pediatric cancer – Mary Tyler Mom

March 24, 2013

Acorns in Cancerville

Yesterday marked six years since we moved to Cancerville, when our Donna was diagnosed with a rare and aggressive brain tumor, papillary meningioma. I write the name of the bastard because it is so neglected in the cancer world that there is no treatment for it. I like to call it out by name.

Yesterday was quite a different day than March 23, 2007. On that day, I awoke in a huge hospital room at Children’s Memorial in Chicago. There were six beds total in the room and it was on a respiratory floor. We were there because we had been hastily admitted the night before and it was the only bed available. Donna woke about 5 AM and vomited. I cleaned her up and sometime later was changing her diaper. I said to her what we always said during that routine, “Change your diaper, change your life!” It was one of our bits. She repeated it back to me, as she always did, but her words were slurred. Something was wrong. Terribly, terribly wrong.

Within moments, Donna crashed. Unresponsive. Just a little sack of potatoes in my terrorized arms. I called out for help, I rang the nurses. I called out for help again. The other parents in the room, all bleary and scared, looked at me without words. Their fearful eyes spoke volumes, though.

Within a couple of minutes a PICU doc was in the room. Dr. Kane was his name. He told me to follow them and I did. We ran through the halls. Or did we? I honestly can’t remember. I also can’t remember when Mary Tyler Dad got there. I called him at home after Donna vomited and we lived about 20 minutes away. I do, though, firmly remember him at my side when we learned from Dr. Kane just a few minutes later that Donna was sick. Very sick. “There is a mass in your daughter’s head.”

That is the moment we moved to Cancerville.

To mark six years in this place is both remarkable and perfectly ordinary. Cancerville is where we live, where we will continue to live. Like our zip code, it just is what it is. We have changed neighborhoods in Cancerville in the six years we have lived here. That first day six years ago we moved to a sub-division called Diagnosis Estates. Today we live in Grieving Heights, the least desirable sub-division.

But yesterday was a very different day than March 23, 2007. The sun was shining. The air was cold, but the warmth of the sun was so welcome after this long winter. Mary Tyler Son had dance class. His class meets in the Donna Quirke Hornik Studio, renamed after her death. He doesn’t have the same relationship to dance that his sister did. It’s been a noble experiment. No doubt he will opt for soccer or karate next year. I will miss the weekly walks to dance class, a sweet connection to Donna.

After class we headed to Honda of Lisle to accept one of those awesome cartoon sized big checks. $500 for Donna’s Good Things, the charity we started during Donna’s vigil. We had won their February charity contest. Lots and lots and lots of folks voted for our charity to win the prize (Thank you!). $500 will fund a scholarship at Performing Arts Limited for a year, including recital costume. One more child dancing. That was a real pleasure.

Well it turns out the dealership is right down the road from the Morton Arboretum. After lunch, we drove over, with the thought that it would be good to get outside and let the boy get his ya yas out. We were greeted with the acorns that flank the entry into the grounds. Then more acorns. And more. Mary Tyler Son ran and jumped and climbed and crawled. The sun felt warmer, the air felt clean. The cold seemed to melt away along with the piles of snow everywhere. Drip, drip, drip.

This was a much better day than six years ago, despite Donna’s absence.

There is something to be said for acceptance and integration. There is something to be said for “going to the joy,” which is what a dear and wise friend who herself knows great loss encouraged us to do. While the sadness of losing Donna will never leave us, it has not prevented us from living. Feeling the sun on an early Spring day, appreciating a boy growing bigger than his sister ever was, seeing the simple beauty of an acorn.

Acorns have great meaning for me. This wasn’t always so, but on Donna’s 5th birthday, the first birthday after her death, two of her little playmates each gifted me with an envelope of acorns. These two little girls, both four at the time, found the acorns and told their moms to give them to me. One of these little beauties was emphatic in telling her mom that the acorns were for me to remember Donna. Her mom tried to explain that I would remember Donna always even without acorns, but the girl was clear — I needed those acorns to remember Donna. Case closed.

On that fifth birthday we got friends together at Candlelite Chicago, a local place we celebrated often with Donna. I was miserable. Why on earth did we think having a pizza party on Donna’s birthday was a good idea? I put a smile on and got through it. The two envelopes were given to me at the party, but I didn’t open them until just before bed. Two envelopes with acorns in them. One from Evanston, one from Michigan. What were the chances of that?

Oh a whim, I Googled “acorn symbolism.” Within moments, I was a ball of messy tears. It felt that Donna was speaking to us personally, though her friends. The most commonly accepted meanings of acorns include:

potential
strength
power
protection
luck
immortality
life

I know that it is so easy to see what you want to see, feel what you want to feel, but in that moment, I believe with complete confidence that Donna was communicating to us. She wanted us to be strong, to live life, to feel blessed and protected. And I did. And I do.

When I see acorns now, I feel Donna. They remind me that she was here, that she, like an acorn, was small, but mighty. “From little acorns do mighty oaks grow.” This quote is common and has been around for centuries. No one has correctly attributed it. Donna was our little acorn. Donna’s Good Things is the oak that we are nurturing that it might grow big and strong and mighty, taking the potential of one small acorn and realizing it in a tree that brings continued life. Oak trees grow, even in Cancerville.

So, yes, yesterday was a meaningful day for our family. Six years in Cancerville. But there was Donna, in all the acorns. She was in other places, too.

She was in her brother’s smile and joy as he climbed the rope bridges.

She was in the sun that shone so brightly.

She was in our love and happiness.

Acorns and Donna are everywhere . . .

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February 15, 2013

Internet Hate: What You Don’t Know Might Hurt Me

Yesterday, I called “Uncle.” I was done. Over. Wounded. A tearful, salty mess on Valentine’s Day, when I thought I was long past those days. It wasn’t my husband or long lost secret crush that brought me to that place, but strangers. Yep, freaking strangers on the Internet.

I know, someone call the wahmbulance. Mary Tyler Mom got her feelings hurt. Boo to the hoo.

Truth is, I have been at the receiving end of some fairly hard core Internet hate for weeks now. And for the record, I use the true definition of hate as it was intended, “intense and passionate dislike,” that results in malicious attempts to hurt or harm others. Disagreement is not what I mean. There are lots and lots of folks who disagree with me and my POV and that is always welcome. Hate is irrational, disagreement is rational. And welcome.

When a piece I wrote about adoption was featured on the Huffington Post last month, it attracted the attention of a particularly rabid subculture of haters. Ones that I didn’t know even existed. That was a wake up call. And the hate was significant and brutal enough where I severed an agreement made with my editors over there to publish any future post I wrote about adoption. That hurt, as I had fanciful hopes that our next child coming to us through adoption might be found through my writing, and The Huffington Post is a national platform where my words are exposed to a whole new set of eyes.

This week the hate has been much more contained, and with less volume, but no less personal and biting. I dared write about my feelings related to the language used to describe sick and deceased children. My feelings on my blog. Well, 1,300 of you “liked” it, and man, did that feel validating, as many that I heard from were other parents of sick and deceased children who felt the same way.

What didn’t feel so good were the parents of sick and deceased children who did not feel the same way, and sadly, felt shamed and criticized by me. Yeah, that was not my intent. Ever. What works for me does not work for everyone. Of course, that is the case, but because I have a voice and use it and that voice is recognized, it carries some weight. My intent with “Angels and Warriors” was to cast a bright light on words and language and to explain how the words and language most commonly used to describe my Donna never felt good or right or comforting. End of story.

Honestly, I knew the “Angels and Warriors” post would cause a stir. I did. I knew it was a risk because I was removing a defense. As a trained clinical social worker, I know that a cardinal rule of therapy is NOT to remove a defense if you have nothing to replace it. My words did just that: I trashed the defense that employs metaphors and romanticized imagery of angels and warriors to describe children with cancer. I knew and accepted that risk going in, knowing that it would most likely hurt some parents I know and respect who take comfort with those metaphors and imagery.

Because I write so openly about Donna and pediatric cancer, I get a tremendous amount of support from those near and far. Many, many of the kind notes I receive refer to Donna as an angel and me as a warrior. Each time I read a note of support I feel grateful, but each time I am called a warrior or Donna is called an angel, it stings. If I am a warrior, that means I am some sort of super hero that can handle each and every thing that comes my way. If Donna is an angel, it means that she is flitting amongst the clouds, happy and peaceful as a clam.

Here is the truth. I am a mom. Right this very second I am sitting at my dining room table writing these words. My dishwasher is humming in the next room, the clothes are moving through their own wash cycle downstairs. My boy is playing with some Lego trains about ten feet away. I am a mom. No more, no less. I have no weapons, no shields, no super powers. I am a mom with a keyboard.

Now I get that that can be a powerful thing. Clearly, or neither of us would be here, right? And I work hard to honor the power my words hold for folks. I always employ respect. I have grown that way. I used to trash Gwyneth Paltrow for fun. It’s not fun anymore, since I realized that when I trash Gwyneth in a clever and pithy way, others take it as a cue to call her a word used to describe female genitalia that I choose not to use. Me making fun of her calling Chicago BBQ “meat heavy” was suddenly translating into a whole lot of heavy, ugly hate. I stopped that. I am happy I did so.

Me writing about the defenses we use to cope with pediatric cancer also lead to a whole lot of heavy, ugly hate. My beautiful Donna and other children whose parents had commented to offer support were being exploited and called horrible, twisted things.

That is not okay. And, yeah, dammit, I have feelings about that.

Apparently, having feelings about Internet hate that is being heaped and piled on me is a silly thing to do. I am told time and time and time again to ignore the hate. Move on. Embrace my supporters. Rise above. Don’t let the haters win, blah, blah, blah.

That’s all fine and good. Honestly, I wish I were a better, stronger writer that could do that. Truth is, as already pointed out, I am a mom at her dining room table. Not a warrior. Not a super hero with deflective powers. When people suggest I am a cold, thieving, narcissistic, heartless, self-righteous, baby stealing mother of worm food, yeah, guess what? IT HURTS.

Don’t feed the beast, I am told. Don’t respond to the hate, is the rule. Here’s the deal. I don’t make the rookie mistake of feeding the trolls. I never responded once to the Huff Post hate, which is it’s own premium, top shelf brand of hate. Not once. I was, though, guilty of reading the hateful things about me. Yep. Guilty of that. And made to feel stupid and weak because of that. Just walk away, I was told. Don’t read it.

I gots to say, I have a whole new level of empathy for kids bullied through social media. It pulls you in, it does. I am trying and learning, but my first time as a target of lots and lots and lots of hate, I failed. I read every sick and twisted word about me. Yep, I did. And I kept it to myself for the most part. Just me and the hate. Opted not to write about it. Opted not to send the amazing followers of this here blog and Facebook page to the site to defend me. Nope. Didn’t do any of that. I am guilty of just reading it and carrying that shit around with me until it wears off. My defense with Huff Post was to opt out of publishing anything that makes me or my family too vulnerable. The sad truth is that I haven’t written a single thing about adoption since. I am still feeling bruised and battered.

In my own safe place, here at MTM, I ban and delete when I see offensive remarks, as soon as I am near a device that will allow me to do that. But if I am out with my boy and waiting for him to get out of school, and happen to check my comments in the car and see some hard core, hateful garbage written by a pathetic stranger taunting me? Well, I have no way to deal with that on an iPhone. This here MTM enterprise is me. Just me. There are no other admins, no one managing the fires at home. Just me. And as has been made patently clear, I lack the super hero street cred and yep, have pesky feelings that get hurt.

But damn if I will stop. Writing is release and connection and probably the single healthiest thing I do for myself. It hurts like freaking hell when people shit on that. It does. My go to response is to withdraw, hole up, and seek comfort in chocolate and a down comforter. My haters would love that, wouldn’t they? Such is the price I pay for exposing my vulnerabilities on this here Internet.

Cowardly haters love to say that when you put yourself out there, as I do, you best expect folks to have a response, and it won’t always be pretty. Problem with that logic is that the same rationale is used to blame the victim in rape cases — “She asked for it,” “She was dressed provocatively,” “She was walking alone at night,” yada yada yada. That is not acceptable. I do not mean to diminish the pain and suffering of rape victims, nor to equate my hurt and bruised feelings with those of a rape victim, only to demonstrate how hate works in our culture and on the Internet. People who violate others, either tangibly or intangibly, will always suggest they were provoked, that their hateful actions are justified.

By writing about my family’s wish to adopt and by writing about how I cope in my grief, I do not ask to be sliced and diced on the Internet. But I am and it hurts. My words cost me, expressing my opinions and POV cost me something. The question, then, becomes, how much am I willing to pay? How much am I willing to share? How much am I willing to expose? I hate that the onus is on me, but truth is truth. The onus is on me.

I am figuring it out. In the meantime, fuck you, haters. Seriously, fuck you.

December 22, 2012

Delivering Christmas

A few weeks ago a request for donations crossed my path on Facebook. I use social media for fundraising, so it caught my eye. Cal’s All Star Angel Foundation, a charity focused on making life for kids with cancer better, was seeking donations for its 12 Days of Christmas program.

For the past three years, the charity has “delivered” Christmas to seriously and terminally ill children treated at Lurie Children’s Hospital of Chicago. This involves gifts for the diagnosed child, and for each of their siblings as well. Then there is homemade Christmas cookies, a gingerbread house, and finally a gift card for a local grocery story so the family can have a special dinner catered, or shop for themselves, whichever they prefer.

What a great idea, I thought.

Our girl was diagnosed in 2007 and that year we spent the entire holiday season in the hospital, Donna recovering from her stem cell transplant. We walked in the door December 4 and Donna was not discharged until January 4. Christmas was not something we worried about that year.

In 2008, we brought Donna to the ER on Christmas Eve morning with listlessness and a fever. She checked out fine when we got there, no infection, so we went home. On Christmas Day, she was listless, and vomiting. No family celebration. We called the docs and because there was no fever, we got permission to stay home for the holiday. By 6 AM on the 26th we were back in the ER, Donna ashen and unresponsive and now had a fever. She had dangerously low levels of carbon dioxide in her blood and was diagnosed with RSV, a sometimes fatal cold strain for infants and immuno-suppressed children. Poor Mary Tyler Son’s due date was days away. Yeah, that was not much of a Christmas either. We didn’t know it at the time, but it would be Donna’s last one.

When I saw’s the 12 Days of Christmas program, I felt in my bones how worthwhile an initiative it was. Kids with cancer get lots of toys and extras because of their illness, it’s true, but to take the responsibility of Christmas from a family who is burdened with bills, stress, fear, and terror. Yeah, that is a good thing.

I put the word out on Facebook and within a 24 hour period, Donna’s Good Things had collected $1,399.00 to support Cal’s 12 Days. It really does feel good to do good. I dropped off the check with Cal’s Dad and Step-Mom who run the charity. In return, they asked if my family would like to be one of the volunteer families to “deliver” Christmas.

Deep breath in, deep breath out.

My first reaction was a bit of panic. To go into a home where there is a child who is seriously or terminally ill feels a bit like walking into the lion’s den to us. It is hard. Hard. We said yes.

The first child we were paired with was a little 7 year old girl with a brain tumor. There was a three year old brother, too. Just like my family. Deep breath in, deep breath out. Unfortunately, that little girl’s health took a turn and she died. Just like that, folks. Cancer does not care if it is Christmas time. I hold that family close in my thoughts.

In the end, we were paired with a different family. One little girl who loved all things purple and pink. Mary Tyler Son came down with a cough, so he was out. Mary Tyler Dad had to work, so he was out. Just me, walking into that lion’s den alone.

The thing is, the lion’s den is a familiar place to me. I’ve been there before and once you’ve been there, you never forget it. I wrapped this girl’s gifts special, finding pink and purple glitter wrapping paper and a pink snowflake for flair. Go big, you know? When you’re 9, more is always more. I wrapped those gifts with love. She felt like my own girl and I wanted everything to be perfect for her.

When I pulled up, I saw her peeking through the curtain. She bounded out of the house to greet me. She had a beautiful smile. Really gorgeous. And shiny eyes. She invited me into her home where I met her Mom and Dad and Grandmother. I sat at their table and visited as their beautiful girl opened her gifts. Love, love, love. Nothing but love.

It turns out, that lion’s den wasn’t so bad after all.

Thank you to all the generous donors who made our donation possible. Thank you to Cal’s All Star Angel Foundation for all the incredible programming and wish granting you do. Thank you to the family that opened their door to a stranger bearing gifts. I choose hope for that beautiful girl and wish her the Merriest of Christmases. Many, many Merry Christmases.

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