11 years later...

Wow, it's been a crazy ride!  This year feels like a really good time to share this crazy journey. 

Last month it's been 11 years.   How is that possible?  11 years living with/without our son. It's still such a crazy juggling act. I have so much i want to share about the journey.  How we ended up in Florida and the life we've recreated.  

But tonight I'll just tell you it's possible! Even when things seem like such a shit show, tackling it together can leave you in stitches.  

I'll explain the picture of tonight's shit show soon.  I hope I still have a few people that want to come along for the ride. I hope I can share a bit of hope. But here we go again,  while I try to #doitforcj.

Love,  jen

Selfish times....

Well,  hello!   I received a message today asking me where the hell I've been.   The answer is fairly simple.

We are in a blissfully selfish period of this crazy, never ending cycle of grief.   After 2 years of crying,  desperately fighting for change, and screaming our story to secure CJ's legacy, we have run out of steam.  So we paused.

What came out of a few weeks of breathing was unexpected.   As a family, we desperately needed time away from hospital drama,  self centered individuals attempting to use our son's name for personal gain, and even complete stranger representing themselves as having an emotionally intimate relationship with our family.  We walked away from the politics and red tape standing in the way of truly making a difference.  January-February is OUR time to do whatever makes us happy.

So what have we done with this new found freedom?  First i cut off my hair drastically.   Making a big physical changed seemed to open me up for bigger things.  I searched out an antique piano to adopt and talked my teens into helping me drag it home in the back of our conversion van.  I hand painted arrows and covered my living room wall as inspiration to just keep moving forward.  My family has followed my crazy path by stretching their wings into new ventures and bringing back old passions.   My sweet husband has a new turn table at up on a newly created table in the basement for his racks of records. The kids are preparing for track season,  applying to colleges,  applying for job promotions... Sunday night dinner was spent at a local hibachi place and I'm learning to stress less over producing the perception of a perfect home.

So for now,  my basement had the faint sound of bass and house music.  My living room has become a place where kids laugh and hysterically poorly plunk out melodies on a 60 year old upright,  there is laundry stacked in every room,  and a never ending revolving group of friends coming and going.

Tears still sneak up on me often.   I'm ok with that.  CJ is worth every single one.   And in the process we are reinventing our family dynamic.   In a few weeks,  with lent we will return to our projects and work to secure change and better education for the staff that works with bereaved families.  In a few weeks.   But for now,  we are enjoying being a bit mess of a family!   Just our way to #doitforcj!

Christmas fail....

Steps to being a heartbroken mom of an angel on Christmas...

Wake up crying in a confused state.  Is it all a bad dream?   Please tell me this is just a bad dream.

Wash face.  Cold washcloth over the eyes and pray you can still fake it through the day.

Go through the motions of starting the day.   Cry in your coffee.  Cry in the shower. Cry in the closet. In between, reapply mascara and keep checking the swelling around you eyes.   Convince yourself you can still fake it through a family dinner.

**speedbump.  Hubby in a miserable mood and leaves for work.  Flying solo with the kids driving themselves to a family gathering**

Tell yourself one last cry and you're done.  Stop at the cemetery.  Cry until you can't catch your breath while standing alone in a cemetery on Christmas day.   Cry until you wish your breath would simply stop.  Feel your cheeks burn in the wind and your nose drip down your face despite the wad of crumpled tissues constantly wiping your face.  Scream at God internally to either calm the pain or just take you to your son already.

Reapply mascara to face your children.  Begin the process of realizing there is no way to hide the pain today.

Cry in the car.

Reapply mascara and fan eyes for the 40 min ride out to a family Christmas dinner while tears slip through every few moments.

One more mascara application.

Face your family.  See the look of sympathy in their eyes as they cautiously say hello. Feel almost relieved when an aunt comments you look tired.  You know she's just being kind.  Escape to bathroom when more tears break through.

Reapply mascara.

Nibble through dinner.  Down 2 glasses of chardonnay in the hopes of numbing the pain.  Realize today is a bust.  Quietly day goodbye to a select few and slip away to your car.

Burst into tears while fumbling with keys in a slight panic of being caught.   Drive home crying.  And more crying.   Your face burns worse than sunburn.  Your nose is now also miserably red.  

Make it home exhausted and look at yourself in the mirror. OMG.  Your image horrifies you.   How is that possible from simply crying???

This is what grief does to you.   This is the face of a mom who attempted to be brave.   Who attempted to pull it together a dozen times.  It isn't pretty, or sweet, or even gentle.   It's harsh,  exhausted, and honest.

Christmas is far from over for a grieving heart. Please reach out to the hurting souls in your life.   Love them through the ugly.   Maybe the next day will be a bit easier...

Changing seasons.

An odd memory keeps lingering in my mind today.

It was 2 years ago.  The trees were changing as was I.  Shock had worn off,  everyone had gone back to living, and I was lost.   Sobbing, praying,  arguing with God filled my days.   I felt alone and forgotten by most of the people in my life. The period of shock was much easier than this next stage in my journey.

I became explosive in every way. Some friends slipped away simply being unable to deal with watching me slip into my own hell, while others proved to be my angels.  They loved me through the smeared mascara, uncontrollable crying,  and anger fits. 

One weekend afternoon the normalcy of our household felt overly synthetic.  My life 2 months after losing my son had turned into a charade.  It was all too much and I crumbled.  My husband calmly walked to the backyard,  set up a chair, poured me a hot cup of coffee, and gently walked me outside.  He put a blanket over my legs and kissed my forehead before leaving me alone.   The tears burned and my soul screamed as I cried.  When I calmed down, he joined me. There was no need for words as he was living the same hell, just under different rules.  A grieving dad's emotions aren't cared for by others as a mom's are. After time we chatted.  I don't remember our conversation, but I remember the feeling.  He was the only one in the entire world who knew how it felt to lose OUR son.

I've met many moms who have lost babies these past 2 years, and over heard more heartbreaking stories than I can count.  And in the end,  I realize I am so abundantly blessed.   Even in my moments of deepest despair, my husband was there with me.  We wiped tears, took turns breaking down,  and used our last bit of strength to be kind to each other.  The loss of a child has statistically devastating effects on a marriage, yet somehow we pulled together even closer. 

This time of year is a reminder of change.  A time in my life I will never be able to restore in many ways.  But this year I'm trying to focus on the love and support we all shared over CJ.  My little boy brought us together in ways I never knew possible.  Hopefully he's watching me now proud of his mommy.  Hopefully the seasons continue to bring comfort and memories of love.   That's a legacy I'm proud to build for CJ....

Love.

Love and blessing to you all.  Happy belated All Souls Day 2015.

#doitforcj

2015 wave of light

Another year.   This is my third wave of light.  How has my sweet little boy been gone over 2 years?   It just doesn't make sense.  

Time is a blessing.   Bad days are still excruciating,  but they tend to sneak up less often.   Not a single day goes by that CJ isn't on my mind from the moment I wake up until I cry myself to sleep.   Can you imagine?   My heart never gets to take a break.   But my soul is learning to love him in ways that are less painful. 

This wave of light is such a comfort.   It remind me that I'm not alone along with an opportunity to selfishly focus on CJ outloud for a change.  a few years have sneaked out as I read my newsfeed full of memorials to friends' babies.  So many beautiful, warrior moms who I have met on this journey.  Our angels are our common link, and I'm blessed to know every one of them.

Can you simply light a candle tonight in support of so many hurting souls tonight?   If you are personally struggling through your own loss,  know that you are not alone.   My prayers will included all those struggling silently as well as us loud mouths.  Tonight is simply about the babies...

Love to each and every one of you!
-Jen

Missing him...

I haven't been there in awhile.  Weeks honestly.  My son's 2nd birthday knocked the wind out of me.   A date on the calendar ripped at the scabs on my soul in ways I can't explain.   Every since my few visits around his birthday,  the pain had just been too horrific to visit the cemetery.

It's almost 2am and with all my might I'm resisting the urge to grab car keys and go.   I need to be close to him.  The feel of the grass on my cheek seems to be a distant memory.   Collapsing on the very earth he is buried beneath is the only action I experience that quantifies the sorrow my heart carries every single day.   It's my equivalent of checking on a sleeping child.  the difference being for 20 years every time I checked,  they were still alive.  I've lost that blind faith for the rest of my life.

I went to say to a friend that it's so nice to have everyone home tonight,  but the reality is that will never happen.   I will never have all of my kids home together.  It's a twisted road of words I'm  attempting to navigate.   How do I respect my son if I don't acknowledge his absence?

So tonight I'll stare at the ceiling for a little bit longer.   Tears burn my face in a way only endless tears do.  I miss him.   Yet somehow my heart will keep beating until morning.  Then I can honor him by loving his sisters and working my hardest to be an example of how we want the world to #doitforcj.

But tonight,   I miss him.

Missing some amazing things...

Holy heavens.  I am heavy hearted these past few weeks.   Must be the toddler birthday party I didn't get to celebrate.  A birthday cake never ordered.   Birthday kisses never delivered....

Often my best way to break my funk is to simply spill my guts.  So I've decided to simply list it all. All the crap that in missing out on that feels like the weight of the world on my shoulders.

I miss:

Thinking I knew what my future held for the next 18 years.

Sleep.

Having blind confidence in my body.

Being asked why I'm crying.

Exhaling.

Not knowing that an infant's casket resembles those white styrofoam coolers.

Thinking it would never happen to me.

Sleep.

Being confident that all was safe if you just make it to 26 weeks.

Not worrying about medication refills so that I can simply breathe every day.

A carefree look that I used to see in our daughters' eyes.

Being uncomfortable in a cemetery.

Anonymity in our church.

Sleep.

Simply answering the damn "how many kids to you have" question without stumbling.

Planning.

Loving my son in earthly form.

Being known for who I am,  not what I lost.

Talking to extended family without the awkward avoidance in their eyes.

Baby shopping.

Sitting in his perfectly simply nursery.

Sleep.

Washing tiny onsies.

Sewing nursing pads, burp rags,  and blankets until 3am.

Talking to my belly.

Allowing my husband to touch my belly.

Paying attention to signals like swollen ankles and treating my body with respect.

Feeling like I deserved respect.

Sleep.

Excitement.

People being happy for us.

Being happy for myself.

Guilt free chunks of time.

Daydreaming.

Praying with hope.

Sleep.

Sleep without screaming nightmares and phantom kicks. 

Sleep that leaves you refreshed,  comforted,  and ready to function.

I really miss sleep.

As long as it's healthy...

A friend recently posted an ultra sound picture of a sweet little 8 week blob.   Her comment?  The typical.

Wedontcarewhatitisaslongasitshealthy....

Ignorance is truly bliss.

I would give my own life for CJ to have taken a breath.  My daydreams now involve having the chance to raise my downs syndrome baby.   I wish his little heart could have kept beating for 2 more weeks and given us the chance to get him help.   If I had only known...

I fantasize about what it would feel like to kiss his warm forehead as he is wheeled into surgery, or to have the opprotunity to make choices for him that would effect his life.  Any physical scars would have been proof he lived.   Instead,  I'm left with a wounded soul.

His life may have been riddled with medical and social obstacles, but all I wanted was the chance the spend time loving him through it and showing him how much I loved him.

I just want my sick baby better on earth with me.   Even if it was to be a short time.   No time at all is purely torture.  He didn't need to simply be healthy.   He just needed to be alive.

I wish I was still blissfully ignorant....

I opened the damn envelope....

Most angel parents have one.  It's the envelope that has the hardest things to look at.

For me,  it's from the funeral home.   A picture of my sweet little boy dressed in a beautiful ivory knit outfit with a matching bonnet.  His little feet tucked into teddy bear slippers his grandma picked out from his nursery while I laid in a hospital bed in exhausted hysterics.  My sweet little boy is in his casket.

We don't care for this picture.   His lips are forced shut and his face puffy and starting to discolor.  But it's the only picture I have that his hands are showing.   Beneath his sweet outfit,  I can imagine his perfect little baby shape.  A tiny bit of his hairline can be seen reminding me of the brief moment I pulled back his hospital hat to catch a glimpse of his dark hair.    It's painfully blunt.   The blanket overhanging the box edges that I pray were snugly tucked around him.

What a gift.   Our funeral director snapped the picture with his cell phone at the last moment knowing I would not be released from the hospital to see him in his last little bed.  He dressed,  cleaned,  and tucked my son in for me. That stranger got to spend more time with my son than the few brief minutes that the nurses allowed me.  I could be jealous,  but in reality I'm so very thankful.  I'm thankful such a caring individual was brought to us when we needed to be taken care of.

The funeral home also provided a baby book for us to fill out specifically for an angel.  Again,  a crazy blessing no average person would think of.  

I don't know why I dug that up today.  The toddler I adore who I babysit was being a horrific monster,  I found fleas on the kitten, my wallet is empty from one domestic disaster after another lately, and I had been battling a headache for a solid 10 hours. It was an absolutely crappy day. 

Yet I needed to see him.  That pain brought a bit of comfort.   He was here.   It wasn't just a dream. 

Tonight's sad ramblings have left me wiped out.   Maybe in a few hours when I get up,  my headache will have faded and my puffy eyes calmed down.   A girl can hope,  right?   Tonight it hurts to #doitforcj

I screwed up...

Every little things that was in his nursery was packed when we moved last year.  We were in no way ready to thin things out,  so I simply packed it.   Every little things was placed in a box or bin by me.   Help was offered, but at the time I was completely in momma bear mode and nobody (including my husband) could make me feel at ease and get me to accept help.

Fast forward a year.  A mountain of boxes and bins sat ominously stacked in the corner of the basement.   This may be the saddest way too memorialize our sweet boy.   Almost 2 years since we said goodbye to CJ,  a few medical hurdles and attempts,  and still no "rainbow" baby.   That stack doesn't just represent past loss,  but broken dreams for the future. 

3 nights ago I decided enough was enough.   I can't explain why,  but it was time to sort through,  condense, donate, and repack.  My first action was to donate the 3 cases of diapers collecting dust. 

I found a young mom in my community struggling and pregnant.   She showed up walking the 3 blocks with her small children and a stroller,  refusing to allow me to drive the 3 large boxes over for her.  We emptied the boxes and stacked as many packs as we could into the stroller, then bagged up the rest for them to carry.  I watched them walk away and I felt one burden lifted from her shoulders.  But my pain over letting go of a stack of diapers was shattering.

Night #2 tackling the stack was spent opening everything to see what I had. I could remember where every single item had been in the nursery.  It was like ripping the stitches out of a wound before it was healed.  The stack was left as an even bigger mess.

Night #3 I decided to finish what I started.   Last night I touched every single item.   Some hand me downs were pulled aside to be donated.  Everything was sorted,  cried over,  and repacked.   For the first time it not only felt like CJ's things,  but that of any other baby we have not been blessed to conceive.   It was a horribly painful reality.

My husband walked in exhausted from work just past midnight to find me finishing up and a mascara smeared mess.   And that's when I realize it...

I screwed up.

He hugged me.   That hug that only he can give me while holding me up as I crumble into his arms.   He didn't let go when I started to resist and pull away.  He just let me lose it.

Then he told me he never expected me to do it alone. He thought we would go through it all together.  The look on his face told me he was disappointed.  It never occurred to me that refolding onsies was just as important to him.

My head was pounding from all the crying.  My exhausted husband didn't hesitate to run back out for a soda for me.   Then we stayed up until after 2 watching watching meaningless reality tv and mindless chatter.  When my headaches had eased off, we crawled into bed.  His arms protectively around me as he spooned his traumatized wife. 

Why do I insist on doing it all myself?  I think I'm trying to protect everyone around me from experiencing the debilitating pain I attempt to function with every single day.

Every.  single. day.

It's not working.  They are already right there with me sorting through feelings none of us will ever be able to pack away.  While most days are better, many are still spent attempting to internally sort and reposition the enormous emotions of losing a child.  Every action is an attempt to lesson the pain.   But in reality,  it's just moving it around.   And often,  I screw it up.  

Today I'm exhausted.   It's like having an emotional hangover.  So now that my little buddy is softly snoring on the couch next to me, I'm going to let go and join him.   We can deal with life on a toddler's schedule today.  No big life changing epiphanies today.  Just a crap full of reality.

#doitforcj

#doitforcj

I wonder...

I wonder if they had just brought my son back to me after I was cleaned up and stable if the time I could have had would have left a less traumatic wound on my heart.

I wonder how it would have felt to hold his sweet body against mine.  To unwrap him and feel him skin to skin against my chest.

I wonder if my heart would be more at peace of I had been given the chance to bath him and dress him.   Let's face it... he was already dead. What harm could it have done?

I wonder if my sweet husband would have been given some privacy from the staff while he held his son for only those few minutes if he would have allowed himself to grieve.  If we could have had a few moments the 3 of us to cuddle and be his parents together. His wife sobbing in a hospital bed while he sat in a chair helplessly holding his dead son must haunt him. Physically,  we were seperated.  Those few inches felt like a brick wall.

I wonder if anyone would have suggested we take or own pictures if I could let the lazy photographer who didn't even make an attempt off the hook. 

I wonder why any of the staff could not recognize the horror of that silent room.  The comfort of some soft music could have changed our memories forever.

But most of all,  I wonder what his beautiful eyes must have looked like. I dream of his gaze meeting mine.   I pray that is the first thing I see when I join him in heaven.

But for now, I'm left to wonder...

What I would do differently as a 40 something mom. ..

Let's face it, I became a mother very young.  19 to be exact.   For whatever reason, becoming a parent was very easy for me.   I was always the teenager babysitting every week for families that paid me well to keep me.  Infants to school age,  I loved them all.   My sweet first baby was light of my life. 

Her sisters that followed in my mid twenties are no different.  Blessings that so abundantly filled our lives.  Of course I have my fair share of mommy tantrum stories from days when I felt overwhelmed.  But for the most part, we parented with old school values and common sense. 

Our kids had plenty of clothes, toys, and of course our love and attention.  Even on a tight budget,  while the newest trends may not have been possible,  but they always had plenty.  The first time I really remember putting my foot down and taking a stand was over video games. They were pretty much banned from my home except the first electronic reading books that came out. We were in agreement that our children would not be glued to the TV for their childhood.  Back then the first portable gameboys were coming out and our kids  simply went without. 

Yet I admit too often feeling inadequate.  I wanted my beautifully dressed kids (thanks to clearance and resale shopping) to have even better.  I envied other parents minivans that were a bit nicer,  or strollers that are a model newer.  I wanted our kids to not feel behind in any way.   Many of their friends' parents were many years older than us.  They are simply more established and in a different phase of life.  I laugh now at how young we really were.

I'm pondering all of this as I think about what type of parent would I be for a newborn today?

Calm.   One thing we really bring to the table with a house full of young women is a pretty calm environment.  Now I have my bad days,  but typically or home is drama free.   We are not yellers.  My kids each muttered they hated us once and never again.   They were taught to respect us and each other.   Hate is the f word of ugly words and absolutely not allowed in our home. 

Loving.   I didn't grow up on a home were we said "I love you" and very rarely hugged.  It left me screaming for physical attention as a teenager.   Our kids are snuggled and told they are loved and are amazing every chance I get (to the point of eye rolls).  Living these lessons modeled to them exactly the support we needed after CJ.  They would sit on the couch with my for hours while I cried holding my hand. Almost 2 years later,  they know exactly how powerful a hug is when they catch me crying.  There's a love and bond between us that would only be strengthened  with another sibling. I've always felt there is an over flow screaming for more babies.   My body simply hasn't cooperated.

Patient.  This comes with simply being a bit more mature.  CJ had really taught me not to sweat the small stuff.  Laundry can stack up if I means my kids get my attention.  I have no desire to miss out on time with them to be stressing over cleaning.   We tackle it as team, then relax together.  I'm sure juggling supervising a toddler would be the same. It's easier to be patient when everyone works together.

Happy.   Our kids have brought us incredible joy from the moment we knew they were conceived.  Every single day they make me laugh.  I hurt to my soul knowing a time is coming when they are beginning to leave.   I never choose to have an empty nest already.   There should be little souls and toy boxes filling the nooks of my home.  Don't envy my ability to have glass shelving or fingerprintless furniture.   It's  all screaming for sticky hands and miscellaneous plastic toys.

I will never look at a pregnant woman in her 40s and assume her belly was a "oops" or mistake.   I see a woman with a beautiful opportunity to be the mom only maturity can help you be.   I wish others would stop asking or assuming my son was unplanned.   A surprised blessing after so many years of trying?  Yes.   But always part of God's plan for my life.   I'm hoping the rest of his plan had yet to be fulfilled. There's still lots of love,  patience, and happiness in my heart to share.

While my path unfolds,  I'll keep trying to stay positive.  That's how I #doitforcj!