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.

If Only

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A year of milestones.  Some bittersweet and exciting to witness.  Others, heartbreaking and overwhelming.  The realization that the baby girl I grieve for would now be a little girl, ready for Kindergarten. I long for what might have been.  The first day picture that will never be.  While I grieve her absence I attempt to hold on with all of my might so as not to miss a minute of the boys who bless my life.  High school, middle school and kindergarten.  What a year it would have been, if only.

That Word

Today, March 5, 2014, is the day to Spread the Word to End the Word.  Below is a post I wrote last May after a painful experience right here in my local, “educated” community.  Before you speak Think, Is it kind, is it true, is it necessary.  What one may think is a casual, harmless comment may make one who longs for the presence of their Baby Girl feel a moment of gratitude that she never has to experience such hatred, ignorance and ugliness.  Spread the Word!

 

There are many a day that I think I, perhaps, am no longer fit to mill about with the general population on a day-to-day basis.  A certain tolerance seems to be required that I am pretty sure, I no longer possess.

I try hard to remember that I have endured life events that may make me extremely sensitive to day to day happenings and random interactions with friends and strangers.  I also know that as sensitive as I might be,  is as insensitive and callous as others behave.

To add to my dumbfounded state, is that we live in a society that is all about being “PC.”  We all know that many derogatory names, sadly, can be used to describe various groups of people.  And I would like to assume that none of these names are used in this day and age… but that would be both foolish and ignorant.  However, you generally don’t hear these words bellowed at random places where families gather.

But there is a population that does not seem to always be worthy of such sensitive and “PC” protection and it both breaks my heart and makes me physically ill.  In this day and age, why?  I ask you, WHY? does it seem to be perfectly acceptable for a grown woman to bellow, “I can’t believe my check is the wrong amount, I’M SOOO RETARDED!”

I felt my blood go cold and my stomach flip.  This was my pool.  This was a lady I would  possibly be seeing on a daily basis.  I wanted to scream, I wanted to cry, I wanted to PUNCH HER IN THE FACE.  But I didn’t…and I don’t know why.

So I plead you, Dear Reader, to explain to me, why?  WHY?  I am the one that gets the stare down when I composed myself and responded, “Don’t use THAT word, it is really very offensive.”  Que long uncomfortable stares.  Luckily, thanks to my circus act, I am used to being stared at.  Cause that’s RIGHT…I AM the one they stared at.

I even looked the “word” up in the dictionary.  I had to read through two entries that stated, “retarded child.”  One that is “retarded.”

The third entry down I found this definition for “retarded”:   to make slow; delay the development or progress of (an action,process, etc.); hinder or impede.  

Never a mention of not having the ability, just that it might be delayed.  And guess what…IT MIGHT NOT!  Children with “developmental or cognitive delays” are extremely capable.  Capable of overcoming what others might see as limitations.  My experience is limited to Down Syndrome and Autism.  Both Madeline and Johnny amaze me with what they were able to overcome and what Johnny continues to achieve on a daily basis.  While delayed in some areas, Johnny’s first pre-school teacher said it best…”no one ever said Johnny is NOT SMART.”  And they never said it about Madeline either.

Shaking off that interaction has sucked my energy and sent my spirit plummeting.  For my Sweet Madeline, whom I ache for every day, I had a moment where I actually thought, “Thank God, she will never experience such ugliness and ignorance.”  And then I cried.  Because I would give anything to have Madeline here and be able to continue to experience all the ways she would charm and delight us.  

I am just so sad to know that in others eyes her life might have been viewed as less valued and unworthy.  And now she is forever protected from such hate in her heavenly home where I am sure she is delighting all that gaze upon her.  But that she had to leave us to escape such ugliness has sent me in a tailspin and I can’t seem to find my way out.

And now I feel sad for “that lady.”  (And I don’t want to.)  Because perhaps she will never know the value of every life.  She might not have a Madeline or a Johnny to bring joy to her heart and a smile to her face.  Does that make her “delayed?…I don’t know…but IGNORANT…yep, I think that’s THE WORD.

 

 

 

 

 

 

 

Golden Girl

Fall is proving to be a difficult time of year.  I love the gilded sky and the crisp air.  The leaves crunching under my feet as I continue to run to staff off so many mixed emotions.

The calendar ticks off yet another year.  Another year without our Sweet Baby Girl.  November 2.  That date screams at me from the calendar.  It has been 3 years now.  Madeline has been gone from this life twice as long as she graced our presence.  Sixteen months that completely altered my 47 years and forever changed my mind and heart.  The time that is supposed to “heal all wounds” does not exist.  That time simply passes as I continue to search for comfort while forging a new path.

Madeline would be 4 years old now.  As the holidays approach it is painful to watch all that I perceive I am missing, as well as my family.  I watch the Big Brother play with the neighbor kids who are that age.  He is a gentle giant and I ache for all that he could have had with his baby sister whom he adored.  It touches my heart to see that in all of his adolescent craziness his screen saver, on the electronics I despise, is a photo of his sister.  He wants to go to a high school that is an inconvenient drive.  One reason, “Mom, they have kids there that have Down Syndrome, and they are really cool.”  So, you have probably already guessed who is going to be driving a lot.

The Little Brother struggles with all of these emotions that he can’t understand or control.  We have been told he is, “academically gifted”.  I just want him to get through a day at school without melting down.

Johnny is a classic case of still waters running deep.  He is acutely aware of his own sadness.  There was a memorial service at church for all those in our parish on “All Souls Day.”  He didn’t want to go.  I said, “it will be a nice time to remember Madeline.” He said, “I remember her all the time.  It makes me too sad.”  Me to, Johnny, me to.

Life continues, despite such loss, that is the cruel irony.  I have a job that I never thought I would have.  I teach middle school reading.  180 new children who have endeared themselves to me.  Without Madeline’s lessons I would probably not have the patience for this.  The irony, if she was here, I would not being doing this.

As I look at the remaining leaves on a wet fall morning, I have bittersweet memories of a similar view from a hospital window.  A hospital I couldn’t wait to leave but long for the time that room was filled with a Sweet Baby Girl.

Exactly a year ago I wrote Gilded Tears.  I still pray for a  crisp fall morning in a gilded sky with my Sweet Baby Girl.

 

Blessed are the Meek: 3:21

I originally wrote this post in 2013.  It all still applies.  Except now it has been over 5 years since our Madeline was called home.  I still ask why?  I still wonder, what if, what if?  The hardest question to answer is still, “How many children do you have?”  or “So, you have all boys?”  They are everyday questions that cause my heart to plummet.  Our family continues to struggle with grief.  I go on, sometimes with lead boots, but go I do.   Her presence is still missed and longed for.  She never weighed more than 16 pounds but had a huge personality and a smile that melted every heart.

It is World Down Syndrome Day, March 21, 2016.  Funny, when I first learned my baby would have Down Syndrome I was scared and devastated.  Social workers came in at her birth to see how I was coping.  Now she is gone, and no Social Worker was/or has  ever called.    There is no preparing for life without your child.  On this day I remember that our Precious Baby Girl was more than Down Syndrome.  She was a daughter, beloved sister, granddaughter, niece, and cousin.  Like all children with Down Syndrome, it did not define her.  It was part of her.  Down Syndrome added to our life, it did not take away.  Please remember this Dear Reader, any child is not defined by their label but by the love they bring and the lessons they teach.  If you are lucky to receive such lessons, consider yourself Blessed.  “Blessed are the meek, for they shall inherit the earth.”

 

 

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Madeline – Rockin that Extra Chromosome!

(It is October, Down Syndrome Awareness month. In case you are wondering, blue and gold is the color of the ribbon to be aware. I don’t need a ribbon to be aware. The heaviness in my heart and footsteps is a constant reminder. A reminder that even after almost three years, Madeline’s presence continues to leave a void in my life, and the life of my family. I started a new full-time teaching job, it does not dim her memory or ease my heart. I don’t know why, but although I really do like my job, more often than not I think, “I’m only at this job, because Madeline is gone.” Her photo is on my desk and her smile keeps me going throughout the day. So, I am aware, aware of Down Syndrome, aware of the joy it brought into my life and the lessons never to be forgotten.

Below is a post I wrote almost a year ago for “Down Syndrome Day.” I just wanted to share. I want you, Dear Reader, to read and know the value of all life and the next time a child or anyone with Down Syndrome causes you to turn your head, I hope it is with awe and wonder of the joy and love that person has brought into the world.)

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?

What goes around

I went to a Memorial Service last night.  My dear friend, “Em”,  lost her cheer coach,as the result of a tragic accident.   He was smack-dab in the midst of embracing  life, his time, his talents, his gifts and  sharing them selflessly with all who knew him and even those that did not.  I went to the service to support my friend.  I had met this man once.  I think I cried harder than anyone there.

As we were walking into the church for the service it dawned on me that this would be the first memorial or funeral I had been to since Madeline’s.  The circumstance and my purpose for being there seemed different enough so while at first choked up  I was not worried about pulling myself together.

But then a switch flipped inside my head and a slide show started to play.  You know, like a power point presentation where the slides flip and flash at you.  Like that.

The first slide was of Madeline’s funeral and being hugged by another Mother who had buried her child.  I remember thinking “Wow she never met Madeline, she is really upset.”  Now I know, she wasn’t as much crying for Madeline as she was for my loss, for my pain, and for my future.  My future without my Baby Girl.

The second slide was at home, in my room, a week or so after Madeline’s funeral,  talking to a woman on the phone.  The nursing company who cared for Madeline had connected me with this woman in hopes that it would be of some comfort.  Funny, I cannot recall the woman’s name, as many events from the initial months without Madeline are a blur.  But her words, those I remember, those I will never forget, those words and her voice played as in Dolby sound.   She said in a broken voice, “I want you to know that although I never met your beautiful daughter, I have already cried for her, and for you, and I am so sorry.  I am just so sad for you and I wanted you to know that first thing.”  I said, “thank you.”  I didn’t get it, really.  But now, now I get it.  And the floodgates opened.

Slideshows played of this amazing man showing a face that radiated joy and a spirit and dedication that drew others to him.  It was a life cut too short.  The minister put it in more literal terms.  The Lord had given him just over 10,000 days and he had lived each one “full out.”  He was an amazing coach and mentor to my friend and all those on his teams and I am so sad for those girls.

But he was also someone much more important than a coach.  He was a son.  At 27 he was someone’s baby.  And for this I cried…a lot.  For a mother who buried her child.

His mother got up and spoke.  She was amazingly strong.  This made me cry harder.  She told us he was her “only child and her whole world.”  And he was taken from her in the blink of an eye.

The man with him at the time of his death came up and hugged the Mother.  A slide flashed in my head of “Our Hannah” who shared Madeline’s last minutes.  And I cried some more.  For life and how it can take a cruel turn and someone becomes a new central figure in your life because they were blessed with the last minutes of your child’s life.  And for his Mom,  who now has this bond, I cried some more.

Seeing her incredible strength I thought of the blur she must be in and the raw, numb feeling I remembered.  And I prayed for her.  I pray for her days and years to come and though a woman of strong faith, there will be days when that will not soothe the constant ache in her heart.  I thought of the people in my life, the bond we never wanted to share and the tears they have cried for me and I for them.  And the day will come when this Mother will do the same… cry tears for another Mom… another Mom who will bury her child, because that’s how a Mother’s love goes around.

 

 

 

Not My Brand

It’s that time…time to Warp… Time Warp that is.  My friend, Kathy Benson of Bereaved and Blessed, invites us to visit old posts and reflect on our life when we wrote them and what has happened in our life and journey since.  This months topic is advice.  Getting it, giving it, what do you think of advice and what is your favorite brand.

Advice, unsolicited, is all around.  The one thing in these tough economic times that is free, yet, even with that low, low, low price, it is over valued.  Unsolicited advice, in my humble opinion, is pretty much someone’s opinion being thrown your way, and you know what they say about opinions…well, let’s just leave it at that.

This brand of advice,  you might say I am a snob but this brand, the one labeled unsolicited, well, I don’t like it…at all.  In fact I won’t even buy it with a coupon.  My brand is what I would call, sought after, yes, that’s my brand.  What I prefer about my brand is that you go to a source you know and trust.  It is usually advice of good quality, which is the result of more experience in an area, similar experiences, values, and usually a certain amount of mutual respect.  The other brand I have found is somewhat watered down and seems to leave a bad taste in my mouth and a significant cramp in my stomach.

My brand can be difficult to find, but the other brand, well, that is everywhere.  I know, Dear Readers, this is not so unique.  I just think that I have enough circumstances in my life that make me a target consumer for the unsolicited brand.  I seem to be top of the market for “guidance” in parenting, autism, and grief.  Any advice that starts out, “what you need to do is” or “don’t you think it would be better if”, “I know they say he is autistic but”, or generally any statement about Johnny or Madeline that begins “you need…”  The exception is if I say, “What do you think I need to do”, in which case I reverse my previous statement.

Autism and grief, on their own, carry a huge weight and require a strong back bone.  Put them together and I pray I can  somehow manage to stand upright.  An incompatible pair, autism requires Mom to be on her toes, and never let her guard down; whereas, grief, causes me to have trouble staying on my toes and operating with a certain amount of distracted thoughts for my Baby Girl.

It is rough to stay on my toes with these heavy boots.  I re-visit a post I wrote where I discuss advice about moving on a year after Madeline’s death.  It is in its unedited raw state as I originally wrote this piece, Progress?”.

A year and a half has now passed, and yes, I do still get that “other brand” of advice at times but I try harder to consider the source and their intention. It doesn’t make it easier but I know some well-meaning people just want to make things better, that simply cannot be repaired.  Like I said in my piece “unless you’ve walked in my boots” but be “careful they are pretty heavy.”  Now that, Dear Reader, is some of the best, trusted advice I have received from a very reliable source.

My boots are still heavy, but the weight shifts and some days they are a bit lighter to walk in.  The body begins to adjust to this ever present weight.  The path is still rough terrain but sadly, familiar.

I leave you with this, please remember,  unless you have stood in someone’s boots and are sure you know their weight, think carefully and twice, that’s my advice…for what it’s worth.

 

You’ve Got a Friend

What are the odds?  When we first learned that Madeline would have Down Syndrome, I remember thinking that we would be all alone, the only ones.  Why?  I guess from all the stats I heard about pregnancies being terminated after a diagnosis of Down Syndrome.

I have said many a time that the day I learned Madeline would have Down Syndrome I broke down in a puddle of tears and a heap of fear.  “I swore I saw the sky turn a different color of blue that day.”  Perhaps this moment was the foreshadowing of things to come.  The new sky a vibrant blue for the joy we would  know.

When Madeline was six weeks old in September of 2009, her and I boarded a plane to Virginia to settle into our new life and learn our lessons about joy.  We spent much of this time in somewhat of an isolated state due to multiple surgeries and hospital stays.  Aside from Doctors and Nurses, I was not exactly making new friends.  And with all that we had going on with surgeries, cross-country move, new job, new schools and a side of Autism, you could say it wasn’t my focus.

Finally, in the Spring of  2010, we were able to get out a bit more and I began to take Madeline up to The Brother’s school for different occasions and I began to meet other families.  It was there that I learned that not only was I not alone in my new world but I indeed had someone who lived under the same vibrant blue sky of joy.  Her name was Linda and her joy came in a little package of sass named Olivia.

Ms. Olivia and Ms. Madeline were born just months apart and both had the same golden hair and heart melting smiles.  My conversations with Linda became more frequent as we discussed everything from Down Syndrome, navigating the military Exceptional Family Member program, Navy life and a common interest in running.

Our goal was to get Ms. O and Ms. M together for a little battle of the sass but crazy schedules and Madeline’s fragile health didn’t seem to leave time.  And then, like that, it was too late and we were out of time.  God called Madeline home one November morning in 2010 and my sky went from vibrant blue to a haze void of color.

In my raw pain and grief I recall saying, “I can never see Linda and Olivia again, it is too much, I can’t take it.”  “I won’t be able to take it.”

Word must have gotten to Linda and I’m not sure but I think she said, “it is too much, and I won’t let you live under a new sky void of color, you must visit often under this vibrant blue sky because once you know this joy it must be shared.”

Why do I think this?  Because the morning after Madeline’s death, my doorbell rang at 7:30 a.m. on a stormy November morning and there was Linda to wrap me in a hug, let me know I would not be alone and with her quiet strength has remained by my side.

Don’t get me wrong, she’s not all warm fuzzies, who do you think is part responsible for my Cafeteria Lady Gig.  She was also the one to ask me if I ever would be interested in running a half-marathon.  I said, “maybe,” and the next day she handed me my training schedule and we were off and running, literally.  Four half-marathons later and we never learned our lesson.  Except the lesson on friendship.  That lesson I think we’ve got.

Linda and Ms. O

Linda and Ms. O

She has shared her bundle of Sass with me over the last 2 years and let Ms. O become a special part of my life.  That little piece of vibrant blue joy in my world.  Ms. O isn’t a push over either, and I love to  hear her little voice yell, “NO, ABY, NO!” When I come towards her with a hug.  And at times, I think she just knows I am too sad and comes at me with a hug that causes whiplash.  I crave her fiestiness and sass.  Her presence can always make me smile.  They have brought me much healing and love as I navigate this new chapter of my life without Madeline.  And now yet a new chapter must begin.

As is the downside of Navy life, the time has come that I have been dreading.  Their time in the Navy is done and they will begin a new chapter of their life in Michigan.  I will miss them all terribly and this good-bye is so hard we have avoided it…but soon we cannot.  We must give that final hug but I think I will refuse to say good-bye.  Maybe see you around.  Even though my sense of direction stinks I can get myself to Michigan and I will be pounding on her door to get a much need hug.

Someone recently told me, “you know you’ve got a real friend in Linda.”  I simply said, “I know.”

Thank you, Linda!  Thank you for sharing your love, your joy and your vibrant blue sky.

 

 

 

 

 

 

It’s Complicated – A Little Boy’s Heart

Life is messy, we would all probably agree.  Add children and it is a bit messier.  Most messes can be cleaned up, even rather quickly.  Maybe an apology, a hug, a kiss and assurance that all will be right.  Other life messes, however, are much like trying to re-finish an old bookcase that has been layered with paint.  Each time you scrap away a layer, you get a whole new mess staring right back at you.

That is how I feel about loss and grief.  As I have said before, my misery I can handle, not that it is easy, but I have no choice but to get out of bed in the morning.  Even with the constant dull ache that makes me swear there is something heavy standing on my chest, onward I go.  In the two years since Madeline’s death, I have developed a few coping skills to get through these days.  I can recognize a day that requires a good long run and those even harder days that require a good cry and nothing more strenuous then folding laundry.

My children’s grief.  A different story.  That is where the real mess is.  It is the bookcase with many layers of paint that need to be tenderly scraped away to return to a fresh surface.  Except in this case, there is quite possibly no fresh surface underneath.  Because the surface has been forever marred with the pain of a Little Boy that lost his baby sister.  A Little Boy who was called from his classroom one November morning when he was in first grade to go with his teacher to the Principal’s office.  There his Daddy was waiting to tell him that his beautiful baby sister died suddenly that morning.  I believe at that moment he lost his freshness, his innocence.

His innocence was now replaced with the pain of loss, an adult, grown up size pain, smack in the middle of a Little Boy heart.  What is a Little Boy to do?  He doesn’t know, so he hides, he runs, he cries, he crumples papers, and he smacks his head and calls himself “stupid.”  And what do us big grown ups do to help?  Tell him he is 10, he can’t do this anymore, that he is a smart Little Boy (an understatement) Why?  Because we don’t know what to do.  Because this layered mess is just that…A MESS.

We talk about his lack of maturity.  Funny that we say this when, in fact, he is dealing with all this grown up mess.  Perhaps he is acting out what all of us grown-ups stuff deep inside.  I am right there with him.  Since Madeline’s death I to want to run, cry, and throw things but I’m supposed to be more mature than that, so I suck it all in while I tell my Little Boy to let it out and tell us what is bothering him so we can help him.  But how can you help what cannot be fixed.

The Little Brother told me last week, “Mommy, sometimes I think what life would be like if Madeline hadn’t died.”  I said, “do you like to think about her?”  “Yes,” he said.  “Me to”, I said.

No one likes to see the messiest part of themselves in someone else.  I think that is what I see in this Little Boy.  Trying to keep all this pain stuffed down until the frustration becomes so great you run and cry….or write.

The teacher sent me a message one day to look in Little Brother’s folder.  That he had written something she thought I would really like.  And he did.

Listening intently to her brother.

Listening intently to her brother.

He was to write about “If you could spend the afternoon with any member of your extended family, who would it be?”  His Little Boy heart chose Madeline.

“I would spend it with Madeline because I really miss her.  We would play games like peek a boo and enjoy being with each other again.  We would hug each other for the whole time and probably relax.  It would be the best day of my life.”

Happy Together!

Happy Together!

 

Me to, Little Brother, me to.  My hearts greatest desire, just one more day with our sweet, precious Madeline.  Perhaps, Little Boy, we are more alike than not and just maybe maturity is over-rated and wisdom is less messy.

The Club vs. The Bully

For My Angel

For My Angel

Grief is oppressive, conniving, manipulative and sneaky.  She is the playground bully.  She plays by her own set of rules with absolutely no sense of fairness.    And like any good “bully” she is a master at her craft.  She likes to change these rules without warning, leaving you in a near constant state of dread for what may be lurking around the corner.  Her greatest joy seems to be in snatching yours.

She begins with taking days once associated with celebration and then “bullies” you until you begin to relinquish your joy to her omnipotent power and presence.  And just like on the “playground” those of us who grieve band together because anyone who has suffered a “bully” knows there is not only safety in numbers but comfort.

Tomorrow is Mother’s Day and the “bully” is out in full force.  She has spent the last few days taunting us with how special this day is going to be, knowing good and well when the day approaches she will blind side you with a punch to your gut that tells you another day is coming that you must endure.  And this time it is blatant in your face kind of taunting to remind you that you will be missing someone on Mother’s Day and  will receive one less piece of gluey art work than is rightfully yours.  You will not receive a card that says, “from all of us” and you have zero desire to be taken to brunch to try to “make it up” because although you don’t wish your pain on anyone, it is sometimes just too much to witness others who are blessed with all of their rightful artwork and cards signed, “from all of us.”

Dealing with the “bully” called “grief” is an ugly business and I have gradually accepted that I need others in my corner to “deal” with her because like most “bullies” she is somewhat relentless.  Facing her alone is unbearable.  As Mother”s Day is upon us I remember the members of “The Club” facing this day without their “babies”  and I pray for their pain and I pray they find a member to lean on as they struggle with all of their might to endure.

Below is my story of life in  “The Club” that I shared in Listen to Your Mother as part of the DC cast.  Without members of “The Club” I wouldn’t have had the strength…thank you!

 

THE CLUB – Listen to Your Mother – April 28, 2013

I belong to a club.  One that I did not, nor would ever, ask to join.   In fact, none of the members want to belong.  

It’s an odd club.  Members come from all walks of life and are thrown together.  We DO NOT want to belong and by all means:  we DO NOT want new members.  ”Misery loves company” does not apply.   The dues are unforgiving.    The price:  your Child’s Life.

New members joined us on Friday, December 14, 2012, in Newtown, CT.  Like all members, they did not apply and we did not recruit them.

Each member has a unique story and has experienced their own personal hell.  Though many of us can relate to each other and share a similar kind of hell.   For some, the only commonality we share is that we have buried our babies.   Whether our babies died in the womb, never drew their first breath, spent only a finite amount of time on this earth, fought a horrible disease, battled drugs or took their own lives.  No matter the details of our story, burying your child is Hell.  

I have been a member of this club for two years.    With each story I hear, I think, I can feel their pain, it is truly a living hell.  A bereaved parent’s pain is unimaginable to those not in the club.

Our precious daughter, Madeline was 16 months old.   Although considered medically fragile, she died suddenly, within minutes, before our eyes.  The trauma of Madeline’s sudden death and surrounding circumstances haunts me, but if there is any comfort, I know she was in loving, caring hands.

There is no comfort that can come from your child’s life being taken by an unspeakable act of violence and terror.

The parents and families of those precious children who lost their lives at Sandy Hook are in a hell that, only some club members sadly can fathom.  It is a living hell that exists for those whose children had their lives taken at the unforgiving, brutal hands of another.  It is heart wrenching to know that their children experienced unspeakable terror, fear and pain in their last moments and there was nothing they could do to protect them.
The horror of those children’s last moments and wondering how their families will ever learn to live without their child…those images have played on a loop in my head since that December day.

I heard on the news about a few more “kids” being laid to rest in Newtown, CT.  My initial thought, those “kids” are someone’s babies.  Don’t they deserve more than that?    To remember their names.  To honor their lives.

I can tell you as a club member, that we must remember.  Their names.  Their sweet faces.  Each child is someone’s precious girl or little guy.  When I hear the debates surrounding gun control and mental health, I cannot engage.  My heart and mind keep going to those families who have buried their babies.  Who are beyond suffering.

I think of the rawness and complete state of numbness that our minds and bodies shift into with the death of our babies.  The feeling that we simply cannot lift one foot – as the weight of our grief is unbearable.  This raw, life altering, grief defies explanation.

The constant replays of our last hug, our last kiss, our last moments together, whatever they may have been.  The unimaginable “what-if” and “if-only” that play on a continual reel to reel in our heads.  Trying to endure a new minute, a new hour, a new day, knowing we will never… in this life…hear our child’s voices, see their sweet faces or snuggle our babies again.  The panic I know these new members will feel.  That feeling of I must see my baby…I cannot bear another moment without my child.  Yet, we must, we have to, we do.

I wish I had no idea what it is like to bury my child.  But I do.  So I am scared.  Scared for the parents and families left behind.  Scared for their grief and pain.   Their sleepless nights.  Scared for their unstoppable, body wrenching tears that will flow.  The nightmares that will inevitably haunt them.  Scared for the strength they don’t know they have, or if they have, just to get out of bed.

Although we do not want to be joined together by these experiences…we do not want to belong…we do.  So, we try to make the best of it.  To lean on each other when the weight of our own grief will not let us stand upright.  To find another member that says, “I understand”, “I know just how you feel.”  Having each other is not what we want, we want our babies back…but we hold ourselves up with one hand while leaning on the shoulders of fellow members with the other.  This is the ultimate in strength, as we struggle to find our balance.

We look at each other with knowing eyes and embrace each other in a way that says you are not alone, we are with you.

Grief is a marathon, a perpetual marathon.  Not a sprint.  There are too many hurdles to clear.  It is a test of endurance that no one wants to try to pass.  Many of us gather strength from each other in our club. Many of us just simply…endure.  I pray that these families find comfort in the days to come and are  able to simply…endure.

 

Perfect Moment – Together Again

I’m back!!!  There has been so much happening, so much to ruminate and blog about, so, why the absence…it’s a little thing I call ANAYLYSIS PARAYLYSIS…self diagnosed, of course.  Risk factors include  buying a house (the one house we looked at), trying to pack to prepare for said move,  interviewing for a job, preparing Johnny for his First Holy Communion, attempting to train for a half-marathon, all while preparing to bare my soul on stage in front of friends and strangers.

Let me stop, right here, Dear Reader, and confess, I did not run the half-marathon.  Yes, my Dad is rolling over in his grave.  I am officially a QUITTER!

In my defense, it was the same morning as Listen to Your Mother, and I was advised by Dear Friends that I had perhaps lost my mind and in fact, it was a “terrible” idea and to really put the fear of God in me, I would go on stage and “look like crap, cause who looks good after running 13.1 miles??!!”  I know, harsh but true words.  Well, in all fairness, there are those who do look great after 13.1 miles, I…am not one of those people.

So, I did it, I quit.  And with that off my plate I spent the next 2 days in a complete state of self-induced crazed chaos preparing myself for my big stage debut.

Now it is Monday, the morning after, and I find myself in a daze, trying to remember if it all really happened.  Thinking myself too busy, I planned to write about this sometime after I had the chance to process the experience.  Thanks to Lori at LavenderLuz and Perfect Moment Monday, that sometime is now.

Back in February, with much trepidation, I took myself to a random hotel in Northern Virginia to audition for the DC cast of Listen to Your Mother.  In Perfect Moment – No Whiners or Quitters  I wrote about this amazing experience and actually being cast in the show.  I thought that was the hard part.  Turns out auditioning was nothing compared to the feelings that threatened to stop me in my tracks and render me unable to head to the stage.  Because what I discovered was that telling people I was going to read “my story” on stage was, in reality,  much less intimidating than realizing…WHAT THE HELL HAVE I DONE?…I’M GOING TO READ MY STORY…LIVE..IN FRONT OF LIVE, REAL PEOPLE…ON A STAGE!

As I processed this fear, as irrational as it was, I chose to deal with it on a superficial level and channel all of that off the chart Anxiety into the major life decision known as, “WHAT SHOULD I WEAR?”  Taking my gift for indecision to a whole new level.  It was a personal best.  In my quest for just the right look I purchased two dress and SIX, yes SIX pairs of shoes.  I had to make a decision before I melted my credit card and/or The Captain figured out what I was up to.

The result was a game time decision in which I walked backstage with one of each shoe until I couldn’t even stand myself and knew it was time to hide my crazy.

Never mind the shoes,  I was about to go out and BARE  the contents of the deep recesses of my heart and soul to an audience.  Standing backstage I could feel my heart racing as I contemplated the floorplan and just how possible it would be to exit stage left.  Then I thought how can I be afraid?  Haven’t I already been called to do the impossible, the unthinkable…I have buried my Precious Baby Girl.  Everything else, in comparison, is a walk in the park.  And so, I kept walking… right across the stage and into my seat… donning my red, white and blue dress, in honor of  our Madeline, our 4th of July Baby Girl.

Then it was time…Our Time…time to “read” our story.  The story of the unexplainable grief and pain when you become one of “The Club” and you are called to bury your child.

Despite feeling naked and exposed I began.  Once concerned about my pacing and tone, after a brief moment the voice I heard didn’t even seem like mine.  My heart and mind got lost in my love and longing for Madeline that I almost forgot there was an audience.  Finally, I had the stage, the platform to tell all present…my Madeline is gone, she was loved and adored beyond measure, my heart is broken beyond repair and I will never be the same.  But I have people, club members and dear friends who serve as a soft place to land and a shoulder to lean on when the days are unbearable.

After the show, to my hearts delight, I had a few people come up and thank me for sharing my story and  Madeline.  Some asked her name again and wanted to know a little more about her.  Of course, I was delighted to share.  Words can’t convey the emotion when some of the hugs were not accompanied by any words… just a big squeeze, a knowing look, and  tears.  Then it hit me…I really did tell this story for others, for others who cannot.  That’s what us club members do.

The absolute, hands down best was that I SWEAR I felt Madeline with me.  A  surreal feeling that I could, perhaps, just reach out and kiss her sweet face, just once, but to make any move would destroy that magic place and she would go away.  I felt her presence and told our story and I am so glad that I did for that one… perfect moment… when Baby Girl and I were together again.