...and then I turned 40

A few months after we lost little CJ, I turned 40.  Ouch.  What did that involve?  Cards from my kids and husband and a nice lunch date.  But the rest of the world? Nothing.

My parents sent me a text message.  Seriously.  And that was that.  In what I am assuming was an attempt to avoid upsetting me, the people closest to me pretended the day simply didn't happen.

When you loose a baby in your 20s or even 30s, the assumption that you can have more babies floats in the air.  40 is another story.  The condolences and messages of love are laced with a feeling of finality.  A complete chapter has been written and concluded.  Nobody gives you hope for another chance.

I'm 40, and honestly I'm ok with that!  I have a wonderful husband, and 4 beautiful children who I am so very proud of. That doesn't mean that I'm ready to be still, and it definitely doesn't mean my story is over.

A counselor described the grief of losing a child as the equivalent of recovering from chemo.  You have been bombarded with toxins to the point of near death. At the end you are left feeling empty and beaten and forced to somehow build yourself back up.  The alternative is to wallow in that horrible toxic existence.

For now I need to spend 40 taking better care of myself.  Mind, body, soul.  All are still coated in toxins that are preventing me from the next steps in life.

Writing here is a big part of collecting my thoughts/clearing my mind.  By putting it all down, my mind is less burdened.  Even if it's to an audience of 2,  I've shared my thoughts with someone.  That is a sense of accomplishment. 

What will my rainbow be at the end of this storm?  Heaven only knows. Our home will hear the sounds of a baby again. It may be our child, grandchild, niece/nephew... I don't know from who, but I have no doubt our days of cuddling babies is far from over. It's only 40 people-chill!  Hopefully an angel will whisper clues in my ear as I sleep. 

My little owl

CJ is burried in our church cemetery.  It is pretty much what you picture when you hear those words- just a few acres of land on the edge of town.  We choose it because... Well, it's home.  It has a small prayer grotto in the back corner by CJ where prayer services are held, and a big wooden cross in the middle.  Huge old trees line the perimeter as well as the circle drive through the property.  It's very quiet there.  Only a few times have I seen another visitor while I am there.  Wandering through we have found several graves from the early 1900s too weather to even read.  There's history, and the love of our church community there.  No sprinkler system (old water pumps for hauling buckets for your flowers.) No big monuments or mausoleums. There is beauty in it's simplicity.

When the weather was warmer, I used to come sit at his grave in the grass shaded by a big oak tree.  Trying to find the right words with a broken heart is never easy.  So I would simply plead.  I would beg with all my soul to God for a sign that my little boy was ok. I would tell CJ that I know he's ok, but mommy needs a sign. And I would sit and wait. 

While waiting and frustrated one day, I noticed a small little owl in that oak tree. That just infuriated me!   That damn owl better not be eating CJ's flowers or pooping on him!  I wanted that scrappy bird GONE!  We are talking crazy bereaved mom willing to buy a gun GONE!

Then to my dismay, he was there the next time I came.  This time I noticed him watching me as intently as I was watching him. Why the hell was this owl bothering me? "Not funny,God" was constantly going through my mind.

As time passed, I started to look for scrappy little bird on my visits.  I was beginning to become disappointed if he wasn't there.

Around Halloween there was a chilly day I remember very clearly.  The grass was wet, but my heart was heavy so I grabbed a chair from my trunk.  I sat the quietly wishing I had answers.  My little owl appeared above me. I remember looking at him and wondering if I looked as worn as he did.  He looked weathered, like life had taken a toll.  He was rumpled and tattered. Yet his demeanor was calm.  As if the hardest winds could blow, and he would stand firm.  This scrappy little owl was determined to keep me company.

In an instant I saw him through new eyes.  The eyes of a mother who held her lifeless child, seeing beauty in his tattered appearance.  Feeling appreciation for his company and wonder in his reappearance each time I visited.

And so my collection began.  Placing owls quietly around the house to remind me of CJ.  Ever present, always watching over us.  What a beautiful image. 

The reality of our situation is too painful to explain.  Having an object of symbolism gives us a bit of strength in keep CJ alive in our home.  His pictures are right next to his sisters and always will be.  But those extra little owls make us smile around every corner.

#doitforcj

Blessings along our broken road

Tonight's dialog:

Him "hi"
Me "hi"
Him "what's up?"
Me "washing dishes/watching a cooking show. You?"
Him "not much"
Me "k. See ya tonight"
Him "ooooooooook. Love u"
Me "love u too"

Boring?  Monotonous? Predictable?  Nope.  A comforting 20 seconds phone call we try to sneak in several times every evening my husband is working.  We just need to hear eachother's voice.  Sometimes there's more, but often not.  It's just our way of saying "are you ok?".

It's a private language where so much more is really being said.   He's making sure his wife hasn't fallen to pieces, and I'm making sure the stress of picking up the pieces hasn't destroyed him. It would be very easy for us to disconnect.  He works crazy hours, I'm flying solo with a household of teenage drama.  Yet somehow we have made a decision to put just as much energy into loving eachother as we do missing CJ.

A few years ago I was working the night shift at the hospital and one of the chaplains stopped by for group conversation and prayer.  He started the conversation by asking us who we would put first in our lives after God.  The answer he was prodding for was our children.  He was startled when I said my husband.  He practically argued with me that my children where a part of me, my husband was by choice.  I explained to him that as a Catholic, my marriage is sacrament.  A gift blessed by God.  It's not an option I can walk away from. I adore my children, but if we do our job correctly, one day they will leave us to live their own lives.  My husband will be next to me every day until we are separated by death.  Loving your kids is easy.  He was right-they are part of me.  We all know not every day of a marriage is easy, and we have been through hell.  But the choice to walk away is off the table.  We meant our vows and trust God to get us through.

Think about the peace of mind that brings.  Even at our darkest moments, I knew in my heart my husband will always be at my side.  Just like loving our children-unconditional acceptance.  I am flawed.  I stumbled.  I am loved.

So when you read the stats of how many marriages crumble after the loss of a child, know my heart breaks for those couples.  Those stats just solidify in my heart how blessed I am to have my crazy life. Tomorrow we may argue about disciplining kids, bills, driving skills, loose socks in bed, dirty laundry on the floor, missing remotes, unfinished house projects, scattered abandoned coffee cups,  and how unfunny farting really is, but at the end of the day we will follow our #1 rule and crawl into bed together. He may only get a few inches of blankets if I'm annoyed, but we will be together.

I asked him tonight if he ever wonders how we manage to keep laughing together. His teasing response was that murder is illegal.  Then after a few moments he added "we should write a book about all the crap we've survived".  He's probably right, but who would ever believe it?? Atleast it gives me material to blog about at 1am with his arm protectively around me as he snores.   #doitforcj

(picture from 1995. Dating 2 months, we were engaged 2 months later)

Be gentle with yourself

Words I have heard over and over. "Be gentle with yourself" has been the advice of so many parents who have been through this nightmare.  I honestly don't think I understood those words until very recently.

Right after we lost CJ, NOTHING WAS GENTLE.  Every aspect of life was like salt into a wound.  Life dared to expect me to live again. Every step, every breath, every thought...  Every moment took every ounce of courage I had. Over and over I heard "be gentle with yourself".  My life became long days in front of the TV.  Not really watching anything, but staring at the screen while my mind ran crazy.  I didn't do anything all day. How much more gentle could I possibly be with myself?

I'm writting this from a bubble bath on my phone.  Candles are lit, and the bubbles are nice and warm.  I can see out a window as snow clouds are drifting in (again).  The wind is picking up and sounds are getting louder.  But I'm allowing myself time to regenerate.  Sitting quietly in the warmth and enjoying myself.

I get it now.  The pain is there, but i'm allowing myself to let it go a bit.  Even if it's just for the duration of the bubbles. Taking these few selfish moments in the middle of the day reminds me that  it's ok to put the burden down.  To be gentle with myself.

I'm off to soak and watch out my window for a bit.  I hope you all can take a few moments to be gentle with yourself and put your burdens down for a few moments. #doitforcj

tears and laughter...

We laughed last night.  We do this often despite what many might think.  Not just a giggle, but laughed until our eyes teared.  It was over something stupid at 2am, so chances are it was out of pure exhaustion.  But those little moments remind me of us.

Grief sucks.  It is a temperamental rain cloud that hovers. People who bump into us must see it from a mile away because their discomfort is palpable.  I'm ok with that for now.  Some days I get annoyed when people seem to handle me extra carefully, but the truth is I still need it.  Talk about frustrating... To NEED the world to gently walk around you.

Yesterday we went to make some final decisions on CJ's headstone.  That hurt.  My hubby and I had made the majority of the decisions, but I took our youngest 2 daughters to finalize and make a few simple changes.  My mindframe: In and out.  15 min max. I charged in there like a bulldog.

Instead our salesman Jason was a welcomed blessing.  For over 2 hours he tweaked our plans on the computer to show the girls every option imaginable.  He flipped images backwards, played with scripts until I couldn't see straight, and made sure every tiny detail was exactly what we wanted.  While he spent so much time with us, he teased and joked around with the girls, politely ignored my tears, and never became impatient.  We left smiling.  Imagine that...we left smiling and joking with eachother after all that time picking out CJ's headstone.

Jason was my angel yesterday.  I was at a low point and hurting.  He was sent into my path to remind me that we will be ok.  Laughter in the most sorrowful times can be healing, even if tears are falling through the giggles. 

Today was difficult.  The day after dealing with anything CJ related usually is.  Tears fell several times and I felt like I had been hit by a truck.  Then it hit me. We need to do more.

So I made contact with a local group that holds social events for mentally challenged kids and adults.  The wonderful director cried when I told her our story and asked if she had any use for volunteers.  I'm excited to get involved and honor my little boy.  I'm sure there will be moments of tears, but also laughter.
Thank you to everyone who has been my angel.  Everyone who has understood how to tiptoe around me, but still yank me back into living.  I love you!  Please don't give up on me!  I was warned today that my kidnaping involving drinks and laughter is eminent. Thank God! ;)
#doitforcj

Fairytails...

Even knowing our sweet CJ had Down Syndrome, my daydreams of what life would be like with him here on earth are purely fairytale.

I picture a cherub faced toddler with his sisters'dark curls, daddy's big dark eyes, and my fair skin (compared to the rest of my household!) wearing denim overalls and a baseball hat happily playing in our backyard in the perfect sandbox my husband would build.  His cheerful demeanor and sweet disposition would have him occasionally smiling over at me as he drove his trucks through the sand.  I can clearly pictures him at his highchair with the family at mealtime.  Jabbering away as toddlers do.  Grinning at his family as we interact with him.  My days would be filled with long stroller walks, quiet snuggles in his rocking chair, and moments of simple wonder.

The reality is while CJ would have filled our lives with incredible joy, he had Downs.  I was about to embark on a journey of raising a child with special needs.  A journey that would have probably included doctors, therapists, and countless battles by his over zealous mom in an educational system still experimenting with these special children.  There would have been disappointment and heartache watching my son struggle to teach milestones so far behind when his sister's did. 

But in all these struggles would have been so much joy.  Raising CJ would teach us patience. Lessons of acceptance, perseverance, simplicity, and tolerance.  And of course we would have been tested as a family in our faith.

You see, I didn't just have a son.  Christian is an extraordinary angel.  All children come with lessons to learn.  Our little boy came with blessings to teach.

I will never understand why God choose us to parent such a special child.  And I definitely will never understand why we only get to as angel parents.  It's on my list of questions to ask God when I join CJ  in heaven.  Then again, with an eternity to spend with him finally materializing, I doubt it will matter.

I think I'll try to focus on the struggles a bit more instead of the fairytail.  Life is messy! Living those messy bits brings the real joy.  Maybe daydreaming about frustrating moments trying to communicate with my child, heartbreak watching him try to assimilate to a world that struggles with differences, and a lifetime of sleepless nights as I worried about his future will help me get to know CJ better.  Including all of the love and happiness he would have brought us along with struggles.

As for the image of my beautiful boy in overalls, baseball hat and cherub smile?  I'm holding onto that!  I hope heaven has plenty of toy trucks!  #doitforcj

Guilt sucks

So many days begin with "I was having a perfectly fine day, then...". Once again it would suit today's story perfectly.

Kids are home today for extreme weather. So in other words, when you are having anxiety issues this amounts to a day when you can breathe a bit easier.  Since we lost CJ, I worry quite a bit that we will loose one of our girls.  So a quiet morning at home with 2 of them here is perfectly fine with me.

Listening to the wind kept making me think of CJ's grave.  I was sure his wreath and decorations must be all over the cemetery.  This afternoon I decided to make a quick trip to check things out.

I was shocked when I got there to see the grave next to him had his stone set.  They were buried the same week.  And not just a modest stone, but an beautifully engraved bench with inscription space for 2.

I said a quick prayer, cleaned up his fallen decorations, and hurried back to my warm van. Then it hit me.  I sat there sobbing for almost an hour.  There was my son's grave unmarked.  His flower pot led me to the location in the snow.  It absolutely broke my heart, like I had once again failed him.

You see, nomatter why you lose a baby, I imagine you spend the rest of your life holding on to a tremendous amount of guilt.  I was the only one who felt his movements less frequently. I was the one who didn't argue with the doctors who said he was fine. I was his only voice on this earth, and I failed him.

This all came rushing back.  You can tell me it wasn't my fault.  My doctors have countless times.  But in the end, my son died on my watch.  That's how it feels.

His stone will get ordered soon.  We almost have the deposit thanks to so many incredible people who have donated to our gofundme page or sent donations to help.  How do we ever thank you all for being our angels?  I wonder if seeing it completed will bring me some peace or if the reality of seeing his death "set in stone"will just tear me apart again.  Probably a bit of each.

I guess I was due for a down day.  Luckily tomorrow starts another chance to feel some of that psychedelic hope that somehow usually bubbles up through the cracks.  Speaking of bubbles... Time to slip into my tub and soak away some stress.  I'll keep my eye open for that bit of hope :) I bet an angel may send me some! #doitforcj

(i've included the mock up of CJ's future headstone.  Please keep us in prayer that we can finish funding it! http://www.gofundme.com/667hjs