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.

Perfect Moment Memory

Perfect moments are those both big and small occasions when all of your Angels agree in song, your stars align and the God’s are smiling and for that one moment in time all is perfect and right in your corner of the world.  Lori at LavenderLuz.com challenges us to be mindful of such moments in our daily lives.  Turns out, she is right and the more you notice your stars aligning, the more your Angels tend to sing.  Trust me at times you must dig deep and look far and wide to find your stars.  Not always easy but always worth it.

As I reflect over this past month my mind has gone back to such a moment, on a day in May, ten years ago that I feared would never come.

Before The Captain was “The Captain” he was the “OIC” (Officer in Charge) of a Helicopter Detachment in the Fall of 2002.  There was much turmoil on the other side of the world and he was scheduled to deploy on a ship headed to the party.  Times were a changing and he was deploying with a detachment of 4 women and 1 man.  Constantly asked how I felt about this, I would respond, “I just hope they don’t throw him overboard, my resume is grossly outdated.”

Who cared about women?  Not me!  I had bigger fish to fry.  Three weeks before his scheduled departure we discovered we were to be blessed with baby #3!  Never a good planner I tried to take it in stride but I am sure if I divulged names you would get another story:)

My initial game plan of lots of coffee in the morning and a glass of wine at night was now tossed aside and I was left with two choices: 1.  Suck it up; and 2.  Suck it up!  Tough decision but I went with number 2!  I would like to paint you a picture of a dutiful Navy wife sending letters to my husband in between getting my pearls strung, making care packages and entertaining my children so that there young minds were constantly stimulated.  But that would be, you guessed it, a big fat lie!

In fact it all started a little like this…The Big Brother, Johnny and I standing on a pier waving to Daddy as he slowly faded into a dot on the ocean, while I bit my lip in half trying not to cry as to not scare my babies.  We then went home where I tried to establish a new routine which consisted of yelling at a plumber that there was S**t floating down my hallway because Johnny flushed my mascara down the toilet.  Things were starting off a little rocky.

As the months progressed the excitement continued.  The Big Brother was a crazy three-year old and Johnny was 17 months old, not walking or talking and I was beginning to be concerned that all was not “normal.”  But I tried to push this into the back of my mind as I was preoccupied with watching a constant stream of CNN and FOX News as it became more and more apparent that things were heating up and there was no homecoming date in sight.  Then one night in March I felt my world crashing down as I watched in horror the missiles being shot from the ship The Captain was aboard and not knowing when and if he was coming home.  While the boys watched an endless stream of “Blues Clues” in the living room, I bit on a towel and sobbed in the kitchen.

Despair and fear began to set in as I became overwhelmed with delivering this baby on my own.  Military families do this every day.  And though I knew this, it didn’t make it any easier.  But I was grateful for my Dear Friends who assured me I would NOT be alone and continued to carry, push, pull and whatever else it would take to get me through.  As I had developed some strange reverse morning sickness toward the end of my pregnancy, I needed all the pushing and pulling I could get.

About 7 months into my pregnancy this “reverse morning sickness” caused me to spend my days retching in the bathroom and sipping purple Gatorade.  The boys’ diets were just a step above with an alternating menu of grilled cheese and chicken nuggets.  It was survival of the fittest and I was determined…or just downright insane.

Month 9 and at my wits end on an early Saturday morning, already perched in front of the news, I received what must’ve been a message from God above.  It was the banner on the bottom of the screen telling me that the battle group The Captain’s ship was in was heading HOME!!!  I couldn’t believe it.  It was almost over, but not yet.

Finally, we received a homecoming date and as luck would have it, it was my due date.  Not a problem really, unless you consider I had already given birth to two babies on their due date and number three didn’t act like he was going to wait around much longer.  So The Captain did the unthinkable.  He left liberty in Hawaii and got on a plane to San Diego.

In the early morning of May 25, 2003, I dressed my boys in the required red, white and blue, put “I Love Daddy” signs in their hands, wretched one last time and went to the airport.  And after a very long Nine Months I no longer had to tell The Big Brother that NO, that man in a flight suit is NOT your Daddy.  Daddy was no longer words in an e-mail, a voice on the phone, or a face on a video but he was here, in the flesh to kiss and to hug.

Daddy's Home!

Daddy’s Home!

What a wonderful moment, the stars were aligned and the Angels were singing and a family was almost complete.

Almost Perfect!

Almost Perfect!

 

Then three days later the Gods smiled,  and Angels rejoiced and all was right in our little corner of the world in this perfect moment, on a May Day, ten years ago.  Happy Birthday Little Brother!

Perfect May Day!

Perfect May Day!

 

On this occasion we were very blessed but I do not forget those families who do not get this moment, of husbands, daddies, sons and daughters who do not come home.  To those families, my prayers for peace and thank you for your strength as you made the ultimate sacrifice.  May we always remember.  Memorial Day – 2013

 

Friday Fun – Bathing Beauty?!

Time for some Friday Fun with Hilary at Feeling Beachie.  Pretty sure it’s a pool party cause it’s that time of year.  Put on your best string bikini (or not) and join in.

(Well, like it or not, here we are…MEMORIAL DAY WEEKEND!  You know what that means…that’s right, time to breakout the swimwear!  I know, say it isn’t so…but it is.  So, do what you must, bust out a few crunches a couple of five pounds weights and tighten it up.  Or be like me…and COVER IT UP!)  Cause Johnny is back and “What Not to Wear” has nothing on him.  Take heed and don’t let this woman’s experience be yours.  Johnny has no filter, and due to many pool “incidents” we might need to share our joy at a pool near you.”

Read and heed people…read and heed!

In honor of Swim Suit season I thought I would begin a tradition…………Welll, at least do it TWO YEARS IN A ROW.  I am considering this my public service announcement.  If you think about some of the SIGHTS you can see at your local pool, lake, beach, etc (ME included) readers take heed, share the “Word” with you friends and family.  After all,FRIENDS DON’T LET FRIENDS make public appearances in “Ill-fitting” swim wear.  Let this “Poor Woman’s” encounter with Johnny be the quiet voice in your head when selecting the “Perfect Bikini” for your summer fun!

Charles Schultz has Classic Peanuts…………….because you cannot watch Lucy bully Charlie too many times.  However Readers, we have ULTIMATE JOHNNY…………..Because some stories JUST need to be RE-TOLD AND PASSED ON.  ENJOY AND SPREAD THE MESSAGE!

Johnny getting his MAN TAN

 (Originally posted May 20, 2011)

Aaahh, it’s that time of year.  The weather is warm, you’re trading in your boots for flip flops and your sweater and jacket for YES, THAT’S  RIGHT,  the swimsuit.  I know, most of us hate it, we avoid it, but if you are a parent of a young child you suck it up, put on brave front and make the dreaded public appearance in your bathing suit.  This can be a traumatizing enough experience, I know.  But as a public service announcement, I feel I must share with you the following story.  Think of it as a cautionary tale when selecting the bathing suit most suitable for your (clearing throat) weelll, shall we say,  body type.

A couple of summers ago we were still living in San Diego.  At the time our options for swimming were the beach (fun, yes, relaxing with my boys, NOT) or a personal invite to a pool.  We snagged an invite to my friend’s pool at her condo.  At the time I was big and pregnant with Baby Girl so I was relaxing at the side of the pool.  All of my boys are great swimmers so they were all over the place.  Johnny is an underwater guy.  I was watching him swim when I saw him swim up to a fuller size “lady.”  Johnny comes across as charming, at first, so she began chatting with him.  My radar started to activate as I noticed him getting closer and closer to the “ladies”.  He a skin guy and she had a lot of it, so I could read his mind.  I tried to jump up to stop the train wreck but at 9 mos. pregnant, it was not happening.

Me:  Johnny, come over here.

Johnny:  No response.  He is busy chatting, touching her arms and pointing to something on her face.

Me:  Come on, Johnny, let her alone so she can relax.

Johnny:  No, Mommy, wait!  (voice getting very excited)  Come here!  I think I just found the UGLIEST woman in the world!

Me:  At a complete loss with nowhere to hide.  I was, after all, wearing a bright yellow maternity bathing suit top and I wasn’t going to be able to run!  But I swaggered over as quickly as possible.

Me:  That is not a nice thing to say, Johnny.

Johnny:  Oh, no, Mommy wait!  Never mind, I think it’s a MAN.

Our pool opens this weekend.  I already have my cover up, do you?

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.

 

Friday Fun – Party On…

I don’t know if I am still invited to the party, so I decided to do what any respectable girl, with not dignity would, and INVITE myself.  People are usually just to appalled by such a lack of said dignity and self-respect that they don’t ask me to leave.  It’s true, just ask my roommate, “Nurse Mary” from Coronado, CA.  I showed up at her “private BBQ” with a cooler of drinks and stood front and center in every picture.  She was is such a state of shock I just went ahead and moved my bed in before she could come to…TRUE STORY!

Anywho…since I have been out doing 347 kinds of IN YOUR FACE fun, I thought I would join Hilary at Feeling Beachie for a little Friday Fun.  Hilary is an awesome hostess, and I’m sure if she ever met me “in person” she would still let me crash her party and play co-host every once in a while.  Weeellll, maybe not if she actually met me, cause who knows what stories “Nurse Mary” would bust out.

So, I don’t know where to begin.  The fun has been so over the top, I don’t want to come across as “all that and a bag of chips.”  Well, at the  very least I should remain meek and humble…right?  Not be, “LOOK AT ME, GUESS WHAT I GOT TO DO AND WHAT HAPPENED TO ME.”

I hate to keep you, Dear Reader, in suspense, so I’ll just get on with it.  I’ll start with the most exciting event so you can just ride that wave of fun through to the BITTER, and I mean REALLY FUN end.

First, don’t go getting all jealous and everything but here goes…I GOT TO MOVE!!!  Yep, that’s right, I actually got the chance,  twice in ONE year, to pack all of my belongings and that of 4 other people into boxes, trash bags and a minivan and move around the corner and then ATTEMPT to unpack all belongings of myself and the OTHER 4 people.  And listen close, because I don’t mean to brag, but…I GOT TO DO IT WITH MY FRIENDS AND ALL OF OUR KIDS…ALONE.  Why?  Because…a pipe burst at “The School” and it was closed on moving day…so Me, two moms, seven kids, and one CDR (trying to enjoy his retirement) got to do it.

Where was the Captain, you may ask…well, the Navy sent him to OHIO, of course.  Guess they are getting ready to put an Ocean in Dayton or something and needed the Captain’s assistance.  I warned you…it was CRAZY fun!!!

You know what made it over the top?  You guessed it…the PAID movers that took EIGHT HOURS to do FOUR hours worth of work.  They were so nice, they only put about FOUR gashes in my walls.

That was so much fun that the next day I invited the Cable Guy on a CRAZY rain fun-filled day to “not” hook up my cable properly and drag mud through my new to me house.  Just message me and I’ll give you his number so you can invite him to your next “party” cause he is a regular “party” animal.

There is so much more fun to report, but like I said, I don’t won’t to brag so I will just leave you with this last little bit of “fun.”

Tonight when I took Johnny and the Little Brother to the Golden Arches for dinner I got the opportunity to avoid explaining what a “Strip Club” was.  Yep, I left it at, “Mommy, look , that place has its windows covered to keep out the light, it must be an arcade and they want to protect their “video” games. Right, Mommy?”

Me – Silent.

Johnny – “No.  I think it’s a club.  Right, Mommy?”

Me – “Yep, Johnny, it’s a club.”

Johnny – “See, I knew it.”
I don’t want to know how he knew this kind of information…

Johnny – “What kind of club.”

And this is where the FUN just had to end because after living with such wild abandon for an extended period of time it just didn’t seem fair to really brag that I got to use the term “strip club” or “topless dancers” all within five minutes.

Well, by this time, you are soooo jealous you want to know just EXACTLY  where I reside so you can use me for a good time so I will just get on with some Friday Fill -In FUN!!

This week’s statements:
1. If ___ then____
2. ____ is my ___ of the ____
3. Once, I was surprised to find myself __________________.
4. To keep from going crazy, I _________.

What you never wanted to know and never asked…

1. If  I have any more FUN then I just might start hanging out at those special “video game clubs” to pay for said fun.

2. Stretch marks is my of having all of the fun but never actually having to consider statement #1.

3. Once, I was surprised to find myself living in one house for more than ONE year!

4. To keep from going crazy, I see how fast I can pack up everything my family owns and move it to another location!

Don’t be jealous but as I write the “FUN” continues…Bloody nose on new floor…Don’t everyone come to the party at once…but if you do…bring drinks…party on FUN people!

 

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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.

 

 

The Road Traveled – Part 3

Johnny does not have school today, so he is chillaxin!  As always, no matter the day, the season, when he went to bed, he is up by 6, at the latest!  If he happens to sleep till say…6:30, he accuses us of letting him ” over sleep.”  No alarm clock is required for this 6 a.m. revelee, because Johnny was born with an internal clock that the makers of Rolex and TAG Hauer would covet.  If nothing, Johnny is prompt and accurate.  His motto, “Time is of the Essence.”  Or as he tells us, “The Early Bat gets the Worm.”

The Early Bat!

The Early Bat!

I should not be complaining about the 6 a.m. wake up call as early on in our trip, sleep deprivation was a major pothole and when I say MAJOR, I am not exaggerating…at all.  There was one of these potholes about every half-mile and no one seemed to be able to find the correct material to fill the hole so that maybe it would only be a bump in the road.

Anytime I had the opportunity to speak with another Autism parent the first thing I would ask is, “Does your child sleep?”  But I said it in more of a pleading tone, hoping that parent would know some secret that would unlock the mystery of my non-sleeping child.  He literally would have dark circles around his eyes.  I would tell the doctors:   “Yes, he has a regular bedtime.”  “Yes, he has a bedtime routine.” “Yes, he falls asleep but does not STAY asleep.  As with most issues encountered on this autism road trip, there were no answers except to simply “adapt.”  Easier said, than done.

Many a day I would call his teacher to let her know that I had no idea how long Johnny had been awake.  At times “lack of sleep” would win and I would not even hear him in the morning.  This would then start my morning off with a racing heart realizing I had no idea what he had been doing.  Johnny was a master escape artist so I would only begin to breathe once I found him contentedly in front of the t.v. or cut him off at the pass as he ran his 100th lap around the living room, humming along to soothe himself.  Each time I walked in on this scenario he would come to a screeching halt, take one look with a face and voice void of emotion and flatly ask, “what?”  Having too many questions, a 5-year-old could never answer, I simply said, “nothing” and would then go contact his teacher.

Imagine a non-sleeping child, two brothers, and 2 tired parents trying to take any type of vacation.  That’s right, you have a family of 5 sleep deprived individuals wondering why “every other family” can do something as simple as go away for a few days, but for us, a vacation was more like the road trip from hell.  The pot holes were too many and we began to lose the desire to even fill them.

The stress began to grow on our family but as always, “comforted” by  others always reminding me how “LUCKY” I was that he seemed to be “high-functioning.”  Funny, and sadly, I did not feel, “lucky” but raised a non-whiner, quitter or complainer, I thought…”well, guess I am, so I better figure this out, because clearly no one is going to help.”  Why would I need help?  I didn’t even think I could ask, after all, wasn’t that for parents who weren’t as “lucky”.

By this time Johnny had an “educational only” diagnosis of autism but not a medical one.  The medical one was a bit trickier because we were “so lucky” that he was “high-functioning”.  And as I said before, Johnny did not test well.  Growing weary and frazzled, I began to figure out how I could get some help.  And how Johnny could finally get the ever “elusive” autism diagnosis so I could get some directions while traveling this road that seemed to be an ever-growing turn about with no exits in sight.

Traveling down this road, especially in the early years, has given me gray hairs, dark circles, and an addiction to caffeine.  It has also taught me perseverence, compassion, acceptance, how to yell at strangers and how to laugh… really hard and embrace Johnny for who he is, who he was born to be…cause he is waaayy cool…and as I say about my life, I’m not sure about “lucky” but blessed…absolutely.

 

 

Want to hear straight from me?  Of course you do!  So, tune in.  Tomorrow, April 16 at 11 a.m. est until 12 I will be a guest on the popular radio talk show,  “Stop Raising Einstein.”  with author and host, Tara Kennedy-Kline.  Tune in to hear more about the road I have traveled, my life as a special needs parent and all the fun along the way!  You can even call in!  877-864-4869

 

 

 

 

 

 

 

 

 

Friday Fun – At the Ol’ Ballgame

It’s ME…I’m baaaccckkk!  Where have I been?  What have I been doing?  I know you have been wondering.  Well, concern yourself no more, I will fill you in…becaues it is Friday Four Fill In Fun with Hilary at Feeling Beachie and I made it to the party.  Brought sunscreen and everything!

Sooo…what have I been doing?  Out living life in the wild, in your face with crazy, wild abandon manner that I am accustomed to, of course!  Because why take it easy when you can go through your life on the edge…of sanity.

Besides wouldn’t it just be plain boring if say,  I dropped The Big Brother off at baseball practice with the correct team and he didn’t have to chase his mother’s car through the parking lot, only to have his mother step on the gas and leave him in the dust.  Yeah…I think so to.  Plus, practicing with a strange team was good for his people skills.  It was brought to my attention that perhaps this could be his strong argument for getting the cell phone that I am so against.  My response…NO.  Because despite being an honor student, after his mother left him breathless, in the dust of gas fumes, it never occurred to him to use someone’s phone to call me.  If he can’t use that brain to think, “maybe I should make a phone call”  well, than, I say…”sorry about your luck…oh yeah, and maybe we should start you on a running program.”  Perhaps speed work would help.

Like how I turn the tables?  Me to.

If the beginning of this Baseball Season is any indication, it is going to be a long season, in which, I acquire quite the collection of wigs and dark glasses.  Finally, after much running around like the crazy person I am, having wild fun being three places at once, I managed to make it to The Big Brother’s scrimmage.  I discreetly took a seat in the bleachers.  Johnny chose to assume his baseball cheering stance:

Go Team!

Go Team!

 

Yep, Johnny looovvves baseball season.

There not quite 5 minutes and The Little Brother announces to me, God, and everyone, that he in fact, “Is Gasie.!”  Forget that cramped feeling, I had the bleachers to myself, as the crowd quietly dispersed.  Well, a few stuck around.  That is, until Johnny began to express his great desire to wrap this game up so loudly and incessantly that from across the field, from the other dugout, the other COACH yelled back, “THERE ARE ONLY TWO BATTERS LEFT!”

Long game…we were only there the last 2 innings.  Speaking of wigs, should I be a blond or a red-head?

Well, since the day is young and there is more fun to be had, packing my house into boxes for my second move since July, etc.,  I will get down to business with the Four Fill In.

This week’s statements:
1. I don’t like to ____
2. I love to ___ in the morning
3. If I could change one thing in my life it would be _______
4. If I was better at _____, I would _____
And now…everything you didn’t want to know but I’m telling you anyway.

1.  I don’t like to have children with such a poor level of fitness, they can’t even catch a car driving through a parking lot.  Hey, I was going slow.

2.  I love to fantasize about joining the witness protection program in the morning, after reminisce about the previous days fun.

3.  If I could change one thing in my life it would be to add more chaos, I don’t have enough chaos.

4.  If I was better at scheduling and organization, I would have nothing to blog about.

Happy Friday!  Have fun and please, if you see me, buy me a drink, it’s been a long week!

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.”