Category Archives: Precious Baby Girl

Reflection on our Precious Baby Girl, Madeline, the sweet joy of her 16 months with us, and our journey through loss and grief.

The More Things Change

Late to the party…AGAIN!  Here it is Wednesday, night at that, and I was supposed to be doing the Time Warp on Tuesday but, alas, it did not happen.  My blog post spent the day traveling around in my head, festering and mixing with my Middle School substitute teaching gig.  That is a lot going on in one mind and I already seem to operate on distraction mode.  Wanting to give my hostess, Kathy, at Bereaved and Blessed, my undivided attention, I asked if we could do one of those “day after” kind of things.  You know, like when you have to be too many places on Thanksgiving so you have a dinner the next day.  Personally, I’ve heard of this but my attendance has never been that demanded on any given day.

The theme for this party is April.  Kathy invites us to do the Time Warp and revisit a post we wrote in April, about anything.  And then reflect on how things have changed since then.

Sounds simple.  Problem.  I have not been blogging too terribly long but knew I had at least one April under my belt.  So I checked.  Nothing.  So I checked again.  Nothing.  So then I looked to see what was going on and discovered I had nothing.  I had written nothing last April!  And then it hit me.  I checked back and discovered that last year the closest I came were a few posts that I wrote in March.

Although April is a time of new beginnings and all things blooming, last year I was more stuck in what we called in California, “May Gray.”

Last March,  Madeline had been gone 16 months.  She was 16 months old when she died.  Easter was approaching.  As a dear friend, who also buried a child said, “something about Easter just sends me over the edge.”  Amen.

In addition, I was trying to prepare myself for an upcoming move which would force us to pack away our Sweet Baby Girl’s things and I was having a very hard time coping.  I couldn’t bring myself to put myself out there, so I didn’t.  I retreated.

But before my hiatus I reflected on the realization that Madeline was now gone as long as she had been alive in “Sweet 16, Baby Girl.”

The more things change…the more they stay the same.  Almost a year later and I am still in that place…the place where I still think, “how the HELL am I going to keep doing this.”  The 2nd day of each month, my heart feels a little heavier and tears swim behind my eyes.  And the what if’s and if only’s…they are still there as well.  As for that Detective…yes, I know he might have been doing his job, but I am still mad at him.  Some common sense and compassion would have been nice. Instead of explaining to him what Down Syndrome was and her medical history, I could have been holding my Sweet Girl for a few last precious minutes that I will never, ever get back.  Sadly, the hospital did NOTHING compassionate, whatsoever!  And this still haunts me.  And I still miss her every second of every day.

As counting the months turns to counting the years, the hole in my heart does not seem to heal but the love that Madeline planted there continues to grow.

And this… this I still believe:

“For 16 months I knew I saw a quiet wisdom in her eyes and was sure I must be looking at the face of God… for she was perfect in our eyes.

You are loved Precious Baby Girl, you are loved and adored, and you were and are……………….GOD’S PERFECT CREATION.” 

Balancing Act

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This is supposed to be “semi-wordless” Wednesday, but mine is actually, “Write on and on Wednesday” as I have much to say.  If you have been following Life According to Johnny you might be familiar with the “Krispy Kreme” symbolism.  And that sadly, you are aware that it does not mean I love, love, love donuts and can’t get me enough donuts!  In my “world” it actually symbolizes, ENOUGH, ENOUGH ALREADY!!!…I CAN’T TAKE ONE MORE BITE OF CRAP SANDWICH…AND I AM ON THE EDGE!  What edge?  That edge where people begin to refer to me in terms of…”you know…before she…really lost it, or…well, you fill in the blank.

If you are a little confused about how, when and why Krispy Kreme became an adjective in my life, read here, Krispy Kreme Memories.

Like then I have a certain amount of daily stress and other unseemly weight I carry with me.  I know, who doesn’t?  That said, as well as I “think” I may be doing keeping my life in balance, apparently that balance is of such a delicate nature that the tiniest items added to one side of the scale and WHOOOAAAA, I lose my footing on the tightrope, hit myself in the head with my balancing stick and go into a free-fall, thus becoming the previously unannounced act in my own 3 Ring Circus. 

The result, straight into Krispy Kreme mode and a property manager who has surely changed his phone number by now.

Try as I might, not a day passes that I do not feel the weight of loss and grief for Our Madeline.  I operate that that is a given.  I then worry about giving The Brothers a home where they know their sister is missed but that does not keep them from having a childhood and all the positive things you want for your child.  With all the upset and turmoil they have endured, I worry about yet more change.

As with a lot of things in military life, change is something that is usually out of our control.  The dominoe effect of one military persons move is truly mind boggling.  Last week we were reminded of that fact yet again when (seemingly) out of the blue we were informed that the owners of our house were to be returning to the area.  That phone call packed just enough power to push me right off that tight rope I had been walking with such precision.

Moving, in itself, I know, should not be considered traumatic but given the extenuating circumstances, I am just that…traumatized.  Funny, because I know I’m tougher than that.  After what I have endured this should be nothing but it has turned into a big ol something!  The thought of changing, anything on The Brothers, yet again, feels like too much.  Johnny has been doing so well and I pray this does not pile on a whole new level of anxiety and an escape into his Batman world, which I know feels safe and comforting for him, but not so much for the Mommy.

Our hope is to remain in this little neighborhood and right now I am dedicated to that cause.  So, if I show up at your door…run!

Sadly I know this is NOT the WORST.  I know the WORST and this in comparison is a minor inconvenience, if that. However, when you realize you are running on reserves the idea of an inconvenience seems like yet another bite of crap sandwich and frankly, I am full.

Be that as it may, I better chew each bite 20 times, drink some water, wait for another bite and in the meantime get back to walking that tight rope.

Blessed be the “lucky”

Days late a dollars short.  That sums it up.  Another one that crosses my mind, “the best laid plans of mice and men”…is that even a saying?  I think it is.  Or the absolute best, “Life, it’s what happens when you are making other plans.”  Yeah, that’s the ticket.  Not the winning ticket, just the ticket.  Me and winning, we have issues…many issues.  Because that thing they call, “Luck“, well, Lady Luck and Mr. Winner, I believe they are a happy couple, possibly, a former neighbor, in some former life, that I have really ticked off and they are out to get me.  And let me tell you, they are relentless.

I will blame it on the time change, I think that is a given in this first week and I am doing the Timewarp on Thursday, instead of Tuesday, because while I was making my weekly plans, Mr. Winner and Lady Luck, they were beginning their pursuit.

My friend Kathy at Bereaved and Blessed hosts this party once a month.  The purpose to find a post we previously wrote, reflect on where we were when we wrote it and what has happened in our lives since.  Ironically, the theme this month is Luck.  In honor of St. Patrick’s day and how the leprechaun and shamrock go hand in hand with this day.

I chose this post from a couple of months ago.  It is entitled, “Darn the Luck.”

My tenuous relationship with the subject is evident.

I married into an Irish family.  I have the O’ name and everything.  But the luck.  My sister-in-law calls it the Kennedy Luck of the Irish, without the fortune.  As our family has endured many infant deaths and sorrow.

Possibly a reason I am a couple of days late to do the Timewarp as I have been ruminating on this subject.  See, I don’t know if I really believe in “Luck”.  I am wondering if it isn’t more about one’s circumstances, reactions and perception.  Because what you might “see” as “lucky” I might see as unavoidable circumstance that I am doing my best to “deal” with.  Or have been continuously working behind the scenes to create the illusion of luck.

I have fostered this belief after the last two years of gut wrenching grief and several years of Johnny’s life (and ours) with Autism.  I am often rendered speechless (not easy to do to me) by how others have been at the ready to remind me of how Lucky I am.

The best of the worst.  “You are “lucky” that you had Madeline for 16 months, you didn’t even expect that at first.”  I have said this before, if you have children, look at them, then tell me which one you have had enough time on this earth with.  Then get back to me on my “luck.”

Also that I am lucky I have three other children.  Yes, I adore them, I cherish them.  They are each as irreplaceable as their Baby Sister.  Although their presence can provide comfort it does not make up for or take away from the fact that Madeline is gone.  Easing grief is not, nor should it be, the role of my boys.

Another, “Oh, it’s just her heart, because she just has to have open heart surgery and she will be fine.”  Luck being implied.

I have also been told I am lucky that she could be laid to rest by her cousins and family.  While I am grateful this is true, and I know she is being watched by her loving Grandparents, Aunts, and Uncles, I believe this falls under horrible circumstance that we are trying with all of our might to make somewhat bearable.

Johnny is considered “high-functioning” on the autism spectrum.  Yes, I know, I am “lucky” that “he does so well.”  He reads well, is able to mainstream and is considered bright.  People always like to tell me that I am “lucky” in this situation, they can always tell me a story of someone who has it “worse.”  I’m here to tell you, parents of children with autism are not in competition to see who has it “worse.”  Because actually, we love our children for who they are, the unexpected joy they bring into our lives and the constant lessons we are learning.

As far as how “well” Johnny does, this is not “luck” it is your perception of my circumstance.  Because what one might perceive as “luck” is actually the result of a great deal of hard work, sleepless nights, many IEPS, therapies and early intervention.  He has been a full-time student since he was 2.  Johnny is not just “lucky” he is one hard-working little boy and has worked hard for many skills many people do not give any thought to.  Although, maybe every child should have an IEP goal of raising their hand and waiting their turn.  Just saying.

Please do not misinterpret, Dear Reader,  I am blessed in many ways.  Those blessings include many friends and family who pray constantly and do many other behind the scenes good deeds so that I am standing upright, showered, wearing somewhat clean clothes, and am here for the Brothers and The Captain.

These Dear Friends and family members take me on runs, pour me a drink, make me soup, take flowers to my Baby Girl when I cannot, listen to me cry and then stand me up again.  And then turn around and do it all again.  Lucky, I don’t know…Blessed…definitley.

Matters of the Heart

It’s that time, well, actually, past that time but I guess when it comes to doing the Time Warp, time is relative, right?  My friend Kathy at Bereaved and Blessed hosts this blog hop once a month.  She explains,  “The gist of Time Warp Tuesday is to revisit and share some of our favorite blog entries from our archives and reflect on our journeys since we wrote them.”

(To read more: http://bereavedandblessed.com/2013/02/time-warp-tuesday-heart/#ixzz2KoF8xqFH)

Appropriately, the theme for February is  heart.  With Valentines Day upon us the matters of the heart are all around us.  Everywhere you look is your big chance to show your affections by showering your sweetheart with Valentine sentiments.  To show them what is in your heart.  Thanks to good marketing the possibilities are endless.  Your choices  span from heart shaped pizza to donuts to chocolate, to cookies, to tasty truffles…and if you are really lucky…big gluey, sticky construction paper hearts with rough edges and cryptic messages written with the best crayon left in the school supply box.

I wish matters of the heart were always this clear.  But they are not.  The heart is delicate and can be broken.  Once broken, not easily healed.  But being a complex organ it is capable of loving beyond measure despite being cracked.

And how would it be if matters of the heart were always so clear as to be eloquently stated on a heart shaped piece of paper?

When I began my blog in May of 2010, my heart was newly shattered.  There was no “healing” taking place.  I was too numb to even consider that “h” word.

In fact, when I first began writing, the subject of such grief and pain was only mentioned as an after-thought.  You see, I was seeking only to entertain.  My intention was to write the humerous antecdotes surrounding Johnny’s adventures.  When I went back and read through a few posts I found I skipped around any matters of the heart and stuck to the topic of my Johnny and his brothers.  This then  became a sort of escape.  Then my life could appear only funny, and not sad.  Tears of a clown, isn’t that what they say.

With my heart not in it, blogging was more of a chore.  Even though I really, really love a good story, followed by a big ol belly laugh, while ignoring the contents of my heart it was becoming too difficult.

Around the 16 month anniversary of Madeline’s death I was overwhelmed with fresh grief and sadness.  The thought that she had been gone from this earth as long as she had graced and blessed us brought a wave of emotion.  This mixed with the memories of her last moments haunting my days.   I felt a certain anxiety pushing me to try to assign words to these feelings.   Instead of thinking what readers wanted to read, I listened to my heart.

So I chose this post I wrote in March, 2011, at the 16 month anniversary of Madeline’s death.  I have since been told on many occasions that I write from my heart.  But that has not always been true, I can pinpoint when my writing shifted.  This, I believe,  was my first product of listening to the calm place in my heart and not all the noise in my head.  And in that calm place I dumped the contents of my shattered heart into this post and the words seemed to flow.  Fluid but raw.

It is entitled, “Sweet 16, Baby Girl”.

Almost a year has passed and my heart has moved from the sharp pain of shattered fragments to an ache of longing and emptiness.  I feel that I no longer remember  who I was before Madeline was born let alone the person I was before she died.

Pouring my heart out in this space has helped put a few pieces back together.    As you know by now, that post was just the beginning and I continue to write about Madeline, her life, and my life after loss.  At times it is very raw and other times my heart simply overflows with love and my sweet memories

I still struggle with many “if-only’s” and “what-if’s.”  Unloading some of this has brought unexpected rewards.  Instead of people running away in droves I have actually developed relationships with others, some struggling with a similar loss, some who just have a better understanding of my world and strong shoulders.

It is difficult to quiet all of the noise.  To make any sense of how and why this is now my life.  I don’t know if this is something my mind can answer because in matters of the heart, there is a voice from the broken pieces, trying to be heard, if only one will  listen.

Timeless

I’m a little late but nonetheless I jumped on the bandwagon.  I’m not usually one to follow a television series, especially a drama.  But a few weeks ago every where I looked I was reading about the highly anticpated return of season three of Downton Abby.  I generally love any stories set in that time so it felt like a win-win.

After watching episode 1 of season 3 I was in.  I then pooled my resources, got my hands on seasons 1 and 2 and proceeded to watch as if it was my full-time job.  Turns out you can get a lot of laundry folded with the right show to keep you on the sofa.  Downton Abbey was just the ticket.  My family has never looked so fresh, clean and neatly pressed.  Turns out the clothes don’t look so bad if not left a wadded mess in a basket.

Plus after watching all those housemaids work themselves silly, pulling my clothes out of my large capacity dryer seems the least I can do.  Still, I can’t say I was motivated to scrub my floors but Rome wasn’t built in a day.

I am fascinated by this show.  The life of the English Lord and Lady.  A life where you seem to spend a great deal of time changing your clothes, eating and drinking wine.  And the best, they don’t even dress themselves or do anything for themselves for that matter.  Needless to say I have spent the last couple of weeks completely entertained by all who dwell in Downton.

Fast forward, with dedication and hard work I managed to complete seasons 1 and 2.  After flipping through my DVR, I am officially caught up.  Which leads me to Season 3, episode 4.

Spoiler alert if you have not been watching, but I must share this.

After watching the first 2 seasons I was prepared to be mindlessly entertained.  And then things got real.  I believe it is episode 3 that I thought my place at Downton might be lost.  As I watched Sybil labor so painfully and all the talk of preeclampsia, I knew things weren’t going to end well.  What I was  not prepared for was watching Sybil die.  And Sybil’s Mom watching Sybil die.  And everyone standing there, and NO ONE doing anything because there was NOTHING they could do.  And Sybil’s Mom yelling at everyone to “PLEASE DO SOMETHING, THAT’S MY BABY!”  Her calling out for Sybil to “come back” to “just breathe.”  Watching her baby struggle for air and turn one horrific shade of purple, then another.  And still Lady Grantham continues to beg her baby to come back, don’t go.

I am aware this is fiction.  That Lady Grantham and I are more than worlds apart.  But there are some things that history and time cannot change.  My body felt numb and cold watching this, as I have lived a very similar scene.  I was watching my real-life nightmare being played out on my television.  The begging, the pleading.  The utter despair as you watch everybody around you accept what you refuse to.  Reason would have said, SHUT THE DAMN THING OFF!  But not always reasonable, I didn’t.

As I watched her talk and say “good-bye” to her “baby” tears streamed down my face.  Such a touching scene.  But if you have lived a much to similar experience it is almost too much.  The way she just stroked her skin, taking her in, to commit to memory every detail of her child.  Because, truth is stranger than fiction and you are afraid.  Afraid you won’t remember, how they feel, the lines of their face, their sweet lips.

Touching and heart wrenching last night’s episode really hit home.  Someone mentioned to “Lady Grantham”, “now that that’s over.”  Her reply resonated with me, “when one loses ones child, is it really  ever over.”  The look of terror on everyone’s face when they realize their new normal that they cannot “fix” this problem.  Even the Dowager still tries to at apply  a bandage by forcing the doctor to tell the parents she would’ve had no chance of living.

I still have a few unanswered questions about the morning that Madeline died.  Some what-if’s and if-only’s.  If they were ever able to be answered would I find some relief or would wounds that have soothed somewhat be scraped raw again?

I don’t know why I couldn’t pull myself away once my “escape” became a mirror of reality.  But in a way, I think it was a little affirming.  Watching so many of my feelings and emotions acted out for me.  I wanted to scream, YES, THAT’S IT, THAT EXACTLY HOW I FEEL/FELT.

Truth is stranger than fiction.  Always we crave answers that aren’t there and an ending to our pain that might never come.  Quite possibly a feeling, experience that the neither the passing of time nor generations can change.

Perfect Love…Forever

Lori  of Lavender Luz challenges us to look the perfect moment.  If you look hard enough, they are all around you, you just might not be seeing.  The more you see, the more you will find.  Which was my thought as I stood in The Big Brother’s room last night staring at a photo.

But in the beginning…

I was a steadfast on holding onto my motto, “I’m a BOY mom!”  My other battle cry, “NO! I am not going to have anymore, have you met my boys?”

The Big Brother had to have been in ear shot of all of this.  Afterall, I do have a big mouth.  But as is his habit (or anyones, for that matter) he had fine tuned the skill of selective listening.

He was in second grade when the family moved in across the street.  A gorgeous family with three adorable little girls.  His favorite, Baby Mollie.  He couldn’t get enough of her.  Blasting into the house he would brag about how good they said he was with her.  To which he would use as ammo to plea, “see Mommy, if you have another baby, I can help you, cause I’m good at it.”  While I was touched… this was not enough to motivate me for further sleep deprivation.

Another tactic he used in his ongoing argument was his assurance he would not leave me “all alone” in the hospital.  “Remember when Little Brother was born and I came to visit you?  Wasn’t that nice?  If you have another baby I will come and visit you, again.”  All very touching but still, I was remembering the much wanted, neglected hamster I had been caring for and  was not completely buying what he was selling.  Touching as it was.

So, imagine his great joy and delight when much to our surprise, The Big Brother was going to get his wish.  A Baby, just what he always had wanted.  The newness of his two brothers had worn off long ago so he couldn’t wait for his new brother or sister.

I don’t recall him wishing for a brother or sister but I remember he wanted to name a baby girl, Tootsie.  He thought it would be great fun to be able to call her Toots.  Boy, girl, he didn’t care, he was on board, 100%.

When Madeline arrived he in love had been making great plans for homecoming.  I remember being just so sad for him, when he was told Madeline was rushed back to the hospital and would be there for many weeks.  That, was not what he had been planning.  He had been practicing for this moment for 9 months.

But good to his word, he was a faithful visitor and from the start, an adoring, loving Big Brother.  Any chance he got, he was at her side or picking her up, or squeezing her with all his 10-year-old might.  I could just kick myself for all the times I begged him to “give her space”.   Because I learned too late he just couldn’t get enough of all that cuteness…no one could.

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When finally, Madeline was going strong and spending more of her time at home, Big Brother took full advantage.  A favorite memory, I was taking her to get a picture taken in her Easter dress.  He skipped a laser tag party, grabbed his Sunday best and insisted on private photo session.  And yes…it was that precious.

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When Madeline died, within moments I thought, “I cannot tell him, how will I tell him, his much adored, desired Baby Sister is gone.”  In the end, I wasn’t even there when he was told.  A teacher whose care and compassion carried  The Big Brother through that year, was there.  She said she will never forget that moment.

As time has passed Big Brother, with some strong faith and guidance, seems to be in a different place.  Gone are the days of him asking can we “get” another baby, can we please adopt, Mommy?”  The permanence of this loss was too much on his heart and mind but he has seemed to tuck it somewhere inside himself.  Slowly, I thought, he  had moved on.  He had ceased talking as much about her and requesting to “visit” her in Chicago.  All healthy, I was assured, but still, caused a  sadness in my heart wondering if he thought of her still or had he, perhaps, outgrown his Baby Sister.

But 13 year old’s nature being what it is, I had not thought of a good way to ask without causing any unnecessary trauma.   Also, I knew I needed to be happy for this contentment and maybe I should be taking notes.

The Big Brother uses his new treasure, his  I-Touch as an alarm.  After learning we were going to have a weather delay, I went into his room where he was sleeping to turn off his alarm.  I picked up the I-Touch to crack the code on turning off the alarm, then I pressed the button to turn on the screen.  And much to my heart’s delight and through  a few tears this is the screen saver I saw my Big, Boy’s Boy 13-year-old I-Touch.

Madeline at HSC

Don’t misunderstand, I am very glad that he has found peace.  But I cannot tell you the warmth that filled me up to see the Forever Love he has for his Madeline and the quiet ways he has found to keep her close.

My heart is grateful for that perfect moment in time to witness such sweet and tender-hearted love for Madeline that I mistakenly thought had faded away.  Perhaps, instead, has found a deeper place to grow.

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

The More Things Change…

Let’s do the Time Warp Again.”  On the second Tuesday of the month, Kathy at Bereaved and Blessed hosts a party in which the game is to look through your blogging archives and chose a previous post in which you mentioned the theme, then reflect on what has changed on your journey since that time.  The theme this month is Change.

At times I truly believe that old saying, “The more things change, the more they stay the same.”  Except I tweak it by adding…at least a little.

I have only been at this blogging business since May, 2011.  My first published post was on May 18, 2001.  When I started blogging (at the great and not so gently urging of friends) I wanted to be funny and witty.  I fancied myself a modern-day Erma Bombeck who would entertain with humorous anecdotes.  Mostly about Johnny and The Brothers.  I had always wanted to do that.

The problem…how was I going pull that off when I was only beginning to function a mere six months after burying our Beautiful Madeline.  Initially, I didn’t even plan to discuss her death and our paralyzing grief.  I wanted people to read and I thought if people tuned into all that, well, they wouldn’t come back.  But I am learning you cannot accomplish any goal if you are going against what is in your heart and on your mind.  That path leads to nowhere.

The post I chose is the first one I wrote where I mention Madeline.  I am discussing how Johnny is helping me cope with missing her.  It is rightfully entitled, “Just Too Much”.

Going back through my archives this what not initially my choice for this Time Warp, but when I read through I changed my plan midstream.  I read “Just Too Much” and couldn’t believe I wrote it.  Yes, the Johnny anecdote is one thing.  What struck me was the somewhat nonchalant tone I took when writing about Madeline and that experience that day.  It sounds so restrained and sterile…detached.  Because, believe me, I was there, that was NOT quiet sobbing.

I think when I started this blog I was so focused on what direction I thought I was taking my writing. The path that would save me.  The path that would put a band aid on what wasn’t broken and let me escape my own nightmare.  But somewhere on this path I discovered it was leading me in the wrong direction.  And I couldn’t keep up the dueling personalities any longer.

Today I like the path my blog is taking.  Life According to John is now reflects only ONE me.  The real me.  The me that likes a good belly laugh, especially at the absurd and most especially at the everyday absurd that is the chaos of my home.  But it also is the me that still longs and aches daily for Madeline…that still chokes back tears when everything seems to be too much.  

And now when it is just too much I dump it one here and each time I write about Madeline… her life and our life without her…I know I am taking a just one more step, a very small step,  on the path to Just Right.

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.

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.