Wednesday, January 22, 2014

I am many moms

When my first son was born, I was a quintessential “new mom.”  God gave us this incredible gift.  He entrusted me to take care of this most beautiful baby?!?!  The weight of that responsibility was tremendous.  I wanted to be perfect for him because I never loved anything like that before in my life.


I bought every ridiculous and completely unnecessary gadget available.  I actually liked going to Babies R Us and browsing this unknown territory of all things soft and fuzzy (or Buy Buy Baby, even better).  Did I really think that the PeePee TeePees I purchased for $11 were going to spare me from getting pee’ed on once in a while?  I pored over every single thing that went in his mouth, and I beamed with pride over how he just loved his peas and carrots, I must be doing something right! (I didn’t realize that pretty much all babies eat their vegetables when they’re only six months old).  Every tiny little thing Ty did prompted a phone call to my mom, and my husband, and whoever else wanted to hear about the amazing milestone reached like when I was sure he gave me an intentional “thumbs up” at six weeks, or when I could swear he said “boob” when he was hungry almost one year before we actually documented his first word.  He was a genius!

notice the book is upside-down
When Gavin was born, I became the “second-time” mom, which is totally different than the “new mom.”  New mom would never let her infant cry without running to see what was wrong.  Scooping him up.  Making everything alright.  The second-time mom has another toddler or little kid to tend to, and they make themselves much more known than they ever did as an infant.  If Ty wanted my attention, he might throw his tractor at the television, or find a way to escape from the house.  Second-time mom knows that the baby can cry, it won’t scar him for life, but if I leave that toddler alone for another minute he might just put a fork in the microwave.  Second-time mom also lets her youngest do things at a drastically earlier age than she ever would have allowed her first child.  Lollipops are a great example.  I never, ever gave Ty lollipops when he was a baby.  I feared for his teeth!  But by the time he was three, it happened sometimes.  Lollipops are everywhere and I had never even realized it!  So that meant Gavin was getting a lollipop, too – at 18 months – because you try prying that thing from his Viking grip when he comes across his brother’s leftovers.


I was a “stay at home” mom on extended maternity leave with Ty, then a “working mom,” then a “stay at home” mom again until Gavin was four months old.  Both moms deserve all the credit in the world and have no good reason to be in competition with one another.  Because it is hard work either way you look at it.  And both roles are rewarding in their own right.  When I was home all day, there were times I wanted to scratch my eyes out when I looked around the house to find nothing but messes with seemingly endless screaming crying in the background. I yearned to take a ½ hour shower, wear heels, and grab coffee with the girls at work.  Then there were times at work I wanted to scratch my eyes out when I was on my laptop at 1 in the morning, trying to make deadline after an especially difficult night with the babies.  I will say that my house was always cleaner as a working mom, though, because the kids were with the sitter during prime time.  There wasn’t much time in the morning or the evening for them to make a big mess because our lives were so incredibly rushed all the time.  There was never enough time to get ready in the morning and out the door on time, then in the evening it was a rushed “dinner/bath/bed” routine so I could get back on my computer and work some more once they were asleep.  Whenever I reflect on that, knowing now what I didn’t know then, I regret it.  I don’t regret working, I regret stressing over the job too much.  Allowing it too much weight in my very full life.

Sometimes I am guilty of being the “you’ll see” mom to my friends who do not have children, or those with babies much younger than mine.  Just wait until he turns two… you’ll see!  Or, wait until you have another one… you’ll see!  Please make me stop.  Hearing that is like nails on a chalkboard.  Especially when it’s coming out of my own mouth!

You all know I was a “cancer mom.”  Or, momcologist.  I watched the nurses like a hawk.  I learned every detail about every medication and a doctor couldn’t enter my room without being asked at least 5 questions.  I know acronyms for chemotherapy and the side effects of each.  I had a puke bucket on every table in the house and under each seat in my car.  I could help Ty as he got sick in the backseat without even missing a beat on the highway.  I knew when to worry and when not to worry – and cancer mom worry is totally different than “I think the poor little guy might be catching a cold” kind of worry.  It’s more like, “he’s been sleeping too long, it might be hydrocephalus.”  And I never had more guilt in my life.  I felt guilty for letting it happen.  Guilty for having to put Ty before Gavin.  Guilty for the inability to take away his pain.  Guilty that it was him and not me.  At the same time I was never more empowered.  We will beat this!  FU cancer, you will lose!  Superheroes, boxing gloves and gold ribbons filled my diaper bag alongside belly tubes, syringes, sanitary wipes, and about 30 different bottles of medication.  I never gave up hope because that would mean giving up on him.  Despite how painful those days were on multiple levels, we also made some of our most beautiful memories there and I long to go back with every ounce of my being.


I was a “special needs” mom.  Not just because Ty was sick, but because he became severely disabled as a result of his treatment.  For two years he couldn’t walk.  His speech was compromised.  He ate from a tube in his belly and he needed around-the-clock care.  For almost a year he could barely move his arms or hold his head up.  I fought for better treatment options.  I fought for therapy and for his education.  I felt the stares on the street and I used to prepare myself with what I would say if someone questioned me about pulling into a handicapped spot.  I can’t believe I used to worry about that, but I did.  I stressed over it because I knew to the average person it might look like I was just being lazy because I had a toddler in a stroller.  They wouldn’t know he was a disabled boy who preferred a stroller over a wheelchair.  I felt like I was constantly on the defensive and that is a terrible way to feel.  To all the special needs moms out there – you are incredible.  You are doing everything right and you don’t have to explain anything to anybody.  


I’m forever a bereaved mom, which in turns brings out “crazy mom” sometimes.  We all know her, but for a bereaved parent “crazy mom” can be really bad.  No sleep (like, none).  Or, do nothing BUT sleep.  I don’t want to talk to anyone.  My anxiety gets so high I chew the skin off my fingers until they bleed and have psoriasis of the scalp, which feels like my skin is literally crawling.  Crazy mom can’t listen to music because somehow every song is directed toward her and only her, making her either sad or mad.  I have a therapist and a psychiatrist and I’ve been diagnosed with post-traumatic stress syndrome, but they can't help me.  Nothing helps but time. And nothing will ever fill this void.

Which brings me to “mom on a mission.”  The only way I can cope with how much I miss my son is by throwing myself into the cause.  I need to do this to keep “crazy mom” at bay.  I need to do this because when I see this picture I want so desperately for the chance to fix him again.  And I can’t.  The other day I pulled this up on my screen and screamed out loud, over and over again.  “I want to fix you!!!  Why couldn’t I fix you!!  Feel better, baby, don’t cry, I can make it all better.”  I put my face next to the computer screen and tried to comfort him.  It is sad and it is desperate and it is my reality.  So I have to throw all of that energy into trying to fix him by fixing others like him instead.  This just can’t keep happening.  Someone, somewhere has to find a cure for these kids.


Today I often refer to myself as the “grandma” mom.  The warm, mushy, cheek-pinching grandma mom. That’s because I parent with more love than ever before.  I am weathered.  I am worn out.  But I am also wiser.  My emotional weight may rob me of the energy to chase after my son with vigor, but I watch every single thing he does with love and pride.  The way he props his head up on his hand when he’s getting full at the dinner table.  The way he listens so intently when we read a book.  The way he hates to be interrupted even if I know what he’s about to say.  The way he says "wee-memba" and "fwee-get" instead of "remember" and "forget."  I can’t hug him and kiss him enough.  When he is totally wild and crazy, I refrain from scolding and instead open my arms wider like a loving grandma.  “Get over here and give me a hug you crazy boy!” :)

Tonight I put him to bed because Lou was working late.  I always lay with him until he falls sound asleep because that’s what grandma moms do :)  We coddle.  After a few minutes he pulled me in closer for a snuggle until we were nose to nose so I whispered, “I love you.”
“I love you too.  More than anything.” He said.
Then, a little quieter, he reiterated, “Yeah.  More than anything.”  Within seconds his breath changed into the rhythm of deep sleep.  “Me too” I whispered.


Above all and despite everything, I am a “lucky mom"

Monday, January 13, 2014

Join us - Share the Love - Give a half a sandwich

There is a beautiful young boy who is fighting for his life tonight.  Justin Miller has been fighting cancer for seven years, and he is only 11.  He had multiple relapses.  His story reminds me so much of Ty, only with all of the ups and downs extending into many more years.  I fell in love with Justin when he was designated an ambassador for St. Baldrick's in 2012, and when I saw his incredible video on the Stand Up 2 Cancer telethon while Ty was home on hospice in September 2012.  The picture of Ty below, with his hands in a heart, were taken at that same time. 

Not that I need a reminder, but days like today, when I read about what Justin is going through and how his journey has taken another unfair turn - a really bad one - inspires me to share this event again, because it is a reminder of why we do what we do so passionately.

And, because "everyone can give a half a sandwich." as my friend Mary Pallotta taught me.  Although, in this case I realize it's more like a sandwich and a half :)

And, because, this event is going to be so incredibly FUN, and Lou and I can't wait to meet you all in our first, adult-only fundraiser.  Where we can really spend time with all of our incredible supporters - unlike the Mess Fest where there were 2,000 people (how totally AWESOME was that?).  Did I mention there is a 5-hour open bar?  Dinner?  Outrageous auction items?  A charitable casino?

C'mon friends.  Share the love. And if Greenwich is a bit too far, you should know that the Greenwich Hyatt has a block or rooms set aside for TLC guests at a rate of only $99 for the night - which is totally unheard of for a venue like this!  I am so incredibly excited and I really hope you will join us!  If you plan one big night out this year, make it this one.  Lou and I can't wait to see you at the Greenwich Hyatt on February 15th. 

WITH THE TY LOUIS CAMPBELL (TLC) FOUNDATION

We are pleased to invite you to the first annual "Share the Love" cocktail party and casino night to benefit the Ty Louis Campbell Foundation. 
 
We hope you will join us so we can thank you in person for all of the tremendous support you have shown our foundation, and to celebrate the success of our inaugural year!  Our love for you all is so strong, as is the love you have shown our family - especially Ty.  We couldn't think of a more perfect time to get together for the cause.  Together we can fund the research to uncover safer, more effective treatment options for cancer's littlest victims. 
 
 
Saturday, February 15, 7:00 - 12:00 Midnight 
$150 per person (cocktail-style dinner, 5-hour open bar, charitable casino, auction)
Hyatt Regency Greenwich 
Limited tickets available.  Advance purchase recommended.
*The Hyatt will have a block of rooms available for TLC guests at the rate of $99 per room.  
We hope to see you there!
Lou and  Cindy Campbell





Thursday, January 9, 2014

Introducing #poopcrumbs

"Ewww.  Did someone make a poop in this bathroom?"
"I don't know, Gavin - you tell me?  You were the last one to use that bathroom."
"Hmm.  I don't wee-member.  But I fink so because I see a couple of poop crumbs left."

Never, have I ever heard anyone use the term poop crumbs.  I find it so amusing, so much so that - you saw it here first - I went ahead and prefaced it with a hashtag.  This one is right up there with Ty calling Hannford's "HeineyFarts."  Kids are just so funny!  When did my baby become a "kid" anyway?  Where did my baby go?

I guess I first realized he was growing up when he announced "My butt has to tell you something," before farting.  Ahh, the joys of motherhood.  Boys will be boys :)  I swear, I promise, I really don't know where he gets this from and NO I don't condone it - although sometimes I do have to hide my chuckle in response to his ridiculous potty humor. 

Gavin has had a speech impediment for soo long, he didn't always talk so much!  We are just starting to learn and appreciate all that has been going on in that head of his all this time.  He can finally tell us, and we've decided that he's a complete nut.  A loveable, goofy, funny little nutjob. Crazy like his mommy :)

Yesterday he told me that when he's five, he is going to stop calling me mommy and just call me mom.  I was so amused, but also a little hurt.  When I asked him why, he told me it's because big boys don't call their moms "Mommy." 

"Yes, yes, they do!"  I lied.  "Big boys still say Mommy?"  I was desperate. Borderline whining.
"No they don't!" he insisted.  "Because all nine-year olds call their Mommy's Mom."

And, there you have it.  Soon I won't be a Mommy anymore.  Kicking and screaming, I will be graduating to Mom status.  I say, to hell with Mom status!  He will always be my baby and I will always prefer "Mommy"! 

#poopcrumbs :) #wheredidthetimego

I hope he never stops wanting to give me a kiss goodnight.  I cherish this edible moment right here :)


Wednesday, January 1, 2014

Another year gone. I wonder what he's doing up there all this time?


Today we spent the first day of 2014 on the slopes in Vermont.  The cold, crisp air really helped me get out of a funk I’ve been since Christmas. I tried to imagine Ty soaring around the mountain with me, perched on my shoulder – but of course that idea can’t overpower the real longing in my heart, and the feeling of remorse when I consider the fact that here I am enjoying another treat in life that Ty will never get to experience.

I know, I know.  New year, new chapter in life.  Moving forward.  Resolve to eat well, be healthy in body, mind and spirit, have more fun, all that stuff.  But for me, on this New Year’s Day, I am stuck on reflecting rather than moving on.  I can’t help it.  The holidays are hard and I’m a little stuck in the past.  Remembering Ty and reflecting on an entire year without him.  How did that even happen?  Gavin has grown so much, I am always asking him, “where did my baby go?”  I haven’t been very present this past year, and I feel like so much has happened without me even witnessing it.  I was there, but I wasn’t there. 

Lately I’ve been stuck on just how little Ty was, and how different everything is when your child is vulnerable.  We are their parents and we will do anything to protect them.  From the littlest thing like a minor incident at the playground, to surgery for tubes in the ears or tonsils removed.  We are there.  Watching.  Nurturing. Protecting.  What happened to Ty became something so much bigger than we could have ever imagined that fateful day when he was diagnosed with a brain tumor.  We never imagined just how little control we would have.  Just how much pain and suffering our little boy would endure. 

When you hear of someone diagnosed with cancer, it can be terrifying.  A husband, a parent, any loved one… I think the most common reaction is fear and compassion.  The dreadful thought of losing that loved one is the first thing that crosses the mind.  “What would I ever do without him/her?”  The idea of such loss, and living your life without that person, is simply heartbreaking.   Unbearable.

When it’s your child, processing the idea is different.  Instead of imagining your life without your most beloved, most precious gift – you beg and bargain to end your own life so that he or she can go on.  “Take me instead!  I already had a first day of school.  A first kiss.  I scored a goal.  I saw the Grand Canyon.  I had a beautiful wedding.  I don’t need any more firsts, because nothing – and I mean NOTHING - can beat the first time I ever looked at his beautiful face.  Let him live.  I want to die.  I promise, I do.”

During my bargaining with God, begging for the chance to switch places with my son, the mother in me worried only that Ty and Gavin would be so sad and miss me if I died.  That they wouldn’t understand and they would cry for me.  I hoped they wouldn’t feel like I left them and I also hoped that Lou would find someone else that could give him and Gavin the love they need.  I thought I would watch them from the heavens and I wouldn’t miss a thing.  I was so incredibly 100% fine with that idea.  But in the end, it was never my choice to make.  No matter how much I begged, it was Ty who had to go into surgery time and time again.  It was him that winced with the needle every time, the endless head pain was only felt by him, the horrific side effects of chemotherapy and radiation were his to bear, not mine.  And after all of the heroic fighting, I am the one left here, alive and healthy, snowboarding on a beautiful day, and Ty is the one watching down on me.  Still, I can’t help but feel like I am missing out. 

I am certain that Ty is someplace magical.  That his soul is so very alive and well.  That he is continuing to do amazing things.  But whenever I imagine him painting rainbows in the sky, or winking at me from the stars, I can’t help but feel so left out.  It makes me crazy to imagine him doing such amazing things but I’m not allowed to watch.  I can’t see what he’s up to, and that hurts to imagine.  I should be there, on the sidelines, beaming with pride.  Instead I am left to wonder if he has friends.  Who was there to greet him when he died (oh, how I wanted to be the one holding his hand the entire way).  Does he grow or does he remain little – because I don’t want to imagine him growing up in any way without me. I know this is a very “human” way of imagining his life after death, but sometimes I can’t escape the simple-minded concept of time being linear, and his experiences being similar to what I know here on earth.   I am left to wonder about this for the rest of my life. 

When Gavin and I walked out from Karate the other night, he said with excitement, “I SEE HEAVEN!”  Sure enough, there was one giant star right ahead of us in the early night sky.  “Me, too!” I answered.  “Who do you think is watching us from that star?”

“Yay!  Ty is watching us.  Ty is with us!” 

I just wish we could be up in that star with him, too. 

 
Wishing you all a happy, healthy, blessed New Year.  Thank you, always, for your continued love and support.