September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Pauline Grady
The guilty milestones. It sounds crazy, I know. But let me explain.
I feel guilt. A ton of gut wrenching, tear producing guilt. It’s this God awful emotion that is confusing, yet justified, all at the same time. What is this guilt about you ask? My child survived. That is my guilt. It’s a warped form of survivors guilt.
I don’t expect anyone on the “outside” to understand, but I am fairly certain that those on the “inside” do understand. When Sam was diagnosed with cancer, my very first thought was, “he’s going to die.” I prayed, I begged God not to take him, I held him close to me many nights watching him breathe, crying, pleading for him to never leave my arms, the ones wrapped around him.
What I did for those 3 1/2 years my son was in treatment is exactly what every cancer mom does. We all beg. We all plead, yet some of us make it to the other side, still holding our children, when others cannot.
Why? How is that fair? This is where my guilt comes in. Why, if I am doing the same thing that other moms are doing, did Sam “survive” and their child didn’t. I don’t have an answer, I don’t think anyone does, but you can clearly see how this might fuck with your emotions.
While packing up the boys’ back packs tonight, an overwhelming sadness came over me, as it has in the past few years. I get to pack Sam’s back pack, I get to make his lunch, I get to tuck him in tonight, I get to put him on the bus tomorrow.
I’ve been asked all week if I am excited about the boys starting school. Of course I am, I need a break. I am looking forward to going to breakfast with my friends. But breakfast will come after I put the boys on the bus and go back inside my house and cry for a while. Cry tears of happiness that Sam has made it to first grade, tears of sadness for the moms that can’t put their kids on the bus and tears from the anxiety that I feel every single day that one day this monster will come back.
Sam on the soccer field.
September 2nd marks one year that Sam will be off treatment. The farther away we get from his last treatment the more likely he is to not relapse. He looks healthy, his numbers have been great and he is generally thriving. That is my short answer when people ask me. My long answer is, he quit soccer because his legs hurt too much and his stamina still hasn’t returned; he’s angry and nothing holds him back from letting you know; he has anxiety that ebbs and flows, and we are still dealing with stomach issues.
The really long answer I’ll save for therapy when I’m ready to go.
In the past year I’ve had a lot of what I like to call “epiphanies.” Oprah used to call them her “ah ha” moments. The dust continues to settle and I am seeing more clearly than I ever have before. I think I am where I am supposed to be or at least heading in the right direction anyway.
September is Childhood Cancer Awareness Month. The color is GOLD. The inequality as far as funding for childhood cancer as compared to other cancers is pathetic.
What will you do this September?
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Pauline Grady is a 39 year old mom of 2 living in Northeast Pennsylvania. She is happily married to her husband Rick and spends her down time cooking, writing and garage saling. You can read her words at her blog, Chemo and Donuts.
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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Karla Helbert
Early in September 2005, I flipped on the radio as I drove yet again the three mile route between home and hospital where our three-month-old son lay, intubated, in and out of consciousness, head stapled shut. Distractedly, as I did most things not involving my presence at our son’s bedside, I listened as NPR reported yet more devastating news of Hurricane Katrina ravaging New Orleans and her people.
Pain and sadness welled in my heart, my thoughts turning toward the hundreds, maybe thousands of homeless, missing, injured, dead, and returning quickly to my child, my personal horror overwhelming any empathy I could hold for the people of Louisiana. Blinking through tears, I wondered how I would feel about this if Theo weren’t lying in the hospital right now? How awful would I feel if this had not just happened to us? I found I did not have the capacity to hold my own terror, grief and sadness as well as the pain of thousands of strangers.
Theo in hospital.
A hurricane of immense proportions had just made landfall into our lives as well.
Two weeks earlier, on Saturday August 20, 2005, my beautiful three-month-old son Theo, our first born child, began seizing and projectile vomiting. Ice cold dread snaked its way up my spine as I watched him struggle, one eye open, the other closed, one hand grasping, the other limp. Something was wrong with his brain.
After countless traumatic hours in two different hospitals, he was diagnosed with a brain tumor, a choroid plexus carcinoma, one of the rarest and deadliest of pediatric brain tumors. One in 275 million children annually will be diagnosed with a choroid plexus carcinoma. The survival rate even as long as 5 years is “dismal.” No child makes it to adulthood. As one of our oncology team members put it when she delivered the news, “It’s like winning the lottery, except backward.”
Diagnosis day ten years ago was one of the most traumatic days of my life. What came after was hard, excruciating, painful, heart-wrenching, all of those things—but far less trauma-filled. When the storm for which you are wholly unprepared makes first landfall and all your levees break, it takes a feat of preternatural strength just to stay above water.
For a few years, because it was important to me, August 20 was a day of observance. We returned to the PICU bearing gifts of donuts, fruit, chocolates, goodie bags for nurses we loved dearly and who took such good care of our baby. Then came the year when I just did not want to go. I didn’t want to stand in that hall one more time.
Still, I observed the day. I took time to reflect, to cry, to consciously re-live particular moments forever frozen in my memory that if not given attention, I knew, would come far more often unbidden, stirring up debris, making my grief-suffused life even more difficult to manage.
Then came a year when the day quietly passed without remark or observation. Last year, I realized the 20th had come and gone without my noticing until the following day. I was surprised, but felt okay about it. At nine years, I was somewhat acclimated to the ebb and flow of grief. I had become more adept at accepting how it came and went. I did my best to be with it when it showed up; I tried to be gentle with myself when I felt I somehow wasn’t doing it right. Sobbing in the kitchen last Christmas I shocked myself by saying to my husband, “What is wrong with me? I shouldn’t still be feeling this way!” Really? I should’ve known better than that. I do know better than that.
Theo, one week prior to diagnosis.
This year, mid-August, I began feeling weepy, emotional. I was deeply missing my child, more consciously, it seemed, than usual. Writing the date at the top of a note, 8/20/2015—it hit me. My body knew this anniversary was coming before my mind recognized the fact of the date. This year, it needed my full attention.
I took time with the day. I sat and read many things I wrote a decade ago in 2005. When my child was still alive, when he was still dying. For a good couple of hours I sat and cried, missing him, longing for him. I cried for what my child endured, for what I endured, for what my husband endured. For what we are missing. Always.
I heard today, again on NPR, another story on this tenth anniversary of Katrina. Interviewees spoke of division in the hearts of some citizens of New Orleans. Some want to celebrate, while many others feel celebration is not warranted, that the date of devastation is nothing to celebrate, to even acknowledge. The destruction was so great, the losses so immense. There is still grief at the loss of life, the trauma, the struggles, the pain they have endured and will continue to endure.
The city will never be the same. Yet they are still there, the city is still standing. Looking back reminds us of where we’ve been, what we have come through, how we have changed, and what has not. Recognition and remembrance are important, even necessary, and possibly, at times, unavoidable. Perhaps the significance of the passing of a decade has some particular resonance in our psyches.
Another metaphor describes grief as waves. As we learn to float, the waves eventually come with less force and violence. It isn’t really about the passage of time; it’s about the continued practice of being with the pain in a thousand different ways. It’s not healing; it’s learning to grow with the grief, the changes, as part of who we are now.
The pain becomes less searing, this is true. And while I don’t like to say that it gets better, with greater space between waves, with more room to breathe and float, it is different. It is in many ways better than the gasping and fighting and struggling and crashing that early days and years hold.
This grief never ceases to amaze me. And since my love for my child also never ceases to amaze me, I suppose I should not be surprised that those things are commensurate. I have this anniversary been sitting with my grief, a familiar companion now, allowing it to be.
Theo, while on hospice care, Mom, and Dad. Photo credited to Patricia Lyons.
Ten years ago my life was irrevocably changed. It will never be the same nor will it ever be okay that this happened. Yet I no longer struggle. My love for my child is the strongest force on Earth. My grief exists because of my love for him. I let it come in whatever form it wishes to take. It is still not easy.
Someplace along my personal time space continuum, a Category 5 storm is still making landfall into my heart, tearing apart the very foundation of who I once thought I was, what I thought my life would be. For now though, now, in this moment, my levees hold.
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Karla Helbert is a bereaved mother, psychotherapist, yogini, reiki practitioner, aromatherapist, crystal collector, and award winning author. She has a private psychotherapy practice in Richmond, VA where she lives with her husband Jamie, their daughter Lula and the betta fish Captain Starr. She is a MISS Foundation chapter facilitator and certified Compassionate Bereavement Care provider. Karla’s newest book Yoga for Grief and Loss is available October 21, 2015 from Singing Dragon Books.
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Earlier today a stranger on Facebook accused me of not being my youngest son’s “real” mom, my youngest son being adopted. I deleted the post immediately. I didn’t engage the stranger, didn’t argue the point, and won’t tolerate that nonsense.
I’ve been exposed to Internet hate before. It’s anonymous and angry and the rule is that you’re supposed to ignore it. For the most part, I do, but don’t kid yourselves. If you are repeatedly the target of hate, even anonymous and virtual hate, it can have a negative and potentially harmful impact on you.
I’ve written about controversial issues in the past. Guns. Abortion. Politics. Adoption. And, yes, adoption is controversial. I didn’t realize that before I became a part of the adoption community. I was naive enough to write about our family’s wish to adopt, not thinking anything of it, full of hope and good intentions.
The Internet schooled me.
That schooling took a toll on me, despite my best efforts for it not to have an impact. For the record, after coming to adoption, I more fully appreciate the nuances and complicated nature of adoption. It’s not a black and white issue and there is tremendous pain and loss attached to it from everyone involved.
I’ve witnessed pain experienced from every side of the adoption triad — birth parents, adoptive parents, and adoptees. I get it. I’ve lived it. And you just need to believe me on this front, as I will never, ever publicly reveal details about my personal experience with adoption, as they would hurt my child.
A real mother does not intentionally hurt her child.
A real mother anticipates her child’s needs.
A real mother protects her child from needless pain and conflict.
There are times I am vulnerable enough to give in to the burden of the labels I carry. It is terrifying to be a Cancer Mom. It is complicated to be an adoptive mom. It is relentless to be a grieving mom. I am all of those things.
Somedays I would give anything to be none of those things. Somedays I celebrate how being those things has shaped me in profound ways.
Because I have seen a child from birth to death, lowering her body into the ground with my own arms, I know I have strength. Because I have stood in line at the Walgreen’s, trying to fill the prescriptions of my son’s Birth Mother while she sat in a room, holding the child she had just birthed, and signed form after form confirming her choice to place that child in the hands of another, I have humility. Because I wake up each and every day bearing the weight of grief and loss of a child, but still manage to dress the kids and pack the lunches and fold the laundry, I have resolve.
Those experiences, painful and hard as they might be, give me perspective, something many people blissfully pass through this life without. I rely on that perspective to cope with things like the Internet hate of strangers, or, at times, even the ill will of someone I know personally.
When someone suggests, because my youngest came to me through adoption, that I am not his “real” mom, I know better. The hate in those words, the intent behind them — to undermine and intimidate, give me pause, to be sure, but armed with my life’s experiences and perspective, I know enough to reject them.
I am a real mom to all of my children.
These words I write tonight are as much for me as they are for those women sitting at home reading them, who came to motherhood through a different means and have had their status called into question. You are a real mother. People use the premise of “real” motherhood to hurt and belittle and diminish, but they are not true.
I’ve had enough of remaining silent on this issue, holding my tongue in favor of being diplomatic, empathic, sensitive, or thinking it was what my son needed. What my son needs is a mom. That happens to be me, not through biology, but through love and care and connection.
And me being “Mom” in no way lessens the role my son’s First Mother had. One is not better or worse, more or less significant. The roles are separate, different, and necessarily dependent on one another.
I am as real as it gets. I bleed, I poop, I feel. I care for all my children — those I gave birth to and the one that grew in another woman’s womb. They are all mine and I love them each the best I can — with confidence, with compassion, with certainty.
People can try to diminish that love, but they will fail because they come from a place of ignorance and hate. This real mom knows better.
Mary Tyler Mom 