The Day You Passed Away

As I write this, I sit on a picnic bench in our local quaint harbor hosting a sailboat race, graciously feeding lunch to a hungry little 1 year old that loves to eat anywhere but her highchair.  A group of stationary elders from the nursing home enjoy a Wednesday July 13 outdoor meal too, complete with classical orchestral covers filling the air from the small boom box accompanying them.  Boston Pops I presume.  Trays full of pizza accidentally falling to the ground.  There are many trips to the public restroom guided by titanium walkers adorned with fluorescent green tennis balls.  Of course this is the day I forgot the DSLR and had to resort to the phone camera.

I’m physically scooping the ground up minestrone into baby bird’s mouth, but mentally attending to the image of my young cousin’s last minutes on earth as her cancer battle with Ewing’s sarcoma is drawing to an end.  The final round is here.  Cancer was not victorious as Kate was always the clear winner, but she is retiring to a place where tumors cannot compete.

I personally don’t know what it’s like to fight cancer, but I can relate to becoming a statistic when the nervous doctor with a shaky voice gives you a diagnosis in that stale hospital room.  Foreign to me is the news that comes with an unfavorable prognosis.  But from that day forward we become a percentage.  A percentage filled with doctors appointments and a brave face that gets you through it all, even though somewhere deep sown inside you’re scared out of your mind.  Like Kate, you tuck away the fear to become a warrior, a fighter.  Never giving up.

I sit in our park in a torturous state, trying to fathom what it feels like your last moments with your loved ones by your bedside.  My mind going to a dark place it does not want to go.  We all want just one more day.  Then it strikes me like a chord -- Strawberry Fields Forever.  I hear the familiar melody float over to our neighboring table and can’t help but think it’s a message from above.  See when my Papa was on the lifeline fence in 2003 after a sudden aneurism, he briefly came back to tell us a tale of what he saw.  That when he temporarily flat lined, he was brought to an endless stretch of strawberry fields where his parents were wading in the tall sugary grass.  The smell of tart sweetness was overwhelming, and he knew they would be patiently waiting for him to soon return.  Now whenever The Beatles sing their sweet song, I know it’s my grandfather saying hello with his berry-stained lips and feet. 

Well here I am engulfed with the emotion of my cousin’s lonely state, and my Papa sends a message from his place of peace.  Letting me know that Kate won’t be alone.  Letting me know that any of us won’t be alone when it’s our time to join him.  And to really make sure I was listening, I Want To Hold Your Hand follows from the boom box.  Blew me away.  One of those moments.  It’s funny how songs speak to us in times of sorrow.  Like the lyrics were made for your moment of tears delicately dripping down to your lap.

I hear you Papa.  You make me comfortable in our fate.

Sgt. Pepper’s Lonely Hearts Club Band comes on next.  I know our conversation is over as there is clearly no connection to a bunch of Brits running around in primary-colored silk military getups while sporting fake mustaches on drugs and my angelic moment from the heavens.

 

We all take turns going.  Passing on.  Lifting up.  One day I will die, one day you will die.  It’s inevitable for all of us, but for some it’s too early.  For many, not on their own terms. 

Seeing all of these seniors who had so many years under their belt made me so sad for your early departure at a ripe 24 years of age Kate.  Sad that you never got to wear a momentous white dress and walk down the aisle, your proud Dad squeezing your hand by your side, your mom & sister tearfully watching as you walk their way.  But I know you’ve always had your Prince Charming named Jeremiah.  An endless love that stuck by you through thick and thin.  I’m sorry you didn’t get to experience the rewarding birth of your own newborn children, tears of sweat that yield tears of joy.  But I know you had that love with your nephew Trent.  Plenty of tears of joy were shared with your special little guy as you watched him grow up step by step.  As I think of the life you got to lead on this Earth, I realize not to focus on the “never got to’s”, but instead on the fulfilling thrills that you got to call your own.  Plenty of moments full of love and laughter from family and friends that simply adore you.

To me Kate, you’ll always be my shy little 4-year old cousin who could turn a frown upside down if a bag of Chips Ahoy and a tall glass of milk were around.  I know wherever you land there will be hills of crumbly cookies and cloudy rivers of milk, alongside sweet patches of strawberry fields.  Lyla will always know the lessons cousin Kate taught us – to never give up.  To be a warrior.  And do it all with a smile on our face.

We love you Kate.  Forever missed, never forgotten.

Greener Side On This Side

Boy, did I ever change-up the everyday mom routine recently.  My constant game of Happily Play With Baby Then Pick Up The House turned into flights to Buffalo for a woo-girl infused bachelorette weekend, a monster music festival set on a bed of white flour Bama sand, baby-less trips across Mass to reunite with some college gals, a couple of concerts at the Garden, my first camping weekend since I was that 26-year old wannabe hippie at Bonnaroo…muddy galoshes and all.  My protective bubble was burst over this last month.  Boldly venturing out of our Beantown circle that I’ve created to cushion the 2010 steep fall into our new world.  A bubble that I also like to think of as distinctly separating old Jessica versus new and greatly improved Jessica.

Yes these are toddlers at a Widespread Panic show. Mid-high five. Trying to kill me with cuteness.

Old Jessica:  I used to worry about how small our new half of a house was when we moved here in chilly December 2009. A petite family of 2 was soon turning into a spacious family of 3, and 22-weeks pregnant me had a new kitchen the size of my old walk-in closet.  New Jessica:  extravagant worry turned to appreciation as these days I relish in the calming cool salty sea breeze this old house gives off at night overlooking the ocean at the end of a stressful, mind-racing day.

When we were planning our wedding, I used to obsess over how perfect the centerpieces had to look on the clean-lined table. How perfect the pastel pink and chocolate brown polkadot ribbon had to be hand-tied to the 200 frosted votives I purchased in bulk.  That I made my sisters tie on.  How unique the moss-covered ‘T’ and ‘J’ foam initials were hanging to greet guests as they waltzed through the country club doors.  Now I enjoy just knowing I have a partner in life to help me get through, well...life. Good or bad. In fact I was just laughing at a Bridezilla on tv, whine and whine about how soup wasn't in her budget and she had to have it.  She was crying over soup.  Oversaturated vegetables in sodium broth. Soup.  Was I her at some point??  All I know is that I’m not her now.  Thank goodness.

My 2007 jeans used to give off an image of "You needed to lose weight like 5 minutes ago" as I stared into the full-length mirror, then reaming through my closet for a happy hour outfit. Now I would kill to be back in my pre-pregnancy size and slap myself silly for constantly battling my womanly image.  It’s still an everyday struggle, but I have learned to appreciate what these wider hips have yielded – a little girl I get to put pigtails on. 

Used to think the Pepto pink 1905 house on the waterfront corner here with the worn out shutters was the biggest waste of Atlantic Ocean real estate existing. Now I see the most perfect 3-story seaside home that I yearn to sip coffee out of in the morning gazing over the mirror blue glass water just yards away, like I'm sure the aged, retired resident does on a daily basis. Taking pride in his little slice of heaven.  Taking pride in his Pepto colored beauty.

Just the other day I was complaining about how much Rocket Man Troy traveled. But then hours later after squeezing tickle laughter out of Lyla during playtime, I realized his job allowed me to stay at home with my little cuddle bug. To take care of her the way she needs to be watched over.  To spend every waking minute aiding her in getting to the next developmental milestones she works extra hard for each day.  To teach her how to high five – and she can rock a mean high five as she holds her hand up at eye level in anticipation for your fingers to slap with hers.  Love this new trick.

I'm not trying to be the over joyous church lady here that you want to throw your shoe at when you're having a bad day. But I am trying to let you in on my little discovery – I get it now.

I walk around these parts now wearing pride on my sleeves, feeling honored and regal knowing that I get it - what’s important.  What’s not.  I feel like I’m part of this non-disclosed elite group of people that are the closest to spiritual nirvana, because we as this elite force know what petty minuscule things not to worry about and what soul-lifting immeasurable moments to focus on in this short time we have to breathe. 

I must say, sometimes I feel really bad for the ones not yet part of this group.  I love to see the progress of us all climbing up the ladder towards this bright uniformity, but hate to see the personalities still stuck at the muddy brown bottom in their hippie galoshes.  Like the Jackie O. woman in her 50’s walking her 4lb Chihuahua on a Louis Vuitton leash the other day, who refused to veer off to the side as my delicate 18lb HUMAN BABY was being pushed in her stroller that was only made for pavement.  The dog’s paws that were made for grass remained on the precious concrete as she boldly pressed on not even acknowledging our existence, as I last-minute veered onto the bumpy terrain and realized this woman clearly did not get it.  Seriously, not even an ounce of anger swept over me.  I just plain felt bad for her.  Like it was too late for her to reach the top. 

But to those of you wanting to get your boots out of the mud, I have some pointers…

Complain less about your frizzy hair in the muggy summer air, and appreciate that you don't have to deal with a sweaty wig like some brave women in my life do that are battling cancer that just wont retreat.

Complain less about how your baby won't sleep through the night, and appreciate you're not a parent at Children's Hospital waiting agonizing hours post-surgery for their child just to wake up.  Just remember there are some who stay awake just to watch their children sleep.

Complain less about having to aid to the handicap as “It’s so annoying they’re always trying to do things they can’t do.”  This is a real statement.  From a 30-year old’s mouth this past month.  Who went on to make fun of the Special Olympics.  In front of a group of very intelligent people.  In front of me.   I just about fell out of my chair.  I could feel the lump in my throat trying to pierce my tear ducts, but I cowardly stuffed the hurt down below.  Only a few people in this crowd knew I had a daughter with special needs.  Even if they didn’t know – does it matter?!?!?  Do we really need to be speaking like this as adults?!?!?  I don’t understand this pompous need to verify your “intelligence” by speaking down on others.  Others you don’t know.  Others who hold much more emotional intellect than a naïve bully will ever possess. 

But I digress. 

Actually…no I don’t.

I have to have faith that one day these lost souls will come back around full circle to their 4-year old innocence.  Some re-discovering it through their own unborn children, some through a stranger’s impactful story.  And in the mean time I can continue to build my courage up to openly educate versus letting the lump in my throat bury me in the room’s cobwebbed corner.  The word retard or retarded still paralyzes me with it’s stabbing sounds thrashing through my eardrums and twisting my heart into two.  It’s not a matter of choosing what to let bother you or not, like some say.  I instantly feel pain before my brain can even process the conversation.   You’d think our generations still using this hurtful dialect would remember to at least filter their words around me, but it’s a sad sad day when someone in my presence drops the r-word as involuntarily for their mouths as salivating.  Friends let it ramble off their tongue without flinching.  Family can’t remember that it might be a good time to remove it from their word bank. (And I appreciate those of you who correct yourselves on the spot – it symbolizes positive change that makes me have hope that one day Lyla won’t have her eardrums stabbed either).

So much for venturing out.  Back to my bubble I ran, just wanting to give high fives to my baby girl.  To sip my freshly-opened dark roast cup of Starbucks staring at the ocean we hope to hop in SOON with the approach of steamy summer.  To walk the streets of Boston with Lyla’s 17-month old playmate in route to storybook Boston Commons park to frolic in the tall tulips. Back to a world surrounded by a black wrought iron fence that gets it. And it really is much greener over here.

I love my new-found life on this side of the fence.  There were many familiar people here where I previously overlooked their genuine hearts’ whereabouts, but others I have had the pleasure of meeting.  I was no angel myself upon entering these gates and had much to learn from these new gracious acquaintances.  There is still so much more to learn as I look down upon my crackled, dry dirt galoshes freshly off of those wooden ladder rungs.

How perfect is it that just now my thirst quenching post-airplane-ride bottle of cold Magic Hat’s cap read “Smile. It confuses people.”  Rightly stated friends.

So please, grab that ladder and hop on over to this side of the fence with me.  All are welcome to enjoy our manicured lawn full of appreciation for the little things and change for the better.  And bottles of Magic Hat.

You can find us playing in the green grass.

Wonderland

My eyes are burning from exhaustion, fingers are swollen from sangria dehydration, jeans are leaving permanent skin indents from overindulgence. Could only mean one thing – That was a very merry birthday party.

Let’s go down the rabbit hole, shall we?

It all started last Friday as we put Wonderland on Wheels and headed to Upstate New York’s in-law abode that could accommodate the large guest list much better than our cozy rental. The brass key wasn’t fitting in our Boston keyhole – a home of which half is filled with inflatable toys. We would have been using rocking horses as miniature seats and hitting our heads on ceilings after taking oversized bites on the ‘Eat Me’ petit fours if Lyla’s 1st birthday party was to be held in Beantown. Cramped much? Instead we created a family festival with enough room for floating helium balloons, singing flowers, Mad Hats, clanking horseshoes, tart Jolly Ranchers in tea cups, a perfect Cheshire Cat cake, and Alice in a tutu.

And what festival would be complete without a Jester? Best dressed Mike.

As I bounced around to and from each lawn chair toadstool gathering, the moment-capturing Canon swinging on my neck as it never left my side, it was clear that all I could sense was heartfelt appreciation. Leaking out from my White Queen getup like bright radiant light on the first 65 degree spring day we’ve seen all year. Beams of appreciation for Lyla of course, awakening all of our eyes to what really matters in life.

Appreciation for Troy & I, for actually surviving our first year as parents –

• 2,920 diapers changed.
  
  
• 3,854 oz. or 31 GALLONS of breastmilk pumped.
  
  
• 1,825 bottles washed.
  
  
• 1,264,729 kisses given.

Well done honey.

Appreciation for our family & close friends who supported us from Day 1’s hospital room. The words of encouragement and the shoulders to lean on when times were challenging. The You can do it!‘s and comment love have been our scaffolding as we build our pyramid high into the sky.

Appreciation for tutus – you just can’t get enough of them.

Appreciation for the perfect card given by the perfect aunt who made a perfect cake. Take that Cake Boss.

Appreciation that a circle of friends could love a little girl so much, all she can do is smile when she meets you.

Appreciation for my Down Syndrome family as I like to call them. To enter into a world on April 10, 2010 with emotions of No one understands. No one gets it. No one will ever know a minute of our life. You provide a sense of validation for me to throw that loneliness in the trash. We now connect over morning coffee and tales of the cardiologist with intermittent bites of coffee cake. I love it. And I love you all.

As the fun party go-ers were advancing for their goodbye hugs, my painful solo thought was Wait, I barely got to catch up with you on how the wedding plans are going! or I missed the chance to see how that precious little grandchild of yours doing! Like her first year, the day flew by too fast. Couldn’t stop and smell the Queen’s red roses. I could literally see the white rabbit frantically running around singing We’re late, we’re late! I felt like I wanted to take each of you out for a 4-hour tea brunch to gab over cucumber cream cheese finger sandwiches & bronzed chamomile on the current events in our lives and the emotions that branch from them. The hamster wheel called Lyla Maintenance and Party Photography prevented the deep talks that make my heart full at parties. Instead I relished on peeping my eye through a lens to document one of the days that goes down in the thick parenting history book as Chapter 2 “First Birthday Party”, thereafter Chapter 1 “The Day You Were Born”.

I could only hope my lost conversations were transported into emotion as we gathered around the dimly lit living room to gaze at the projected Lyla’s World: A Mom’s Diary Through Facebook video tribute. The tissue box made its way around the circle, chuckles roared as we watched Weeble Wobble Lyla learning to sit. Tears ran down our cheeks as the slides transitioned over her surgery recovery images. Grins from ear to ear as she discovered pink frosting on the 12 foot screen. It was the perfect ending to appreciate these little moments our bundle of tutus gave us. Ones we can never get back, but can always be remembered from Chapter 2’s illustrations.

Now we must all gulp the “Drink Me” emerald glass bottle to awaken from this magical Wonderland dream. Hurry your tush, the Queen is shouting “Off with her head!!!” Rub those tired eyes, arm stretch over your dizzy head, back to reality we all must go. But don’t forget your Madhatter party favor full of aromatic tea bags and fruity candy that gets stuck in your teeth.

Thank you all for being there. Where shall we go next year?!