Tag Archives: trisomy 21

My Say

Today, like many others, is very bittersweet.  Filled with too many emotions that drive me to distraction.  All around the talk of the Big Snowstorm.   So, here I sit, in  a daze, waiting for the big one to hit.  I have a stocked fridge, pantry and a really good bottle of red if it really hits the fan.  Cabin fever, that is…

Snowstorms sound so romantic, nostalgic, and kind of like a Hallmark Network feelgood movie.  Images of making warms soups, hot cocoa and sitting by a roaring fire.  Your wholesome snacking  enhanced by playing board games and putting together puzzles with your family.  Only taking a break from the warmth and hilarity to dash out and frolic together in the snow.  

I wonder where that family lives?  Because as soon as I get their address I’m heading over while the roads are still clear.

If and when this epic March snowstorm hits I’m guessing the Hallmark movie playing in my head is not the same Reality show that will play out in my home.  Yes, there will be lots of snacks.  Mainly me stuffing myself with chips and diet coke to ensure my sanity.  The warm delicious soups I want to make will only be consumed by me.  Because as Johnny likes to tell me, “me and my brothers only eat good food.”  If you can’t compete with Kraft Dinner and Tombstone Pizza I find it best to just wave the white flag and carry on.  Plus, all that homemade goodness warms my tummy and fills me with fortifying vitamins until a respectable time comes that I may, shall we say, partake of a bottle I’ve been saving for just the right moment.  That moment would be the moment just before my last nerve ending pops through my skin and my Hallmark movie turns into a Simpsons episode.

I don’t care how much space you live in, a lot of testosterone is just that…A LOT!

The brothers are, of course, excited about the possibility of a snowstorm!  Well, a SNOW DAY.  But really, who doesn’t enjoy a good snowday!  They are full of possibilities.  Like I said, when I find out where that family lives, I will let everyone know.

I would be excited just to be able to stay in my jammies and not pack lunches.

It has been a couple of years since we have enjoyed a good snow storm.  This predicted storm would be so simple.  All that I require I already have at my disposal.  I should be filled with anticipation, excitement, and a warm cozy feeling… right?  But I am not.

My heart does not feel light.  Something very heavy is sitting on my chest and is causing my constant ache to begin to throb.

For the last big snowstorm jammies and wine were not even on the list.  My list consisted of ensuring that all durable medical equipment in the house was fully charged.  That all trachs and supplies were fully stocked and all oxygen tanks ready to go, if necessary.  Checklists like, did we let the Utility company and Fire Department know that we have a child with a trach in case power goes out or our street becomes inpassible?  And then the moving of a mattress and all medical equipment to the family room to be ready for when the night nurse calls to say she cannot make it to our house and we are “on”.

That was the last snowstorm I remember.  It was nerve wracking.  It was scary.  It was exhausting.  And I want it back.

I want to still be that Mommy.  That Mommy that has a Baby Girl with an extra chromosome and all that comes with her.  All the extra  that made Madeline…Madeline.  It was hard work and she kept me going 24/7.  And I miss every damn bit of it, every damn minute of the day.  And yes, I would do it again.  And NO, I did not like my baby girl to suffer, to undergo all of the surgeries and other poking and proding but I miss HER.  I just do.  It is that simple…and that complicated.

Try as I might I am having a very difficult time finding a new occupation.  Someone forgot to ask if I was interested in getting a new job when the angels were sent to carry her home.  They forgot to ask if  I had my resume together.  Because the answer is no.  The answer remains no.

Really, someone should ask before they take the best job you ever had, and with no words spoken, inform you it is your last day.  Your services are no longer needed.    Because if they had I would have said, please let me stay.   I will do whatever is required and more.  I’ll be on call 24/7 and never strike.   I’ll work for snuggles and rasberry kisses and will not demand a raise.  Let my bonus be watching her first steps and her first day of school.  Let my vacation in the sun be the illuminating smile on her precious face.

But no one ever asked…so I never got to say.

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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.

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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.

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She Rocks!

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Madeline – Rockin that Extra Chromosome!

I have been doing some lurking around the Down Syndrome Community.  Funny, that I feel the need to lurk.  So many emotions…the heavy hearted longing and wishing that things were different.  That I to could share pictures of Madeline rocking her extra chromosome and discuss the triumph of her hitting her milestones.  What I wouldn’t give for a video of her first steps or first words.   I see the photos of the other children and I can stare for hours.  Sometimes they make me smile.  And other times the tears silently flow.

I have a dear friend with a little girl, Ms. O.  Ms. O and Madeline would have been the same age.  Ms. O’s Mommy asked me once how I felt when I saw Ms. O.  I told her, ” I feel insanely jealous”, not in a hateful way, but in a way of wishing that I could be just like you.  A jealousy that perhaps only a mother of a child with DS would understand.   That instead of me going through hoops to get that Little O to hug me, my own Madeline could be here to warm my heart with snuggles and slobber me with kisses.

Do I still belong to that community?  I don’t know.  But do I care about that community?  WITHOUT A DOUBT.  When I see the other babies and children I think how lucky their family is.  Lucky to be blessed with this incredible person.  I know these families might think I “romanticize” what life would be like with Madeline.  Maybe I do.  I remember it was a lot of work.  Lot’s of appointments, hospitals and therapists.  It was exhausting but the pay off was beyond huge.  One cannot put a price tag on unconditional love.  Giving Madeline life and making that life full of unconditional love and unlimited possibilities.  She was strong in mind and body.  If her body was weak her Spirit was not.

That is what I see in the Down Syndrome Community.  Strength of spirit!  And the unmatched determination for  these children and adults to live a life where the possibilities are endless.   I see a community that wants nothing more than all people to know this about them and their child.  Isn’t that what any parent wants for their child?  I did…I still do.

March 21 is National  Down Syndrome Day.  3-21.  I love it!  I even got the t-shirt.  But this year apparently, they want to spice up the campaign and give it a theme.   Make it “Odd Sock” day or something like that.  I don’t even know the theory behind it.  My beef, why would anyone (especially, working on behalf of Down Syndrome) use the word “Odd” in its campaign?  Instead of helping others to move forward in any archaic beliefs they have about Down Syndrome, doesn’t this take us back to the world where the children were called Mongoloid and thought to have very limited capabilities.

Because I have learned first hand,  more people than you think still hold these beliefs.  The belief that these children and adults are somehow a burden on their families.  Sad but true…in any day and age…but now that we supposedly know better.  More than one person had tried to comfort me with Madeline’s death by telling me she would have had so many challenges in life or questioned who would’ve cared for her.

Don’t we all face challenges of some kind?  Aren’t we all a little “Odd”?  I know I am.  Ask my family, at times it makes me challenging to live with.  My boys would be more than happy to agree.  We are all different.  But for many of us we appear, “normal.”  There are no tell-tale signs of what makes us unique.  For the most part this prevents us from dealing with some long-held beliefs that others might see our life as less than in some way.

But for those who have the extra chromosome their path might not always be as smooth.  They will more than likely confront a road block or two.  Although much progress has been made, we are still in a time when as little as three years ago, when I first learned Madeline had Down Syndrome, I was then offered an appointment to terminate my pregnancy.

In order to challenge and change the belief that life with an extra chromosome is somehow of lesser value or even a “burden” I believe an easy step would be to refrain from using the word “ODD” when showing support for a community we love and care for.   Odd usually has a not so great connotation, like, “Odd man out”, “Odd-ball”, when something doesn’t seem quite right we say, “well, that’s odd.”  I could go on:  but I won’t.

Perhaps I do still have a place in the DS community.  Because when I read or hear things that remind me there are still many archaic beliefs about having a child with down syndrome it makes me crazy.  I would gladly work for any child to have the life I wanted for Madeline.  A life any parent would want for any child.  I don’t find that “ODD”… do you?

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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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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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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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Mirror, mirror…..

Ten Years Ago….

Ten years ago, my life was soooo simple.  Looking back, that is………in reality it was always something.  Ten years ago I had three baby boys, ages 3, 1 and newborn.

I was breathing a sigh of relief that The Captain had returned from Iraq safe, sound and just in time for the Little Brother’s birth.  I recall my biggest worries being potty training and sleeping through the night.  Now, don’t get me wrong, these are huge deals when you are a sleep deprived Mommy trying to convince someone that going on the potty for a few M&M’s is the deal of a lifetime.  Said child was not and has never been that gullible.  Also, sleep has never been that popular with any of The Brothers.

More experienced, perhaps wiser Mom’s would tell me this time will be over before you know it.  Another favorite, “just wait, this is the easy part.”

Today I am pondering how this statement, suddenly, became my truth.  More specifically, how this truth has affected my whole person, both inside and out.  With three baby boys, the effect on my  appearance seemed more cosmetic.  My insides matched my outsides, shall we say.  Inside I was frazzled, thinking, what the heck am I doing, I may never sleep again, and will my rear end forever touch the back of my knees when I walk?

Physically,  you could see, I was frazzled and I was sleep deprived.  This was obvious from my deer in the headlights look, accompanied by the most striking ebony circles and cloud like puffs that surrounded my eyes.  Never did I believe that these would be the good ol days.

Fast forward ten years and my face has, a much different look.  Yes, I still have a bit of that deer in headlights look but for other reasons.  Three years ago, it was from wondering how I was going to care for two children with special needs.  I was just really wrapping my head around autism (well at least trying to) when we discovered our new baby would have an extra chromosome.  Autism and Down Syndrome, what were we going to do?

Three years later and we are still wondering what we are going to do.  Again, it is different.  That scary time, three years and a half years ago, now seems like the good ol days.  Scary time that still had hope.

Where are we now?  Well, now that look of bewilderment is still from wondering what we are going to do.  Now our Sweet Baby Girl, whose unknown beauty and joy,  caused us anxiety and fear is gone and in the truest sense of the words,  we wonder, what are we going to do?

Instead of the puffiness of sleep deprivation from ten years ago,  the softness is gone.  Where I once was round and puffy and naive to death, loss and grief, I now have lines and the sharper features that come with the loss of such innocence.  Such grief leaves your whole being in a proverbial Deer in the Headlight state as you wonder what became of  your softness, hope and innocence…………….once upon a time.

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Hope Lost

I hope so!  A common response, right?  Often, when posed with questions about our future, without hesitation, we respond, “well, I hope so.”  One asked of our military family, “do you think you will get to stay in the area?”  “I hope so,” is my common response.  If only, to me,  hope were still so cut and dry.

Today my friend, Kathy Benson,  at Bereaved and Blessed is hosting Time Warp Tuesday in which we reflect on a previous blog post.  The theme this month is Hope.

July 4, 2009, I was full of hope.  Our Sweet Baby Girl, born with Down Syndrome and a heart defect, did not even spend a minute in the NICU.  Over the next year and a half she more than made up for the respite with six major surgeries in as much time.  With each procedure I hoped it was the last.  I clung to this hope until one November morning when all hope was lost and our Sweet Madeline was called home.

In September of 2011, ten months after Madeline’s death, I wrote about my hope and loss thereof when my prayers were not answered my way and I was numb and hopeless in Not There Yet.

Almost a year later and I can say I am still not there.  I have yet to read a book on Heaven and have many a struggle with what happened that November morning.  When people say, “Just pray” or  “Our Prayers were answered” I still want to throw something.  Because I wish this pain on them…………ABSOLUTLEY NOT!!!  Not on ANYONE.  But because deep inside I still want to know why?  Why were our hopes lost? Why are we now left clinging to faith?

I find myself clinging to my faith…………and still, some hope.  At least I am not without all hope.  It is just a new hope.  One that I will not realize in this lifetime.

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Butterfly Kisses

Sweet Baby Girl Butterfly!

I am writing for an event hosted by Lori at Write Mind, Open Heart called Perfect Moment Monday.   When grief tends to be your constant companion this can be difficult.  However, I found it has given me pause to take in more of my life and shake off a bit of the numbness.  For this, I am grateful.

My perfect moment almost didn’t happen.  You see, what turned into a perfect moment was one I had at first thought of as horribly painful.  It involved my Sweet Baby Girl, Madeline, and butterflies.

For a second year in a row we received an invitation for a Butterfly Memorial, hosted by the Pediatric Rehab Hospital, where Madeline had spent a month as an inpatient and several months, several days a week for outpatient therapy.

I have a love/hate relationship with this place.  The fact that it is there and the work they do I LOVE, the fact that My Baby Girl had to be there, I hate……………..trumped only by the Raw Pain that we are now on a list to attend a ceremony to honor the life of Madeline and the other Precious Souls who are no longer with us.

This is what I think of your stinking therapy!

Madeline at one of her many afternoons at HSC.

We attended last year, as a family, and it was very difficult.  I had not darkened the doorstep of this place since Madeline’s last therapy visit the previous year. Walking through those doors a year ago almost brought me to my knees.  I sobbed uncontrollably when my senses were overloaded with the smell, sound, faces and numerous memories and emotions that rushed over me of our time there.  However, to hear Madeline’s name and be referred to as “Madeline’s Mom was music to my ears.

Fast forward………….We received the invitation again this year.  The week leading up to the event was difficult.   As it so happens, other committments were keeping the rest of my family from being able to attend.  My memories of the previous year started to creep in and fill me with dread.  Did I want to experience those emotions again?  Did I want to do that ever distinctive drive into D.C. and take that particular trip down memory lane, where the snapshots that fill the road rip open all of the wounds.  Renew the questions, why her, God?  Why did you need her?  If only given the chance God, I would have done this drive forever, just to have that Sweet Baby Girl with us and delight in her grace.

In the end, I knew I must go.  The fear of a missed opportunity had a stronger hold on me than  fearing  more pain and renewed, raw grief.  I also knew I would have to go without my family.  Our boys’ grief journey has been so very fragile that I could not expect them to go and experience new pain.  But I wondered if I could do it alone?  My body (and maybe God) were telling me, “NO”, THAT would be too much, in your weakness you must find the strength to reach out.”

So, I did.  Sunday morning I contacted my dear friend and asked if she could/would attend this ceremony with me.  And she did, along with her 10 year old daughter.  Although the drive did put me on edge, I shared a couple of memories of all of my trips to appointments.  When we entered the doors, this time, instead of being brought to my knees, I felt warmth and gratitude.  Grateful that this place existed and for the care and love they gave Our Madeline.  I remembered the laughs, yes, I said laughs, we would have during therapy watching Madelines expressions and her tough and fiesty spirit, always reminding us who was really in control.

It was a beautiful crisp day when we all gathered in the butterfly garden for the memorial.  They gave us all the opportunity to share about our babies.  This time through a shaky voice, I was able to talk about Our Madeline and how she is loved, adored and missed everyday.  I brought her picture which I mandated be admired.  Not hard to do.  This time the raw pain received a soothing balm when I got to speak her name, share her photo.  We each received a butterfly.  Madeline’s name was called and the three of us released our Madeline Butterflies to fly free.  I was so touched to have these dear friends experience this with me.  What a sight to behold.    This time as the Butterflies flew, I saw their beauty………….I saw my Madeline.   I saw her free from her earthly limitations and with the wings of an Angel.

In one perfect moment, I think I even felt a warm  hug …………………..and Butterfly Kisses.

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