Is Driving Scarier Than Cancer?

Today is a day I prayed for, dreamed about, visualized, and mentally willed into creation. It was at a time that today seemed so far away. It was more of a hope and a wish for a future that statistically had little chance of happening. It is the day Emily will get her driver’s license.

In a children’s oncology ward with my 3-year-old hooked up to tubes, IV’s, and broviacs, I would talk about the future. I would visualize the future I was praying for regardless of what the stats told me.

 I vividly remember telling 3-year-old Emily how cancer wasn’t going to be as scary as the day she got her license. I remember laughing and telling her how for “Mommy” that day was going to be waaay scarier! I wanted her to picture her future. To not give up fighting for her life because of the pain of the present.

It was at a time when I knew her will to live was paramount to her survival. 

In full transparency, that day seemed like more of an imaginative place so far in the future I couldn’t even feel it.  Most of the time I just prayed she would live until 7, the age a relapse was unlikely and I could finally resume breathing like a normal human again.

But 17?  Ten years beyond that? It was risky to ask for.

We are told in James 1:6 “But when you ask, you must believe and not doubt.”   The message translates that to, “Ask boldly, believing, without a second thought.”

It was bold to talk about the future as if it was a done deal. It was bold to stand in defiance of the facts.  It was bold to confidently paint a future for a child that she might never see.

I was scared, but I was bold. Bold is from an old English word that means “stout-hearted, brave, confident, strong.”  I believe we can be scared and brave. We can be scared and confident. We can be scared and strong.

Today I am scared and strong. Today I stood in the waiting room just after she passed her driver’s test and went in to get her license. A big sign on the door said parents and instructors had to wait outside. I did a double-take. “Wait, I can’t go in with her?” I had to hand her all of her 6-point identifications and send her off to a government agency without any windows to even see who she was talking to and just wait?!??!  As my mind struggled with this new independence I realized getting her license is more than an answered prayer, it’s a bold step into adulthood.  A world without me standing as her advocate by her side.  A world where she will need to stand boldly on her own.  I fully admit I have struggled with the idea that I might not get to be her college roommate and I might actually have to cross a state line to see my daughter. And that actually might not be every day or just whenever I want. 

How did I foreknow 14 years ago sitting in a hospital bed praying daily for my daughter’s survival that the day she got her license would be scarier?  Not just because she is driving and NJ drivers are insane, aggressive, and think 55 is really code for 95, but because it’s an inch (or giant leap!) into adulthood. At least in the hospital room, I was her voice. Now she gets to speak for herself.  In the hospital room, I made all the decisions. Now she gets to make decisions.   How, in the midst of uncontrollable cancer, did I feel more in control?

So today I am filled with gratefulness and sadness. A strange and confusing combination of emotions that have settled into the pit of my stomach.

Sadness that every day is one day closer to her living a life as a grown-up. Where she will have her own house, her own family, and she will “visit” me and not live with me.  My heart aches even as I write this.

And gratefulness that today is the day that is scarier than cancer. Today is the day we dreamed of, prayed for, and laughed about.

Today is a reminder of just how far we’ve come.

Today is the day my miracle kid got her license.

#LifewithEm

Me: Em come hang out with me.

Em: What do you mean? I’ve been home all day?

Me: But in your room, not with your mom!

Em: So what do you want to do?

Me: I don’t know, just hang out with me like we used to.

Em: Like we used to what? What did we do?

Me: I don’t know, like when we would hang out all the time. Like talk a walk with the dog.

Em: Mom we did that once.

Me: Twice.

Em: Ok twice. I don’t know what you mean I’m here all the time….I’m bored!!!!

I’m all to sadly aware the day has come when my daughter would rather hang out in her room on the phone with her friends than with her mom.

For all you mommas overwhelmed with littles…

tired..

covered in crap (throw up, spit up, mac and cheese, ketchup or whatever else)…

wishing for a break….

trying to hold it together…

giving YOURSELF timeouts in the bathroom…

waiting for the day they can wipe their own butt,

unbuckle their own car seat,

brush their own hair,

brush their own teeth,

fix their own meal,

tuck themselves in,

do their own homework (because let’s be real no one gets common core math),

and want to go somewhere just once without having to pay for a babysitter…..

I get it…

I felt that.

I miss that.

#growinguptofast

An Emotional Day and a Great Big THANK YOU!

Today is an emotional and exciting day for me.  On January 2, 2017 I created a Go Fund Me page at the encouragement of some friends and after a lot of prayer.  See, I wanted to write this book. A book I felt God calling me to write, that I really didn’t want to write, but that I knew could help other families facing a childhood cancer diagnosis.

I was still broke and trying to get back on my feet after 6 years going through a domestic violence divorce, Emily’s cancer, and a move across the country to be closer to family. I was rebuilding my business, living paycheck to paycheck, and while I had enough money to cover my bills, I didn’t have the thousands of dollars it was going to take to publish a book.  See, I didn’t just want a book. I wanted one that was beautiful to look at and read, one that had pictures of our journey, and would inspire hope in the reader’s heart. I was going to need an editor, a graphic artist, buy an ISBN number and purchase initial copies to give out.  

We raised almost $4,000 and one of the first people who donated was my daughter’s surgeon. I cried.  People believed in my vision.

Many, many, many people encouraged me to start a nonprofit instead.  I knew that was not God’s plan for me.  See, there’s already a teeny tiny pot of money available for the childhood cancer world. I didn’t want to be sticking my hand in there too. I wanted to be giving to that pot instead. I knew companies like Amazon, Apple and Disney were able to make huge contributions to those very nonprofits because of their businesses. I wanted to be able to do that too. I started by doing lots of Buy one Donate one events and donating books to families and hospitals. I committed to donating a portion of the proceeds from MCF book sales to support nonprofits that make cancer fun for children and their families. 

Now Making Cancer Fun isn’t Amazon or Apple (yet!)  but today marks a significant day. Today marks the day I can give my first real donation. And I am so excited about the nonprofit chosen.

Out of Zion is a free creative arts program for children with medical and special needs. Kosj and Jaymi created this program in honor of their beautiful son Zion, who fought an aggressive brain tumor for one year before crossing over to be with his Creator. Zion loved music and creative arts, always singing along, dancing and exploring any instrument he could get his hands on. Out of Zion was born out of a calling on their family to extend the love, joy and faith that their son embodied. Kosj and Jaymi know first hand what it is like to have a child facing a difficult diagnosis and medical treatment. Their desire is to create a joyful and supportive environment for children and their families who are fighting similar battles while carrying on Zion’s legacy. Through Out of Zion,  Zion continues to inspire and bring hope to children, parents and entire families who need it the most.

Now many of you might not know, but my background is in theatre. At three I wanted to be a ballerina. When I hit 5’8″ at thirteen I decided instead I wanted to be an actress. I went to college, majored in Drama and my first job out of college was with a touring children’s theater.  Out of Zion combines my two loves: making cancer fun for kids and the arts. I can think of no better way to honor God (who I believe was preparing me for making cancer fun from that very first improvisation class) then to support a beautiful, impactful organization, and a family that stands for everything I believe in.

So whether you have purchased my book, shared a post, left a review, or just prayed for me along the way, THANK YOU. Thank you for believing in me and my vision, Thank you for believing FUN is a viable and important coping skill. Thank you for being part of this journey.

This is just the beginning. I have a second exciting product coming out (hopefully this spring!) and it is my prayer each new product will bring more revenue to give back bigger and bigger each time, supporting lots of nonprofits along the way.

So while $300 may not seem like much, for me it’s huge. Like Confucius said, “The man who moves a mountain begins by carrying away small stones.”  This is my small stone.

PS Here’s a peak at the work they do:

Giggles, Diets and My “New” Medication

There are teenagers running all over my house. They are loud. A teenage girl giggle is apparently one of the loudest sounds on the planet breaking all sound barriers. It’s also more contagious than COIVD19. Once one shriek is heard expect others to follow.

I was trying to sleep last night. I kept getting woken up. I believe at once point I literally shouted downstairs, “I can hear your entire conversation, be quiet!” 

Emily yelled back, “Wait, you can hear what we’re saying??”

 “YES I CAN!” I may have screamed back.

Ok, so I couldn’t really hear exactly what they were saying but I figured if she thought I could she would quiet down simply out of, “I don’t want my mom to hear us” since it clearly wasn’t out of, “I don’t’ want to keep my mom awake.”

I am happy she is happy and that my house is filled with teenage giggles. I’m glad she has great friends who have great parents who have great values. I’m glad she wants them all over here to hang out and take over my house. Too soon it will be quiet and those giggles will be filling dorm rooms instead of her bedroom.

I also have to admit I am super cranky.  Recently, a lot super cranky.  (Emily will attest to this.) In case you haven’t heard I am on a diet. You can call it whatever you want, “Getting healthy,” “Creating healthy habits,” “Getting fit” or whatever other sad-attempt-to-put-a- positive-spin-on-it you can think of, but just remember the word is actually just DIE with a “T” attached.  I have lost over 10 pounds and a total of 6 inches in 6 weeks.  Today, I put on a pair of jeans I haven’t worn in a year. (Ok it is 2020, has anyone really worn jeans this year?)

This also means I am not self-soothing myself with Entenmann’s donuts and Oreos. I have had to come face to face with the fact that chocolate really is my self-medication and makes me feel better when I eat it. In the past I have joked that Oreos are my crack, however this is no longer a joking matter. I actually had to make an appointment with my doctor because my anxiety is through the roof.

I calmly explained that while I have suffered from anxiety in the past, it has always been caused by a specific reason.  (I mean being stalked by your ex and keeping a stage 4 kid with cancer alive feels like it should come with a free anxiety pass.) But now I am safe and my daughter is happy (hence the giggles at 2am) so why am I finding myself snapping and panicky? It’s bizarre and I can’t figure it out in my head. Things that don’t make sense in my head then … cause me more anxiety.  (Like how that works?) I have been told I am an overthinker and only recently learned not every talks to themselves in their heads.  I can’t even imagine going through life as one of these bizarre non-self-talking mutant-humans. (You can learn more about this strange phenomena HERE.)

Then, of course,  I tell myself to, “Get it together!”  I lovingly question myself with, “What the heck is wrong with you!!!” And finally blame myself with, “If you had a better routine, worked out more, meditated, or were more organized” you wouldn’t have this “problem.” All of which just seems to increase my anxiety.

My doctor thinks it’s my diet.  Now, instead of stopping at Wawa on my way home to literally soothe myself with the delicious smoothness of a perfectly crack-high inducing donut, I am snapping and hyperventilating.

So, it seems my choice is fat and happy or skinny and cranky?  She suggests I drink a glass of wine at night.  Yup, that is my prescription. She’s been my doctor for years. She says anything she gives me will have way worse side effects than a glass of wine. And, since I don’t have an addictive personality (maybe I haven’t been 100% upfront about my donut issues) she feels it’s the “safest” way to go.  If I start drinking a bottle a night that’s a different story. (I think about sophomore year health class and learning how all smokers start smoking just “one” cigarette.,.. but decide not to bring that up.)  I was married to an alcoholic so I am definitely leery although somewhat excited (?) about my new “medication.”

I have decided it’s more fun getting fat. I like margarita’s, donuts and anything covered in cheese. It’s less fun getting fit. I don’t enjoy working out, drinking water like it’s …well water, and measuring my cheese so I can log it in an app.  “Why God? Why did you make it that way?????”  I am angry and resentful of this “the way the world works” knowledge.

It’s Saturday night and I’m typing this in my office (yes it’s 24 hours later and there’s still squeals of giggles coming from the other room … only now with “new” gigglers added” ). I just picked up pizza, salad and poppers for the gigglers. I was upfront with them. I’ll feed you dinner I just won’t cook it….what do you want? (Don’t worry, I have long ago given up on that pre-child fantasy about being the Pinterest mom who has an adorable Halloween themed Saturday night dinner planned for the giggler and her friends…that mom probably drinks way more than a glass….or at least that’s what my jealous judgment thinking rationalizes.)

I cut a tiny slice in half and savored every bite.  Pre-DIEt I would have had 2 slices. My sad half slice will have to do if I want to keep wearing these jeans.

Then, that horrible voice which must truly be from Satan himself starts up:

“Do you really want to wear these jeans Tara? I mean COVID cases are going up and there’s a more than 50% chance you’ll be in full lock down again soon and wearing yoga pants and no one will see you anyway because zoom is from the waste up afterall…”

Then I remember these last six weeks and how gooooood it felt today to put on these jeans… and I sulk away with my pathetic half slice and a mason JUG full of water.

I already drank my glass of wine too so no luck there.

I hear it has been said, “Nothing tastes as good as skinny feels”…apparently that person never had an Entenmann’s donut. 

Here’s to being the skinniest anxiety ridden person you know. Cheers.  

PS Literally as I am trying to post this the gigglers have just intruded and taken over my office and are planning a fashion show in the pile of dresses I have set out for donation/consignment. I am equally grateful they want to hang out with me and confused on how such small humans can make so much noise.

Safety First. The Quiet Death of a Generation.

I just watched a news segment on back to school in New York. A reporter asked a young child who was headed back on his first day, “What’s the most important thing you were told about going back to school?”

His answer?

“Be safe.”

My heart hurts. I expected, “Have fun!” or a least, “Make new friends!” I’d have even been happy with, “Learn a lot!”

But, “Be safe” ?!??

I want to cry. What are we doing?!??! What are we teaching our children? How will life be different for a child who grows up with safety as their first concern? Will a child who is always afraid ever be brave enough to take a risk? Step out of their comfort zone? Think outside the box? (Where, oh no! It might not be “safe.”)

We know that in order to be innovative, to step up as a leader, or even to just truly excel in life, we need to be willing to take risks.  We need to be willing to step out of our comfort zone and be uncomfortable.  To weigh safety against achievement. Are we unknowingly raising a generation of  people who will seek comfort and safety before success? Can we ever really go through life and thrive if we are constantly consumed with our physical safety?

What if those who ventured onto the Mayflower first stopped to ask, “Is this safe?”  Or what if the pioneers who migrated out west in search of gold first stopped to think, “Is this a safe choice?”  Did Neil Armstrong hesitate and say, “Wait guys…I’m not sure the moon looks all that safe.” I can’t imagine very many people would ever achieve or even do much, if safety was always the constant concern.  (I mean, most of us would never get into a car or step on a plane and certainly never dare enough to climb up Mount Everest.)  

Do you know what I’m scared of? An entire generation of people who will never experience the thrill of victory, who will never realize what they could accomplish or achieve if they would just be willing to take a risk. Because we conditioned them from childhood to …  be safe.


Now, I’m not minimizing the reality of COIVD19. I talk with my daughter about wearing her mask, washing her hands, and bringing sanitizer with her to the point she’s rolling her eyes at me on a regular basis. One of my best friends, who has probably been the most proactive throughout this whole Covid experience quarantining herself for over 21 weeks, was recently was diagnosed. (Which only affirmed to Emily that no matter what you do, you might still get Covid so you might just as well go live life with abandonment, which openly really wasn’t the message I was hoping she’d get).  So yes, with school starting, I’m definitely concerned for her safety. Our current argument is what will be an “acceptable mask” to wear to school. One that is socially acceptable (think Gap or Target) or one that mom deems medically acceptable. (Think N95, Cambridge or Vlog)

But, here’s the stark cold reality.  I’ve always been concerned for her safety.  From drop offs with her violent and abusive dad, which were ordered by the court against my frantic pleas, and continued until she was finally hurt and then given a life time restraining order, to nights sleeping next to her in her hospital bed listening to the beep beep of her vitals while cancer was trying it’s best to kill her (it lost and she won). I think about her going to college and college parties and my stomach does these funny flip flops. I think about her driving a car and drunk driver’s and then I’m the one ready to puke.  I mean the first time she went to sleep away camp I thought I was going to have a full blown nervous breakdown after the second night.  (Was she OK? Was she crying herself to sleep? Did she have sunburn? Did she tell them she wanted to go home and they just weren’t telling me? My baby needs me and someone help me break into camp and rescue her!!!!”)

Yet, I have to acknowledge that those are my fears and my job as her mom is to prepare her for life.  To encourage her to be responsible, make wise choices, and pursue life with a courageous heart in order to go boldly after her dreams. I hope that I will have given her a secure foundation of belief, confidence, and courage to live life in a way that when she’s old and gray herself, she will not be filled with regrets simply because she played it safe.

Yes, she will get hurt along the way. As much as I want to protect her from every pain, tear and heartache I can’t. I can only be there to hold her hand and remind her I’m always on “Team Emily,” God loves her even more than I do, and she is stronger than she thinks.

So, I will sanitize her up, put a mask on her face, and send her to school…and my message will be this …”Em just remember….have fun!”

WELL I WENT CAMPING & DIDN’T GET KNOCKED UP…..AM I DATEABLE YET?

Exactly 6 years ago to the day was my 1st and only Colorado Camping Trip. On Mt. Evans. 11,000 ft. With my Ex. We hiked up. Set up camp. And then sat in the same spot for the next 24 hours. I won a game of chess. (a plus) Ate gross soggy food (a negative) and listened to campers not far away sound like they were having way too much fun while I secretly wondered what the hell could be that much fun about sitting around in the woods. With little else left to do and a bottle of tequila I woke up 8 hours later nauseated and sick. After my soggy breakfast (another negative) we left realizing I was suffering from a severe case of altitude sickness. Four days later when I was still sick my doctor confirmed, I indeed did not have altitude sickness at all but was nicely knocked up. 2 ½ years of gynecologists, fertility doctors, acupuncturists and even a miscarriage. 1 camping trip, a bottle of tequila and 8 months later (and 5 weeks early) we welcomed Emily Grace into the world. I always did want to name her Evan.

So I have avoided camping since then. Well this spring after getting my heart broken and dumped because I don’t ski, camp, play volley ball or do any other “Coloradan” activities I have set out this summer to embrace my “Inner Coloradan.” To figure out what I really do enjoy. I mean people flock to Colorado by the millions to embrace all that this beautiful mountainous state supposedly has to offer. I should be able to enjoy SOMETHING I have recently reasoned to myself.

So it’s now Labor Day and I’m wrapping up my “Discover My Inner Coloradan Summer” with a camping trip. So far I have been pleasantly surprised. I love jazz in the park where I have learned to play Volleyball and actually love it! Apparently NJ attitude and competitiveness does translate into a certain amount of athletic ability so I’m not half bad at it either! I have worn flip flops more than stilettos (and have increased my dating percentages by 90% simply by dropping 4” – hey when you’re 5’10” in flats 4” makes a difference). I have a new favorite sport. Kegball. Yes, Kick ball with beer. I drove up to Winter Park… BY MYSELF! In the MOUNTAINS! Both ways! (I rock!) I enjoyed 4 days straight of 4th of July fireworks. Something I think must be uniquely Coloradan. Friday at Coors Field, Saturday at Glendale (in my personal opinion the best) and Monday at Elitches. (NJ we get one day. Enjoy folks. ) I went to Lodo Pool Parties (ok this might not be a “Coloradan” thing to do but totally totally fun) and even whipped out a pair of cowboy boots.

So now I’m off to go camping. 24 hours. 3 adults. 4 kids. Estes park. I’m really not sure what to expect. I pack burgers, hot dogs, sandwiches, my cousin’s sleeping bag and a friend’s tent. Oh and she gave me a lantern. Which was good because I didn’t really think in advance about that whole light thing. I figure I don’t really need to pack much. I mean it’s Labor Day. In Jersey we go celebrate the end of summer at the beach. How bad can the weather be? Until I get Irene’s 3 part text of what to bring. Including wool socks?!?!? WTF? It’s Labor Day! So I throw in a couple of socks, long pants, 2 fleeces and 2 jackets.

A few hours later we meet at a friend’s house, load up the car and head up. And then… we stop. Traffic. Is there an accident? A road closure? No it’s MOUNTAIN TRAFFIC! Like beach traffic but worse…because in the end when you get there there’s no beach. We sit. We sit. And we inch along. Finally we arrive. It’s now over2 hours later and I’m hungry. If I’m hungry and cranky then the 4 kiddos must be too right? Our group of two cars pull off and S gets out to talk to C about what the plan is. I realize I made a mistake leaving this to the 2 NON Jerseyians when S gets back in the car and tells me we’re going to find our spot. What? If these were Jersey people we would have gotten through the front gate, pulled over to the 1st picnic table we saw and pulled out lunch before the car even came to a complete stop. Antipasti, meatballs, and probably a couple of sternos and no one would have batted an eye. Instead, we’re going to find our spot. (Sigh…my stomach rumbles).

Now we get to the entrance of our spot. Another ranger who reads through a list of Do’s and Don’ts that make Nazi Germany look like Disney World & we finally get to our spot. Ok this is NOT what I expected. This isn’t all that bad. Our site (#75) is right across from the bathrooms! Running water and all. Ok! This is the way to camp. (See Irene I didn’t need to pack toilet paper!) RV’s line the road. Every site is filled. I am secretly thinking to myself…I don’t get it? If you are going to pull up your $200K RV why not just stay home? But I’ll go with it. We park. I make a beeline for the cooler and the sandwiches. It’s gorgeous. Perfect sunny weather, crisp clean air. And a picnic table. Camping is going to be fun.

Time to set up the tents. 3 adults. 3 tents. I’m expected to fend for myself here. There are instructions. I’m supposed to follow them. I open them up. “Fire in your tent is a NO NO.” Yes it actually says “NO NO.” I’m now sitting on the dirt with a pile of clips, mental hook things, poles, a meshy thing, a black ropy thing and a tent with this thing that goes over it. OK deep breath. This is kinda like putting together a toy from Santa that has 4 million pieces and is written in pictures and Chinese. As I read the instructions I’m confused. I’m supposed to shake down the tent? I look at S & C. Oooo…stake down the tent…that’s what those metal hooks must be. The ground is mostly sandy dirt so I take the Jersey approach. I figure if I can stake an umbrella into the beach sand I can stake a metal tent thingie into the dirt sand. Cursing silently in my head I get the metal suckers into the ground. Tent goes up pretty easy. Little tarpy thing that goes over the tent, not so easy. 2 failed attempts later & my tent is up! S & C look impressed (and slightly relieved). But wait? What are all these extra parts for? I have extra stakes, a meshy thing with ties, and a rope. I re-read the instructions. I swear there is NOTHING in these instructions about meshy things or ropes. I give up frustrated. If my tent falls in the middle of the night I’m sleeping in the car.

So we’re set up, fed, and the girls are playing. Now what?
See this is my whole thing about camping. This is why I got knocked up. There is NOTHING to do in the woods! The girls want to take a hike. They go off. Emily is inspired. Now she wants me to go on a hike with her. Up a hill. I notice there is no PATH! I’m supposed to treck through brush! She heads up the hill. I chase after her with the OFF trying to decide which is worse – spraying my miracle child with poison or the killer tics that could be up that hill. Emily now wants me to explain to her what a hike is. (Yes she’s a 5 year old Colorado native and doesn’t truly get what a “hike” is- I openly acknowledge Zebulon Pike and Stephen Long are probably rolling over in their graves).

“Well” I say “We walk up the hill,”
“But Where are we going?”
“Nowhere, just walking,”
“To where?”
“Uh…Up the hill.”
“And where does that go?”
“I don’t know? Another hill? This is what I’ve been saying all along Em! Hiking is just walking around in the woods going now where!”
She looks as confused as I feel .

Camping continues.

Watching the kids roast hot dogs on sticks – cool

Crazy Kamikaze chipmunks that have no fear of running inches from my feet causing me to scream more than once and curse their demise – not cool

Having a tent that you can zip close for time out so you actually don’t have to see your 5 year old having a fit – cool

Sun going down and needing to put on a second layer AND A fleece on Labor Day – not cool

Seeing a family of deer walk by – cool

Wondering if the people next to us are polygamists after noticing it’s 1 guy and 2 girls and a kid and not being able to tell if the guy is with one of the girls or both and then realizing that WE are 1 guy and 2 girls and 4 kids and possibly everyone is wondering the same thing about us – not cool

S’s innovated smores maker/basket that melts the chocolate AND the marshmallow – super cool

Stoli & Fruit juice – just necessary (warmed me up better then the fire minus the smoke)

It starts getting dark and Em is starting to crash. We climb into the tent. It’s starting to get cold. Really cold. Like under 50 cold. My saving grace is that my Staten Island hip hop turned hippy, camping, REI shopping, music fest loving cousin has given me her double person sleeping bag that I have to admit is the warmest thing I have ever slept in. Ever. Em and I snuggle in. I’ll just help her fall asleep and then go hang with S & C. My head hits the pillow. And I’m out.

I wake up to what seems like hours later to the sound of S & C going to their respective tents. At first I think “Where the hell am I and why am I laying on the ground?” Then I remember. I’m camping. I choose to sleep on the ground. And now… it’s cold. And I don’t care how warm that damn sleeping bag is my face is cold. The sleeping bad doesn’t cover my face! I burrow under like a mouse. I have to pee. Shit. It’s too cold to pee. I lay there for again what seems like hours. My house, which I’ve been complaining about for the last year, suddenly seems like the Four Seasons. My bed the equivalent of a Westin Heavenly bed. I hate camping. I still have to pee. What if there is a bear out there. A mountain lion. My daughter is depending on me to stay alive to raise her. What if I get taken out by a strange Coloradan mountain beast? I hold it and force myself to go back to sleep.

I wake up. Again. I still have to pee. I still hate camping. Why do I have the bladder of a 9 month pregnant woman? I remember seeing this red plastic pee cup in Sky Mall magazine years ago for peeing in the car when you’re traveling. I remember thinking that was the dumbest most ridiculous absurd thing I had ever seen. Now I’m wishing I had bought what I currently consider the greatest invention of the 21st century. Seriously, I would have no problem popping a squat in the corner of the tent safe from crazy Colorado wild life. I can’t take it anymore. I crawl out of the sleeping bag into the freezing cold, zip open the tent and wonder what is worse. Being mauled by a mountain lion or freezing to death? There is NO WAY I am walking the 500 yards to the bath room. Who knows what’s out there. I find a nice grassy spot behind the tents and let my Jersey gift for peeing in the dark without hitting my own feet get some use. I hope C & S can’t hear me. Until I see C get out of her tent with one of her girls. She sees me. She says nothing. And walks to the bathroom. Seriously she’s going to venture out into the WILDERNESS with a CHILD! And she’s from Georgia! They must be even crazier there.

I climb back into the tent. Into the best sleeping bag ever and placate myself that there can only be a few more hours till morning and then this hell will be over. I try to reason with myself…come on Tara…Embrace your “Inner Coloradoan.”

Oh F— my Inner Coloradan! I’m a Jersey chick who just peed in the cold. If I had driven myself I would have picked up Em – left everything else and made a beeline for the nearest hotel. I want to scream “I’m from NJ! I set up reservations not tents!” As my Jersey friend B said a 3 star hotel is what we Jersey girls consider “roughing it.” Thank God I don’t have tips anymore. Can you imagine my nails with this dirt. And you know the worst part? I have to take it all down and pack it all up tomorrow!!! I mean packing my suit case in a hotel and making sure I don’t forget anything is hard enough. Now I actually have to pack my BED and my WALLS! I want to cry.

And then there are my camping mates. I know it. I just know it. Tomorrow morning they’re going to ask me if I like camping. How will I respond? I can’t LIE. I am trying so hard to be Coloradanlly accepted. How will I tell them the truth? They have been so supportive. So encouraging. Cheering me on tent making and all. Ugh I’ll deal with it in the morning. Let me just get to sleep because currently I’m in hell and it has frozen over.

Emily wakes up first. Everyone else is still sleeping. She rolls over, looks at me and says. “MOM! I love camping can we do it again?” I ignore her. Fortunately, she’s cold. Me too kid. She wants to get up. I tell her to get back under the sleeping bag. Shortly after everyone starts waking up. I pop two Excedrin and remind myself I packed an emergency Bing since I’m not counting on coffee.

The morning confirms my worst fears. I truly, honestly, openly and deeply…. dislike camping. I now want a shower. I want a pair of stilettos and I need something with glitter before I will feel like a human again. S makes coffee (praise God) and C makes French cinnamon swirl toast over a fire pit (Ok yeah I’m impressed)

And then…

They ask….

“How are you liking camping?”

I pause. I look at their beautiful expectant faces.

I wish I could lie.

I can’t.

“It’s a good thing we only stayed one night,” I say. “Or I’d be hitch hiking Emily and I out of here this AM. I like your COMPANY but…well…I…I HATE CAMPING!”

It comes out like an apologetic whine. I thank them for the coffee, the French toast and acknowledge I am doing nothing to contribute to the “camping” experience. I am ready to go. I am eternally grateful for a noon checkout.

The highlight of my trip (minus the kick ass sleeping bag) was the homemade ice cream we got in the town of Estes on the way home.

I adore S & C and appreciate their putting up with me. I’m glad they remembered garbage bags. And that they each know how to light a fire. And that C’s daughters were nice and let Em wear their gloves. And that S can make a kick ass cup of coffee in a metal coffee pot that’s probably older that both of us put together. And that S drove (I did Winter Park. I’m done). And that C brought sticks to roast dogs and marshmallows (do you know you can’t just use ANY STICKS you find in the woods? You can actually like die or something????) And that C wasn’t too offended when Em told her she wasn’t going to drink the ginger ale because it had high-fructose corn syrup. And that S took pictures of me and my tent.

I’m grateful God has put friends like this in my life.

And you know what? In a way it was therapeutic. If being with my Ex meant I’d have to go camping again, I’m glad he dumped me when he did.

I’m off to find me a city boy folks. Preferably one with a Starwoods Rewards card.

THIS IS HOW WE DO THINGS IN JERSEY…..

Monday Emily had her MRI.

The 1st of 3 long days of testing to finish her cancer treatment. We’ve been visualizing, praying, waiting, hoping and anticipating THESE 3 DAYS since she was 1st diagnosed in November 2009. It seemed so far away at the time and now it’s here. I can barely contain myself. It signifies victory, success, and hopefully the beginning of normal although I am still not entirely clear on what that means.

I can unpack the permanently packed hospital bag full of toiletries, sugar free lemonade packets and the bible I took from the hospital chapel in a moment of despair (you are allowed to take them…even in my despair I checked….) I will not be scheduling any more over night hospital visits and Emily will only go for checkups now. I always remind people she is not in remission least they think they are free to stop praying for her. The next 18 months are critical. June 2 2012 that’s the date we are waiting for to be in the clear. As for now we are celebrating her victory for being one of the miracle kids that gets to the end of treatment and increased her cure rate almost 30%! What a little warrior she is.

As I’m sitting in the waiting room while she’s under anesthesia a family I know walks by.

“Tara what are you doing here?”

“I’m waiting, Em is having an MRI. We’re doing her end of treatment scans. Why are you here?”

And then the world stops for a moment. D, their 3 year old daughter who Em & I saw almost every morning while they did radiation therapy together at University hospital, has relapsed. She was done, months ago she finished therapy. Her broviac (central implanted IV line) had been removed. She was home. Life was going on. Then she had an ear ache. Well it was just an ear ache, quick trip to the doctor. Except they couldn’t see inside her ear. Weird huh? They open behind her ear. There’s a mass. It’s testing postivie for cancer. A blood cancer. But her blood is testing clean. Everyone’s stumped. One of the leading cancer doctors in the country can’t explain it. Frustration and fear written all over their faces.

It’s a moment like this that reality bites. Cancer kid parents seem to agree. We ache more for each other’s kids then our own. Maybe it’s because mentally we don’t go there with our own kids. We don’t face the reality of the fatality of their disease. But when another kid relapses it triggers that emotional fear…that could be my kid. The pain I feel for this couple. It’s empathy to the 10 degree. You’ve been there too. You know that fear of that first diagnosis. The shock, the grief, the anger, the fight with God. Then the acceptance, the fight, the will to kick cancer butt. Then victories, infections, trips to the PICU, vomiting, mucasitis, narcotic drips, IVS, surgery, tears, clear tests, cheers, success. The inner voice edging you on…she’ll be ok…my kid is one of the winning statistic. And then when you hear there is a relapse, it stops.

Is this worth it? Putting this tiny body through a living hell to gain a year?

I cry for them. I cry for D. I cry for the kids I personally loved and their families that lost the fight. I am scare and guilty at the same time. Guilty Em is here cancer free and D is not. Why does my kid get to the be miracle kid? I’m celebrating the end of treatment and I’m sorry because they are now standing in front of the next mountain. You can just see the tiredness written all over them. Tired of fighting. It’s not a physical fight it’s an emotional fight and some days there just isn’t any left.

They have to go. I have to go. We say good bye. I pray for D. God is the only one I know to go to go. And then the fear sets in.

I came today in victory. Em is done with treatment. She won! She’s my sassy jersey fighter! And now I’m paralyzed in fear. Guilt has suddenly been surrounded. An army of “what if’s” storm into my brain. What if it’s back? What if she’s just like D, Z, A, M, and A? Children who were the bravest, most heroic cancer warriors who lost. No! I scream in my head. I mentally take control of my thoughts and fight back (once again) I will not let those thoughts take control. I feel sick. The RN comes out Em’s in the post op room (they sedate kids for MRI’s)

I go in. I’m trying not to shake less the hospital staff thinks I’ve suddenly become a junkie on my 1 hour break. She’s laying there. This tiny little body on a huge operating wheelie bed. Side bars up, a blanket over her, the blue foam head cushion under her. Her eyes closed, breathing steady. The RN says the MRI went great and confirms they put the catheter in for her next test.

I sit. I think. I try not to think. I stare at her. What if there is cancer in her? What if it has snuck back in and is secretly plotting its human take over? What if all this was for nothing? What if she is just another statistic? She looks so good. Her hair is back & she doesn’t have that long yellow spaghetti like feeding tube sticking out of her nose anymore. She looks…well normal. I remind myself for 6 months she looked normal while cancer was slowly taking over her body and killing her without me knowing. Again I argue with the fear that torments me.

My friend calls to check on Em. I say she’s sleeping. Should I tell him? Should I tell him about D & that I’m scared & that I want to throw up & run out of here screaming with my hands over my ears. I usually don’t tell people I’m scared. I don’t want to put that into the universe. But today I do. With my voice shaking I tell him about D, about talking to her family, about her relapse, about my fear.

Now I know for someone who doesn’t live in the cancer world this is a lot to take in. I barely know what to say to a family when I hear their child has relapsed and I live it. So really can I expect this poor non 7th floor living, non chemo puke cleaning, non hospital eating, sleep room showering, IV pole pushing, CBC reading human to even know what to say? I almost feel guilty for putting him the position of feeling like he has to respond. Should save him the uncomfortableness? The “sorry for your kid I don’t know what to say” moment.

“D isn’t Emily.”

That’s it.

That’s all he says.

That’s all I need.

He’s right. She’s not.

Relief literally crashes over me like a wave drowning me. I sink into the chair. I feel like I just ran a marathon.” D isn’t Emily. D isn’t Emily”. I repeat it to myself over and over.

I’m sorry for D. I’m sorry for her family. My heart aches for them. I look at Em. She isn’t D.

She is cancer free. She is my miracle kid. I won’t have the tests back for a few days and yet suddenly the fear is gone. The fight is back. My jersey kicks in. What was I thinking? FU cancer. You’re not taking my kid. She just kicked your butt Jersey style. Get used to it cancer. I might be sitting in Aurora CO…..but this is how we do things in Jersey.

It’s a Girl!

Emily doesn’t love me.

At least this is what she tells me on a regular basis.  Followed by she hates me, she never wants to see me again, I’m mean, I’m stupid, and the list goes on.  (Now I could go off on a tangent as to where she hears this kind of talk but I’ll leave that to another blog…)

Coming from a 14 year old I would be mentally & emotionally prepared that this is a string of hormone induced ridiculousness of a teenager exerting their control & independence in the world. But at 4! Nothing has prepared me for the string of hurtfulness and anger bursting forth my 4 year olds mouth.  I secretly wonder if this is pay back for every mean thing I ever said to my mother. If it is, I better fasten my seat belt. Knowing my mouth, I’m in store for a long bumpy ride.

Reasons Emily does not love me:

• I won’t let her eat a marshmallow for breakfast
• I made her take a bath
• I won’t let her buy Yoplait yogurt at King Soopers. She wants peach yogurt. I point out all the organic, nutritious, non-chemical laden peach yogurts she can have. She wants Yoplait (maybe because the package is pink or maybe because she just wants to torment me) “It’s junk” I say calmly. “You can’t have it.”   “I don’t love you. I want to eat junk. I want to be sick!” she defiantly says with her hands on her hips.
• I make her take her Retinoic Acid pills. And then tell her “No” when she goes to spit them out after only holding them in her mouth & not actually chewing them to get the medicine out.
• I made her wear her coat. It was 54 degrees. Yes, I’m a mean mom.
• I won’t take her for High Tea after she screamed on the top of her lungs in heritage square so loudly the daughter of my friend Anne actually covered her ears. Oh that and she started smacking me for talking to Anne.
• I won’t cook her pancakes at 8:30 at night after I just made a veggie quiche, a Mexican quiche, and two homemade deli style baked sandwiches and cleaned the whole kitchen.
• I won’t leave Aunt Chrissy’s house within the 1^st 15 min of arriving to see my Uncle Frank & Aunt Valentina who I haven’t seen in over 5 years. (after an hour fit I finally was tortured into leaving early anyway)
• I won’t take her to Casa Bonita after she got in the car & started screaming & whining in her words “just because.”
• Every time I won’t take her to Starbucks to buy a strawberry banana $4 smoothie that she takes 2 sips of, a fruit & granola $4 yogurt parfait she takes 2 bites of, a $3 green machine she takes 1 swig of, or a $5 bowl of fruit she chews a half of piece of.
• I make her clean a broviac when she does take a bath. And I scrub the full 15 seconds with the alcohol Cloraprep that burns her skin so it doesn’t get infected (ok this one maybe I understand)
• I cut her toes nails. (although in my defense this is such a fight it is only after they become daggers that literally could impale a person resulting in death if she kicked them)
• I won’t let her eat chocolate cake for dinner.
• I push her Acyclovir anti-virus medicine thru her tube 3x a day. 
• I can’t read her mind to know which song she wants to hear in the car when she sings “if you… dum um um um…you know mom! You know!”
• I tell her she can’t scream every morning when she wakes up just because she wants to.
• I made her put her blood pressure cuff on in the Intensive Care Unit. She screamed “I want my dad” and then told the RN to call him because once he got there he wouldn’t make her put the cuff on.
• I wouldn’t buy her 2 Bernstein bear books, only one, at Tattered Covered and she NEEEDED two and HAD TO HAVE two and when she threw herself on the floor in a fit we left without any books and I carried her 4 blocks down 16^th street mall with her screaming and flailing herself around while everyone we passed starred & I’m sure judged me as to why I couldn’t control my child (well at least the ones who never had kids anyway did)
• I won’t change my plans in the middle of the day to take her to Chuck E Cheese, Mr. Biggs, the Bounce Place, tattered Covered, The Art Workshop, Red Robin, or wherever else she decides on the spur of the moment she just HAS to go to.

 

And the list goes on.

• I make her wear her orthotics.
• I won’t turn the radio up to a blasting level so she can hear it because she refuses to wear her ear jewelry, hearing helpers, hearing aids or whatever other term we’re currently using to make them seem fun.
• I make her brush her teeth. 2 times a day!
• I won’t let her open the car door when she’s having a fit while I’m driving. (Thank you Kwan for showing me how to child lock the doors!)  
• I make her get dressed. In clean clothes.
• I make her wash her face, wash her hair, and wash her hands on a regular basis.
• I make her take her meds, drink her vitamin juice, and flush her IV lines.
• I won’t let her play play dough on the living room carpet without a mat. (She explains her dad lets her play play dough on the glass table over the carpet. I tell her when we have a glass table she can do that here too)

 

Is it because she spent almost a year in the hospital getting catered to 24/7 that she now can’t “deal” with the “real world?” Is it because every time she did get to leave the hospital for a few days at a time we made a big deal to do lots of fun things that now she thinks every day is a “special day” for a special outing, gift, treat, or adventure? Is it because she deals with the same inconsistently every child of divorce likely faces where there are rules at one parent’s house that aren’t at the others? (She reminds me on a regular basis there are no rules at her dad’s. And then every time I tell her “No” she demands I call him and take her there. Now outside of the obvious, I can’t call him because I have a protection order against him because he wants to kill me but I can’t really explain that to a 4 year old. So I just say “I’m sorry Em, that’s not how it works. You’ll see your dad on….” Which just ignites how mean, stupid, & nasty I am and how much she doesn’t love me.  Or is it because this is the cycle of pay back in life? Your parent’s sweet revenge.

 I remember when the Doctor 1^st told me I was having a girl.  NO! I thought! I can’t have a girl. There is only 1 crazy woman in my house. ME! I can’t handle two! I know me. I couldn’t even live with girls in college.  I refused to accept I was having a girl. I picked out a boy’s name, boys clothes, and a generic nursery set. People excitedly would ask the age old “What are you having?”  “The doctors say it’s a girl but I’m having a boy” I would respond. After all, I was sick and my mother was only sick with boys.  My skin was breaking out & my non-scientific study in the skin care market for almost a decade would indicate a boy. And most importantly girls were too mentally and emotionally challenging for me. God wouldn’t give me a girl.  As the doctor pulled her out of my belly in a very unplanned c-section the1st thing I remember asking was “What is it?”  “It’s a girl!” to which my ex husband leaned over and said “Do you believe them now?”

A girl. She was the most beautiful creature I had ever seen. A girl. Pinks & purples. Dresses & bows. A 4 year old with a purse fetish and me, her mom, who would rather pull off my toe nails then go shopping.  A girl. Cliques and sleepovers and cattiness, and BFF’s.  Girl scouts, dance class & gymnastics (oh who am I kidding that kid will be waaay too tall for gymnastics). A girl. A gender that has a rare mutation where a phone can stay attached to their ear for hours and hours, days and even months without discomfort. A girl. Dating and boys and prom dresses and 1^st kisses, and pregnancy and STD’s and date rape.  It’s been said that when boys get mad at each other they just beat each other up. Girls give each other eating disorders.

Of course shouldn’t have been worried. After all, I’m a better mom then my mom. I have it together. I’m more emotionally stable. I am not a product of some crazy 60’s hippy generation. I’m an 80’s baby.  Capitalism, Self Sufficiency, and Success at its finest.  I have read “Love & Logic,” “Babywise,” and “Principles of Success.”  I will run my home and my family with the same ease, efficiency, and effectiveness I have run a $300K+ business. I remind myself I mentor hundreds of women around the country.  I work with women every day!  I have lots of girlfriends who I adore and love!  One little girl can’t be that hard. I will be the model mom. She will always be neatly dressed in well matched clothes & a cute bow in her perfectly groomed hair. My house will never get dirty, my dishes will clean themselves & my laundry will fold & put itself away. My car will not have cheerios, juice boxes and diapers spilling over in the backseat. I will always have a fully stocked diaper/kid bag in my trunk with everything I might ever need or want at my finger tips. Nutritious Organic home cooked meals will miraculously appear on my dinner table every night.  The color coded calendar on my fridge will reflect a life of balance with church time;  personal time for yoga, prayer, friends, and happy hours; work time where I will have more than enough emotional energy & stamina to grow my business to my $1million goal; and a equal balance of activities to nurture a young creative growing mind, play dates, park outings, library programs, nature programs, and seasonal children’s events which  I have carefully selected out of kidspages.org to foster intellect, creativity and physically activity. 

Then, of course, Emily will grow up singing my praises about how blessed and lucky she is God chose me to be her mom (as I remind myself regularly when I am on my knees begging God for grace & patience).

Oh how I wish I lived in my fantasy world.  Where even as I type this I can hear birds singing in the background, a happy dog barking (not that yappy devil dog that lives next door that I want to bunt kick across the cud-a-sac because it barks 15 hours a day when it’s owners leave it outside and they are nowhere to be found) but a cute happy dog. And somehow there is magically a stream flowing in my backyard and fish jumping up to dance.

Back to reality. It’s 5:30 am (which in my world is the middle of the night) and I am wide awake because Emily woke up an hour ago screaming that she wanted  “drish.”  When I couldn’t understand …did she want gold fish? (was she hungry?)  did she want to come lay in my bed? (Maybe she was saying “dred?”) Which just made her angrier until I finally deciphered “my drish” into” my dress…” which really wasn’t a dress at all but my black and white silk shirt that she has recently become attached to “the one you wear ALLLL the time!” she screamed at me (for the record I think I’ve worn it once in the last 4 months.) and then rolled herself up in it and went back to sleep.  And now here I am typing & wondering how did my life get here.

We go to therapy tomorrow at 2pm.  I think we both need it.

I THINK I HAVE A SPECIAL NEEDS CHILD….

I think I have a child with special needs.

 I say “I think” because I don’t want to say it at all. I don’t want a child with special needs. I want a child who had cancer, kicked it’s butt, and now is “normal.”  Yesterday Emily came with me to the post office.  I walked behind her.  All arms and legs, 4 years old and just 33 lbs and super tall. (So far radiation has NOT stunted any growth!)  Lanky and skinny.  She bounded in with a nose tube hanging out of the right side of her face which is 2/3’s covered by her BMT mask that is her shield against the world of germs, her right arm wrapped in CoBand, tucking in the 2 new Pic Iv lines that will stay there until December, her sneakers bursting at the sides from her new orthotics that come up around her ankles and her 2 new hearing aids on either side of her head.

The orthotics have animal prints on them. I tried to make it fun that she was stepping on a monkey with each step she took.  So between the jungle print orthotics, the hot pink and orange “ear jewelry,” (her choice of colors), her neon pink CoBand wrapped around her arm and her bright turquoise mask the kid is quite a fashion statement. As I watched her it was the first time I saw her as a kid with special needs.  All those flashing colors proclaiming to the world….I am not “normal.”  I have ….ugh my stomach turns as I type this….”disabilities.”  It was almost as if for the 1^st time I saw her as other people see her. 

It’s strange that in almost 9 months I have never seen her as a “special needs” kid.  Even though her bedroom looks like a medical storage room…bins of syringes, Tagaderm tape, a huge “Tree” pole for her feeding pump, backpacks and pumps for her TPN, bottles of saline, heparin, sterile water, and more creams, lotions and drugs then a pharmacy.  Still it’s just her room. She’s just my kid. It’s just part of cancer. And it’s not forever. 

Today forever hit.  Even when cancer is over the effects are not.  “Long term side effects” It’s something you don’t hear about much while you’re going through treatment.  When I ask about them I get vague generalities.  Partly because no one knows (I mean really, this is the 1^st generation of kids who live through cancer to HAVE long term side effects) and also, I think, because everyone is all too aware of the reality is she may not be around to have long term side effects. Why worry about that yet? Let’s hope she HAS long term side effects that you’ll have to deal with.  This seems to be the general consensus.  Any side effects are worth survival.  Long Term Effects = Life = Victory.

Of all the things this kid has gone through, of all the “badges of courage” she has ( 2 chest tube scars, the “diamond cut” across her abdomen, the small pencil eraser shaped scars that cover her chest from various stitches, lung surgery and biopsys) The hearing aids bother me the most. Maybe it’s because I can’t put a shirt over them.  Maybe it’s because without hair and their bright neon color they scream “I CAN’T HEAR!”  Maybe because it reminds me every time I look at her  I hate cancer. Maybe it’s because I don’t want her to have long term side effects. After all, she’s my Miracle Kid. Miracle Kids don’t have long term side effects. Or maybe that’s what being a Miracle Kid means.  You get to have long term side effects because you lived. You survived. And you were victorious. 

I wondered how many people were looking at her as she bounced her way into the post office totally oblivious that she is different. That she is now a “special needs” kid. 

We just got her ear jewelry this morning.  9 Am. Her, me, and her dad. All in one room. (That in and of itself is blog all it’s own).  I have to say at least they really do look like “jewelry.” We’ve gotten so used to calling it ear jewelry  that when the audiologist handed her a book about an Elephant and his hearing aids the words “hearing aids” through me off…..wait, I thought we were getting ear jewelry…hearing aids just do not sound as fun or as cool.  Fortunately she is 4 …hot pink and orange ear jewelry is cool.

And then, Stephanie came in the room.  She works at the hospital in the audiology department and talks to all the families when they come in to actually get their hearing aids. I never really caught what her actual job was.  Maybe, hospital Angel?

She has a hearing aid. In one ear. In the other, a Cochlear implant.  You can’t see them. Her chin length bob covers them.   Other than her speech she “looks” normal. She’s pretty.  Very pretty.  I’m sitting there as she is talking to me thinking “Wow she seems so normal.”   Then I think “Why would I think someone hard of hearing is not normal?” I have no idea.  And I have to admit that I guess subconsciously I do.  I must if I was surprised she WAS normal.  She has a wedding ring on. Someone married this woman!  I wonder what her husband is like. Does he care his wife is….

*ok wait, I don’t even know the politically correct term….Hard of hearing?  Hearing disabled? Hearing impaired?  Part way deaf!?? …I guess I should find out because now it describes my daughter…I decide I’ll Google it. 

I am shocked by my ignorance.  I am relieved she is married. Someone wanted to marry her. Maybe someone will still want to marry Emily even if she can’t hear.   Here is this beautiful, well dressed, married, well spoken, put together woman. And she has a hearing aid!  Doesn’t seem to affect her much.  She pops it and out and shows Emily.  Like it was an earring.  I wanted to ask her if she went to her prom.  I mean getting married is one thing…by the time you get married I would hope people don’t care about a little thing like a hearing aid. But the prom? Will Em be the 6 foot 3 inch dateless deaf girl who needs to take her cousin to the prom?  Will she need to wear orthotics with her flat shoes because she’ll be too tall to wear heels?  And we will have to have the hair dresser try to style her hair to cover her hearing aids and have to find a dress that covers the blue veins that come up her chest to her left arm because of a clot her broviac left?  I have this horrible mental picture of a promo photo of Emily. The only thing worse is that for some reason I also picture her in head gear and a mouth full of metal.

I am a terrible person.

My child has fought for 9 months to kick cancers butt.

She has endured weeks of NPO (nothing by mouth) crying that she was hungry.

She has endured months of having ac chest tube tying her to a bed and scared to take a step.

She has endured physical therapy, occupational therapy, breathing therapy.

She has endured an 8 hour surgery where the picture I have would never be equated with a human being – just blood and guts everywhere except for the belly button at the bottom reminding you this is her STOMACH!

She has endured internal mucasitis soars running from her mouth to her butt so painful she was on a narcotic drip.

She has endured cyclical vomiting – puking every 15 minutes for 10 days and getting acid burns on her chin from the vomit.

She has endured 104.5 fevers being packed down with ice, ER admissions, twice daily injections into her skinny little legs and dressing changes all over.

She has endured a week of bio therapy with blood pressures 50/20 in the PICU.

And what I do care about?

 Getting her a prom date.

Really I am sure my thoughts alone are offensive to every special needs family and child out there.  Am I that vain? I did pray when she was in my belly that she would be pretty. That she would not look like her Aunts on her dad’s side. (They look just like her dad…except they are women…)  I will defend myself  by quoting a new study that shows pretty people actually make more money than non attractive people.  (And hope nobody mentions Bill Gates)

And now as I watch her I realize she is not normal. She is beautiful. She is funny.  Everyone in the hospital who meets her loves this kid. She has a reputation. She is more self assured then any 4 year old should ever have to be. And she is a child with special needs.

Maybe, just maybe, somehow her special needs reflect on me and threaten me since, after all, I seem to be the only one with the issue about her ear jewelry.   She does not seem to care.  I tried to make it fun.  I told her I was jealous – I wanted ear jewelry – I asked to borrow them – asked if I could get a matching pair. She told me no.  I begged the audiologist. She told me no.  I told her C & A (the two other kids with the same Neuroblastoma and same therapy) didn’t get ear jewelry. That it must just be for Miracle Kids and not to tell them because they would be jealous.  Then I dramatically gagged and told her longer she wears them the more ear wax I would have to clean off  and that I couldn’t handle the gross stuff like she could.  She loved it and said she would wear them all the time.  The kid LOVES to gross me out. Other than trying to get used to how they feel she doesn’t seem to care at all that her ear jewelry makes her different.  She does double check to make sure I took the orange “necklace” with us because she wants to wear that jewelry too. (It’s a string that hooks to the back of the hearing aids and clips to the back of her shirt so they don’t fall off or get lost. They are really more for babies but Emily loves jewelry and to her it’s just another “accessory.”)  I mean really, this is the same kid who is begging me to shave her head now that her hair is growing back in and she doesn’t want to have to wash it.   Hot pink & orange in her ears is nothing.

The mask will come off next week.  The nose tube isn’t permanent.  The Pic Line is until December. And even her broviac will eventually come out.  Her hair will grow in and cover her hearing aids and in the winter she’ll wear boots and you won’t see her orthotics.  All the “externals” will change.   She will look “normal.”   Although, I’m not sure what that means any more.  

She was so angry the other day playing outside with the neighborhood girls.  She couldn’t keep up with them on their bikes.  She was frustrated that her legs tire more easily. She started crying. I held her & cried  with her because she wasn’t as “strong” as them.  My kid who is kicking cancer’s butt. Cancer that kills even the toughest of men.  That stumps even the smartest of scientists to find a cure. Cancer that strikes fear in the hearts of most grownups just upon its utterance.   That cancer.  She is kicking it’s butt.    She is waging war on “Stupid tumor.” She reminds Stupid tumor daily that she hates him.  She takes her meds even when she doesn’t want to and reminds  Stupid Tumor he is staying in pathology.  She tells Stupid Tumor he has no friends. And she asks me regularly if I also hate Stupid Tumor. (I do).  She looked at me the other day and said “Mommy my tumor’s still that word that you won’t let me say.”  (She called him F’ing Tumor one time. When I told her she couldn’t use that word (after I got over my shock that she has HEARD that word) she put her hands on her hips and asked “Why not? It is a F’ing Tumor.) I had to agree but still said she couldn’t say that word.)  She has a personal vendetta against Stupid Tumor.  It’s her or him and she’s decided she’s winning.  I think bikes or not, she is the strongest kid I know.  She asked me at the clinic last week if I thought A & C were strong too. I told her any kid that kicks cancer’s butt is strong.  These kids are little warriors and don’t even know it.

I take a deep breath.  She’s in bed and the hearing aids are sitting in their “jewelry box” on her night stand. Her pump is running her TPN, her feedbag is running her formula feeds, and she is curled up next to me in her bed. I kiss her fuzzy head. I miss that bald head. Time marches on.  Life will go on.  One day her room will be “normal” & won’t have all these supplies, and I won’t need to bring out a new garbage bag each night full of medical trash just from trying to get her ready for bed.  Like all “normal” kids she will start school, have homework, go to sleepovers, and hopefully, have a prom date. Life will be “normal.” Our days will be “normal.”  And bedtime routines will be “normal.”  

But Em….

she will not ….

she will still be… special.

I CAN’T HEAR YOU….AND NOW NEITHER CAN EM.

I posted this on Em’s Fan Page 4-22-10 during her Bone Marrow Transplant Workup Tests…..we just got fitted yesterday for her hearing aids …thought this would be an appropriate re-post 🙂

BMT workup Update!

So after 10 days of my daughter’s father refusing to communicate through our attorney’s in regard to Emily’s BMT workup week today we had yet another fiasco. Long story short I took her to the dentist (after a nice confrontation in the hospital hallway…and yes I still have 2 protection orders) and her teeth are fabulous!!! She was scared to go to the dentist. It took a ½ hour for the transport people to figure out how to get 1 kid, 1 wagon, 1 “pole” with a feeding tube and fluids, 1 mom and a gorilla and pig (they were the stuffed animals who made the “cut” this morning and got to go on a trip to the super cool fun dentist) into a van to get her to the dentist.

When we got in the room we decided the x ray machine looked like an ostrich head. I was, of course, jealous it “kissed” her on her nose, chin and cheek and didn’t kiss me! No fair! I said. I told her there was no way she could bite on the black cookie (x-ray film) and hold it in her mouth. I was sure she couldn’t. She grinned and held her bite. Then laughed and laughed that she knew she could do it! We counted gorilla’s teeth… he only had 15 …she had 20…hers were even…his weren’t …even funnier.

Then they said she brushes better than some 7 year olds they’ve seen. (Insert mom pride here!) I have to say it was my 1st time sitting as the parent watching her brush her teeth while the dentist watched her and thinking…come on… do it right kid! Show them I’m a good parent and I’ve taught you to brush your teeth the right way….” …phew …I passed

EKG & Echo’s….results are in ….they are good!

Hearing test. 1st test comes back that her results are off from what they were in December. Ok let’s do more testing. 2nd test. Her ear is healthy so it’s not from the Corona virus she has (yes it’s actually called Corona virus….it’s basically a cold) 3rd test. Emily sits in the chair. Little earphone on her tiny ears. She has to place a toy into the box every time she hears the “bird” chirp in her ear. I see the doctor writing notes. I don’t know what they mean however I’m not thinking it’s good. Not sure why…I mean maybe those circles are good circles.

Then they put the little mini ear phone on her ear bone. I hear the high “beep” tone. I hear it again. And then a 3rd time. Each time louder. Em sits there holding the block waiting to hear the beep. I turn her feeding tube off. It must be that crunch crunch sound it makes as it turns that’s interfering with her being able to hear that beep.

Again, I hear the beep. I hear it a little louder. A little louder. On the 4th one Em puts the block in the box. She doesn’t know she didn’t hear the 1st 3. It’s all a game to her. I put my hand to my mouth. I’m big into energy. I don’t want my sudden fear to “reach” her.

After the “game” is over I look the doctor. I’m holding back tears. She confirms. Emily has suffered “moderate” hearing loss. It’s from her 2 rounds of that awful Cisplatin chemotherapy. It’s known for hearing loss.

Ok I think, so she can’t hear a high pitch. No biggie right. Then the doctor continues. It could get worse. They don’t know if it will, can’t stop it if it does, and can’t reverse this damage that is now permanent. Ok I think, well it won’t get worse. Like everything else I’ll just make up my mind it won’t. I’m not crying. Em can tell I’m rattled. She keeps fusing and won’t sit still. She’s picking up on my energy. She’ll need 2 hearing aids. One of each ear. What?!?!? I’m sorry I must have heard wrong now. What did you just say? How can this be? If we didn’t even know she had hearing loss until your stupid little birdie beeping test then why would she need a hearing aid? Obviously it’s not affecting her day to day. Well, I learn, actually it is. She hears fish…but only hears the “ish.” Because she used to hear the “F” her brain fills in the blank. She is missing sounds and not realizing it. It will help her fill in those gaps. I hate cancer.

Well it can’t be that bad I mean I’ve seen the commercials hearing aids are like little tiny nothings now…no one will see them. Wrong. Kids her age need the big ones that hook behind her ear. She won’t be able to get a small little in the ear kind until she’s 15 or so. Seriously? Isn’t there a surgery or something they can do to fix these little “inner ear hairs???” I mean it’s 2010!!! Nope. Science is working on it. Nothing yet. Maybe in the future. Right now she is stuck with ear jewelry.

Em is now getting upset because she doesn’t understand what we are talking about. “Tell me!” she cries. She always says this to me when she knows we’re talking about treatment for her. How do I explain to her she can’t hear things she thinks she can? After all I just praised her at how fabulous she did at her “beeping” game. I hate cancer. The doctor shows her a picture of an ear …it shows the inner ear. I explain that she has little “hairs’ in her ears that help her hear. I wiggle my fingers to demonstrate the little hairs. I say they hear high beeps [said in a high voice]. And they hear low beeps [said in a low voice] High beeps [high voice] low beeps [low voice]. I ask …”so when we take our GCSF (the white blood stimulator that we inject into her leg after chemo) what does it do?” She knows this answer “wake up!!” she yells….that’s right ….it goes though her body and tells her white blood to WAKE UP! “Well” I explain “your little ear hairs got tired from the chemo. It made them {insert yawn} and fall asleep” {stop wiggling fingers to show they are sleeping}. So we need to wake them up because they can’t hear the high beeps!! So we get ear jewelry that you wear on your ears and it goes into your ear and says “WAKE UP!” {Lift fingers to show hair is now awake} so it goes asleep {drop fingers] and it wakes up {lift fingers}. This makes sense to her but I’m not fully convinced she’s ok with it. I’m not. I hate cancer.

We leave the room and I walk her down the 15 hundred mile wake back to her room. Holding back tears. I don’t want to see her little bald head touting two large hearing aids. I don’t want her to have a visible reminder every day of her life about her cancer. I want to complete her treatment. Be done. And 10 years from now think…that was a life time ago. Not be reminded regularly that I hate cancer. I don’t want people to look at her. My thoughts rush to her in school. I don’t want kids to make fun of her. I don’t want her to be dateless. I don’t want her to be self conscious. To think she is anything less than perfect. I am keenly aware I seem most upset about “what other people will think.” This is odd for me. I don’t usually care what other people think. She doesn’t ever want to grow her hair back and has told me on more than one occasion if it grows back she is cutting it off. So maybe she won’t care she has hearing aids. I do. I wonder what other long term side effects she will have. Will I look back at these effects and wonder if the cure will be worth the quality of life she will have? Or will these “effects” just be such a part of her she won’t know any different “quality of life.” After all she asked the ER RN for her oxyicodone and atavan upon admittance. She knows the words broviac, CAT scan, catheter, chest tube, tumor, BMT, and biopsy. Maybe her world is so different already a hearing aid or two will be nothing.

I get back to the 7th floor. The kid in the room next to Emily is dying. The colors of life are taped to their door. It’s from the chaplain’s bereavement services.

Suddenly a hearing aid doesn’t seem so bad. I think they even come in some cool colors now.