Fear, Choice and Death

Ever have somebody want to kill you? I mean actually plan and plot and tell your daughter how they were going to do it?  Someone who made it their mission to destroy you. Now imagine walking around every day knowing that there was someone out there who’s sole desire was to kill you.  

I remember they day I made the choice.  I had spent months walking around in fear of my soon-to-be-ex husband. Constantly looking over my shoulder. Unable to sleep because of every creak and squeak in the dark.  And one day I decided to stop.  I decided I had already given eight years of my life to someone who didn’t deserve them.  I wasn’t going to give one more day.  I understood the reality. “Women are 70 times more likely to be killed in the two weeks after leaving than at any other time during the relationship,” the Domestic Violence Intervention Program reports. I was taking a risk by leaving. I was taking a bigger risk by staying.  I was tired of being afraid. Tired of giving control to someone who had been controlling me for 8 years. I wanted my control back. And that day I took it.  If I was going to die, I was going to die without giving  him one more day, one more minute, or one more second of my life. I choose to let go of fear and trust my fate.

I never looked back.

Twelve years later I realize what a defining moment that was for me and how it would affect my life and my choices forever.

This morning I woke up to a headline that read, “US Reported More than 10,000 Covid-19 Deaths in Four Days.”  Crap, that’s a lot of people.  That sounds scary. So, I ran the numbers.

• 14,400,000 have had a positive COVID-19 diagnosis
• 279,000 have died
• .019 % of people diagnosed have died
• We have 331,000,000 million people in America
• Only .043 % of the population has had COVID-19

Ok Tara, back into your rational brain.  Take a deep breath and repeat, “I will not be afraid.”

I know that’s easy to say when I’m not a nurse or doctor overworked, exhausted and surrounded by death. I know that’s easy to say when I’m not one of the 279,000 families that are celebrating Christmas this year without someone they love. I know that’s easy to say when I’m not over 65 and that stat doesn’t apply to me.

My mom and I argue on this. She’s afraid to leave the house. I get it, she’s 74.   So far she’s missed all 3 grandkids birthdays, Mother’s day, her birthday, my birthday, my brother’s birthday, our Annual 4^th of July BBQ, a trip to Cali to see my brother, Halloween with her grandkids, her annual Vermont trip, and Thanksgiving. Well not completely missed, if you count the occasional outdoor social distancing visit where we have sat 20 feet part and passed cake through an elaborate system of who touched it last.

I’m hearing about nursing homes that are in full shut down mode. We have a close family friend in one. I asked my mom if I could send her an Advent gift. Her year has been even harder than my mom’s because she doesn’t get to do backyard 20 feet apart distancing dates.  I figured an Advent calendar that gave her a fun gift to open might give her something to look forward to each day. My mom said no packages are allowed in. Apparently, I have more access to a local inmate than my grandma-by-choice.

I try to think how I would feel if situations were reversed. If that was me. I wonder if I was at an age where I might already be celebrating my last holidays, what would I want to do?  It leads to me to the ultimate question: is life about living or about being alive?  I mean, what’s the point of being alive if I’m living in a paid Medicare version of jail?

I’m reminded that fear is unbiblical. (Isaiah  41:10, Deuteronomy 31:6, Joshua 1:9, Philippians 4:6-7, just for starters)

Common sense is biblical.  God says, “For God has not given us a spirit of fear, but of power, and of love and of a sound mind.” (NKJV 2 Timothy 1:7) and a personal favorite when I feel my thoughts running wild.

So where is the line?  I mean, even after I decided I wouldn’t let fear of my ex rule my life, I was still cautious. I kept my alarm system on.  Parked in my garage so no one knew I was home. Stayed off posting where I was on social media (something to this day I am still aware of, and will often post only after I leave a location) and that’s just for starters. I didn’t just say, “Well I’m not afraid and so I’ll walk down the train tracks with the train coming!” (Back to that whole “sound mind” thing.)

I still don’t want to eat inside a restaurant and my daughter thinks it’s crazy.

I admit, I still wash all my groceries which I also know the “experts” are saying we really don’t have to do anymore, but for some reason it makes me feel better thinking of all those people who touch my  food.

Neckgators make me nervous because they are COVID sieves and might be the equivalent of wearing nothing.  Like everything concerning COVID-19, the data on this changes weekly.

And I may or may not be the person who complained at Physical Therapy because no one was properly wearing a mask, including the receptionist who took her’s off completely to walk around prompting everyone else to think it was fine to do the same. And I may or may not now book my appointments at the end of the day so I am usually the only one there and the receptionist who was reprimanded after my complaining is gone for the day. (I have been warned by caring friends…if she ever offers me a coffee I should politely decline.)

With all of this though, I know that I won’t see my mom.  God forbid I am the one who unknowingly gives her COVID and she dies. My sister would never, and I mean never, forgive me.  Openly, I think my mom has a high likelihood of dying from COIVD. Not because of her age or because she has zero underlying health conditions and is probably healthier than I am, but simply because she believes it will kill her.  What we believe is powerful.  What we fear is more powerful. ( Job 3:25) And science proves to us fear destroys the immune system. So yeah, I’m not gonna be the one who kills off mom.

But it still hurts my heart.  Not just for my mom but for our country.

I think of the long-term financial devastation for small business owners. Restaurants that are closing, families that are behind on their mortgage, rent payments and utility payments.

I think of the child who just shot himself on a live zoom class during virtual school.  I guess school shootings still happen even if you’re remote.

I think of the vendors who rely on the holiday selling season for their craft shows which have been canceled. Those people who lost their income to Amazon and Cyber Monday.

I think of all the nonprofits who rely on 5K’s and in person Gala’s to raise money for very important causes in our country, ones that affect more than .019%.

I think it’ll be a few years before we see the mass financial devastation our choices have caused.

And I wonder if it’s worth it for .019%?

I know it’s worth it to the almost 300,000 families who lost family members. It matters to them.

But it also matters to the families of the 10,000 children that die every day from starvation. (Everyday. That’s 40,000 in four days.) Nobody has invested $9 billion dollars in the last eight months to change that. But, I guess that’s because the majority of those children we don’t know and they’re a different color.

I guess it matters of the families of the of the 261 alcoholics that die every day.  But on election night, “Where is the nearest liquor store” was the number one searched  Google term.

I bet it matters to the 97,966 business owners and all their employees who (as of Sept 2020) have permanently closed their businesses. An according to Kevin Kuhlman, VP of the National Federation of Independent Business,  “If economic trends continue at this rate, one in five business owner anticipates they won’t be able to make it until the end of the year.”  That’s a lot of employees out of work and a lot of money relocated to a handful of large corporations as consumers take their shopping elsewhere.

I think the biggest thing this virus should cause us to do is stop and think. Think about our choices, the way we go through life, the way we treat other people and just what we prioritize.

Just like my ex-husband, I don’t know if COVID will take my life, but I do know that it won’t take my peace. I do know I won’t let it control me with fear. Regardless if I live or die, I will not be afraid.

The choice is ours.  

Photo by Jon Tyson on Unsplash

I Don’t Ski ~ And Other Reasons I’m Undateable In Denver

I was broken up with because I don’t ski. Only in Colorado huh? I’m too Jersey apparently. REI is a strange place to me. (It makes me jonesin for glitter and stilettos) I don’t get hiking (why are you walking aimlessly in the woods?) I don’t get camping (you work all week to make money to pay a mortgage for a home with lighting, heat, running water, and a soft bed and now you want to set evolution back millions of years and sleep on the dirt?) I don’t play volleyball, softball, hockey, lacrosse, basketball, or any other sport. (Even though I’m 5’10”) I don’t mountain bike (I actually don’t know how to ride a bike and that saying “you never forget” isn’t true) and I don’t like the cold or trees. (unless they’re palms)

So apparently this makes me Undateable in Denver.

In my defense I actually don’t know if I like these things or not. (with the exception of the cold – I know I don’t like the cold. 100% sure on this one. I seem to get colder faster than other people. I blame it on the fact my body temp is 97.6 – 1 degree off. This is totally unscientific but my ex used to say I was a lizard – a cold blooded reptile. Although maybe he wasn’t talking about my body temp. There is a reason he is my ex)

So correction. It’s not that I DON’T ski; it’s that I’ve never been skiing.

I have been to REI. Once. My cousin dragged me there to get hiking shoes. While immersed in tents, skis, gore-tex, and those funny clips for repelling, I was inspired to get a little “Coloradan” & get a pair of snow shoes. I like nature, I like animals, I like the quite, away from cell phones, internet, and my to do list. I thought this might be the perfect Colorado activity. I had a momentary flash of myself dressed in a cute snow suite (of course I was 15 lbs thinner in my momentary day dream) snowshoeing through a beautiful pristine almost cinematic setting watching cute animals prance around the fields like little ballerinas and I think there might have been Enya playing in the background of my fantasy. Until my cousin snapped me back to reality explaining that since I don’t get hiking snowshoeing is like hiking…but in the cold. Oh. Huh? Guess I didn’t think of it like that. Suddenly a red frost bitten nose, wind whipping into my face, and snow getting stuck in that space between my gloves and my sleeves that makes me want to crawl out of my skin invaded my fantasy and all snowshoeing ideas vanished instantly, prancing fawns and all.

I never really got the whole camping thing. Seems like a lot of work to sleep on the ground. Yet I’ve only been camping (real camping) once. With my ex. Who is a narcissist who thinks he knows everything. I slept on bumpy rocky ground, ate hot dogs for dinner, soggy food for breakfast, and basically after we (and by we, I mean he) set up the tent we sat around for 24 hours in the same spot. I was so bored. There was one good thing that came out of that camping trip. My daughter Emily. (who should have been named Evan because we were camping on Mount Evans). 2 ½ years trying to get pregnant and a camping trip with tequila and I get knocked up in no time. So can I really say I hate camping or just hate camping with my ex? I hated life with my ex so should I really expect camping to be that different?

I never played sports either. I was too busy in dance class or drama club. I started competitive dancing, learning choreography, being vice president of the community service club, a retreat leader at my church, and president of the Latin club (don’t laugh). I never thought about joining soccer and having my nose broken 3 times the way one of my best friends did. I skipped gym class and even failed gym one semester resenting that the school felt I needed “exercise” when I was dancing 4-5 days a week for hours at a time. And so now, 16 years later, I’m undateable in Denver.

I learned to ride a bike as a kid. Flipped over my handle bars once and never got back on. So don’t know if I would like to bike or not. I think the last time I was on a bike was in 5th grade. Who knows if I would like it? I’m always in awe of the guys who bike from Boulder up to the top of Mt Evans and then back. I’m in awe of their butts actually. I think the term “buns of steel” came from them. I never really knew anyone who biked. I mean I’m from Jersey remember?

And so now at 34 I sit here realizing I don’t know what I like. I feel like Julia Roberts in the movie “Runaway Bride.” She can’t commit to one guy because she doesn’t know what she likes. Even to the point of how she likes her eggs (At least I know I like mine over easy)

So now I am about to embark on a personal discovery. To find out what I like. I seem to know more about what I don’t like in life right now then what I do. I know what I don’t want in a relationship more than what I do want. I know what I don’t want in a career more than what I do. I know more about where I don’t want to live more than where I do. More of what I’m scared of my life looking like more than what my souls deepest desire really is.

So here is my list of what I don’t like:

I don’t like:

• Video games
• Beer
• Being cold
• Lairs
• Domestic Violence offenders
• Shrimp
• Snakes
• Horror movies
• Paris
• Geometry
• Children who wiggle loose teeth
• Basketball (I have enough of a memory from high school to know I can’t dripple for shit)
• Anti-Americans who still live in America
• Heavy metal music
• Hate websites
• Cold wind that stings my ears and leaves them stinging even after I go inside
• Fiction books
• Telephone automated answering systems where you can’t reach a real person for 30 min without 70 million prompts (and pressing 0 just sends you back to the main menu)
• cancer
• Gardening (the whole dirt thing ruins it for me)
• Palmetto bugs
• Scotch
• The movie “Clock Work Orange”
• Football on TV
• cigarettes
• Ugly shoes
• spiders
• Curious George (the monkey never listens to the rules, disobeys, gets in trouble, causes problems for everyone else and then miraculous saves the day and is rewarded in the end…and this is the book we give our kids???)
• Mess & Clutter (yet I still haven’t found away to escape it)
• Feelings of isolation
• People who use their religion to be bigoted, judgmental, arrogant & condemning
• Steak cooked rare
• Overcast skies and gray weather
• McDonalds Burgers or Chicken nuggets
• One of the yoga teachers at my gym. Her voice just annoys me.

But here’s the thing, it seems this list is always changing. I would put “ferrets” on it now but in high school my friend had pet ferrets I loved. (Always hated snakes. That hasn’t changed- they creep me out). And Curry. 3 weeks ago I would have put curry on my list. Yet just last week I had curry on chicken and rice and loved it! So maybe it’s true, the only thing constant is change. Isn’t there a theory that even our allergies change every 7 years? So what I don’t like now maybe I’ll love in 7 years? I’ll become a tree hugging, mountain climbing, shrimp eating, and basketball player. Ok probably not.

Fortunately I have the best friends in the world (really sorry, mine are better). They love me and accept me Jersey and all. They have been through Divorce Parties, Ex in Jail parties and all my crazy boy stories in-between. They have loved me from cancer to court. From Lodo to Littleton. I am blessed. There’s a quote that “love is the gift of oneself.” They appreciate my gift and I feel overwhelmed by theirs. They don’t think I’m undateable. So this weekend they are taking me to play volleyball. I will soon find out if my wrists (which are just a little over 1 inch wide) can take huge hard scary volleyballs being thrown at them.

I am also going camping in a few a weeks. (not planning on getting knocked up this time).

So I am about to find out just how Coloradoan I really am. Will I have fun or add it to my “What I don’t like list?” I don’t know. But this Jersey girl is about to find out.

Love Bites.

Love Bites.

That’s a stark contrast to Corinthians 13:4-13. “ Love is patient, love is kind. it does not envy, it does not boast, it is not proud.  It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil, but rejoices with the truth. It always protects, always trusts, always hopes, always preserves.”

Love trusts huh?  I am very aware the Bible does not preface this concept with “young love trusts,” or “first love trusts,” or “innocent naïve never been hurt, stabbed in the back, lied to or deceived” love trusts. It’s simply is love trusts.

And that’s the one I struggle with.  I wonder if that’s why 2^nd marriages have the lowest success rate.  Because once you’ve been burned you don’t trust. Once your heart has been crushed, mutilated and is unrecognizable as anything other than dog food it feels too hard to trust. And so you miss it. You miss the chance to succeed in the second marriage because you have love without trust.

The last 3 years have rocked my world. Shaken my beliefs. Shattered my judgments, and brought me crashing to my knees in supplication.  I view life, people, and love differently now. I am all too aware of our frailties. Our hurts. Our scars. And our relentless desire to feel loved.  Special. Important.  Yet we each carry so much baggage.  Hurt. Disappointments. Unmet expectations. Tears. Scars. I see people as so fragile now.  The founder of the company I work with was so right when she said everyone wears a sign that says “Make me Feel Important.” I’ve heard that saying over and over in the last 14 years and yet for the 1^st time those words now sound different to me.  Make me feel important.  Isn’t that truly what everyone wants?  Children want their parents to make them feel important. Loved. Safe. Secure.  Wives and Husbands want their spouses to make them feel important.  Loved. Honored, desirable. Employees want their bosses to make them feel important. Appreciated. Acknowledged. Integral to the company’s success.  We wander through life looking for people to validate us. Believe in us. Make us feel important. Special. Loved.

It’s why that beginning of a relationship is so sweet.  When you’re caught up in the euphoria of love you make the other person feel important.  You think about them constantly. You do extra nice things for them.  You shower them with your love.  They feel special. You feel special. Then complacency settles in.  Boredom. Familiarity.  And suddenly I don’t feel so special anymore.  You don’t feel so special. And we start looking for that next person who will temporarily make us feel important.

I asked my manfriend (I still feel ridiculous calling a 41 year old man my “boyfriend” no matter how young he looks)  anyway I asked my manfriend why he thinks men cheat.  He said it’s not the sex they want. It’s the woman who makes them feel special, valued, respected, and important.  While I’m not totally sold on the concept that it’s not just a hot piece of ass they want to bang, he might have a point. 

Isn’t it the old stereotype – this guys is at work with his secretary who is dressed up for work, smells good, has on makeup, heels, and she is telling him how great he is? Encouraging him about his work, making him feel important. Then he goes home to the woman who cleans the skid marks off his briefs, literally feeds his children off her body, and then wipes the toilet he shits on and yet this doesn’t make him feel important and he starts screwing the secretary. 

Or (let’s not totally ram the men) the stereotype of the woman at home?  Shopping with her husband’s platinum card, living in the huge house he is paying the mortgage on, and traveling around the world on trips he’s paid for. Yet she’s f-ing the pool guy because he smiles at her and tells her she looks beautiful, while poor hubby is still half asleep shelping off to work to pay for the pool guy, too tired notice how she looks.  (Ok, I’m jaded, I don’t think this stereotype happens nearly as often but I would like kudos for at least trying to not be biased.)

So why am I so scared of a relationship?  It goes back to Corinthians “love trusts.”  I am scared if I trust someone with my love they will hurt it. They will not guard it like the delicate fragile spirit it is. They will take it for granted. They will not appreciate it.  They will discard it, hurt it, throw it away, stomp on it, and kill it.  Yet when I’m totally honest with myself (which I find myself doing at 1:30 am when I can’t sleep and am suffering from a temporary twinge of regret for canceling my life sucking cable) am I to be trusted with someone else’s love?  Do I guard it like the delicate fragile spirit it is?  Or do I let my own insecurities, lack of patience, guarded feelings, wounded spirit, distrust, anger, guilt, frustration, and sometimes totally selfish attitude get in the way?  Do I always operate from a spirit of love and kindness and compassion or do I protect myself first? My needs, my wants, my desire to feel important. 

I spent 8 years in a marriage where I put the other person’s needs first. I even moved across the country to support their need to not live in NJ.  I always thought I did this unselfishly.  Because I wanted what was best for them.  But maybe it was selfish all along. Maybe it was selfish because I had too much pride to read the writing on the wall and acknowledge this person was lying to me six ways to Sunday.  Maybe my ego was too big to admit my parents were right and I shouldn’t have married him.  Maybe I was too scared to be alone, to FAIL at something, something as important as marriage that I was willing to sacrifice my happiness, my joy, my spirit and my soul itself to stay married.   

Maybe I stayed married to fulfill my needs not his.  Yes, I was lied to. Yes, I was deceived in ways no one should ever be.  And yes, I was hurt emotionally, financially and finally physically.  But maybe, just maybe, my marriage served my need to feel important, even if it was to a person who first would kill my spirit and then threaten to kill me. 

So now where do I go?  I will never have naive, unhurt, innocent love again.  This heart carries too many scars. Too many memories of pain, hopelessness, and isolation.  The bible says God heals all wounds and he binds up the broken hearted.  Yet I’m still brokenhearted in many ways.  My manfriend at times calls me a beautiful shade of green.  (Jaded not envious)  Another friend told me I keep finding the creeps because that’s what I expect and we all know the saying “you get what you expect.”  And yet now I have this wonderful man in my life, who brings his own set of luggage with him including two failed marriages.  I openly acknowledge I don’t just travel with baggage; I bring my whole storage unit with me.  I have to give him credit for taking me storage unit and all.  But we struggle.  It seems someone’s feelings are always getting hurt. Someone is always getting disappointed.  We acknowledge that relationships fail because of unmet expectations. We both hate relationship precisely because of those expectations. The expectations we have of the other person and the expectations they have of us.

Yet maybe those expectation are simply to make the other person feel important and for the other person to make us feel important.    Then why do we complicate it so much?  Why do feelings get hurt, tempers come out, frustrations mount, and walls go up?  When that happens I want to run.  I question if it’s just part of relationships or if it’s this particular person who is just toxic to me. I question the balance between “working” at a relationship and slowing dying an agonizing soul quenching spiritual death.  One that will leave me lifeless and lying in a heap on my bathroom carpet, in the fetal position, comforting myself with the fact I will never allow myself to be duped again and blinded by this callus feeling called love.

I keep going back to Corinthians. 

“Love is patient.”  I am not patient

“Love is kind.” Ok, I’m kind

“It does not envy.” Um can you elaborate on “envy?”

“It does not boast.” Hmmm trying to remember if I boosted this week….

“It is not proud.” My pride does get in the way – here I am guiltily of being unloving. My pride stops me from just saying “I’M SORRY.” It nudges me toward justification, defense and explaining away my actions.

“It is not rude.”  I don’t think I’m rude but, again, I have to acknowledge I’m from NJ so this may be interpreted differently in tree hugging, sinagrab buying, non-car-honking, allowing people to cut in front of you on the highway, Colorado.

“It is not self-seeking.” Guilty again. I am self seeking. I want to feel important remember? Ugh, this one is going to be hard.

“It is not easily angered.” Damn again – I’m Irish.  I should get a pass on this one simply based on genetics.  Although God created the Irish.  I bet He just wanted to F with us.

“It keeps no record of wrongs.” See it’s getting harder?  Doesn’t it seem every fight starts on one thing but brings up 5 other things that happened last week?  I especially like when I say “I even did this (insert example)…and didn’t say anything!” or “YOU even did this… (insert example) and I didn’t say anything!” yet secretly acknowledging that no longer counts because I’m saying it now….double yuk on this one.

“Love does not delight in evil but rejoices with the truth.” Ok I rejoice in truth. I’ll dance, wave pom poms, and run naked in the street for integrity & trust.  Kinda comes with the territory when you spent almost a decade with a pathological liar who couldn’t even tell you what they had for lunch without lying.

“It always protects.” Myself maybe. Do I always protect the other person? Their feelings? Their insecurities? Their hurts? Their love like the fragile delicate sprit it is? Uh… no.

“Always trusts.” Really does God just want to frustrate me? This one makes me feel like I just can’t win.

“Always hopes.” Hope. An interesting concept.   Elizabeth Gilbert in her book “Committed” says “Second marriage is the triumph of hope over experience” I like that.

“Always perseveres.”  Sorry big guy up there ~ 50% of married American’s would disagree with this.  And of the 50% left, statistically only 2 of them are happy about the fact that love persevered.

So where does that leave me?  Craving the intimacy, support, acceptance, peace, stability, friendship, companionship, chemistry, that comes from love but scared of the hurt, complacency, boredom, infidelity, distrust, and pain that can come with love.

If you told me I had a 20% chance of NOT being hit by a train if I walked on the tracks would I walk on them? Yet with only 2 out of 10 marriages considering themselves happy & successful marriages I have to question our sanity.  Now love doesn’t need to lead to marriage – I get that and that’s a whole other blog with a whole other struggle for another day.  But for simplicities sake if it does, if ultimately that’s why 9 out of 10 Americans get married, then where does that leave me?  Walking on the train tracks is scary enough, now image after being married walking on those tracks with a broken arm, limp leg, fractured rib, and dislocated jaw remembering exactly what it felt like to be run over by that train and jumping off the tracks every times the wind shifts in fear of being run over again.

I don’t have it figured out. I pity the poor man who is crazy enough to try to figure it out with me and my storage unit of baggage.   I pray. I hope. I get frustrated, angry, jealous (hey ladies can you please STOP telling my manfriend you’re physically attracted to him and that he looked soooo good when you ran in to US together? And YES in response to your text… he is happy!) and defensive.  I want love that trusts. I want love that is kind …always…even when experiencing all those other angry feelings.  I want love that preservers.   

I wonder if we actually have 1 person we are supposed to be with. Or is it simply, we find one person, who we like enough, to make them the one person we are willing to work for to be with? I think maybe I should spend more time becoming the type of person that someone else would want to pick me to be the one person they would want to work for to be with vs. trying to find that one person.  Is it that I need to be all those Corinthians things first before I can expect someone else to be all those things for me?  Well then, deep breath, I have my work cut out for me.  

 

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’M SORRY….

It’s 2am. I log onto facebook (yes I’m addicted) I see the post. One of the families I’ve become close to lost their beautiful daughter to cancer tonight. It had been a LOOONG battle. Reality hits you in the face & a mental battle starts. A mental battle not to let fear win.

Emily has been doing so well it’s easy to “forget” she has cancer. HAD cancer. Well, I guess her doctors would say she still “has” cancer. She is still undergoing cancer treatment for 6 more months. She still is on the “Cancer Kid Roster” and her “Pediatrician” is an Oncologist. So I guess technically she “has” cancer. Her last scan was clear. Her last bone marrow aspirate was clear. I tell her she HAD cancer. She doesn’t anymore. Now we just keep fighting to keep it from coming back.

We’ve been at home 2 weeks. It seems like forever. She’s playing, laughing, and constantly checking the front window to see if our new neighbors are outside with their 2 little girls. Kids she can play with. Every day she asks if “the girls” will be outside. Desperate for children to play with my heart aches at her plead for normalcy. These are the most “normal” two weeks we’ve had in almost 10 months. Well, she still won’t eat and carries around a canvas bag holding the TPN bag that infuses nutrients into her 12 hours a day– keeping her alive intravenously. But her hair is growing back. She hasn’t had an infection in over a month. No more daily temp checks. We’re down to just 7 meds a day. And I’ve gotten used to the “whats?” as we wait on her hearing aids. It’s so easy to think we are in the clear.

And then I read that post at 2am. Another child has died. That’s the 4th in the span of just a few months. And those are only the ones I know. Another beautiful child, who fought and fought and lived the last year of her life in a hospital bed, to lose her battle. A family that prayed, cried, and kept a positive attitude. A mother who lost the baby that she once held in her arms and imagined her future and who she would become.

Reality slaps you in the face at 2am. The scans may be clean but my child has cancer. Cancer kills. Cancer takes dreams and goals and futures without bias. Cancer kills children. Children who fight and win the battles only to lose the war. If the devil created a disease cancer would be it. It quietly kills your spirit before it kills your body. Cancer. I have emotionally detached myself from the word. I am careful what I say. What words I give power too. “Emily is undergoing cancer treatment.” “Emily had a tumor.” “Emily’s scans are clear of cancer.” “Emily will be a person who had cancer.” Emily. My child. The only saving grace from an 8 year abusive marriage. The child who gave me the will to keep going when I was so deep in depression at the end of my marriage I didn’t care about anything, even getting out of bed. Emily, the child who was my reason for putting one foot in front of the other when my world collapsed, her dad was stalking me, and I went to bed each night with my alarm key and cell phone next to my pillow. The child that each day gives me a reason to not give up.

I climb into the toddler bed with her & just hold her and listen to her sleep. Tears streaming and asking God to forgive me for the moments that I get frustrated with her & don’t appreciate every SECOND I have with her. This past week flashes before me.

Getting frustrated that it was 10pm and she STILL wouldn’t go to sleep. That every time I left the room she’d start crying and get of bed.

“Em I told you I was going downstairs to check on my bagel” ~ “ BUT I MISSED YOU!”
“Em I told you I was going to the bathroom” ~ “BUT I NEED YOU!”
“Em I told you I was going to brush my teeth” ~ “BUT I COULDN’T SEE YOU!”
“Em I told you I was going to wash my face” ~ “BUT I DIDN’T WANT YOU TO!”
“Em I told you not to get out of bed!” ~ “BUT I HAD TOO!”

And then the 1 millionth time she said “Mommy??!!???”
and I said, “Em just stop! Don’t’ ask me another question!”

And then finally when I said, “Em, I’m beat I’m going to bed.”
And she asked. “Mommy what if I need to puke can I call you?”
“Yes Em.”
“Will you wake up and hear me?”
“Yes Em.”
“Will you come get me?”
“ Yes Em.”
“Will you get a me a puke bucket?”
“Yes Em, just go to sleep!”
“ Mommy?”
“ Yes Em,?” with mounting exasperation.
“ Will you get me a tissue to wipe my face if I puke?”
“No Em just use your sheets!”

But now it’s 2am. I’m overcome with guilt and begging God to forgive me I wasn’t grateful I was tucking her into her own bed and not a hospital bed.

Forgive me God.

I’m sorry for every time I resent having to get 4 syringes, 2 needles, 2 vitamin vials, blue connectors, saline, a pump, a new battery, tubing that I can never get to connect properly and end up screaming at and wanting to throw across the room, a giant bag of TPN and more alcohol prep pads then I can count. Instead of being grateful that science has created a way to keep my child alive while her stomach has shrunk so small that when she doesn’t eat she gets a hunger pain and when she does eat she still gets pain because her stomach has literally “forgotten” how to eat.

I’m sorry for every time I have to change a diaper and I’m mad she isn’t potty trained anymore after spending almost 9 months in a hospital bed. Instead of being grateful that pee and poop isn’t blood and vomit.

I’m sorry I resent that I can’t take her out to eat, go to pirate’s cove (because yes, I want to go) go to the outdoor summer music concerts (because yes, I want to go) or go on a picnic (still me who wants to go). Instead of being grateful I can sit on the couch, cuddle he,r and read her a book.

I’m sorry I resent watching my checking account dwindle from the cost of gas and having to drive back and forth to the hospital multiple times each week. Or the swipe, swipe of my debit card from all the meals I’ve had to buy at the hospital while we are there. Instead of being grateful I can drive back and forth and that I have a car to do that (instead of the families I see outside the hospital waiting for the bus), grateful I have money and people who’ve helped with gas, and that going back and forth means she’s winning her battle and isn’t in the PICU dying.

I’m sorry I sometimes feel relief even though she is crying hysterically that she has to go stay with her dad. Even when I’ve had to give her 2 business cards with my picture (in case she loses one) and promise multiple times I will call her and go over just as many times when I will pick her up, and have to give her a “mommy kiss” in her palm because a mommy kiss can’t be wiped off, and I watch her cry and ask for “just one more hug,” and then sob as her dad takes her. Because her going means I will have chance to get done what I need done, and sometimes it’s work but sometimes…. it’s just a break with my friends… and that’s when I feel even more guilty. Instead of being grateful that it’s only 10 days a month not 15.

I’m sorry I resent seeing piles and piles of toys scattered all over my family room and remind myself of my vow that I will be grateful for those bags of toys because toys mean Emily’s home with me.

I’m sorry I resent I turned down 3 dates in 2 weeks because I had her with me and I secretly dream of a “normal life” too. Instead of being grateful that she IS my life because without her my life would never be “normal” again.

I’m sorry that as we get closer to the end of treatment I start “planning” again. Setting goals for work and worrying about how I’ll manage Emily and working FT again. Instead of appreciating that I get to juggle work and Em, that daycare isn’t part of that plan, and that she is finally old enough to go with me for almost everything. Reminding myself that school is just around the corner and I need to appreciate this short precious time when she is with me before friends, sports, and homework takeover.

I’m sorry there is a part of me that dreads packing my suitcase this week to have to live back at the hospital. Instead of being grateful that Bio Therapy is available to Emily. Because it only became available nationally just over a year ago and increases her cure rate 15-20%.

I kiss her peach fuzz head. Her hair is growing back dark. The click click of her pump echoes in the dark. I’m grateful that at 5’10” I’m still small enough to fit in her toddler bed with her. I savor this moment just holding her. I can’t imagine my life without her. Without her constant barricade of questions, “mommies!” fits, demands and giggles.

I lay there in a mental war. Fear is attacking every corner of my mind. The 4 kids who have recently died. Their names, their faces, their parents faces, flash in my mind. Cancel. Cancel. I fight back. The colors of life death sign flashes past me. Cancel, I say. A picture of my life without Em fights to gain foothold in my mind. Cancel. Cancel. I refuse to let fear win. After Bio Therapy statistically 6.5 – 7 out of 10 children will never relapse. They will go onto to live their lives cancer free. Since you can’t have ½ a kid I round up to 7. 7 out of 10. Then there are kids who never make it to Bio Therapy. I remind myself of Emily’s Bone Marrow Conference. Her Doctor, standing at the board going over her next level of therapy and saying “if she makes it to Bio Therapy…..” I remember screaming at him in my head “YES she will make it! There is no IF.” And she has. She IS one of those kids. If 7 out of 10 make it why not her? I picture 7 healthy cancer free kids in my mind. I picture Emily as one of the 7. My mantra this year has been “Why not? Why not her?” If someone has to be the statistical 7 why not Emily? She is, after all, my Miracle Kid.

The next morning Emily wakes up asks me when she goes back to the hospital.

“Tomorrow.” I tell her. “We have to plan your party!” I say trying to make it fun. You can see the look of sadness come over her face. She knows what going to the hospital for a week will mean.

“It will be great Em. We can see Nanette, Melissa, Jocelyn, Anna all your favs.” She agrees. Life seems strange without these women, these nurses, who have become our family this year.

“And Emily,” I say (I hold up 5 fingers) “When you are done with this week you have just 4 more to do. Then you’re done with cancer!”

She peers at me and smiles, “Then I can have a normal life?” She asks. “Well, still checkups, but that’s it.”

“Yup, just checkups.” I respond.

“Mommy, will you hold my hand when I have to get the finger poke?” (She knows that checkups mean her broviac implant comes out and then her blood draws will be “finger pokes.”)

“Yes Em, I’ll hold your hand.”

“Ok Mom.” And she snuggles back in.

She reminds me that even after treatment cancer will always be part of her life.

We will never be “cancer free.”

Those regular checks ups will be constant reminders of her strength, her will, her victory…..

….and my gratefulness.

EM’S DAD HAS NO ASS

Em’s dad has no ass.

I on the other hand have a lot of booty for a white girl. This is not just my opinion, I was in a fashion show last year and came out of the restroom and these 2 gorgeous African American girls look me up and down and go “wow you got ass.”

Another time I was trying on clothes for a different fashion show. I step out of the dressing room. The stylist looks at me and says “you’re a white girl with a butt!”

Great.

So my ass which I have hated since I was a teenager now plagues me as I only attract men that like booty.  I will never attract a boob guy. I have none. 

If there was a procedure that magically migrated the fat from my booty to my boobs I’d be the first in line to sign up. (well as long as it didn’t involved needles and blood – can’t take blood!)

So I wonder how my daughter will be built.  She is already tall – always 90^th percentile. (poor girl) Will she be plagued with my Geraghty white girl booty or will she take after her dad’s no ass family.  I mean not a one of them – men or women – have ass. Nothing. Flat as can be.   I wonder how they can sit for extended periods of time without any padding down there?

So a few days ago we are driving in the car.

Em starts whining.

What now? (4 year olds apparently come with built in whining.)

She starts complaining her butt hurts in her car seat.

I ask “why is that Em?”

She dramatically cries

 “I don’t have a Geraghty butt I have a McLaughlin butt!”

And bursts into tears.

Well at least we know she gets her drama from me.

** Side note – a few short days after the traumatic incident reported above I was shocked to know that women in America want my butt!   Check it out….

ONE GOOD THING ABOUT HAVING THE RUG PULLED OUT FROM UNDER YA….EVERYONE KNOWS YOU’RE SITTING ON THE FLOOR

I am a happy person. Truly I am.

 I wonder why this is? If you look at my life some could argue I have very little to be happy about.  I lost my marriage and found out the man I spent 8 years with was a pathological liar and was finally arrested for assaulting me.  During the year that followed I learned that everything (and I mean everything!) he ever told me was a lie (jobs, friends, drug use, alcohol use, right down to the college he claimed he went to that’s printed in my wedding announcement…he made it up).  Then after I got divorced he didn’t pay the taxes, the debt, sign off on the title of our (now my) house (well it was always my house…I bought it and I was the only one on the mortgage but that’s for a different rant)  Anyway the list goes on.  I was struggling half way across the country from my family,  trying to pay bills, deal with the marital debt he left me with, take care of a house that needed more work then I have time for, and handle a 3 year old who was being physically and emotionally abused and was in therapy.  I was trying to piece my life back together and 9 months later my now 3 ½ year old was diagnosed with advanced cancer.  Since then I have moved into Children’s Hospital. Watched my business continue to slide downward, been subjected to severe control and power abuse with her father, watched my bank account dwindle, worry about how to pay bills , not have time (or the mental reserve) to get my act together and get back to work. And spend 100% of my energy cheering this kid through chemo, surgery, and now a bone marrow transplant. 

I would say it could be argued I just “put on a happy face.”

And yet that’s not true. It is a happy face. I am happy.

I am happy 7 months later Emily is still fighting cancer! She is HERE to fight her cancer. She has made it thru 6 rounds of chemo, 2 chest tubes, lung surgery, an 8 hour tumor removal surgery, and a bone marrow transplant.  She is 4 days into her 14 day radiation. I am happy she is a fighter and no one has told us to go home stop fighting.

I am happy I have a family who hates my ex more than I do. Ok seriously now. I am happy because I have a family that is willing to stand by me, help me out financially, and encourage me to keep fighting for my daughter’s safety.

I am happy that for 12 years I have been in a pink bubble called Mary Kay. Where I have learned to set goals, control my attitude, smile at everyone I meet, and be supported by the most incredible integrity Faith filled women on this planet.

I am happy that this is a season in my life. That it’s not forever. And that both Emily and I will be stronger people on the other side.

I am happy because now I have perspective. I went out the other night with a couple and the guy stormed off mad.  Who knows what they were arguing about.  They’ve been on and off for as long as I remember.  I am happy that I no longer need drama in my life. That my perspective has been changed forever. That it’s ok to disagree, even argue, it’s not ok to bring drama into your relationships. That I see the need for drama as a form of manipulation and insecurity. That I can pick and choose who I want in my life and I have the confidence to say “no thanks” when it comes to drama.

I am happy because my kid is fantastic.  She sticks my hand in her warm bath water and then when I’m pretending not to look she puts it under the cold water running from the faucet. And then when I pretend to be shocked and horrified she squeals in laughter – a laugh that makes me laugh.

I am happy because when I got to sleep at night in the pull out hospital bed next to Emily and I say “Emmie I love you” she says “Mommy I love you”

I am happy because in her bath yesterday she told me “Mommy I love you a million gazillion, bazillion, migillion, cadillion, pazillion” I told her I loved her that much plus 100. She said “I love you that much plus 1000”

I am happy because even though I’m no longer Top 10 in Colorado in Mary Kay. (right now I don’t think they even have a spot for where I am!)  I still have the skills and experience to rebuild where I was. My “stat reports” may have changed but I have not changed.

I am happy because Debbie Segal believes with more conviction then anyone I know that Emily will be ok. And Every time I am scared all I need to do is talk to her for 5 minutes and I’m ok

I am happy because no matter how bad things are I can always go dancing with Jaime and all will be right (or at least avoided for the moment)

I am happy because even with everything with my ex I would go back and do it all again just to have my daughter – even if she does have to fight thru her cancer

I am happy because 7 months ago Emily would cry on the door when I would leave. I was working like a crazy person trying to get my life back together. I was stressed and tired and just depressed.  I would tell my therapist I felt so unconnected. I would sit with Emily and she would just want to play and I wouldn’t know how to just be present with her and play. I felt numb.  My mind 1000 miles away filled with fear and worry and then guilt for not being able to just play. I would hold a toy in my hand and just look at it. And because of her cancer I now know how to play again.  Cancer gave me a chance to just be with her. To play with her. To laugh and be silly.  It gave me my relationship back with my daughter

I am happy because I am not alone. I value the people in my life more than the things in my life. Everything I have lost is material. Everything I have gained is priceless. I don’t get frustrated sitting in traffic anymore. I don’t feel like I need to defend or explain myself to people. I don’t care about the small things and I finally “get” the title of the book Don’t Sweat the Small Stuff…and it’s all Small stuff.  I see the world differently. I value the “temporariness,” that in a blink life will pass me by. I used to live in the future.  I will be happy “when”…when I’m married…when I am a sales director…when I have a baby…when I get a pink caddy.  Without even realizing it in the last 8 months that has changed. I am no longer happy when. I am happy now. Cancer forces me to not think “when” because I don’t know what the future holds.  Ironic that this is my life now. I am a planner. Emily was 2 and told me she wanted to rip the color coded calendar I had made us off the fridge. It broke my heart. Now I can’t plan more than a week at a time because you just don’t know where you’ll be. Will we be in the Hospital or home? With an infection? Without?  In recovery? In crisis? There is no planning with cancer. I am happy I don’t have to plan.

I am happy because it’s sunny. I live in a hepa filtered room. I am happy every time I walk outside and take deep breath and am grateful for the sun and the air and the breeze.

I am happy for sushi, and bagels from Jordyn, and tequila. I am happy that I grew up in NJ and I will forever have a better appreciation for good food then the natives who live here in Colorado (or the Midwesterners who migrated here…the worst! Basically should just lump them with the English)

I am happy when I get to put on stiletto sandals – even when I get strange looks from the Doctors. It reminds me I have a life outside of these four walls and eventually Em and I will be back in it

I am happy for Video chat and that Emily can see my sister who loves her more than anything and Emily loves her back just as much.

I am happy for music. I believe God created music because he wants us to sing.  I sing in the car. Alone, or with people. And when Em is in the car we sing together. Music makes my soul happy.

I am happy I don’t have to live up to expectations anymore. One good thing about having the rug pulled out from under ya….everyone knows you’re sitting on the floor.  I don’t have to pretend I have it all together. That it’s better than it is. I can just be happy and ok with the crisis that is around me

I am happy that I am no longer married. No matter how bad things are now I am free. I am not being manipulated, controlled, or brainwashed by someone who needs a psyche ward instead of a spot in my bed. I am happy I only have 1 child to take care of now, not 2

I am happy that I will never date someone who I would have to get up if my kitchen was on fire.

I am happy I listened to that annoying little voice in my head that said “call Paul” last fall. I argued with it for weeks. Talk about eating humble pie. But I did. And he’s great. And I’m happy he’s part of my life.

I am happy Erin Rose, Cory Johnson, Jamie Roberts, Savannah Murdock, & Devon Kerns are people I get to have in my energy field

I am happy that 6 years ago after being in CO 2 weeks I saw an ad to audition for the Bovine Metropolis Theater and met Denise, and Eric and they just make Denver a better place to live.  

I am happy because I have the most amazing Mary Kay director sisters ~ Deb S, Meara B, Shari S, Yvette A, Pam L, Vanessa M, Sentra H Susan M, Elizabeth M, Sally Ann Q, Suzy K, Lise C, Maryann C, Alexa T, Ronnie K, Kathy P, Tracy G, Judi R, Kelly J, Piper P, Kathy P, Wilma D, and all the others I’m forgetting to add

I am happy Chris Gallegos cracks me up and makes me feel like a million bucks

I am happy Jordyn has the best bed, best Stromboli, best bagels, best hug, and best heart and I am lucky enough to have him in my life

I am happy because Bethany, Jon and Becky and Alyssa are 4 people who have hearts bigger than Santa

I am happy because Brad is my man angel

I wonder why I’m happy. Is it a genetic pre-disposition? Is it 12 years of MK attitude training that it’s an actual choice? Is it the whole Zen Buddhist minimalistic theory…you take away the material and you realize what you really have? What makes someone happy and someone sad? When my marriage was falling apart (oh that, and my ex was threatening to kill me) I was diagnosed with situational anxiety and depression. I kept thinking “what’s wrong with me???” *note to self..there is nothing wrong with you, you were married to a crazy person, you have a perfect child, it was still worth it*  I find it strange that at that point in my life – when I had a healthy child, choices (I mean I could have filed for divorce) and still had a solid business…I was depressed. Now I have a child with cancer, less choices (Per-CO law I’m stuck here till Em is 18 or my ex dies, whichever comes sooner), and have lost much of what I built in my business. Yet now, I’m happy. Really in my soul happy. Different then stressed. I’m still stressed beyond belief. Stressed about the pile of bills on my desk. Stressed that my judicial review will not be accepted and my alcoholic ex husband will still be allowed to administer medication s to our cancer baby.  Stressed that my mother is coming back from NJ, moving back into my house, and has no plans to actually leave. Stressed that my car program is “up” in Mary Kay and for the first time in 10 years I have to “work” to earn a car. Stressed that I don’t have anyone to facilitate exchanges when Emily is discharged and her dad is going to hang our parenting plan over my head. Yet before stressed = unhappiness to me. Stressed made me depressed. Now stress, yes, it’s part of my life. And yes, it’s there and yes, I’m happy anyway. 

My happiness isn’t linked to the stress or lack thereof in my life. My happiness isn’t linked to an event or an achievement or an amount in my bank account.  My happiness isn’t linked to a relationship, a holiday, an accolade, or a vacation. My happiness if found in the mundane. In giving my 4 year old a bath. In pushing her on a swing. In that moment right before I fall asleep and think she’s made it another day. (and grateful I have too.)  In that moment when the Dr is telling me how much her orthotics are going to cost every year out of pocket and I’m grateful that I’m already calculating what that will be by the time she is 18.  In BBQ’s, snuggling, Ice cream, giggling, dancing in the elevator and then in the clinic waiting room to Beyonce’s “Single Ladies.” Even grocery shopping. These are the moments that make me happy.

So now,

I’m happy.

Should I say “Thanks Cancer?”

Well Ok even I’m not that Happy.

Em’s Dad Farts

I have always told Emily that God took “all the good parts of your dad and all the good parts of your mom and rolled them together and made you!” 

Very openly, I can not think of one redeeming quality that her dad processes.   One “good part.”  So I finally decided  that only God alone would know what “redeeming qualities” he might have …and there MUST be something since God created everyone and God is good.  So for now, exactly what these qualities are,  remain a spiritual mystery. 

When I say this people assume I’m bitter and angry and can’t see past my anger to acknowledge his good qualities.  Not at all. It is merely fact that I don’t know what his good qualities are because I don’t know who he is…I mean REALLY is…not the person he pretended to be for 8 years. 

I know that he never really was employed with Rocky Mountain Search and Rescue and that the “school” he attended (that is printed in my wedding announcement) is really a school for kids grades K -12.  I know that he did not, in fact, save a man moments from dying…the way his first letter to me indicated. I know that he did not watch a man drown and that the therapy he was attending with me for post traumatic stress never actually happened. I now find it ironic that the same man who for 8 years said “what kind of man hits his wife? how tough are you that you can beat up a woman” then spent a night in jail for 3rd degree assault against me. I know that the person who I trusted enough to move 1/2 way across the country for never once told me the truth about anytinng…ever. 

When my attorney asked me after my divorce hearing what it felt like looking at him I was honest when I said …”Nothing.”  It’s like looking at a stranger.  No, not “like” looking at a stranger.  It IS looking at a stranger. I have no idea who this man, who is the other half of my daughter, is.  Who he REALLY is.  Instead I know that he is a chameleon and will “become” whoever he needs to be to manipulate the current situation.  The lies that were my life are enough to fill a book.

How can I tell Emily what’s good about her dad when I don’t know who he is?  Yet I look at this beautiful, sensitive, dramatic, strong-willed, determined little girl and I know that there MUST be something good in her dad…something I can’t see…that made her. She is perfect. There is nothing about her I would change. So unless she was immaculately conceived (which I would almost believe except she physically looks like her dad) there is something incredibly wonderful that God took from her dad and put into her.

At night I’ll sit next to her and rub my hand over her forehead. I tell her she has “Aunt Jean’s forehead”.  (I used to tell her she had “Aunt Laura’s Crazy Wild hair” before she was bald!) Then I rub my hand over her brow, her “Dad’s brow.”  Then over her eyes. Her “Dad’s eyes.” Her “Grandma’s grey/green” eyes with “Mommy’s dark brown rims.”  I run my finger down her nose “Uncle Jamie’s nose.” Over her cheeks “Mommy’s cheeks.”  Over her lips “Mommy’s lips.” Down her arm to her fingers “Aunt Laura & Pop Pop’s fingers.” Then I trace her body from the top of her head to her toes and say “Mommy & Daddy’s long lean body.” She loves this. She says “Do it again!” and giggles. 

So tonight when she FARTS like a frat boy eating BBQ I almost gag.

“That, Em, was a fart that would make your dad proud.”

She looks at me without hesitation.

“That’s because my long lean body is made from you and dad.”

“Yeah Em? And where did that fart come from?”

She smiles without missing a beat “My dad.”

Another small reminder in the mist of everything, life is good. Afterall, I no longer sleep next to said farting dad.  Since Em loves the “gross stuff.” Maybe this is the quality she inherited from her dad…maybe this is the “good stuff” he donated in his genetic material…

She’s a quality farter.