Tuesday, June 14, 2016

When an itch is more than an itch.

Physically, I have been feeling great despite my rapid weight gain :)  Every day has been so busy I barely have time to think.  But whenever I get in the car to drive, I am alone with my grief and feeling so terribly sad lately.  Like an itch that can’t be scratched, it is always there, lingering underneath my skin no matter how happy I truly am on the surface. 

I think about how, although the idea of having another baby has infused a lot of happiness and anticipation into our lives, the truth remains that Ty’s absence is still so tremendously present.  I don’t know what I was expecting to happen, but nothing has changed, not even one bit.  I miss him.  This wasn’t supposed to be my life.  And I would give anything to have HIM back.  It is all I really want. 

Yesterday was an emotional afternoon.  I cried driving home from work.  I was wondering what my life would look like if he was still here.  Would he be in a big boy wheelchair with a joystick controller?  Would his speech still be so weak?  Or would we have triumphant days at physical therapy – making baby steps toward getting him back on his feet.  How would he be with Gavin and vice versa?  Would we still be welcoming a new baby into our home?  Then I think about what our life should look like.  Our life where cancer never showed it’s ugly face.  Where Ty is running strong on the soccer field and playing catch with his little brother outside.  It was all so incredibly heartbreaking to imagine.  

I hosted a Mess Fest meeting at the TLC office later last night.  We met with GiantKids, another nonprofit in the area, to discuss how we are working together to make it an incredible experience for the children in attendance who have battled/are battling cancer and other life-threatening illnesses.  I get so excited planning this event, because it is just so magical.  We were talking through the various activities planned and sharing exciting new ideas. 

Toward the end of the meeting I started scratching my inner wrist.  It was just a bit irritated and I was mindlessly rubbing it to sooth the itch.  I thought I might be feeling bumps, so I quietly hoped it wasn’t some type of rash forming and we ended the meeting shortly thereafter.  In the car I started scratching furiously, turned on the light and took a good look at my wrist.  I then realized that the itch was isolated to my “Thank You” tattoo.  In fact, the letters – the large T Y specifically – were slightly swollen and puffy so you could feel the outline of the letters if you rubbed your fingers against it. 

HOW CRAZY IS THAT?   I was in complete awe over it.  His name - right there in front of me.  I have never received a more obvious and miraculous sign from my boy than this.  It has NEVER happened before, my tattoo never bothered me for a second and I’ve had it for almost 3 years.  The slight swelling went away soon afterward.  It didn’t cause any discomfort… he just needed to get my attention and let me know that he is with me.   

You just have to believe there is something so much bigger than this life.  And whatever it is, it is pretty amazing.  

Thursday, June 2, 2016

Mourning the Baby Girl I'll Never Have

I was 31 years old when I got pregnant with my first.  What excitement ensued!  I remember checking the baby tracker almost daily to see what was new with the baby that day.  I cheated by reading what to expect in weeks ahead, and I bragged to my husband when he reached the size of a kumquat.  I was obsessed with knowing the gender, even though in my heart I was absolutely certain it was a girl.  I checked with the Chinese baby calendar online to determine the sex, and on my first try I landed on a blue square.

I immediately reassured myself.  First of all, this is a silly, meaningless, non-scientific calculator.  Second, I’m not 100% sure about the month I conceived.  It was during a New Year’s eve getaway so maybe it was December instead of January… Let me try that. 

Pink square.  Relief.

I grew up babysitting so I could make extra cash in my High School days.  In fact, I started when I was 11 years old.  Obviously things were different back then – I was still afraid of the dark but I would happily watch your kids on a Saturday night for $5 an hour, and parents trusted me - no questions asked. 

Both families I worked for on a regular basis happened to have two girls. We enjoyed braiding hair and watering the dandelions outside before playing My Little Pony at bedtime.  In my senior year, however, a new family moved around the corner who had two young boys.  Little did I know what I was in for when I was hired for that particular gig. 

Never in my career did I have to watch Teenage Mutant Ninja Turtles and peel wild boys from my body as they pounced on me over and over again.  I think if you saw my face during my first day at the job, you might have described it somewhere between shock, fear and a bit of disgust. Thankfully I was off to college shortly thereafter and never looked back. 

So when it finally came time for my sonogram, I was already bursting with joy over the expected words “it’s a girl” before they were even spoken.  When the sonogram technician instead pointed out the opposite, my heart sank just a bit.  Surely she’s mistaken?  I recovered quickly and realized how incredibly happy I was regardless, but I was totally surprised and caught off-guard nonetheless. 

We named him Ty and he was the love of my life from the moment he was born.  I remember watching him with pure wonder and awe.  “Boys are crazy!” I would say to myself with a smile.  Instead of watching TV, he was throwing his toys at the screen.  Instead of playing with his learning cube he was trying to smash it into pieces with his toy tools.  He zipped up the ladder and down the high slide at the playground before I could stop him, and he couldn’t even talk yet!

It was around that time I went in for the second baby sonogram.  THIS TIME, it was a girl for sure.  

Wrong again.

You know what?  How nice for Ty.  He will have a brother so close in age and they will be the best of friends.  In my heart I knew I would have more children so getting the boys out of the way first was probably a blessing.  Soon I would have a girl and it will be so sweet to know she has 2 big brothers to protect her.  Life will be perfect.

As most of you know, this is where my story takes a very sad turn.  Ty got cancer when he was 2 years and 10 months old.  His little brother, Gavin, was just 16 months old at the time.  For the next two years we focused on saving Ty’s life, missing out on so much of the childhood they both deserved, and in the end we lost him anyway.  He was gone just days after his fifth birthday, and I am broken.  I am half the person I used to be, the other half left with him on that crisp October afternoon. 

It took my husband and I a very long time before we could even talk about the idea of maybe having another baby.  Years went by.  I woke up one day and the woman looking back at me was suddenly old and turning gray!  My baby boy was in first grade and he was always so alone!  How did we get here, this is not my life. 

My husband and I agreed to try for another baby, but it didn’t happen.  I was so upset and angry.  I never had trouble getting pregnant in my earlier years, it seemed so unfair that I couldn’t get pregnant now – when the pressure of the clock was loudly ticking away in my ear.  We decided together that we wouldn’t try and medical procedures, if it was meant to be it was meant to be.  And by the time my 40th birthday rolled around, I believed it wasn’t. 

It wasn’t until I accepted this fact and started to actually fear the idea of going back to diapers and car seats that I did, in fact, get pregnant.  I am still in shock.

I decided that we should name her Faith as a testament to all we’ve been through.  I began filling shopping carts with tutus, tiaras and delicate floral crib sheets.  I spent weeks thumbing through pink or lavender nursery ideas.  The idea of watching my husband with a little girl in pigtails made my heart skip a beat.  I intentionally started visiting Zulily again on a regular basis, and went straight to the pages on little girls. 

Once again, my heart was set on a baby girl.  Once again I am emptying those shopping carts one by one, and feeling oh-so uninspired by cargo shorts and navy blue everything.  It took me a few days to mourn the fact that a girl just isn’t meant to be.  I am in love with my baby boy already, and I wouldn’t trade him in for a million tiaras, but I can’t promise I won’t be tempted to play with his hair when he sleeps.  My talent is being wasted – not everyone can French braid like I can! 

Having a baby boy is so fun, don’t get me wrong, and I dream about how much I love to put a newborn into a soft, fresh one-piece with blue trim.  To pick him up and nuzzle his hair under my nose.  It’s my favorite thing.  But a baby boy also comes with a ton of mixed of emotions that I need to cope with.  Would Ty feel we are trying to replace him?  What if he looks like Ty, will it break my heart?  What if he doesn’t look at all like him, will I be disappointed?  What if my mind starts thinking crazy thoughts in hopes that Ty can be reborn in this baby.  I used to say things like that in my darkest days, begging Lou to have another baby, and it terrified him.

I am okay.  I am happy.  I am in a good place and I can’t wait to have another baby.   

Wednesday, April 27, 2016

Spring Cleaning with New Meaning

I spent the weekend cleaning out the closets with Lou.  And the toy chests.  Every time it gets a bit easier as I find less and less of Ty’s things. It’s natural for a home to transition from baby toys, to big kid toys, to teenager “stuff.”  But when the traces of a life lost slowly disappear from existence, it is painful on a level that I can’t put into words. 

This year, I am giving away a silly toy where you blow into a pipe and try to balance a little foam ball as it floats above.  Aunt Debi bought it for Ty while he was in the hospital.  It was great for his therapy, but he never quite recovered the strength to get the ball in the air.  It was time to let it go.  I was consumed with guilt as I watched my hand open and the object drop into a garbage bag.  It feels as if I’m throwing away another memory, but at the same time I know I can’t keep everything (unless we're talking about a decomposing cake - that I can keep forever). 

This year, Spring Cleaning had new meaning.  Lou and I are expecting a new baby in October, so we had to consider keeping some of the items that would have otherwise been disposed of.  It was so strange to imagine we should hold onto those car seats, and the toy kitchen.  Surreal, really.  I know, many of you are probably shocked reading this.  I never really talked about having another baby… I think because I never truly believed it would happen for us, and it made me feel vulnerable.   

Cancer didn’t just rob Ty of his childhood (and his adulthood, and everything in between).  It robbed our entire family of what we were supposed to be.  I wanted to have at least one more baby after Gavin.  A girl (of course) and the three of them would grow up being the best of friends.  When Ty was sick I often cried to Lou about how cancer was threatening us with Ty’s life, and also stealing our opportunity to add a new life to our family.  We needed to be 100% there for our son, and a baby was an impossible thought. 

After we lost him, my thoughts about getting pregnant were so terribly inconsistent.  On one hand, I shuddered at the thought – as if a new baby would be a futile effort to replace the irreplaceable.  On the other hand – I was in a panic because so much time had passed, I was so much older than I wanted to be if I was going to get pregnant, and my ovaries were shouting “tick-tock” when I tried to sleep at night.  I worried that if something happened to me and Lou, Gavin would be alone in life. 

A couple of years ago, Lou and I agreed that maybe a baby would be a good idea.  Maybe it would bring some light and happiness back into our home.  We tried to get pregnant, but it didn’t happen.  I was shocked and angry because I never had any trouble getting pregnant before.  Why?  Why when I’m already in so much pain do I have to suffer another monthly reminder of how terribly wrong my life turned out. 

I spoke to a doctor about the trouble we were having and he had lots of suggestions.  None of which felt right.  Lou and I decided that after all we’ve been through, we didn’t want to take any measures to make it happen.  If it was meant to be, it was meant to be.  And when I turned 40 in October, I truly started to accept that it wasn’t.  In January my best friend treated me to a girl’s weekend in Puerto Rico where I shared my acceptance of this fact, and she insisted – poolside with a cocktail in hand – that I would get pregnant.  That I was being ridiculous for talking like that and together we laughed and decided that if I did have a baby it would be a little girl (obviously) and I would name her Faith.

Turns out, when you give up on getting pregnant, accept your life as it is, and start planning for a different future, that’s when life likes to get interesting again. I got pregnant soon after that trip and I am going to have a baby in October.  Just when I got truly comfortable with the fact that Gavin can take his own showers, wipe his own butt (sometimes), fold clothes (sort-of) and clean his room.

Sorry we didn’t tell anyone sooner.  But I’m 40, and the statistics on things going wrong at this “advanced maternal age” are frightening.  After all we’ve been through, I needed to get the results from multiple screening tests and blood work before I was convinced everything is going to be okay.  The benefit of all this advance screening for old ladies like me is that we also get to find out the sex of the baby early-on and guess what?.... it’s a boy.  I’ll share my thoughts on that in a few days because I need time to spill the mix of emotions I have over that fact. 

This morning I caught the early train.  I stopped by the bakery just as they were opening for a coffee and a warm, sticky, fruit and cheese Danish.  I got settled on the last car, opened the bag, and just as I was getting it on with that delicious morsel, I felt him move. 

It’s real.  This finally feels like it’s really happening!  And I guess he loves a warm danish as much as I do! 

Just like that, I traded in my vision of pigtails and sundresses for my new morning date at the bakery.  He will hold my hand and point his little chubby fingers to his favorite cookies behind the glass, and I will buy him anything and everything he wants :)

Saturday, April 16, 2016

Disregard the Cake

When we moved into our house, there was an old refrigerator in the basement.  They don’t make ‘em like they used to, because this thing looks like it’s 100 years old and it still works without any problems.  It's on the same floor where we walk out into the backyard, so naturally it became the “beer fridge.”

On Ty’s last birthday with us, so many people did so many incredible things to make him smile.  In fact, we enjoyed “SuperTy” cupcakes from a local baker, a 3-tiered SuperHero cake with all of his beloved characters, and his favorite of all… a Max and Ruby Cake with a carnival theme.  It was one of his favorite episodes, and he often talked about going to the carnival.  In fact, he was laid to rest with his favorite Max and Ruby DVD and carnival tickets in his hand.  

He died 13 days after we helped him blow out those candles.  It’s still impossible to believe.  No matter how quickly life goes on, how often I find myself smiling again, and how much I have accepted that he is never coming back, the unbearable weight of his absence will ALWAYS remain.

So if you find yourself enjoying a laugh amongst friends in my backyard and someone sends you to the beer fridge for another round, please disregard the birthday cake on the top shelf.  Although the fondant Max and Ruby haven’t aged a bit… 3 and a half years have taken quite a toll on the rest of the cake that was once vanilla (I think) with cannoli filling.  I can’t recall because only one slice is taken from it.  I imagine we didn’t have much of an appetite those days. 

It’s totally weird.  I know this.  In fact, sometimes I laugh at the cake whenever I am caught off-guard by its presence.  But for some reason, I leave it.  Lou leaves it.  We rarely talk about it… the cake simply remains where we last placed it on October 4, 2012.   Ty’s fifth and last birthday. 

I was prompted to write about this today because when I was rushing off to work I noticed Gavin’s leftover mac and cheese in the backseat of my car.  Ugh.  Since it was 30 degrees all night and my car was covered in frost (unbelievable), I figured I should quickly throw it in the fridge.  In my haste to catch the train I opted for the beer fridge.  The cake, of course, caught my eye.

On my way back to the car I thought to myself… “It’s time, isn’t it?  I should just do it.  Pick it up, walk it to the garbage can, drop it in and don’t look back.” 

But to tell you the truth, even though I’m ready and I think I could do it without crying, I kinda like having that rotten old cake around.  At this point, it’s even comical to me.  What an adorable metaphor for how broken we are, and how time…. in the most biological sense… certainly does NOT heal when you think about it.

I cast my vote for one more summer of yelling “disregard the cake” as others unexpectedly find themselves staring at the decomposing leftovers in the beer fridge.  And if you try to make me feel better by explaining how time heals, I might ask, “Have you seen my cake?  Because time certainly didn’t do any favors there.”


Thursday, March 31, 2016

When there's no such thing as too much TV. Why I love preschool programming.

In support of National Jump in #MuddyPuddlesDay, ScaryMommy.com published another blog post I wrote about Ty.  Please read and share on this very special day.


I was waiting for this day to announce some incredible news about our partnership with Peppa Pig! Peppa is a beloved animated character who loved to jump in muddy puddles as much as Ty, and she was one of his absolute favorites.  I believe Ty had everything to do with her finding us, and choosing to support the Muddy Puddles Project.  It's all just so incredible.

Please read and share the post below.  Let your kids jump in puddles today.  Post your photos with the hashtag #MuddyPuddlesDay.  I can't find the words to express how grateful I am for this day.

Friday, March 25, 2016

The Inappropriate Show

Gavin is growing up so fast.  I love to listen to his conversations with his little friends.  He is almost seven now, and the things that he talks about keeps me smiling all day. 

He is growing into such a fun little person, but this is no surprise.  Who he is, everything about my Gavin, has been evident since he was just a baby.  His big goofy grin, his preference to laugh and tell jokes over anything serious, and his extreme sensitivity that causes him to cry so easily, these tendencies have always been there.  There are so many things about the person he is that he will carry into the person he becomes.  So much of Lou and I whether we like it or not.  Like Nana says, “you don’t plant potatoes and get tomatoes.”

He is still a complete wacko and he has a sick little sense of humor.  In fact, let me tell you about “The Inappropriate Show” that he made up with his best friend.  When they get together, they make up grotesque episodes of their imaginary TV show that are highly… you guessed it… inappropriate.  They think they are absolutely hysterical. 

There are two main hosts of the show and in a recent episode one of them was going to have a birthday party, for example.  Of course, there will be a piñata… but in order to make sure it is appropriately inappropriate, the piñata was going to include plastic penises, and plastic vaginas.  “The penises will have a button on them so when you press it, pee comes out all over!”  Cue hysterical laughter from my backseat. 
“And the vaginas will have a button on them, so when you press it, a real live baby pops out of it!” Even more hysterics. 

Creative genius, folks.  What is wrong with this child?  He also decided on a career, by the way.  He is going to be a doctor when he grows up.  He decided on this career path only because I recently explained to him that he can’t come to an appointment with me because people have to get undressed for their physical exams. 

“Oh, I’m gonna be a doctor! Boobies and butts, baby.” he exclaimed.  He’s a sicko, this one.  And I love him to pieces. 

The other night when I was putting him to bed, we were talking about how much he missed having a big brother, and how great it would be if Ty was still here with us.  Gavin said, "if cancer was a person, I would give it BOTH my middle fingers... and my middle toes... so it could be four times as much!"  

I honestly don't know where he gets any of this... the middle finger, the vaginas, and so on... but I agreed with him on that one despite how inappropriate it may have been.