Tag Archives: faith

Pooh…Is that you?

Everyone wants to be considered unique.  One of a kind.  Afterall, isn’t that the wonderful thing about Tiger, “that he’s the only one!”   Stand out!  Be noticed!  That’s how to make your mark.  In school, career, and, I guess, life in general.  The great desire to be one of a kind.  Gives us an edge.  You know, we all want the peverbial mold of us to be broken.

The irony being as a child generally we just want to fit in.  We don’t want to be noticed for anything unique.  And heaven forbid, don’t call us different, that could lead to a complex that could lead to permanent scarring.  Cliques, crowds, teams, clubs, all packed with members, all being watched by those on the outside just yearning to be one of them.  Perhaps many of us still feel this way, like the child looking to belong.

I was previewing a book, for my niece, by Kelly Cutrone entitled, “If you have to Cry, Go Outside.”  Kelly Cutrone is a mogel in the PR fashion world.  As a success she is always being asked, “how she made it?” “what is the secret to her success?”  This book was to answer some of those questions.  To help my niece get her start in life.  I liked her basic message, which seemed to be, work hard and don’t be a big ol’ crybaby!  No secret, just work.  Perfect for twenty somethings starting out or anyone…really.

Another point she made to the up and comers was to find “your tribe.”  Your tribe that is like minded, that you can travel with for nurturing, guidance, socializing and basically cultivating a “little family” that will be your soft spot to land when you fall on your butt one too many times.  Thus, lacking the ability to use your own untapped, super human strength  to pick yourself up by boot or bra straps.  Makes perfect sense to me.

Sounds like the basic theory that revolutionalized the support group.  A place to share with like minded people, with similar life experience, generally trying to accomplish a common goal or endure a common circumstance.  People who will “get” you, understand how your mind may be working and what exactly brought you to that mindset.  A tribe, if you will.

With a tribe, you can preserve all straps and elastic.  They don’t get as much wear and tear, afterall,  if you only need to pull with one hand while leaning on a shoulder (or shoulders) with the other.  The ultimate in strength…balance.

Even in the world of loss and grief, there are groups.  Widows, widowers, parents who have buried a child and children who have buried a parent.  Break that further into causes of death and ages and many different groups develop.  Thus, giving most of us a place to land…a tribe.

In my case it is the group that have buried a child.  But in that group I still cannot find my tribe, my sub-group to Pow-wow with.  I have come into contact (and developed relationships) with others who have buried a child.  Still we are not alike.  I don’t quite fit in the Infant Loss community.  Madeline was 16 months when she died.  Considered more a toddler to many, I suppose.  She grew in my womb, drew breath, and though too short, she had life, which can be contrary to the many heartbreaking stories in the infant loss community.

The other community that nurtures it’s members through loss and heartbreak or those who have lost a child due to a battle with an incurable disease, such as pediatric  cancer.  These parents know what it is like to receive this horrific diagnosis, watch their child fight the disease with herculean strength, yet it was out of their hands and their life now has an irreprebable hole where their child used to live.  Sadly, there are many, many people in this group.

Again, like me, despite super-human levels of fight and determination, they still lost their child… their baby.

Yes, I to, have buried my Baby.  As I said, Madeline was 16 months old.   Her diagnosis, Down Syndrome.  While I was pregnant, I had a fetal echo-cardiogram, in which they determined that she also had a congenital heart defect known as a “complete AV Canal” and a fused valve.  All very common in Children with Down Syndrome and all “highly treatable”.  Although I understand there are no promises, we were told there was over a 98% success rate with babies who had this procedure.

Soon after birth a blockage was found in her stomach.  A month later, a feeding tube.  A month after that, open heart surgery.  Then just when we thought we were in the clear, an emergency trach.  Only to be followed up a month later with another stomach surgery.   All things that knocked us pretty hard to the ground but just like those inflattable punching bags, we bounced right back up.  If nothing else, we were determined.  These were all just setbacks, hurdles to jump to get Our Sweet Girl to continue to grow strong and healthy.

After all, who ever heard of anyone dying as the result of Down Syndrome?  Not me.  So, I guess, I did not allow the thought to cross my mind.  When I had lost all patience and understanding for her surgeries and hospital stays I clung to faith and hope.  Just praying to get through this one more hurdle and the hope that it was the last one.

But pray, love and hope as we might, it just was not enough and Madeline was gone.  I recall in my state of shock having the thought, “this did not happen”, this COULD NOT have happened.  A Baby doesn’t die from Down Syndrome.  WHO ever heard of this?  So, WHY?  Why?  Why, did it happen to me? Why anybody, why Sweet Madeline?

And…am I the ONLY ONE?

I feel like Tiger and I don’t want to be Tiger.  This is my  problem…I HAVE NO TRIBE!  I have found NO ONE one who is exactly like me, having the exact life experience.  I really don’t want to be the only one.    Being Tiger is actually making me feel more like Eeyore…sad…alone.

I am the only one, that I know of, who has lost their Beautiful Baby as the result of medical complications due to Down Syndrome.  Not that I want anyone else to be in my tribe.  It is painful and sad to be without your Baby.  However, I keep thinking it would be somewhat comforting to be a shoulder for someone else who has buried their own “Madeline.”  To have said yes to life and taken in all the love, wonder and beauty…and are now left with — good-bye.  But you weren’t ready to say good-bye because you were caught up in all the joy that this gift..this child…brought you and your family.  And you waited with anticipation for all that was to come.

Two years later this tapes still plays in my head.  Where are my people…my tribe.  The people that have had an almost exact life experience that can listen and truly know just how I feel.  How it feels to learn that your baby has or will have Down Syndrome.  That experience alone.  Then to hold this child in your arms for the first time and fall completely head over heels.  To want nothing more than to take them home and let them be a sibling to their adoring brothers.  Instead your family exists on a hospital/ICU schedule.    To live this experience and to ultimately watch your child die before your eyes as you stand helplessly by.  WHERE IS MY TRIBE?

The people that know that all life has purpose and know that down syndrome did not lessen the value of your child’s life nor the pain of their death.  The same people that possibly stare at any child they see with Down Syndrome and either want to cry their eyes out or continue to stare,  eyes green with envy.

And just maybe they understand what it is to want to run up to someone they see with the tell tale features, are completely taken in by their beauty and want to tell them all about their “Madeline.”  But you can’t, because you just can’t ask all about their child and then say, “My child has Down Syndrome to, but now she is dead.”

I do have wonderful, caring friends, who have lessened the wear on my boot straps and scooped me off the ground.  But lately, I feel that I don’t  have my place.  It is lonely.    I want to belong, be like someone else, so we can catch each other as we fall.  We can get each other and lessen the wear on our boot straps.

Perhaps it would be a little less lonely to be Winnie-the-Pooh.  Afterall, he has Christopher Robin.  Troubles seem to feel lighter when you have a Christopher Robin.  I need Christopher Robin.

pooh

Perhaps I am not Tiger after all.  Perhaps I am Pooh..and I’m not the only one.  Or, perhaps I am Christopher Robin and Pooh is out there waiting for me.  Perhaps I need to look further into the Forest.

“You can’t stay in your corner of the Forest waiting for others to come to you. You have to go to them sometimes.”
―    A.A. Milne,    Winnie-the-Pooh

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Bethlehem, VA? The untold story – In rear view

Made it through the Holidays.  Partly in a fog with an elephant sitting on my heart. The business of grief is a tough one.  You work long hours without a break and the Holidays just add a lot of “work” to the day.   But…with the help of amazing friends I was not committed.  More on that at another time.

Six days into the New Year and I realized that in the anxiety ridden fog about the Holidays, leading up to the fog of the Holidays, it came to me that I was not as in tune with what The Brother’s were doing.  Oh, don’t get me wrong…they weren’t quiet or anything…I was just half-awake.  Now I am AWAKE and I realize I might have missed about 100 pages of blogging adventures because they have been very busy in the last weekend writing this blog for me.  I will try to adjust my rear view and give you, Dear Reader, the highlights.

Here goes:  In no particular order…

Johnny asked me this weekend why I write a blog about him.  I told him because he was an interesting subject.  Might I add this conversation took place while he was parading around proudly in his new Batman costume.  Oh, was his response.

The following day, he asked me if I could become a surgeon.  For a moment I thought to be flattered.  WOW!!!!  Johnny thinks his mommy is that smart and YOUNG!  Never one to inflate your ego, Johnny cut to the chase.  “I want you to be a surgeon so you can operate and give me Bat Wings and a tail.”  Um, why don’t we just go MAKE you a costume.  A lot less unnecessary cutting involved.  Oh, was his response.

Speaking of New Years Resolutions…because I was going to…I was attempting to make some as Johnny’s Mom.  I fear that I have been sleeping on the job and perhaps Johnny needs a little pointing in the general direction I would like to see him go.  You guessed it…because I like to make my own kind of crazy.  I seem to enjoy being a busy body repairman.  You know, I show up to fix things that  ARE NOT broken and then plant my face in my hands cause you know what you get when you do what you’ve always done?  That’s right, what you’ve always got.

However, let’s not forget, I AM NOT A QUITTER!  So on I continue to repair Johnny.

Resolution:  We must return to religion class.  As you might recall last school year Johnny attended religion/CCD classes.  It was informative and entertaining for all.  Well…maybe not for all.  It is very difficult to teach about God and Jesus (who are not seen) to a child who only deals in what can be seen and touched (unless you are Santa Claus).  But it is important to me so we tried.  We have not made it back this school year but will be re-enrolling ASAP.  This resolution due to recent events

Friday evening, The Brothers had an Epiphany Pageant.  This meant a lot of people crowded into the church with lots of singing, trumpets, etc.  NOT Johnny’s preferred outing, EVER!!!  Where two or more are gathered, Johnny is NOT.  So, I thought it best to warn him and give him the usual lecture on  behavior AND the usual bribes.  Johnny doesn’t work for free.

Johnny – What is this thing called again?

Me – The Epiphany Pageant.

Johnny – Oh. (of course).  What’s it about?

WHAT’S IT ABOUT???  Oh Boy, Houston we have a problem (I think).  My boy does not know the Christmas story, so I gently say, “Who was born Christmas day?”

Johnny – Stares blankly.

Me – JESUS, REMEMBER?

Johnny – Oh yeah, right. (read with zero enthusiasm)

Me – (Thinking, I better get to repairing this).  That’s right, Jesus.  And do you know where he was born?  Which of course brought the response of a blank stare.  So I continue with a great sense of purpose…IN BETHLEHEM.  Remember?

Johnny – You guessed it…Oh.

Me – Because I just NEVER know when to quit…AND do you know where in Bethlehem Jesus was born. ( And that is when I knew I asked ONE too many question.)  Proudly he looks and says, “Virginia.”  At least he didn’t say, “in the batcave.”  Now it was my turn and I responded…oh.

Sadly, that wasn’t even the catalyst for my New Years resolution because Johnny and The Brothers never disappoint.

Driving to church on Sunday.  The Brothers are having a discussion about the “Holidays” of the season.  Johnny was talking about KWANZA.  Why?  I HAVE NO IDEA.  In mid-stream he switches gears and tells us Christmas is his favorite anyways.  And I learned my lesson Friday so I didn’t ask.  Although it is obvious why, even to me.

BUT The Little Brother did.  The Little Brother is oblivious to learning lessons.  Not waiting for the answer, Little Brother offers a possible reason that Christmas is the favorite.  And proposes…”Johnny is it because Christmas has the BETTER SPONSOR?  (Silence in the van…please let him say, Jesus)  SANTA CLAUS!!!  Guess him saying Jesus would’ve really been the Christmas miracle.

The Captain and I roll our eyes and open the doors to release our beasts in the church parking lot and out JUMPS JOHNNY bellowing…for NO particular reason…”and there is PARTIAL NUDITY!!”  Dear God, Please let him mean, Baby Jesus….you know, the one from Bethlehem…NOT Virginia.


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A Moment in Time

I have been out of touch Dear Readers.  I have had a full mind and heavy heart , leaving me with a lot to write about but unsure where to begin.  Different for me, if you have had the pleasure of my company you know…………… I am chatty!  However, at times when the heart is heavy the words become stuck.  This has become the case.

Thus,  I was glad to learn from my friend Kathy over at Bereaved and Blessed it was for Time Warp Tuesday.  Just the motivation I needed.  Kathy invites us to visit an old post, reflect on “where” we were when we first wrote it and “where” we are now, in our thoughts or on whatever “journey” we may be taking.  The subject this months is “gifts.”  Very apropos as Christmas calls us to be in the “Spirit of Giving.”  Easier said than done with a grieving heart sometimes stuck in “wishing” and “hoping” for what “no longer is” or “never will be.”

I chose a post from last September.  We were fast approaching the One Year Anniversary of losing Sweet Madeline and the weight of the grief was suffocating.  Adding to the weight was watching her brother’s grieve and try to comprehend the unthinkable loss of their baby sister.  The Big Brother quite simply adored Madeline and was literally in her face at any opportunity.  Sneaking any chance to be cheek to cheek.  Not knowing what the future held I was quite often telling him to “please get out of her face, stay out of her room, let her rest.”  Reader, as you probably guessed, The Big Brother NEVER DID listen.  

As well, never did I dream this……………… his failure to listen …………….. could quite possibly be the best gift  ever.  I recount the day I received this gift in A Brother’s Love.

Welcome back……….I watched this again for the first time in a long time today.  I am still, today, as touched by the gentle heart my now Really Big Boy still has!!!!   I am even more grateful as I struggle through, without our Precious Girl, to have even just a moment preserved for a band aid for my heart.  To catch just one of those rasberry kisses.

As a Mom, I am on that poor boy all the time to just listen!!  Possibly, I should have learned my lesson with “Madeline’s Moments.”  What a treasure to have a non-listening child sneak in to video his “irresistable” Baby Sister sleeping.  To have this “gift” to watch these moments and feel completely transported to that moment when our Precious Girl lay sleeping in the next room and feel for just a “moment” that I could quite possibly just reach through and kiss and hug that Sweet, Sweet Baby.  And just for a moment I quite possibly felt her touch and  inhaled her sweet perfume…………….a gift………….no amount of money could ever buy.

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All was Right

It is the last “Monday” of the month, and I am joining Lori at Write Mind Open Heart to reflect and share on what is right, maybe even perfect in our world for a moment in time.

No………….it is NOT a typo, you read correctly, it is called Perfect Moment Monday.  Yes……………..I know it is TUESDAY butthought about my perfect moment on Monday………………..if that counts?  However, life got a little in the way on Monday and now, here I am, writing from my own personal time machine.  So, Dear Reader, please humor me and play along.  Please and thank you!

As has been said, “The best things in life aren’t things at all.”  They can’t be bought, wrapped and put under a tree.  At times they appear in what you believe to be the mundane of your life.  Not at all in those moments marketed to be perfect.

Case in point, the child, who shall remain nameless, that looks at disappointment at his gifts on Christmas Morning when he realizes you really meant he was getting that rated M for mature game.   I had already sent my own letter to Santa, was my reply.  Sad child, frustrated parent, not so perfect.

I did not have high expectations of Thanksgiving either.  When you have lost a family member, no matter the age, you struggle through the day to not be filled with grief and longing for your loved one.  This was especially tough since our Precious Madeline’s anniversary is in November and we were struggling so with this 2 year milestone.

However, for her Brothers, we knew we must pull something together and present the makings of a holiday.  Possibly complete with a new tradition.  Shake it up a bit and give all of us something to anticipate.  Something with potential for fun.  So that’s what we did.  With “four” boys in our home who love history, we headed to Gettysburg the day after Thanksgiving.  Excitement abounded……………for The Brothers, as we were going to stay in a hotel WITH a pool.  Not something we do much of so they were pretty happy.

Of course, hotel life and all looks good……………….. on paper.  Actually having The Brothers together in confining quarters is a different story.  Paper………………. not as pretty.  We did get a little front room with a pull out sleeper and t.v., etc.  Best idea Captain Daddy ever had.  Despite our suite,  after the car drive and some museum time, The Brothers weren’t really feeling “Brotherly Love.”  If my ears didn’t deceive me disparaging remarks were flying under their breaths.

Particularly difficult is managing some of Johnny’s autistic behaviors on the road.  Being away can stir up a great deal of anxiety.  And Brother being “good” brothers…………….they don’t always display much sympathy and there is a lot of OMG STOP IT, JUST STOP IT.  (By all concerned)

So where, you may be thinkingwas there any perfect moments in THIS SCENARIO.  Like I said before…………….it came out of nowhere, when I was expecting the fists to start flying I discovered this……………….

Things got quiet, so I walked into the suite (cracks me up to call it that) to see if they had left and what to my astonished eyes did I see?  The Big Brother and Johnny, the MOST unlikely pair, lying side by side on the bed, with their legs touching…..yes, touching………….. and then I noticed their hands.  Their hands were pressed together in that way of comparing and then it happened, their fingers locked together.  What an absolute perfect sight for my sad eyes.  My heart filled to see Big Brother and Johnny sharing this time, albeit brief, when they were at peace and all was right in our little life for that Perfect Moment.

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Gilded Tears

Gilded View

Fall.  Such a beautiful time of year.  I love the crispness in the air.  The breathtaking colors of the leaves.  The warm glow of the autumn sky.  For so long these images of fall took me straight back to high school and memories of shlepping along with the band and football games.

That memory has been replaced.  Now that crisp air and breathtaking colors conjure a much different memory.  One of fear, hope, hospitals and grief.

It was a beautiful November day when I first learned we were going to be blessed with our Fourth child.  Initially we were overwhelmed.    Four children and I hadn’t been in the baby business in 6 years. A surprise blessing you could say. 

Another beautiful November …………..one year later…………..our Beautiful Madeline was here.  Four months and four surgeries.  Finally she was home, we were beyond thrilled.  In the blink of an eye our thrill turned to fear.  With one turn of my back I heard her gasping for air and turned to see her sweet face struggling and blue.  In a blur, 911 was called.  She was rushed to the ER, then promptly to the OR.  Doctors took turns holding the tiniest of tubes to keep her airway from completely closing.  By nothing short of a miracle, a tracheostomy was successfully done, a mere 5 weeks after open heart surgery.  I was numb with fear ……hope and……………unconditional love.

For the remainder of that beautiful fall, I watched the leaves and sky turn golden from the side of a hospital crib.  I could not feel the warmth of the crisp air.  My senses were overwhelmed by the continous beeping of monitors.  My eyes not able to take in the beauty of the foliage for they were fixated on the numbers the monitors were screaming.  Fight songs playing through my head were replaced with pleading prayers for healing

From this hospital room, I  watched the tree grow bare and then droop with snow.  Finally………………. a December morning and with a staff of home nurses Madeline came home……………….we were again, beyond thrilled.  Again, our thrill turned to fear when two weeks later she began vomiting.  A routine follow up became a night in the ICU and more surgery.  Pleading prayers for healing turned to begging God for mercy and strength.

It was Baby Girls First Thanksgiving and Christmas and her stocking was to be hung on her hospital crib decorated with Red Velvet bows.   Madeline rang in the New Year in a Pediatric Rehabilitation Hospital.  Again……… we pleaded God for strength to bring her home.

God heard our prayers…………….our Little Irish Lass amazed us all and finally came home.

Winter turned to Spring and much to our  delight she was with us to done her Easter finery and stare in wonder at the brightly colored easter eggs.  We had gotten over the hump, we just knew it.

Spring to summer…………..many doctors appointment, several near misses………. but she was home.  Baby Girl was a fighter, one tough cookie!  Feisty, you could say.

Imagine our euphoric delight on July 4th.  We had made it!  One Year!!!  Red velvet cupcakes and sparklers all around.  We even got to go to the beach……………Baby Girl got to her dip her toes in the ocean and frolic in the sand.

Roller coaster.  Death defying roller coaster ride………………a concise description of the year of emotions.   But hey, we were taking that last smooth turn for all it was worth.

Summer turned to fall……………..and preparations began for diving into the beautiful fall, renewing our senses with that crisp air and golden sky and rejoicing in our life……………..away from hospitals.  October was pumpkin patches and Halloween costumes.  Our Madeline was a perfectly adorable Bumble Bee.  She stared in amazement at the festive activity and barrage of pictures.  Pinch me………………I was dreaming……………..bring on the Holiday fun.

beautiful November morning, Madeline lets out a scream……………….911 is called……………..here we go again.  Our joy now turns to horror…………….absolute horror.   Pinch me……………………I must be dreaming…………………. a NIGHTMARE!!!  Again………….we pray…………our pleading prayers………….turn to begging……… to hysteria.  Our tears flow and  wrap our body in a pain so raw you can’t believe this is real.  On this November morning, with a  clear blue sky, Our Sweet Madeline took her last breath.  Again I prayed……………….Please God, this can’t be real…………….it was.  It must be a nightmare………………..no……………. it’s your new life.

A week later on a beautiful November morning, with golden leaves and clear blue sky…………….Our Sweet Madeline was laid to rest.  My new fall memory…………………her brothers, wearing blue blazers and white gloves, carrying her tiny casket up to her burial site.  She was laid to rest under a tree, ripe with fall foliage, under a warm autumn sky.

Two years have now passed……………………slow and full of pain.  A golden, warm fall day.  Beautiful and painful.  Trees heavy with golden leaves in a gilded sky.  I  pray for strength………for me……….to find a new way and for healing…………..for our broken hearts.  I still plead and pray……….Dear God, keep my Baby Girl in your care, safe in your heavenly arms…………….until she can be in mine…….on a beautiful November morning, in a warm gilded sky.

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Gate of Faith

Home

There is no good or easy way to tell your child about death, especially the death of their Baby Sister.  Much time is put into teaching them to pray, not preparing for death.  “Pray for our Sweet Madeline and for her Doctors and Nurses to take good care of her, so she can come home soon.”  We recited a version of this simple yet pleading prayer for 16 months.

Left with no words when our prayers were not answered in a way we can possibly ever fully grasp,  we simply said, “God called Madeline home.”  “She is an Angel now with God, her cousins and Grandma and Grandpa’s.”  

As I have not found even this knowledge to be adequately comforting, I often wondered what The Brothers were thinking.  Big Brother is pretty firm in his faith for a little/big guy.  He told me with awe, “Mom, she’s like a Saint now!”  Johnny, so literal, simply said through tears, “she was so beautiful and now she is gone.”

The Little Brother, maybe was the most like me…………… he simply didn’t seem able to take it.  Once all the “doing” was over for her funeral and he was sent back to his “normal” day-to-day routine, you could say the bottom fell out.  He to did not know what to do with this knowledge.  Knowledge that his Baby Sister he and everyone prayed so hard for, was gone……………..she was now in this place called Heaven and it was supposed to bring peace and comfort.  Yet, all around him was great sadness.  His response to his great sadness………………..retreat………..retreat under the desk, in the closet, under the Christmas tree and in the bathroom.  And we didn’t know what he was thinking because he refused to discuss.  However, as they say, actions can speak louder than words so we concluded he was simply as broken and confused as anyone.

Thank to selfless, dedicated teachers going way beyond the scope of their job descriptions, Little Brother began to retreat a little less, and less.  He began to talk just a little but just enough.  One day, his teacher told me to check his folder.  He had written a poem.  I was a little nervous as to what he might write.  I was thinking his favorite (potty humor) or something angry.  I thought…………wrong.  The Little Brother had possibly been sold short.  He hadn’t been shut down as much as possibly he was giving this place Heaven a great deal of thought.  And while under those desks he had been painting this comforting picture………………..

GATE OF FAITH

Just at the gate

Is where you’ll find your fate.

As you see in the bright night

Just coming through

Just follow me and the moon rises

Just come with me

I’ll do as you wish

By the river full of fish

As I lead the way

To the gate of your faith,

Just as we pass trees in peace,

As long as you stay with me

You’ll never be lost,

As the owl flies up in the night sky

You’ll always have your way with me

Just follow me

The gate of your faith

It’s just so hard

To resist the feeling.

(The Little Brother, 2nd grade)

So…………..I wonder, is this what Baby Girl  heard when God Called Her Home?

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St. M’s March

Sweet Bumble Bee

My Sweet Little Bumble Bee.  That is the last photo ever taken.  It is our treasure. 

For two years I have carted  my constant companion, grief.  She never fails to show up, and her presence is unwelcome.  That I have met her and fostered such an intimate relationship is a fact I could live without.   Our relationship is tenuous at best.  She stabs me in my heart at every opportunity.  She thrives on the surprise attack.

I try with all of my might to keep her at bay.  The best I usually do is to remain in a state of a face to face standoff.  I know she is there and I am doing what I can with every fiber of my being to keep going.  In return she stands firm taunting me with each step I take.  I feel that I do a decent job of carrying on.  Some days grief works harder.  Today, she did some of her best work.

Tomorrow is the two-year anniversary of Our Sweet Madeline’s death.  I was prepared for tomorrow.  Today, not so much.

Two years ago, November 1, 2010, was her last day of life.  This is the thought that played on a loop in my head.  What did we do together?  I struggle to remember.  Did I spend enough time with her?  Did I hold her every chance I got.  What about hugs and kisses?  Were there enough?  Is there ever enough?

I remember that evening sitting with her in our chair waiting for her night nurse.  I knew of a little girl with down syndrome and shared the pictures with Madeline.  Telling her she was going to be so strong just like that little girl someday.  Had I only known our someday would never come.  This was our day together, this was to be our final day together.

Grief changed her game on me today.  Instead of how long it has been since Sweet Madeline died, I find my whole being aching for how long it’s been since she has lived.

Today is All  Saints Day.  I went to mass.  Prepared to see the kindergartners dressed in their Saintly Attire.  Not at all prepared for what hit.  Never will Madeline be  5.  Never will she go to kindergarten and NEVER will she march down the aisle to When the Saints go Marching In.

Through my tears I had a thought.  She has done her march.  I like to think she led the March……………the day God called her home.

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Purple promises

Empty Promises

My new running shoes!!!  Awesome, huh?  That’s what I thought.  But alas, like many things lately, I expected too much.

They have me remembering the good ol days.  You know the ones, when a new pair of tennies cured all that ailed you.  If you were slow, BAM! New shoes and you swear your legs move so fast, the Olympic Committee can’t be far behind.  A Wheaties contract is for sure in your future.

Feeling Blue?  New tennies and BAM!  Cloud nine is your new home!  Nothing could keep you down with some new tread on your feet.  Maybe the World could be a happier place,  new tennies for everyone!

All this………….I got from a new pair of SCATS, back in THE DAY.  Imagine my expectations for PURPLE NIKES!?  That’s right………..me and reality…………..we lost touch.  Turns out 5 miles still feels 20 miles.  My legs………weeellll, they still aren’t up to my neck and graceful, like a gazelle.  Yep, still short, and graceful, weellll, NOT like a gazelle, THAT’S for sure.

As for that CLOUD NINE feeling…………I wish, I wish, with my whole being that I still believed happiness could be found in a new pair of shoes.  What I wouldn’t give for the happy Purple color to  take away this unbearable weight of grief and gray.  The most I can hope for is that they carry me away.  Away from this pain that seems to render me immobile and to a place where memories take the weight from my steps and turn the gray to gold.

NOW THAT…………….weellll, that, sadly, is something money can’t buy.  But if it could………………….ooooh, if it could……………….

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A Picture Worth a Thousand Words

First Embrace!

Sweet Baby Girl!  It is redundant but I LOVE THIS PICTURE!  There are days when all I want to do is gaze at photos of Madeline and let my mind go back to the fleeting time we were blessed with her presence.  Brief, yet powerful.  Filled with such emotion.

Today’s quest?  “Tell us about your profile picture.”  My pleasure…………………….

This picture is a definite favorite.   She was 4 months old and this was her third life-saving surgery.

When I look at this photo I don’t immediately call to mind the horrific terror of  that week.  I remember the joy.  You can see it in my face.  This photo is of Madeline and I about 7 days after she received her trach.  She was soooo fragile and her life had been so touch and go that week.  To let her weary little body rest and  protect her airway, she had been in a  heavily sedated state for days.  We had been unable to touch, let alone hold her.  So, imagine my joy when finally we got see her beautiful eyes and touch her petal soft skin.

Sitting here writing this, I can remember.  I closed my eyes and I can recall the touch of her little hands and the feel of her cheeks on my lips.  It was such a joyous moment.  In fact, I was so caught up in it, it was her Respiratory Therapist that grabbed my camera and took the picture.

Such a scary week it had been.  This was the time we thought we might lose her.  But this was our time.  Our time when our prayers were answered.  Confirmation of our hope, faith and a belief that miracles can happen and this cherised photo is my tangible link to that once upon a time when our miracle happened.   

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Light O Mine

Light of our Lives!

This little light of mine
I’m going to let it shine.
This little light of mine
I’m going to let it shine.-
Let it shine, let it shine
Let it shine.

I received a notice that today was Pregnancy and Infant Loss Remberance Day.  We were asked to light a candle at 7 p.m. (whatever time zone you are) and let it burn for at least an hour.  There would then be a wave of light to remember all of these beautiful Little Souls who left their Mommy’s, Daddy’s and families way too soon, either before they ever drew a breath or their breath  suddenly, one day, stopped.

Our Sweet Baby Girl got to be with us for 16 months.  Sixteen months that were filled with many ups, downs and touch and go moments.  The reward, HER………….. Sweet Madeline.  She was a light, whose flame immediately lit up any room.  The flame so intense it filled your heart and soul with peace and joy.  Unexplainable joy!  Just look at that sweet face!

So today, at 7, I lit my candle, placed it by Madeline’s picture and stood and stared.  My heart heavy with grief, yet still basking in her light.  The power of love, unconditional love.  God called her home yet left us with the gift of her eternal flame.

Today I am pondering the Beauty of Madeline and how much I share on social media.”  My answer………………..A LOT.  More than most, not as much as some.  Social media has been somewhat of a saving grace for me.  Yes, such grief and loss is deeply personal and very difficult to share with people one on one.  Social Media gives me the freedom to share  as much or as little as I like.  I tend to not view it as strangers reading my story but that I am just putting it out there.  Unloading a little burden, trying to lighten my load and find my way.  Whoever chooses to read, may.  Putting my grief and loss in words, much like a story, gives some meaning to such sadness.

My sharing helps me keep her Memory alive and that others know her life, though short was full.  Full of love and a little light that continues to shine.

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