Tuesday, November 11, 2014

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.

Monday, October 6, 2014

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!



Monday, September 15, 2014

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.

Tuesday, August 26, 2014

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?

Monday, August 25, 2014

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.  :)

Wednesday, August 20, 2014

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!

Tuesday, August 19, 2014

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.

Monday, August 18, 2014

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.

Wednesday, August 13, 2014

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.


Monday, August 11, 2014

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.

Wednesday, July 9, 2014

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.


Friday, April 25, 2014

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"

Friday, April 18, 2014

Tick Tock Tick Tock

1 week
2 days
19 hours
16 minutes
2 seconds

I can barely breath.

Monday, April 14, 2014

Just love us, please

My heart is aching.  My soul is screaming in pain and agony.
The feelings are starting to fold in on me.  I feel bound and weighted.
Suffocatingly the clock is ticking, so fast.

My birthday is 1 week from today.  My last birthday was the first time I left my little man for the weekend.  He was so happy, so healthy, so strong.  I spent the weekend away, forever losing my last weekend with my son.  A time I can NEVER get back.  I never spent another weekend with my family, whole and together.  Never again another happy Saturday morning waking up with Bob, spending that slow morning getting Eli ready for the day.  Never another quiet Sunday morning, just Eli and I while everyone was gone.  NEVER.  Those moments are forever gone, never to be had again. 

The guilt I feel for missing that last weekend.  The pain.  Never did I know that I would lose my son 1 week after my birthday.  1 week.  The thought of acknowledging my birthday, let alone celebrating it feels torturous, painful.  The guilt overwhelms me.  How can I celebrate the fact that I left, I missed that weekend?  I can't.  Maybe some day but right now the emotions are running SOO high and I can't do it.

2 weeks from today is Eli's 1 yr angelversary.  I can't.  I simply can't.  The pain is building, like I would have never thought possible.

3 weeks from yesterday is 1 yr since we buried our beautiful tiny man.  3 weeks from yesterday Bob and I will be running our 1st 1/2 marathon.  We will be crossing the finish line at almost the exact moment our Son's coffin was lowered into the ground.

Right now I simply can't find words to convey how I'm feeling.

What I can say is please be gentle with us.  Please give us some leeway.  Contact us.  Talk about him.  Share stories and pictures. Keep his name and memory alive.  Come over and sit with us.  Cry with us.  Please don't push us though.  We have to do what we NEED to make it thru these next few wks and the lifetime before us.

Please don't tell us that we are "doing this the wrong way", for there is no right or wrong way.  We are doing this the only way we know how, one breathe at a time.  Just love us, just love our tiny man.

Always and forever tiny man.