day.  I ran 98 miles in July.  I have run every single day for 47 days straight.  I have gotten together with friends.  I have cleaned house.  I have gone out with my husband.  I have cooked.  I have played with the kids.  I have learned a new hobby, pottery.  I have formed relationships.  I have ended relationships that were hurting me and pulling me down.
I have worked my butt off as a volunteer in an AMAZO organization called, IR4, Inc.  I have helped launch a new group inside IR4, called IR4 Siblings : The Unsung Heroes.

I have also laid on the couch in pj's watching so much TV I can't even absorb what I have seen.  I have served sandwiches for dinner.  I have let my house go at times, not cleaning at all for days.  I have cancelled with friends.  I have run the minimal 1 mile at 9pm at night because I couldn't bring myself to do it earlier in the day.  I have avoided phone calls and paperwork.  I have fought to get up out of bed in the morning, simply wanting to sleep life away.  I have yelled, cussed, screamed, cried, and beat pillows in anger, frustration and pain.

It's not been pretty.  It's not been easy.  It has taken EVERY ounce of myself to get through each day.  I have NO idea how I have made it 67 weeks, 3 days, 10 hrs.  It's messy, it's dirty, it's HARD; and I can't tell you at this point how I'm going to make it each and every day and week and month and year to come.  I can no longer look and plan that far ahead.
My family, my friends, my home, and my health have all suffered at times.  At times life has been full, painfully full.  The smiles and laughter have filled our home, sometimes seconds later swapped with tears that shake the body to it's very core.

What I can say at this point, is somehow, someway; I'm surviving...we are surviving.
It's not pretty, it's probably not the right way, it's probably not the wrong way

I'm proud that we are inspiring people.  I don't know why.  I tried to figure it out.  I tried to see what helped people in their daily lives.  I gave up.  It doesn't matter.  It simply doesn't.
If our story, if our struggle, our triumph, our tears, our pain, our laughter, our journey can inspire others than we won't stop; we are Eli's voice, we are living for two.
Eli lives on in our family, in our life, in our story; and if our story inspires you then Eli is living on in your lives too.
Eli is our strength, Eli is the reason we get through each day.

Blessings.

Silence

We are here again.  The kids start school tomorrow.  

I'm torn.  I have the mommy excitement of some quiet time, some time to clean house without having them come along 2 steps behind, the pride of them starting another year in school, the accomplishment. 

But I also have the flip side.  Tomorrow begins another cycle of me here, home alone, wondering what I'm supposed to do.  What my purpose is.  

My children are all 2 yrs apart in school.  I have always had a child home with me for 13 1/2 yrs.  Then Eli was born and my life was overflowing with activity.  I ALWAYS had something that had to be done, he was my constant shadow.  Then Eli passed away and summer came immediately after.  The kids kept me busy, kept my mind focused somewhere else.

Here I find us again, at another school year, another new start without my baby.

The house will be still.  Quiet.  Too quiet.  It's not a good kind of quiet.  It's the quiet that settles deep in my soul, the quiet that takes my breath away.  The quiet that makes my mind fly back to those days.  Back to what's missing.  

I have no idea if there will ever come a day, that being alone won't hurt.  That it won't cause an emptiness and a pain deep inside of me.  Where the silence won't be deafening.

Long Time No Blog

I have been quiet for quite some time.  

It's all just been to much.  To much to type.  To much to think through.  To much to sort out.  So many feelings constantly swirling around.

What all has gone on?

1 yr since we lost Eli

6 baby kittens being born on my lap

1 yr since we buried Eli

Our very 1st 1/2 marathon

Multiple 5K's

Emily's school team winning Kansas History Day

Emily's team travelling to National History Day

9 days of competition, travel, and vacation in Maryland, Virginia, DC, and Delaware

Meeting one of the very first Mito families I ever spoke to

Tons of eating issues for Ben resulting in ensure scripts and feeding therapy referrals

The end of 1st grade, 3rd grade, 5th grade (elementary school graduation) and 7th grade

I'm sure there is a ton more I'm forgetting but you get the idea.  It's been a LOT!

Big things.  Emotional things.  Heart breaking things.  Amazing things.

It's just been to much.  

I've done everything I can to just make it to the end of each and every day.  I try not to think to much about the day, or the events, or any of it.  It's sometimes just to much.  

Numbness left and I have had to force a zombie like state so often.  Find and force my own numb.  It's just "easier" that way.

I'm ready to get back to blogging.  I think.  

I know how much my blog has helped others, how much it's helped me.  I'm not giving up.  I just needed a break.  I needed time.  I needed space.

More soon.  Promise.

Eli's Final Journey

I have gone round and round in my mind if I'm going to share this video publicly or not.
Some of my closest medical mommas have seen it but that's all.
I have held onto it for almost 1 yr, as this video was made a week or two after Eli's funeral.
I have decided now, on this day, 1 yr after my son was wheeled into his final surgery, to share.
Why? Because first of all it's beautiful, it's my baby. It's our journey. Nothing can show more about what we went thru than this video.
This is my tiny man's final journey. This was our family's journey. This was our life.
This isn't a made for lifetime movie. This isn't some distant family in the media. This is us. This is our life. We felt this, we lived this, we asked the questions, we made the decisions, we held him while he died, we washed his lifeless body, we walked out of the hospital pushing his empty wheelchair. This is us, raw and unedited.

This video starts with a video made 2 wks before, goes thru his surgery, going home, the ER, the PICU, Eli's death, and selecting his plot.
There is a separate video for the funeral and burial that I will share in a few days.

Again this video is raw and unedited. Do NOT watch it if you are not able to handle that.

Here is the blog post with written details of that night for those who need the written info.  "What Happened"

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

Tick Tock Tick Tock

1 week
2 days
19 hours
16 minutes
2 seconds

I can barely breath.