A letter to Tanner on his graduation

My Tanner,

It’s been awhile since I’ve written anything, but this week is really getting me. Every day is a reminder of what should’ve been.  Everything we do and everywhere we go, I am feeling your absence and looking for your face, and that sweet little smile.

It’s the last week of school here on Long Island.  I think Chase is already on a summer clock, as I’ve had to drag him out of bed at 8am every morning so he has enough time to get dressed, brush his teeth and eat some breakfast before the bus comes.  I wonder if he’ll sleep in next week or if he’ll be up at the crack of dawn looking for “something to do”? LOL.  Anyway, the last week of school brings so much excitement… and everywhere we look there are graduations, proms, moving up ceremonies…. and it is a harsh smack-in-the-face reminder that you’re not here.  This was supposed to be your year!  I see pictures of your 5th grade class – they put on an amazing play.  They had a great time on their boat trip.  They were all smiles at field day.  I look through the pictures on social media and I can’t help but search for your face.  These kids would’ve been your friends.  I picture you, a tall, lanky 10 year old 5th grader, smiling, mouth full of braces, arm around the shoulders of your buddies.  It’s so hard to imagine you this big, my tiny little 3 1/2 year old… you would be going into middle school.

I think of you at soccer.  I think of you at karate.  I think of you at drum lessons.  I think of you at golf.   Years ago, when you were in treatment, I used to imagine what I would write in your school yearbook…  I imagined writing how insanely proud I was of you, accomplishing so much in life just by surviving! Going through multiple brain surgeries and radiation and chemo at the age of 2 and 3… and now here you were graduating… I used to get a lump in my throat just thinking about it, and somehow, I still do…

I believe in my heart that you are growing and learning and playing in heaven.  I know you are around me my sweet angel, thank you for always sending me those signs.  I just want you to know that even though you are not here with me physically, I feel you.  I am sure you are learning so much in heaven, and if you are graduating there, I want you to know that I am so so proud of you.  Without a doubt you are the teacher’s pet, everyone’s best friend, and probably the class clown, always being silly to make people smile.

My sweet Tanner, what I would give to see you now.  I wish I didn’t have to imagine.  I wish every day that things were different.  But one thing has never changed – how very much I love you.

Congratulations to my class of 2018 elementary school graduate… Tanner Jayden Eichele.

Love Always,

Your proud Momma

Tanner’s pre-k graduation from The Morgan Center 2010

Sharing The Love

It’s Spring Break in New York, all the kids are home from school.  Chase is 7 now, (which of course means I have to mention that Tanner should be 9 1/2).  Chase is pretty good at keeping himself busy playing during the day while I work from home, but I am trying to come up with some fun ideas to do with him after work during the break.  Today we went to the playground, which he loves, especially when the ice cream man shows up (and he always shows up).  Then we decided to go see the movie ‘The Boss Baby’ in the evening.  Filled with sarcastic 7 year old potty humor, it was number one on Chase’s ‘to see’ list.

The Boss Baby is a story about how a new baby ‘impacts’ a family, as told through the eyes of the 7 year old big brother.  It was very funny.  It made us laugh out loud.  I didn’t expect for it to make me cry.  It came out of nowhere, I didn’t expect it at all… but that’s always how grief works.  You never know when it’s going to just wind up and sucker punch you in the gut…

I’m not looking to give away any plot twists here, but basically the ‘new baby’ is on a mission to make people want babies instead of puppies.  The big brother misses having his parents full attention.  They both agree to work together so that the baby can go back to the baby factory, and the 7 year old can go back to being an only child.  Of course they end up liking each other.  Using a baby bead toy, the baby describes how a new baby takes away all the parents ‘love’… when the baby goes back to the factory, the big brother sends him a box full of beads ‘re: love’, and says he would rather give all of his parents love to his new baby brother than not to have him at all.

*cue the waterworks*

When we left, Chase said “Mommy, that movie made me cry a little”.  I asked him which part he meant.  He said “when the big brother was laying in his bed, missing his  little brother, it made me think of when I go to sleep and think of how much I miss Tanner.”  I said to Chase: “Remember the part when he sent all the beads to the baby, and said that he loved his baby brother so much, he would be willing to give all the love to him?  That’s what Tanner did to you when he went to heaven.  He gave you all of his beads so you can have all our love”.  (How I said this without driving off the road I’m still not sure).  Chase understood what I was saying and seemed contented by it.  Me? I cried the rest of the drive home as quietly as I could with my sunglasses in place and Sam Hunt playing loudly on the radio.

You never know it’s going to happen.  I came home and posted on Facebook to my bereaved parent friends warning them about the wave of emotions that would hit them watching this movie.  Then I was overcome with emotions again by the number of bereaved parent friends I have.  There are far too many people that know this pain.

Be gentle with people.  The very thing that makes you laugh the hardest could be the thing that brings the saddest tears.  Not just parents, but 7 year old kids too.  As far as I’m concerned, Chase and Tanner still share their beads, even if Tanner did give them all to his baby brother… I just wish the beads were all on the same wire, and not torn between heaven and earth.

Love,

Tanner’s Momma

Tanner & Chase meet, March 2010, when Chase came home from the NICU.   The love between brothers has no boundaries.

P.S. – There is one week left to RSVP for The Lexiebean Foundation’s 7th annual Wish Upon A Star Gala.  Get your tickets to help us help families dealing with pediatric cancer today! http://www.lexiebeanfoundation.org

Making Lemonade

My Facebook news feed is filled with people talking about the new show “This Is Us”.  I am also a huge fan of the show, filled with lots of relatable family issues.  I love watching the connections unfold between random people on the show.  I’m a big believer in the idea of different people being brought into your life at different times for different reasons.  I don’t think we meet anyone on ‘accident’.  I believe that every interaction we have in life is on purpose, even if that purpose is only for a few moments.

The story unfolds (no spoilers, I promise) with the couple giving birth to triplets, and their beloved obstetrician cannot deliver the baby.  “Dr. K.” is the fill in obstetrician… and the show must share my beliefs, because clearly he is placed in that moment for a reason.  During the delivery of the triplets, they lose one baby.  This quote, from the show’s first episode, was replayed in last night’s episode, and it resonated so deeply with me:

“I like to think that one day you’ll be an old man like me talkin’ a young man’s ear off explanin’ to him how you took the sourest lemon that life has to offer and turned it into something resembling lemonade.  If you can do that, then maybe you will still be taking three babies home from this hospital, just maybe not the way you planned.”

I believe there are many sour lemons in life, but I think child loss is definitely the sourest.  Having a child is literally like wearing your heart outside your body.  You want to keep it safe and protected with every fiber of your being.  But no matter how many precautions you take, no matter how hard you try, no matter what ends of the earth you go to, you just can’t prevent the worst imaginable hell from becoming reality… that’s what it feels like to lose a child to cancer.  Like no matter what you do, or are willing to do, you just keep getting sucker punched, forced to eat the sourest lemon of life.

Tanner passed away April 25, 2011.  In July of 2011 I joined forces with The Lexiebean Foundation.  I was so appreciative of what they did to help us when Tanner was battling cancer, I wanted to give back.  I also wanted to do something to honor Tanner’s life, and didn’t feel it necessary to re-invent the wheel.  I knew that by joining forces with people like Joe & LeaAnn Falabella, who were clearly placed in MY life for a reason, we could make a greater difference.

It is through working with Lexiebean that I believe I am making lemonade.  I don’t have Tanner in my life the way I want him to be, but he is still in my life, and he has become a part of others lives through this work.  Every minute of time I spend helping other children, other parents, and other siblings dealing with pediatric cancer is time I spend on Tanner.  It’s time that means his life mattered, and still matters.  It’s time that makes me feel closer to him, and it’s time that makes me feel like he’s still with me. It’s my lemonade, and I need to do this work as much as this work needs to be done.

Thank you to everyone who supports us in this effort – I’m so grateful that you have been put in my life, for the reasons that we know and for the reasons we will maybe someday find out.

Go out and make some lemonade people.

Love Always,

Tanner’s Momma

This is a picture of Tanner, age 1 1/2, before his cancer diagnosis, after having his very first taste of a lemon. 🙂

 

 

 

 

 

 

 

 

P.S. – our annual Lexiebean Wish Upon A Star Gala is coming up Friday, April 28th 2017.  Save the date for our biggest fundraiser and come help us in our mission to ease the financial burdens families face while battling pediatric cancer.  If you are interested in sponsoring the event, placing an ad in our journal or purchasing tickets, please visit http://www.lexiebeanfoundation.org

 

Loneliness is Loud and Clear

I’ve noticed in the past year or so that Chase “pretends” quite often while he is playing.  He will be down in his playroom, playing with legos, or dressing up like Luke Skywalker, or even just coloring and I hear him talking to someone as if he has a playmate.  Now, I’m no stranger to the fact that children pretend, and often pretend out loud.  Although I have 4 sisters, they are all from different marriages and lived in different households, so I too grew up the only child in my house.  I too pretended out loud and talked to toys.  This play is different.  It is truly as if he has a friend playing with him.

Sometimes I ask Chase “who were you playing with? I heard you talking”.  He usually answers “Tanner”.  I truly believe that Tanner is around Chase all the time.  Chase dreams of him all the time.  But when he is “playing with Tanner” it sure is a stabbing reminder of how things should have been.  I always think back to the day of my sonogram with Chase, when we found out he was going to be a boy… I turned to Andrew and said “they are so lucky.  They are going to be best friends!”.  They were supposed to be, except cancer.  Cancer robbed Chase of his best friend, his playmate, his big brother.

Whenever Chase is presented with the opportunity to make a wish (a candle to blow out, a dandelion to blow, the first twinkling star appears in the sky…) he always wishes for Tanner to come back.  Whenever he gets a balloon, he releases it into the sky and tells Tanner to catch it.  When he eats a new food (which is rare lol) he asks if Tanner liked it.  When we went to Disney in February, he asked which rides were Tanner’s favorites and he made sure to ride them all.  Chase is so aware of the fact that his brother isn’t here and it makes my heart hurt even more, and I didn’t even know that was possible.  Not only does my heart break for me, but it shatters into a million pieces when my 6 year old lets me know how much he misses his big brother.  Chase wants only one thing, and as his Momma, I want to give him the world, but I can’t give him what he wants the most.

A few weeks ago, the sounds coming from Chase’s playroom were so different.  My dear friend’s son was over for a play date.  He is almost 8 years old and together he and Chase were laughing, and light saber fighting, and building with legos, and playing tag and making the noise that can only be made by two beautiful, healthy, happy boys playing.  I sat in my kitchen, with my cup of coffee and tears in my eyes and I couldn’t help but think “this is how it was supposed to sound all the time”.  I soaked in those sounds and they are permanently recorded in my head.  I have played them back over and over and wished and cried.  The sounds that should’ve been…

I will always, always think of what should’ve been.  No matter how present I try to be, that feeling of someone being missing will always be a part of me and my every thought.

As a bereaved parent, one of my constant worries is how much my feelings affect Chase.  I worry that he can read my pain and I never want him to feel that he isn’t ‘enough’.  Chase is my world, and I often call him my anchor because he keeps me present and grounded.  That’s a lot of responsibility for a kindergartner.  But when he turns around and tells me that he wants to donate his toys and clothes to kids with cancer like Tanner, or that he wants to run a 5K with me to raise money for kids like Tanner, or when he told me that he informed his teacher that the color for pediatric cancer awareness is GOLD when they were wearing red… I realize that we must be doing something right.  Somehow talking about Tanner everyday has also helped make Chase a caring and compassionate child, and who could ask for more than that?  Although I wish I could change a few things,  I would never change being their Momma.

Love Always,

Tanner & Chase’s Momma

March 2010, Chase comes home from the NICU and brothers are born.

P.S. Next Friday, April 15th is the 6th annual Lexiebean Foundation Wish Upon A Star Gala.  This is the foundation’s biggest fundraiser and we are celebrating what should have been Lexie’s 16th birthday.  Although our hearts are broken and it is so difficult to celebrate what “should’ve been”, helping other children and families dealing with pediatric cancer is what gives us strength and comfort.  Please help us by purchasing a ticket or making a donation http://www.lexiebeanfoundation.org

 

 

Learning Curve

Chase is almost 6 years old.  He started Kindergarten this year, and the things he has learned and can do never never cease to amaze me.  This is uncharted territory for me, all this “school” stuff… Tanner should be in 3rd grade, and I should be a pro by now… it’s really strange when your youngest outlives your oldest.  I’m learning just as much as Chase.  Common core math? Don’t even get me started.  And this is only Kindergarten!

But the important stuff isn’t always taught in school.  The hard stuff.  The life stuff.  The ‘stuff you tell your 5 year old when he asks questions about heaven’ stuff. There’s no right answer, and it is always difficult to find a solution.  (Kind of sounds like common core math, lol).

The night before Tanner’s 8th birthday, I told Chase we would get balloons to send up to Tanner.  He liked that idea, and also requested a birthday cake.  As difficult as that is for me, to sing happy birthday to Tanner when he isn’t here, I feel it is most important to follow Chase’s lead.  He needs to celebrate his brother the way he sees fit, the way he can understand it.  He knows that a birthday warrants a cake.  So, there was cake.  Then he caught me off guard when he asked “so what kind of present did we get Tanner”.  Busted.  I told him I hadn’t gotten him a gift.  He said “Tanner will be very sad if he doesn’t get a present on his birthday!”.  So, the next day, off to Target I went.  When Chase came home from school I showed him this big blue wubble ball that we ‘got for Tanner’.  He loved it and said “Ok! so how are we going to get it to him?”.  *reminder to self – breathe*

After explaining why we can’t send things to heaven, Chase was content with playing with the wubble for Tanner, and then putting it in Tanner’s room.  I survived another birthday that I wish I hadn’t.

5 year olds don’t always tell you what they are thinking.  Most of the time I have no idea what Chase is thinking, or how he comprehends difficult information.  He talks about Tanner, he talks about heaven.  I’ve heard him tell his friends that his brother lives in heaven, that he had cancer.  I’m starting to think he understands…

Last week I sliced my thumb on a mandolin while cutting carrots.  *note, not having use of my thumb for the past week is a real pain in the a**.  Anyway, the night it happened, I was telling Andrew about how much it hurt and how I probably could’ve used a stitch or two.  Chase heard this and jumped up and yelled “NO!! YOU CAN’T GET STITCHES! I LOVE MY MOMMY!! NO STITCHES!!” Andrew looked at me with the same confused look I had on my face.  I thought about it for a minute.  I had heard Chase telling his friends that his brother had stitches in his head (you can see them in many pictures of Tanner).  I asked Chase “Chase, do you think if Mommy gets stitches that means I will go to heaven too?”.  He shook his head yes.  My heart dropped.

It kills me that my 5 year old worries about losing his Momma or anyone else he loves.  These aren’t 5 year old worries.  I didn’t know from loss as a child, and didn’t lose anyone close to me until I was nearly an adult. Chase misses his brother every day and tells me all the time he wishes Tanner was here.  Knowing that he worries about losing one of his parents breaks my heart, and I wish I could know everything he thinks about so I could help him understand.  Understand that stitches do not equal death, understand that we can’t send presents up to heaven, understand that Tanner can’t come back, as much as we wish for him to…

This never gets easier, the pain never lessens, and every day without my beautiful son is as painful as the day he left us.  But watching Chase struggle with it absolutely brings me to my knees.  No one should have to teach their 5 year old about death…

It’s a learning curve for both of us.

Love,

Tanner’s Momma

the stitches in Tanner’s perfect little head, October 2009.

What Should’ve Been…

Today as I took Chase by the hand to his Kindergarten orientation, as I scrolled through my facebook newsfeed looking at hundreds of smiling faces in freshly pressed outfits with new haircuts and new backpacks… I couldn’t help but think about “what should’ve been”.

Today was bittersweet.  Chase is starting Kindergarten at his elementary school.  Although he has been going to Pre-k for 2 years now, going to “big boy school” has been much anticipated in our house by both Chase and Momma & Daddy.  This is all new to us.  New building, new teachers, new lessons… but it shouldn’t be new at all.  In a perfect world where pediatric cancer doesn’t exist, this would be old hat to us… we would be walking halls we already knew, greeting teachers we already knew.

Tanner should have started _3rd grade_ today.  Hard to believe it, but yes, 3rd.  He would be 7 turning 8 this November, and I can’t keep my mind from wandering to how today should’ve been…

I imagine Tanner would have been the protective older brother.  Even when he was only 3 1/2 he was a better listener than Chase ever was.  I’d like to think Tanner would walk Chase into the school and introduce him to his Kindergarten teacher and show him his desk… a desk that he should’ve once sat at but never got the chance to.  I wonder what kind of backpack Tanner would’ve picked out.  I’m sure by the age of 7 he would have outgrown his Thomas the Train obsession – maybe he too would be into Star Wars like Chase is, or maybe he would be such a big kid this year he would have gone for the cool big kid Nike backpack.  He probably would have worn a baseball hat, Yankees of course, and maybe he would have picked out a nice golf shirt, in his favorite shade of blue.  I wonder if he would make me smile by putting all the marker caps from his brand new school supplies on the tips of his fingers like he used to in preschool, or if he would want beefaroni and hot dogs for lunch much to my dismay.

The one thing I know for sure is that Tanner wouldn’t have “embarrassed” easily.  Chase likes to peek around to see who’s looking before giving Momma a kiss… Tanner, my loving little snuggle bug, would certainly kiss his Momma goodbye in front of his friends.  I might even get an “I love you…soooooo much”.  Oh how I wish I could hear those words just one more time… and how I wish I could say them back to him.

Back to school time, as I’ve mentioned before is probably one of the most painful times every year for a bereaved parent.  Missing out on milestones that your child should have accomplished is a sharp, brutal, stabbing reminder of “what should’ve been”.  So many of my friends have mentioned that they are remembering my Tanner during this time, and it means so much to me.  My little 3 1/2 year old would be 7, and after missing him with excruciating pain for 4 1/2 years every single day, knowing that other people think of him means everything.  It is our greatest fear, as a bereaved parent, that our child will be forgotten.  You don’t make us sad, for bringing up their name.  You didn’t “remind” me that he isn’t here… trust me, I am aware of that fact every second of every day.  By mentioning their name, you are telling me you care.  You think of him.  You remember.  That makes me smile, even if I do have tears in my eyes.

So while I will probably be full of tears tomorrow morning, getting my baby on the bus for Kindergarten… full of pride at how my 30 week, 3 pound preemie has taken his first step onto the bus to “big boy school”, I will also be full of tears for “what should’ve been”… and I will have Tanner on my mind and in my heart, as I always do.

Tanner, if there’s school up in heaven, I hope you have a great first day of 3rd grade.  I hope you have a wonderful teacher and I hope you have a great new pair of sneakers and a cool new backpack.  I hope you’re friends are in your class – please say hi to Jack, Jessica, Ty, Lexie, Nicky, Tati, Nicholas, Julianna, Colin & Peter from me, and give them high fives in the hallway.   I hope you have your favorite lunch and I hope that you know – if you miss me, even for a second, I am thinking of you and sending my love right at that very moment.  I love you to the moon and back my Tanner, forever and thereafter.                Love,  Momma

Please remember all the children who won’t be returning to school this September, and remember to Go GOLD for Pediatric Cancer Awareness Month.  Wishing every child a safe, happy, healthy and productive school year…

Love,
Tanner’s Momma

P.S. – Hey Tanner, by the way, I saw the white feather floating around the auditorium at orientation today.  Thanks for that one buddy…

Tanner, going to The Morgan Center, a preschool for kids with cancer, fall 2010.

You Can Take the Mom Out of Oncology…

…but you can’t take the oncology out of the mom.

According to the Severe Weather Laboratory, lightning can strike the same place twice.  They say that it could be a statistical fluke, but it could also be something about that site that makes it more likely to be struck.  Any mom-cologist would agree, our biggest fear (aside from death) is lightning (cancer) striking twice.

The fear doesn’t end when cancer ends.  Whether your child dies from cancer, or is a cancer survivor, you spend the rest of your motherly life worrying that your child will relapse, or that another one of your children will get cancer as well.  When Tanner passed away, I had the doctors give Chase 2 CAT scans at the age of 18 months because he spit up.  He had reflux.  But what if it was a brain tumor?  That’s what goes on in the mind of a mom-cologist.

Yesterday morning, Chase woke up with a fever.  He had been coughing for a few days, and we were giving him his inhalers and really staying on top of his asthma, which can also be very scary.  I took him to an urgi-care center in the morning, I figured he had an ear infection, which is not uncommon for Chase.  The urgi-care doc looks in Chase’s ear and says: “I don’t see an infection, but he has a large growth in here that is occluding 60% of his middle ear”.

*cue Momma’s rapid heart beat, light-headed feeling, and sinking pit in stomach* …He said “GROWTH”.

Chase had tubes put in his ears over a year ago.  I knew from the last ENT visit that he had a small pinhead spot over the non-functioning tube, but it was “pin-head”!  60% of his ear?? The doctor had me look into the otoscope.  It was huge! With tears welling up in my eyes, I explained to the doc about Tanner, about losing him at 3 1/2 to a brain tumor.  As the doc started talking to me about putting Chase on steroids for his cough, I saw hell flash before my eyes.  Chemo, radiation, surgery…. and OH MY GOD I cannot lose my baby, please he’s all I have left.  I think I’m going to throw up.  I need to call the ENT now, he needs to see this.  He saw him last month.  He’s going to tell me Chase has cancer.  I think I’m going to pass out.

I told Chase not to worry, and apologize to him because I don’t mean to scare him, and I see his little face when I talk about Tanner, and he sees the tears in my eyes.  I said “Chase, sometimes when Momma talks about Tanner, I cry, but it’s ok, you don’t have to be scared.” Chase says “it’s OK Momma, I’m not scared.  I know you were crying because you don’t want me to go to heaven like Tanner.  But sometimes I want to go there, so I can play with him.” These are the kind of conversations I have with my 5 year old at 9:30 am on a Tuesday.  I should’ve poured vodka on my cheerios this morning.

I get in the car and start driving to the ENT, calling the office to let them know I’m on the way, it’s an emergency, and Chase needs to be seen.  Thank God my ENT is so wonderful.  He saw the look on my face.  He looked in Chase’s ear and tells me the urgi-care doc used an otoscope with a magnifier.  Chase’s ear is perfectly fine, he has an ear infection.

It’s just a plain-old, run-of-the-mill, average kid, normal day ear infection.

*exhale*

It’s a terrible thing,  a terrible feeling, to think like this.  To worry that every common cold, every sneeze, every hiccup, every belly-ache, is cancer.  We mom-cologists, we can’t help it.  It’s ingrained in our being.  My first pediatrician sent Tanner home with a diagnosis of “sinus infection”.  That sinus infection was a brain tumor.  I will spend the rest of my life worrying.  They say that when you become a mom, you live your life as if your heart is on the outside.

When you become a Mom-cologist, I believe the beauty of motherhood is magnified.  The beauty of motherhood is there, with all the love and protective emotions… but you also learn just how fragile life can be, and every ounce of that love and protective instinct is heightened.  Sometimes, it is heightened to the point of fear, and anxiety.

So today I raise my proverbial bowl of cheerios to two friends who talked me off the ledge yesterday while I waited to see the doctor.  Thank you Jenine & Nicole, for telling me I was crazy and reminding me to breath.  I am also sending hugs to all my fellow mom-cologists, because they also know that sinking feeling of anxiety.  I wouldn’t wish that feeling on anyone.

And… to my dear sweet Chase, please don’t get sick, not even a cold, ever again.  Momma’s nerves are shot.

I know, wishful thinking….

Love Always,
Tanner & Chase’s Momma

my heart outside my body

A Surprise Christmas Message from Tanner…

So, last night we saw Theresa Caputo, the LI Medium.  We have seen her before, always in group settings, and she is amazing.  If you’ve ever seen her show, you know she has the funniest personality.  We weren’t planning on going to this event, but like I’ve said before sometimes things just happen for a reason and you have to go with it.  Let me start at the beginning…

Tuesday 12/16, I am on my way to work and while sitting on the train I checked my phone.  I happened to look at my TimeHop that day (if you don’t know what time hop is, it is an app that shows you posts you made and pictures you posted on social media from years ago). My timehop was a facebook post that said (5 years ago): “tonight Tanner rolled over in his sleep and sighed ‘momma’.  Melted my heart”.  After reading that Tuesday morning, I was thinking about all the times he would turn over and I would rub his sweet face/head with my hand and he did the same to me.  Very very occasionally, Chase puts his little hand on my face while we snuggle… Tanner did it all the time.  I actually have a picture of him rubbing my face right after he woke up from his 3rd brain surgery after his relapse… it was his way of showing affection.  I miss that little hand on my face so much.

Later that day, I received a text from Miss Nancy, Tanner’s teacher from The Morgan Center.  We had gone to the Morgan Center Christmas party the weekend before, and taken this amazing group photo, all the kids who have survived cancer or are going through treatment currently, and all of their siblings.  It was an amazing picture.  She was going to post it on facebook and she wanted us to know that there were distinct orbs in the picture… mediums say that orbs are spirit showing themselves in picture.  The photo, taken by a professional photographer, shows clearly the orbs… without a doubt we said Tanner, Jack and Jessica, along with Miss Nancy’s father, were obviously with us that day.  Being that we had seen Theresa together over a year ago, Miss Nancy posted under the pic “Melissa, I wonder what Theresa would have to say about that!”.  Then, my  phone vibrated with a message.

It was my best friend Vikki’s mom.  She is friends with Theresa’s mom from church, and she had 2 extra tickets for Theresa’s event Thursday night.  We have seen Theresa a few times, and weren’t looking to go to this event, but sometimes, when things are presented to you like that and tickets just “fall into your lap”, you have to think, “well, I guess I better go!”.

Andrew and I figured with 2000 people in the audience at Westbury NYCB theatre, we weren’t going to get read, but then Theresa said “where’s the little boy with the brain tumor”.  Of course he was going to come through… he always does! It’s always hard for me to write out a reading, but I’ll do my best… here’s what she said:

She started with his passing – she said he told her I held him for his first breath and his last breath, which is true.  She then said he’s talking about you rubbing his head (there it is! my timehop post about me rubbing his face and him rubbing mine – which was on my mind all week!).  Then she brought up his teeth… Tanner’s teeth come up often for us in readings – a month before he passed he had all of his teeth except 2 pulled out because they had rotted from the chemo he was taking.  At the time it was a sore spot for me, as I knew his prognosis was bad, it bothered me that he would go to heaven with no teeth.  She told me that he has a full set of beautiful teeth and he wants to make sure I know that.  She also asked me about his baby blanket, and said “he has it with him, but you also have a piece?”.  Tanner is buried with his baby blanket, but I have his other favorite one with me.  Then she asked about his hair, which I have a piece of.  Then she asked about his hat, and the fact that someone else is wearing it.  Chase has been wearing Tanner’s Patriots hat every day.  I actually have been trying to get him to wear a different hat, because I’m always nervous he will lose it, but he insists on wearing it.  She said Tanner is acknowledging that Chase wears his hat.  She asked if we still had the outfit he passed away in, which was a pair of pj’s, and of course I do.  She asked if I still smell him sometimes… I actually have recently gone into Tanner’s room and smelled the pj’s, just to see if I can smell him again, missing him so much.  Then she asked where the handprint is on the sheet.  Tanner told her that his handprints are everywhere on some sheet.  I told her that we work for the Lexiebean Foundation, to help children with cancer in his memory, and his symbol is “Tanner’s high fives”.  She asked if we had done a sporting event in his name – then I realized this morning, the Lexiebean 5K, which we had “Tanner’s kids fun run”, and every t-shirt we handed out had a blue handprint with “Team Tanner” on the sleeve… sheets of handprints.  So awesome.  Then, she asked if we had recently gone back and visited with ‘nurses’.  I told her we recently visited with his teachers… she said yes, she saw them as nurses but they were his caregivers – and there was an event and everyone was talking about him and talking about how he was there that day.  So, there it was, validation that those orbs at the Morgan Center party were in fact Tanner, Jack & Jessica.

The Morgan Center Christmas Party, 2014

She ended with telling us that he wants us to know he has grown… (my little 3 1/2 year old would be 7 now!), that he is running all over the place, and that he is excited because he is riding a bicycle (of course he is, Chase has been riding his bike up and down the block every day!).  She said he ran over and jumped on me and said “even though his life was short, he wants to thank you for giving him the best life ever.  He never knew he was sick and he said you gave him a wonderful life”.

Oh Tanner, you gave me the best life ever when I got to be your momma.  My heart is forever broken, but the little unexpected messages like this are what gets me through.  The things that Theresa said were things that were fresh in my head this week – the party, the face/head rub, Chase wearing Tanner’s hat… things that I think about daily and wonder and worry and grieve… Theresa showed me tonight, once again, that Tanner is there with me while I think about all of those things… and he wanted to remind me of that right before Christmas, when I start missing him even more (if that’s even possible).

Theresa Caputo has a gift and I am so very glad she shares it.  There is so much peace in hearing from Tanner, in validating that he is with me.  I think about him and miss him all day every day, and until we meet again, that will never ever change… Knowing that he is healthy and happy and running and riding a bike, that makes the hole in my heart just a little more bearable.

Wishing everyone a peaceful holiday season, and a happy healthy new year.  Special love and hugs to my fellow bereaved parents this holiday season… let my reading from Theresa show you that just as Tanner is with me, your children are with you.  Not the way they should be, but they are there.

With Love,

Tanner’s Momma

Tanner rubbing momma’s face, July 2010

Time

I have been putting off writing for a long time now.  I thought about writing at back to school time, with all the joys of watching Chase go off to school, and all the pain of looking at first day pictures knowing that I should have had two beautiful boys in my pictures too… thinking of how I should have been getting Tanner off to 2nd Grade.  2nd Grade, can you imagine?

I thought about writing at Halloween time, when I was enjoying watching Chase going door to door in his Luke Skywalker costume, really into trick-or-treating this year and dressing up… while simultaneously being pained by the thoughts of what Tanner might have chosen to be, how 3 Halloweens just wasn’t enough, how climbing the steps of one or two houses was exhausting for him on his final Halloween, a tiny 2 1/2 year old Batman.

I thought about writing when Chase got his yellow belt in Kempo Martial Arts, as I was conflicted with pride and pain knowing that Tanner would surely be excelling at some sport by now, likely golf since he loved it so much.

I thought about writing for Pediatric Cancer Awareness Month in September.  I wanted to write about how infuriating it was to watch as the Empire State Building refused to go gold to show support for our kids, how the pediatric cancer community was in an uproar, how it felt to have our petitions turned down for no real reason.  Awareness leads to funding which leads to cures, and aren’t our children worth a few gold lightbulbs ESB??

I thought about writing but I never did… and then, time got away from me.

As I have mentioned before running is my outlet.  Running is my “me-time” to decompress and think about everything, pounding it all out on the pavement.  I run for as long as I need to feel emotionally and physically drained, which is ironic since my emotions often seem to hurt in such a physical way anyway.  A broken heart really does hurt.  Every single day I am reminded that Tanner is no longer with us, his absence seems to scream right out of my chest every day.  3 1/2 years later, it still hurts like it did on the first day.  What makes it even more difficult is that the joys I experience are often so overshadowed by the pain of his absence, they too become painful.  The happiest moments are always reminders of who is missing.  As I run, I think of all of these things until I can’t run and can’t think anymore.

It is true that you learn to cope with the pain better as time goes on.  It doesn’t lessen, but you figure out ways to deal with it better.  You can stifle it down when you see other kids on Halloween – big brothers taking their little brothers by the hand, showing them the ropes.  You learn how to calm yourself and keep from crying when you see other 6-year-olds and wonder if your son would share their interests.  You stay calm and respond with the best answer you can come up with at the moment when your 4 year old asks yet again if we can go visit Tanner in heaven for a play date because he misses his big brother…

This past September marked an important amount of time.  The exact amount of time that Tanner was physically here with us, is the same as the amount of time we have lived without him.  My heart has physically hurt for 3 1/2 years and the pain feels as fresh as it did the day he died.  This was something I thought about often during my runs over the last few months.  Time is something I have always been good at managing.  I am a very organized, type-A person.  Anyone who knows me well knows that I am very rarely late (and usually early).  I keep several calendars with all the events and important dates we have.  But somehow, although I knew it was coming, these past 3 1/2 years have crept up on me and gone, and taken my breath away in the process.  I wanted to write about it, but I didn’t even know what to say.

This quote pretty much says it for me:

Time is free, but it’s priceless.  You can’t own it, but you can use it.  You can’t keep it, but you can spend it.  Once you’ve lost it, you can never get it back.

Where has the time gone Tanner?  I still miss you.

My advice? Enjoy the time you spend with the people who are most important to you.  Time spent with those we love is never wasted, because you never know how much time you have left.

Love Always,

Tanner’s Momma

I Carry Your Heart With Me

Last week, The Lexiebean Foundation went to Sunrise Day camp, a camp specifically for children with cancer and their siblings on Long Island, to host our annual pizza party and give out nearly 400 goody bags for the kids.  We do this every year, and every year I go with mixed emotions.

That morning, after getting Chase on the bus to his own camp (he doesn’t attend Sunrise because Tanner, who was too young during his treatment, didn’t attend), I went for a run.  Running has become my therapy.  It is my time to be in my own head, to think about anything and everything, and to exhaust myself mentally and physically.  After my run, I feel I have gained a sense of clarity.  “Runner’s high” really exists.  During my run that morning, I set out and started to think about going to Sunrise.  I was filled with anxiety, I am going to a camp with close to 400 kids, many of whom have or had cancer.  I know a good handful of them, mostly through helping them with Lexiebean, but many on a more personal level.  There are a group of kids there who went through treatment with Tanner.  They were in the hospital at the same time, they were in clinic together, they went to the Morgan Center (a very special preschool for kids with cancer) together.  Out of our close-knit group of kids, there are three whose absence would be felt.  My Tanner, Jack and Jessica.  These three children, who were together so often, all lost their battle with cancer within one year.  Jack in September, Jessica in March, and Tanner in April.  They should all be at Sunrise with all their friends.

I worried that when I saw their friends, it would hurt.  Please understand this:  the children who went through treatment with Tanner, who battled cancer and fought for their lives – I was and continue to be rooting for them.  I rejoice in their accomplishments.  I am thrilled to hear when they are another year “cancer free”.  I love seeing them, their bald heads now covered with hair, color back in their cheeks, eyes sparkling rather than sunken as they once were.  We were a cancer family with these other children, in this together forever with their parents, and seeing these children thriving brings me so much joy.  That being said, it is also a reminder of the fact that Tanner isn’t there.  Why couldn’t Tanner be one of them, thriving and playing and growing… a survivor.  I look at them with joy and pain at the same time.  Two emotions, both felt so deeply, completely simultaneously.

I worried about these feelings as I ran.  Then, and I’m not sure I can explain this in words, I felt excited.  I felt excited like a small child on Christmas morning.  It was felt inside me, in my heart.  A very strong feeling of “I’m going to see my friends!!!”.  I can only make you understand how this felt by saying I know where the sensation came from.  You can call me crazy, you can say I imagined it, but I was there, and it happened.  Tanner made me feel excited.  He was with me, and although I say that, and I know that, sometimes I forget it.  Tanner was with me, and to calm my fears and anxiety, he made me feel as he felt about going to Sunrise that day – excited to see his friends.

I know people are skeptical about things like this and may not believe, but I know how I felt at that moment, and with all the anxiety I had right before, it is the only explanation.  I continued my run, and began thinking of other things – tasks that needed to get done around the house, and other nonsense.  As I rounded the last mile of my run, my mind drifted back to Tanner and to the day at Sunrise.  At that very moment, the song “Count On Me” by Bruno Mars came on my iPhone.  I don’t believe in coincidence.  Just as I started to worry about seeing Tanner’s friends again, the song, which is played every year at our Lexiebean Gala, specifically for our group of mom-cologists who all get up and dance, sing and cry in one big, love filled, supportive circle, came through my headphones.  Another sign, without a doubt in my mind, that Tanner was telling me – it’s going to be ok momma, these kids are my friends, and those moms, they are always there for you.

And you know what?  He was right.  When I got to Sunrise that day, seeing those kids, especially Tanner’s friends, gave me joy.  The most special of moments that day (for me, personally) was when Tanner’s friends, survivor Anais, and Matthew (sweet Jessica’s little brother), came up to me saying “Tanner’s Mom!” and hugged me.  Just the hug I needed, and the reassurance that even at such a young age, and while suffering a horrendous time in their own young lives, they will always remember their friend.  I can only believe Tanner was just as excited to see them and was joining us on those hugs.

To my fellow mom-cologists, my friends, my support group – the ones who understand me the most – I just hope you all know forever how very much you mean to me.  To the kids who should have been there last week, especially Lexie, Nick, Jack, Jessica, Tati, Ty, and my Tanner, you will be remembered by so many, in everything we do.

There is a quote by EE Cummings – “I carry your heart with me (I carry it in my heart) I am never without it (anywhere I go you go, my dear…).  I believe all bereaved parents carry their child’s heart with them, but my special angel Tanner, he made me feel his, and although sometimes my hearts feels as if it is shattered, that day at Sunrise, it was so full of love, it could have burst.

Love Always,

Tanner’s Momma

dancing with my mom-cologists to “Count On Me”, our song. Lexiebean Foundation Gala, 2014