I am so ready to get on with my life, but first I want to take a moment to say thank you to everyone who helped get me through the past 16 months since my diagnosis.
1. Gem
Look at that face. She is such a powerful motivator. And sweet, too.
No matter how rough things got, she was enough to get me out of bed – Even if that meant just going to the living room, and cuddling up with her on the floor.
It’s amazing how much she has grown up through this ordeal. Here she is just a week before I was diagnosed:
2. My Husband, Aaron
Aaron is my biggest cheerleader, the one who kept telling me that I CAN do this. He was the one who held me when I cried, and told me he would still love me no matter what, and made me feel sexy even missing a boob.
He wouldn’t let me get depressed, and he fills my life with music.
3. Mom
My mom was the one I could count on to drop everything, and come running at a moment’s notice
4. Friends who formed a little army of volunteers
Kristen, Mary Jane, Diane, Sommer, Carrie, Candice, Tim, Mel, Sharon, and Perry – I can’t begin to describe how much you helped me. From bringing meals, to babysitting Gem, to washing dishes, to just sitting with me or taking me outside for a walk, you really helped to carry me through.
5. The young women of the Young Survival Coalition
It’s one thing to experience sympathy and empathy, but nothing helps like meeting others who understand because they’ve been there. I have written about the Young Survival Coalition before, and I’m sure I will do so again and again and again going forward. These girls are my confidants, my hand-holders, my glass of wine with a side of giggles, and my sneaking out from a vegetarian retreat to bring back a side of bacon.
5. Debbie Cantwell and The Pink Daisy Project
A breast cancer survivor herself, Debbie started The Pink Daisy Project to help other young women deal with the overwhelming facts of everyday life that pile up while battling this disease. She came to my rescue by sending grocery cards so I could buy diapers, and hired a cleaning crew when I was too sick to deal with housekeeping. Debbie is truly a hero. Stay tuned: I’ll have more to say about Debbie in future posts. 🙂
6. Delia
Dee is one of my oldest friends, and she’s been there for me through thick and thin. When I was diagnosed, she flew out to be here with me during my mastectomy. She helped whip my house into shape while I was recovering, and watched the baby, and helped in too many ways to list in one post. She’s another one of those people that I can count on no matter what.
7. Old and New Friends; Some I’ve Never Met
Social media is an amazing phenomenon, and it has had a profound effect on my life. It’s brought me back into contact with old friends I haven’t seen in more than two decades, and it has introduced me to new friends, some I speak with every day, but have yet to meet face to face. Â These friends have followed me through the ups and downs, provided encouragement, hope, sometimes a little gift or cash, an ear, a shoulder – and often at 3 in the morning, when normal people aren’t available.
…
So now I’m done with treatment. I’m still contending with some of the side effects. I have some neuropathy, the fatigue is still slowing me down, and I’m typing with one hand because my arm is bound up to treat the lymphedema. But these are little, non-life-threatening issues, and we can deal with that.
Right now, my heart is just full of gratitude.
Now, we are looking forward. We are looking forward to Aaron getting a job. We are looking forward to me finishing my degree. We are looking forward to Gem being potty trained, and learning to read, and getting ready for pre-school. We are looking forward to a long, happy, and healthy life together.
The first rule of getting along with other people after you become a parent is don’t brag about your child all the time. Or ever, actually. I break that rule every day. I’m one of those annoying moms – always trotting out the latest cute or amazing thing that my gorgeous little girl did. If I wasn’t your mom, I’d nauseate you. Actually, I’m sure your tweener, teen, and early adult years will be consumed by me nauseating you. It’s in the job description. But I’m getting ahead of myself here.
So here I am, a mommy blogger, discussing rules about how parents shouldn’t brag about their kids all the time. But, again, it’s in the job description. I mean, really, if your mom isn’t utterly amazed by you, over the moon about you, if your mom doesn’t brag about you… who will? Â I don’t want to follow this train of thought too far, because the sad truth is that some kids don’t, for whatever reason, have someone who really goes to bat for them. Part of me wonders if this is the reason for the previously mentioned rule, but I know better. This rule rests on a much more shallow foundation.
The truth is, bragging moms are annoying.
On the other hand, if there is one place on earth I should be allowed to brag about my darling daughter, it should be on my own blog, in a letter directly to her. Prepare to be annoyed.
To lighten things up a bit, I’m going to limit this letter to bragging about about the adorable things you do imperfectly.
There is nothing that makes my heart smile quite like watching you put your green Hello Kitty rain boots on the wrong feet and dancing around the living room.
You pronounce applesauce and princess exactly the same way (“sausaus”).
I didn’t think you knew any numbers above ten, but last night we were looking at a book, and when we got to page 25, you said “five-twent.” I was sure I heard that wrong, but you turned the page and then said “six-twent.”
At the store the other day we were looking at stuffed animals, and you picked up the rhinoceros and called it a triceratops. How does a 2 year old store a four syllable word about a dinosaur with horn on it’s nose, and retrieve it at the appropriate time? I don’t care if you were wrong about the rhinoceros, I’m just blown away that you were wrong in such a cool way. I could never tell the dinosaurs apart (in fact, I had to go online and look it up), but from now on, I will always remember that the triceratops has a horn like a rhinoceros. See, parents learn things from their kids all the time.
I hope this doesn’t make you feel like you’ve been made fun of. Perfect is boring. It’s also an illusion. You can spend your life chasing perfection, but when it comes down to it, when you take stock of what you really love about someone, what makes your heart swell, generally the imperfections weigh in pretty heavily. That’s not to say you shouldn’t try your best, or try to improve. It means don’t be afraid to fail; don’t be afraid to try something because you won’t be perfect the first time. It means don’t let your stumbles paralyze you. Pick yourself up, and keep dancing, even if your boots are on the wrong feet.
Imperfections make us unique, approachable, and lovable. And you, my darling daughter, are infinitely lovable.
I like to think of myself as having superpowers. My favorite superpower is the ability to make things go away by not believing they are true. I’ve had a lot of practice using this superpower; I was diagnosed with stage 3 breast cancer while I was still breastfeeding my baby.
That was practice using this superpower, but no success.
One of the first things that hits you over the head with a cancer diagnosis, after confronting your mortality, is the understanding that you are not in control. Control is an illusion. This is a very difficult concept around which to wrap your brain.
We’re constantly bombarded with messages about how we are in control. Make a plan and execute it. Just do it. We are the product of our own choices. Metaphors abound: in the drivers seat, steer the ship, drive to success, master of your domain (giggle, snort – if you got this Seinfeld reference, you’re old like me).
There is a lot of truth in these ideas. We are the product of our own choices – to an extent. But there is so much we can not control. The child with neuroblastoma did nothing to deserve that disease. They did not earn it. Neither did I.
For all this time we spend juggling – super-moms with all their balls in the air at the same time – we also live with this fear that one dropped ball will bring them all down. If we miss a ball, a deadline, a dental appointment, 50,000-mile maintenance check, the world will keep on spinning whether we pick up the peices and run to rejoin the party, or throw our hands up in the air in defeat.
Some of the balls are going to drop.
I worried so much after my diagnosis: How am I going to effectively parent my child, keep up the house, finish my degree, and battle this disease? I realized that I could not keep all those balls in the air. I made a choice. I decided that parenting and health were my priorities, housekeeping would get attention as I had any to spare, and I took a leave of absence from school. A year later my daughter is happy and healthy as she enters her twos, I’m nearly done with treatment though still battling fatigue, my hair is starting to grow back, and in January I returned to school full time. But, my house is still a mess.
I’m still making choices about my priorities. My house still isn’t winning.
Martha Stewart has a large staff of well paid employees that help her pull off all that magic. I don’t have to be Martha Stewart, and most of us have no hope of having a large, well paid staff to make us look good. What you see is what you get. It’s just me, Baby. Lovable. Imperfect. Flawed. With mutant genes running amok.
I am letting go of the illusion of control
I don’t want to give you the impression that I’ve got this fatalist attitude where there’s not much sense in trying because there is no hope of success. I don’t believe that at all. I try. I work my butt off. I pour blood, sweat, and tears into motherhood, and everything else I do. But I’m learning to distinguish between the things I can control, and the things I can’t.
I can control whether I provide a quiet time and space for my daughter to take a nap
I can not control whether she goes to sleep
I can control the amount and quality of the food that I eat, and I can control the amount and quality of my exercize.
I can not control my weight
I can control my own reactions to my toddler’s behavior, and I can control whether she has been fed, and provided ample opportunity to play and rest.
I can not control whether she has a meltdown in public
I can provide sufficient towels and a bath mat
I can not control whether my husband soaks the bathroom floor when he gets out of the shower
I can fight like hell, do everything prescribed, and more
I can not control whether this cancer comes back
Life got so much easier when I stopped trying to unbelieve what I didn’t want to be true. I can’t control whether or not I have cancer, I can only control my reaction to that fact. A huge burden lifted when I stopped trying to control things over which I had no control. I can’t control everything. I don’t need to control everything. The fact that I don’t control everything doesn’t make me less of a person, less of a woman, less of a mother. It makes me human. It makes me vulnerable. It makes me brave and scared at the same time. It makes me real. And it makes me more empathetic to everyone else around me.
Sometimes, the best things in life are unplanned. Usually, the worst things in life are unplanned. Either way, survival, thriving, requires the ability to adapt. In order to incorporate this new reality into my life, I’ve got to accept it. The more time I spend thinking it just can’t be true, trying to control the uncontrollable, the longer it takes to find a way to make the best of the situation.
I used to work for a cruise/tour company that was smaller, and a bit more intimate than most. This gave us the flexibility to chase rabbit trails, and make impromptu itinerary changes to take advantage of opportunities as mother nature provided. The director used to say “we have an itinerary so we have something from which to deviate.” That’s a little closer to the way I live my life these days. I make plans and set goals, I work towards them, but I try to stay flexible enough to change as necessary. That helps with crisis management; it also makes it possible to savor rainbows, and jump on opportunities as they arise as well.
.
This week, the girls at SITS are discussing perfection and the art of letting go. Â Join the conversation (Linky included). We’re also using #SITSLettingGo on Twitter.
The first night I met him, he glared at me then leaned back a ways before slamming his head down on to the table. That thud of skull connecting with wood was so hard it made the walls shake and the windows rattle. I choked a bit on my heart, and my stomach churned with that nauseous fear that comes when everything is wrong. Very, very wrong. What were we doing with this kid in our home?
To say I wasn’t thrilled about my mom’s decision to take in foster kids was an understatement. That she was specifically interested in taking developmentally challenged kids, made it worse. This was a bad idea. I was sure of it.
Matt’s case manager told mom that he was a “head banger.” Those two little words were inadequate to describe the frequency and force with which his head made contact with any nearby hard surface.
He was difficult to look at. His brain had not developed properly, and he was born with cerebral palsy and hydrocephalus. His hair grew in funny little tufts around the patchwork of scars on his head. His face was scarred, and frequently bloody from the head banging. He couldn’t stand up straight, and could barely walk.
And he was angry. Mad. Furious at the world. And with good cause.
It was Matt’s story specifically that finalized my Mom’s decision to become a foster parent. At the time she first heard about him, he had been living in a motel with hired care givers taking shifts sitting with him in that room, because they could not find a home that would take him. He had extensive medical needs, that required a great deal of work to manage. And developmentally he was a two year old, still a baby.
He didn’t know what was going on; he just knew that most people were mean, and he didn’t know who to trust.
It was a long period of adjustment: him getting used to our large boisterous family, and us getting used to this new person in our midst with so many new needs (like needing help with toileting, among other things), and of course, that head banging.
But one day we discovered something. If you put your hand on the table, or wall, or whatever else was the target of his swiftly moving head, he would stop mid-swing. He would bang his head, he would hit things, he would break things, but he would not hit us.
That discovery started a little shift. For one thing, it helped us significantly cut down on the head banging by just putting a hand in the way. But it also started to change the way we saw him: self-destructive, yes, but not violent towards others.
He got easier to look at over time as well. Eventually, we started to see past all the scars, and notice other things, like that mischievous twinkle in his eye.
Matt was a little prankster, especially once he got comfortable with us. He was funny. He’d blame his farts on you. He’d pull your chair out as you were trying to sit down. If he was done with you, he’d dismiss you: “Bye!”
And he was gentle, so very gentle, especially with babies.
The obvious lesson here is about not judging the book by the cover, or the person by how they look. But there’s more. It wasn’t just the way Matt looked that was scary at first. It was his behavior that terrified us. Matt also taught us a lesson in looking past the angry in others – that the attitude is likely a hard-earned, self-protective shell, and not necessarily indicative of what’s inside. Its a difficult lesson, and one I forget frequently. But I’m still trying.
Over the years, Matt went through dozens of procedures and surgeries. His hydrocephalus was managed by a shunt that drained the excess fluid from his brain. That shunt frequently had issues, perhaps caused by the head-banging, but that pressure may have also been the cause of the the head banging – the pressure caused a great deal of pain, that bang momentarily equalizing the pressure.
He actually became quite popular, at school, at church, in the community. He passed away from complications of surgery when he was 24. He was still a toddler developmentally, but he was a happy toddler. When he died he was surrounded by his family, foster family perhaps, but family still. And he knew he was loved. His funeral was standing room only; the community had learned to love him as well.
It has been 11 years since his death, today would have been his 35th birthday. I still think of him often. He taught us so much about accepting others, and about resilience and redemption. I’m still learning that lesson about forgiving and understanding the angry.
I was in the back seat, pretending to sleep as we pulled into the driveway late after a long day of shopping. At five, and the oldest in a large family, the odds of Daddy carrying me into the house and up the stairs to my room were pretty slim. But that didn’t stop me from trying.
Most of the time, he’d wake me up and send me inside, but every once in a while my little ploy worked. Â I’d rest my head on his shoulder as we ascended the stairs, and ragdoll as he maneuvered me into my jammies. Â Then he would tuck me into bed, brush the hair from my face, and plant a kiss on my forehead. Â I relished those moments, soaking up the attention.
Parenthood has given me a new perspective on this memory. I wonder how transparent my motives were.  Did he know I was only pretending to sleep, and carry me in anyway?  Did he want to hold me as much as I wanted to be held? As a child, I only thought about how I had to compete with my brothers for attention and affection. It didn’t occur to me that my parents might crave those cuddles, too.
CoffeeJitters is an affiliate to a number of sites and services. I do not endorse products I don't love. I may receive compensation if you purchase items from links on this website.
