I talked to my friend the other day. My friend...
As you're growing up, you might make friends with classmates
or with the girl who lives next door.
You find common interests,
and the groups can change over time.
If you get married and have children,
you might spend time with the mothers of their friends.
You may be fortunate enough to still gather occasionally
with girls you met way back in grammar school.
Perhaps you find yourself ringing in the New Year
with some members of your community.
Friends. Acquaintances. They're everywhere.
Throughout this whole process, you latch onto some with whom you feel a certain connection, a deep-rooted camaraderie or fellowship that exists on that extra level that draws you to those individuals who become your REALLY special friends. The handful that stays with you no matter what... even when the unthinkable happens. Isn't it wonderful to have those individuals in your life? Whatever would you do without them?
When you're the mother of a child with cancer though,
you find yourself communing with folks in the oddest places.
For instance, there's a woman across the room from you in the waiting area of Radiation Oncology. You're both sitting with girls who appear to be about the same age. Each of you has a smile plastered on your face as you chat with these young ladies, and you're flipping through the pages of magazines dated February 2001 while trying to think about something other than the fact that they're going to call these dear girls back to those rooms that house awful machines the size of garbage trucks and shove each of them inside one. And because the young lady you're sitting with is braver than you, she says ~
Mom, you don't have to come back with me anymore. I'm not scared. It doesn't hurt. I'm FINE!! ~ so you keep that beaming smile glued to your face when you'd really rather throw up right on the ugly table holding all the outdated magazines.
The minute your precious girls are led away, one right after the other, you lock eyes with this woman, and before you know it the powerful forces that emanate from the wombs of mothers who have birthed babies who go on to receive THE diagnosis pull you to seats right beside one another, and you're quickly blurting out ~
My daughter is 18. Yours too? She has metastatic sarcoma. Oh my God, yours too?! The tear ducts automatically switch to free-flow mode as you clutch one another's hands, and in those few minutes that it takes for those machines to swallow your daughters, blast them and spit them back out again you share your souls. You quickly rummage through your purses to find scraps of paper to scribble phone numbers and email addresses on, blow your noses to pretend you haven't been crying so that when your girls emerge they don't say ~
REALLY MOM? ... and you've made a friend.
Or another popular venue ~ the break room in the hospital ~ that mecca of "the regulars" that vaguely resembles your kitchen back home. The destination that breaks the trance-like state you've entered from staring at your child who's been lying in a bed with chemicals dripping into her for hours and hours and hours... hung by nurses wearing gloves and gowns to protect them from accidental contact with one drop of the poison, while you ponder the irony of ~ I consciously chose drug-free childbirth to protect her?! The room where newspapers strewn about might actually give you a clue as to what day it is. The space eventually found by dazed folks who shuffle down hallways wearing ratty T-shirts, slippers and pajama pants with elastic waists that have become the style of choice because they kindly accommodate the gain or loss of weight that accompanies the good news/bad news ride you've all been on for longer than you care to remember.
And while the normal population is still at home sleeping, you've again just risen from a bench that's maybe a foot wide and wiped crust from the side of your mouth ~ those remnants of drool that trickled out during the couple of hours when the familiar rhythmic sound of the IV pump eventually lulled you into blissful oblivion before you had to spring to attention to bar the door from the entourage of white coats trying to enter the peace of your predawn space again to question your sleeping teenager about the regularity of her bowel movements. Really? Who gives a shit at 5:32am?!
Now that your daughter has been spared the invasion, and from experience know that the precious state of serenity you'd achieved is broken and rumination will begin shortly, you've wandered down the hall to that room. While you're standing, waiting for your coffee to heat up in a microwave that stinks like blown up burritoes, in stumbles someone dressed like you. Your eyes meet, focus and you share that all-knowing glazed-over look of ~ Oh God, MY child has cancer too ~ and you sit down, begin to sip the coffee than now tastes like burritoes, and you barely notice because... you've made a friend.
You understand when the mother who called on the phone the other day says ~
Mary, I'm SO TIRED. ~ Oh God you know THAT kind of tired. The kind that results from trying to be the pillar of strength for the family for so long. The kind that gradually engulfed you like a thick fog while you attempted to take ALL the hits for your child so she didn't have to, even though you logically knew you couldn't but because you're the mother you WANTED to. The kind of tired that came from lying awake for three years while working to anticipate any danger lurking around the corner so you could intercept it before it DARED to affect her life any more than necessary.
I'm trying to let her make decisions, but I want to make sure she truly understands what will happen if she makes that choice. I know she's a young lady, an adult, but she's still my child and I want her to know how I feel, but it's her body and her life. Her life... the one that's so unlike that of her peers who are now blissfully off at college while she's home, pretty much forgotten. The life that consists of pain and drugs and machines and choices even much more complicated than ~ Should I sleep with him this weekend?
And you know, because you've watched your own daughter live that same lonely life and struggle to make those same complex decisions, the ones no one should be required to make at the age of 18. And so you listen and try to comfort your friend on the other end of the phone, and you can't say ~
everything will be fine ~ because everything is SO NOT FINE, and so you say ~
I KNOW. ~ and ~
You're a GREAT mom. ~ because she is... your friend is.
You understand when another mother, the one you met over three years ago when similar nightmares were beginning for both of you, doesn't have the energy to respond to your emails because she has recently updated her daughter's CaringBridge site after mustering the energy required to take a deep breath and spew the latest atrocities caused by the insidious brain tumor that has resided in her now-18-year-old's beautiful head. At the end of her summary, she states ~ I'm in Survival Mode ~ and you know EXACTLY what that means because that's precisely where you were a year ago.
The time beginning in August, when things began to spiral out of control quickly... downward, and now that you're a year away from it, you can view the roller coaster scene of ~ The cancer is going everywhere. but She's going to college! and We had to go for more radiation to (enter today's body part.) but We went to the state vollebyall finals with a brain tumor in her head making her lip numb and her right side weak! ~ with a clarity that didn't exist then.
Looking back, you feel a strange sense of gratitude, for without realizing it at the time you were numbed by the protective spell of a weird novocaine concoction of fear, acceptance and exhaustion ~ that awful shot of painful reality to the roof of your mouth that stings all the way up to your eyeball, but then renders you blissfully anesthetized as the drilling process, the REAL agony, begins. That insulating shield that causes you to walk around with a swollen face, an inability to eat properly and the propensity to drool all over yourself if you're not careful, that also allows you to SOMEHOW move forward with single-focused energy to do whatever it takes to make things the best they can be for your child who is going to leave you soon. You loved her more than life itself - that's how you did it all.
And she's doing this now... my friend, while I'm desperately trying to find my way in the next level of Survival Mode, where the shot is wearing off and my tongue can't help but search constantly for the missing tooth that was once there, I thought a permanent part of me, in that now-gaping hole of emptiness... my daughter, gone forever.
As the mothers of children with cancer, we've learned to perform the duties we thought only trained nurses did until our children got sick. (There should be some kind of GED equivalent to the RN degree for us.) Then we're taught to set pumps and connect bags of hydration fluids and chemotherapy drugs. We can free-hang Zofran and adjust the drop-rate with the flick of a thumb. We learn how to flush a port with saline and heparin to prevent clots and maintain good venous access. Our children's NG tubes run smoothly and we can clear a plugged catheter in the middle of the night after only a bit of mild hysteria. Proper timing of pain meds? Piece of cake! Over time, I developed a deeply personal love/hate relationship with Decadron.
And we've mastered the art of administering injections. Anyone out there need someone to give them their Neulasta shot? You know, that $3000 mega-hit in a vial that's delivered to your doorstep in a box (looks just like the package from Pottery Barn containing your new candlesticks, so be careful) by the Fed Ex man, guaranteed to boost your immune system so you can prepare for the next crash caused by your upcoming cycle of, oh say... that nasty Doxorubicin (the "red devil" that can cause heart damage) and Etoposide (watch those platelets bomb too) and Vincristine (so what if your toes are numb)? Step right up, I'll do it! No problem - No charge!
Feel free to Squeeze Erin's Teddy Bear and/or Dog.
I'm told the shot does burn,
and they both have lots of experience.
And then there are my Internet friends... and I consider them my friends even though we've not really met. In effect, we've sat across the country from one another in our own homes, sometimes at our desktops while typing purposefully with the determination to move forward and forge our new paths, and at other times while wrapped in our children's blankets curled up on the couch while pouring our grief into our laptops, wallowing in the all-consuming heartache of having watched our babies die before our eyes.
We find one another on CaringBridge and through blogs and referrals from others who have happened upon both our preaching, purging rants and our hope-filled intentions to make our children proud of the way we're still living, doing our very best to survive.
I treasure their narratives for they often articulate thoughts and lend valuable perspective when my guts are aching, my nerves are raw and my brain is straining to form a coherent sentence. Their personal stories of stoicism give me courage and their experiences help me feel less isolated. Sometimes they write a blog comment ~
I stand with you. or ~
I remember when my daughter/son ... ~ and in the dark hell of aloneness I can feel their hands reaching for mine.
It seems our aggregate wisdom is the sum of our shredded parts, as we unite on the common ground of having given our children over to a Higher Power, never dreaming this would be asked of us. Yet here we all are, reminding one another to breathe and live in the moment.
These days I work diligently to straddle the gap that is my existence, attempting to find balance between the world where I once so-happily lived and the life I was forced to enter
almost four years ago on December 15, 2006. Much initiative is required to maintain relationships, and on many days the scale tips heavily one way more than the other. It's an ongoing learning process, an enlightenment in the natural tendencies of the human race.
Where would I be without them ALL. My friends...
