I feel it first in my body. Something about the warmth of the air or the position of the sun or the smell of summer that triggers my body into a panic response. I feel the anxiety building, first with a knot in the pit of my stomach and then the tightness in my chest and then the sense of dread, fear, and sadness all rolled into one accompanied by the distinct realization of complete powerlessness and finally erupting into a volcano of emotions begging to be released through tears but held at bay until I am able to find a safe, secluded place.

This all occurs instantaneously before my mind catches up to remember the date. Oh yeah, it’s June 21. That’s what is going on. Here we go again. Six years later I relive the day my life was forever changed. The day I took my sixteen-year-old daughter Claire to the Emergency Room. Nothing would ever be the same again. Nothing.

I feel pulled back to that day and want to be there again. Because Claire was still here then. Because maybe if I could go back knowing what I know now things would have turned out differently. Maybe because I want to go back to not knowing what was about to happen? Maybe because hope (and denial) existed then.

But because it is six years later I now know everything that did happen. So I am not only taken back to the day, but to the pain, struggle and trauma of the following years which started with that day:

Learning about the disease Rhabdomyosarcoma, and that Claire had the worst type, Alveolar, and that hers was stage IV, and that older kids had less of a chance than younger ones. Watching her cry as her golden locks fell out and never returned. The emotional roller coaster of scans – feeling hopeful when the tumors shrank and feeling devastated when the cancer returned and took over. Being treated for my own breast cancer and going to radiation on the day she died, informing the staff (who also knew her from her own treatments) that she had passed. Attending her high school graduation and hearing her name called but not seeing her walk across the stage; my eyes burning with tears as her whole class gave her a standing ovation. Learning to live with the endless grief and hole in my heart and then learning to enjoy life again, but always in a different way. Standing beside my husband while he lost his only son at the age of 23. And now, just days ago, he said his final goodbye to his dear mother.

So I will honor this day as best I can, allowing the anxiety and emotion to ebb and flow, crying with the painful memories, smiling and laughing with the good ones, and giving Raja special food today, her birthday. The actual date is unknown to us, but Claire decided this was the date we should celebrate the birth of her precious kitty instead of focusing on how it was the date that changed her life forever. June 21.

Woke up this morning from a dream where Claire had died but was alive again and had a second chance. The only thing that might save her this time is if I took her place and died. So I got hooked up to the IV which would push the lethal drugs through my body but then she died anyway. For some reason everyone else still wanted me to go through with it. I started freaking out and screaming that I didn’t want to do it anymore because I still wanted to live and it was too late for me to save her anyway. But people were upset with me because of my decision. I didn’t care and I just threw myself on the ground and sobbed because my baby was dead.

Good morning. And so the day begins. Takes me a while to shake off the horrible sense of fear and helplessness caused by the dream but so what else is new? First task of the day to complete the paperwork for my jury summons. Great. They want me to serve the week we have a vacation planned. I ask to be excused but only after being traumatized once more when I have to fill in the blanks on the questionnaire answering: Ages of Children: (1) ______ (2) ______ (3) _______ (4) ______ (5) ______. FUCK! I fill in the appropriate ages for my three living children while screaming inside “I HAVE FOUR CHILDREN!” For a moment I consider filling in the fourth with “18 but deceased” and then realize how ridiculous that is. I think to myself that this should be an essay question, not one constrained to a couple of numbers. I wonder, “Why the hell do they need to know how old my children are?” I go on to the next section feeling as though I have betrayed my youngest child by leaving her off the list and not making her existence known to the government representatives; strangers who have reopened my wounds and intrusively made their way into my most personal story without even knowing or caring.

Next I make my way to get my hair done, ready for a change of style. In trying to explain what I might like I realize Claire’s hair was a lot like mine and hers always looked so cute (when she had hair). I pull out my phone to show my stylist Claire’s face (and hairstyle) which is the screen saver on my phone. This and other photos of her are my only means to be warmed by her smile or look into her bright eyes. A comforting yet painful reality I deal with on a daily basis. So what else is new?

I shove down my sadness and tears because I need to shift focus before I get to work so that I am able to be fully present with my clients as I bear witness to their own painful stories, traumatic events and small and large successes. In the middle of one session I make the split decision to share the fact that I have lost a daughter to cancer, believing in the moment it will be of therapeutic benefit to the client. But after the session is over I doubt myself and wonder if that was the right choice or not. I tell myself it is ultimately okay because if nothing else, they will know I am human and have experienced great loss, which hopefully will increase their trust in me as their therapist and not diminish it. It is, after all, my reality and makes me who I am.

Driving home, feeling the warm summer air lifts my spirits and causes a deep stabbing pain in the same breath as I anticipate the anniversary of Claire’s diagnosis in a couple weeks; the weather and position of the sun always remind me of that summer evening in 2010 even before my brain remembers the date.

I get home to be greeted by Claire’s cat Raja waiting for me in the window. I open the refrigerator whose door is covered with pictures of all my kids and Claire at various ages. I sit down in the living room and she stares back at me from her framed senior picture.

I walk down my hallway to be greeted by her large canvas painting self-portrait. I watch Raja jump up at things that don’t seem to be there and run from room to room as though she is chasing an invisible string. I choose to believe Claire is playing with her, which makes me want to laugh and cry in the same moment.

So time for bed. I wonder where my dreams will take me tonight.

Claire should be turning 22 on December 17. Her friends are getting ready to come home for Christmas as they finish up their final year of college. I imagine if she were still here I would have to stand in line to spend some time with her. I suppose she would be stressing over finals and anxious for the break to see her friends, celebrate her birthday and Christmas, and play with her cats; especially Raja, but Bill, too. However all I can do is wonder. Wonder what it might be like. I will never know that reality. I only know the reality of painfully navigating my own emotions at this volatile time of year and making sure our family continues the ritual of honoring her birthday with “dinner and a movie,” her final request which we were not able to fulfill while she was still with us in body. Obviously she is always with us in spirit. Some days this provides comfort and other days it only brings frustration and sadness. This year I will be out of town on her birthday because Dan and I will be relaxing on our honeymoon. I have mixed emotions about being gone, but we will celebrate her birthday as a family after we get back and Ellen arrives home to spend Christmas with us. Funny how I can feel like I am abandoning her by going on vacation over her birthday even though she is not physically here and will be with me just as much on the beach (or perhaps more!) as she would home in this unseasonably warm Minnesota December.

I wrote a letter to Claire on her birthday last year which I posted on her Caring Bridge site. I just re-read it and aside from the age specific details it communicates exactly how I am feeling this year so I’d like to share it with you:

December 17, 2014

Dear Claire,

Another birthday without you here.

This year you would be turning 21. Is it weird that even though you died when you were 18 I still think of you as continuing to age and I now see you as 21? So many other parents who lose children refer to their loved one as “forever 18” (or 15 or 7 or 2 or however old they were when they passed). To me you don’t feel forever 18. In my mind I saw you turn 19 and 20 and now 21. Maybe it’s different for me because you became an adult before you left us. I got to see you as an adult – I don’t have to imagine it. For that I feel very fortunate. But it certainly doesn’t lessen the pain.

Around this time of year I feel my grief looming. It first shows up as anxiety –the familiar churning in my stomach, heart palpitations and shortness of breath, feeling like I’m going to crawl out of my skin, wanting to scream, run, hide and disappear all at once. As the anxiety increases it turns into anger. First an undertone of irritation, then culminating into rage with no place to go. The energy needed to keep the anxiety at bay and hold back the powerful waves of rage exhausts me and I finally give in to the overwhelming sadness, feeling powerless, distraught and left with only my tears and sobs. Broken, once again, crumbling under the intense weight of loss and the missing piece of my heart.

But even as I write this, in the midst of my pain and my tears, I see you and I hear you beckoning me to a place of joy. Wanting to show me how happy you are now and how beautiful and healthy and complete. I feel your love for me. I feel your spirit. Your presence is apparent. I see you with my heart and I touch you with my soul. Wonderful and yet horrible at the same time because my physical being aches for your physical form – impossible and the reason for my inexplicable grief.

Feeling crazy as I hold such contradictory emotions all at once. Utter devastation and peace. Uncontrollable chaos and calm. Absolute resistance and acceptance. How can these things coexist? I do not know but I experience it every single day.

I wonder how you would want to spend your birthday. Would you let us buy you your first “legal” drink? I’m guessing you might not even like it – unless it was a strawberry daiquiri or Riesling – definitely something sweet. I remember your irritated glares when you used to complain about my red wine at the dinner table, letting me know loudly and clearly, “it stinks!” But maybe by now your palate would have matured and you would have been able to enjoy the right of passage into adulthood by ordering that first drink and showing off your license to prove you are of age. But I guess we will never know. Instead we are left to toast your memory when we go out for dinner and a movie in our attempt to honor your (literally) dying wish which we failed to do while you were still here clinging to life.

Flashbacks of birthdays gone by flood my thoughts – from the day you were born (or even before that when I would play with your moving limbs, gently pushing against them while they would internally glide across my abdomen, making me feel like an alien had taken over my body) to your final birthday celebration 18 years later where so many friends and family gathered at Obb’s Bar, all of us privately knowing it would most likely be your last, but none of us wanting to admit entertaining such a horrific thought. You taught us to live in the moment and make the best of whatever time we had. You danced that day, showing off your Xbox Dance Central moves and less than a week later were unable to walk because of that damn cancer. I can still see your mysterious look as you pondered your wish before blowing out your candles and I wonder what you wished for, although I think I know….

So happy 21^st birthday my dear Claire. Please leave signs and reveal yourself in some way to us on your special day. You will always have my heart and I will forever be your mom.

Four years ago today, October 17, 2011. One of those defining moments in time that, in retrospect, revealed the beginning of the end. The beginning of the end of Claire’s life. We already knew the rhabdo beast had reared its ugly head again, producing tumors in her breasts. But the doctors encouraged us to go ahead and leave for her already scheduled Make A Wish trip on October 21, reassuring us that as soon as we got back we would determine a plan to deal with those tumors using radiation and maybe chemo; whatever it would take.

So why on that Monday while at physical therapy and Claire noticed when glancing in the mirror that the left side of her face drooped ever so slightly, did they not immediately assume the cancer was growing elsewhere? They sent her down for an MRI, thinking it could possibly be a stroke. When “nothing” showed up on the MRI, why were they so certain it wasn’t the cancer? Especially when they knew how aggressive rhabdomyosarcoma is and that MRI’s aren’t as effective as PET scans to detect the disease. They decided it might be something like Bell’s palsy, and once again told us to have a good trip and hopefully it would get better but we’d figure it out when we got back.

Were they wanting to protect us from anticipating the inevitable untimely death of a young woman barely on the brink of becoming an adult? Or were they in their own denial, wanting so terribly to believe that it might not be that bad? I don’t blame anyone. And none of it really matters because nothing could have stopped it anyway. But looking back on it four years later I have more questions now than I did then. Questions for which there are no answers.

And part of me longs to go back to that time, which fills me with confusion and guilt. Claire had to suffer so much, would I really want her to have to go through that again? But she was still here. I could still talk to her, hear her voice, hug her, hold her on my lap, watch tv with her, drive her around in the car, take care of her. Now there is just distance. And it keeps increasing.

I was shocked into the reality of how long it has been the other day when one of my graduate students told me she was born the same year as Claire. Wow. Time stopped for Claire her senior year of high school. But this coming December she should be turning 22. What would she be doing? Finishing college? Traveling the world? Living with a boyfriend?

Instead Claire was robbed of her future. As the cancer continued to progress, the doctors made it clear that it was Claire’s choice if she wanted to continue with treatment in an effort to slow down the progress or if she wanted to stop fighting. I wrote about Claire’s response to this option on December 29, 2011 in a Caring Bridge post:

“But Claire is very determined and still wants to fight back. After being posed with this option while talking with the radiologist, she stepped out to give us some privacy to think about it. I asked Claire what she thought about it and she said, crying, “I can’t do nothing! I have to do something – I want to graduate and I want to go to college!” Heart wrenching stuff. So many things that we all take for granted, to Claire are exceedingly difficult challenges which she has to fight for with every inch of her being. Please pray that Claire will be able to accomplish her goals and that things will ease up a bit – for at least a while. This is all very surreal at times, and yet it has become our life.”

I still live constantly in a surreal state. I cannot believe this has become my life. Most days I tuck it all neatly inside me where no one can see and I carry on as though life is enjoyable, normal and has meaning. But deep down I endure the stabbing pain with each breath and the broken heart of losing a piece of myself. And some days it catches up to me and shuts me down completely. This time of year is hard because it represents the beginning of the end. I relive it each year, processing it on a new level, and feeling the same churning anxiety and anticipation of doom.

Fall brings cool days and cold nights and more darkness. It is an exercise in futility to properly prepare emotionally for Thanksgiving, Claire’s birthday, Christmas, a new year, the Valentine’s Day reminder of being sent home to die and finally the dreaded anniversary of March 1 at 3:06 a.m. when Claire took her last breath.

And yet she lived her life right up until the end. Here is a peek into her final days which I recorded on Caring Bridge on February 20 (Seth’s birthday), just ten days before she died:

“Claire slept most of the evening and Hannah, Ellen and I just sat in the room with her (in between the nurse and Dan coming in and out and helping here and there). It was very strange and surreal to watch her sleep and at times labor in her breathing, wondering to myself, is this what it’s like to watch your child slowly die? Which breath will be her last? Will I be here for it or will I miss it? Will she wake up tomorrow and be improved or will tomorrow be the day when she can no longer hear or see or communicate anymore? Will she somehow have some kind of rebound and live much longer than anyone expects? We don’t know if we have days or weeks – is how the doctor put it. But knowing Claire, who knows? She just asked me yesterday about going to pool therapy on Wednesday! And she’s determined to keep those stupid braces on even now. She has a foot in both worlds right now. Her body is failing her as the cancer continues to take over and rob her of so many physical abilities. But her mind is very much alive and living – still making plans and making jokes and getting irritated (especially when we struggle to understand her because her speech has been affected). Sometimes she just sighs and says, “you have no idea what I just said, do you?” And then tonight as she was trying to pick out a Jamba Juice she says with wry sarcasm, “I suppose I should get the low-cal one, huh?” She is so thin and her tiny frame is so fragile.
This is so ridiculous that this is happening. I am so angry and so devastated and so numb all at the same time. I look at others who have survived and wonder why that can’t be us, but then I look at others who have lost the fight and I feel terribly presumptuous in asking that we be spared the same pain. Nothing makes sense to me anymore, but in a way I’m ok with that. I know many of you have ways of dealing with and/or explaining these kinds of dilemmas, and that is great. But right now we don’t need to be given any explanations, we just need to live through this experience in our own unique private ways.”

Turns out I missed her last breath. She chose to go on her own, alone in her room, with none of us around. I was awakened at 3:06 by an unidentifiable cry which I choose to believe was Claire saying goodbye. For some reason I felt compelled to stay in my bed and not go check out the noise. A little over an hour later, Dan went in to give her some meds and she was gone.

I miss you Claire. Every minute of every day. I don’t really understand the point of all of this or of life itself. But I will continue to try to live one moment at a time. If for no other reason than to honor you because you wanted so badly to keep on living.

When you have a child with cancer, social media can provide a wonderful lifeline of support. When Claire was sick I used Caring Bridge to communicate updates to the myriads of supportive people who were following her story throughout treatment (http://www.caringbridge.org/visit/clairefrick). I know many have also used Facebook to do the same. Living with pediatric cancer can be isolating at times and it is a good feeling to be able to post progress, concerns, happy milestones and requests for prayers and good thoughts and receive immediate comments of love and support, reaffirming the fact that you are not alone.

But on the other hand, sometimes comments received through social media can be devastating. I would hope that most people really do want to be helpful but sometimes things are said out of ignorance which can potentially make the parents feel worse not better. I remember one time after I had written an entry about how challenging things were and how it was so hard to watch my daughter struggle and be in pain, an anonymous person left a comment telling me I should just be thankful that she was still alive and I didn’t have an empty place at my dinner table. I believe I had expressed how thankful I was that she was still alive, but that didn’t negate the suffering she was enduring. And now that I have had an empty place at the dinner table for the over three years since Claire died, I still would never say to a parent who is watching their child fight cancer that they should just be thankful that they are still alive. It goes without saying that any parent whose child is fighting a life threatening disease is thankful every minute that their child is still breathing. But the cancer journey is still hard. Very hard. And painful. And scary. Scary because of the words we all dread to hear from the doctors…”I’m sorry, there’s nothing more we can do for your child.”

So when someone you care about is fighting this fight and hears those dreaded words, what should you say? What comments can you offer on their social media site that will provide the support they need at a time when nothing can make it better? And are there things that should not be said?

Unless you have experienced this kind of tragedy it may be difficult to know how to respond. Here are some practical things to consider which may assist those who want to be helpful but not hurtful. Let’s start with the things to avoid:

• Do NOT offer Advice. Forget about suggesting the latest miracle cure fad such as cannabis oil, a special diet or something you heard about on the internet. Trust me, these parents have already turned over every possible stone to find a cure for their child. If a cure existed they would have found it and used it.
• Do NOT resort to Platitudes. While some popular sayings may have meaning and truth for you, now is not the time to tell a parent who is about to witness the death of their child that “Everything happens for a reason,” or “This is God’s will,” or “At least their suffering will be over.” This is not to say, however, that they have given up or have stopped fighting for their child. I would imagine most parents hope for a miracle up until their child’s last breath. I know I did. But I also knew the reality that my daughter would not continue to live. I saw her decline. I saw her slip away from us slowly.
• Do NOT sit in Judgement. Refrain from questioning any decisions the parents or family members have made. Parents in this situation second guess themselves enough. Worries about whether or not they did enough to save their child will haunt them the rest of their lives. The last thing they need at this time is to have others challenge their choices.

And on a positive note:

• Show Compassion. Speak from the heart and share your sadness and depth of emotion that they are going through something so difficult. The harsh reality is that this is a situation that cannot be fixed, so suggesting possible solutions is not appropriate. But what can help is that they will know they are not alone because there are those who are willing to stand with them in their pain and sorrow and sadness and fear.
• Express Concern. Tell them you are thinking about them or praying for them. But be sensitive to the cultural and spiritual beliefs and practices of the family going through this. If prayer is meaningful to them, offer to pray for them. If they are comforted by Scripture or religious writings, quote them. But if they are atheists, use non-religious terms. And if you are uncertain about their beliefs try to use neutral language and avoid quoting Bible verses because it might feel “preachy” to them instead of bringing them comfort. Be respectful of their beliefs and values, especially if they differ from your own.
• Commend them for their conduct. Offer encouraging words of affirmation to let them know they are doing a good job as parents and you know they love their child more than anything. Acknowledge that you trust them to do what is best and validate their decisions as they are theirs to make. Parents and families facing this situation are most likely exhausted at this point – physically and emotionally. They need affirmation, encouragement and unconditional love.

I wrote this piece last fall but am feeling it today….

Sinking in quicksand.

Can’t breathe.

Can’t move.

Barely keeping my head above ground.

It takes every ounce of energy not to give up and give in and allow my entire being to be sucked down into the suffocating depths.

And yet life goes on all around me and no one seems to notice my peril.

Voiceless screams emanate from the deep recesses of my soul,

“Can’t you see I’m dying??!!”

But no one hears.

Fucking grief.

It’s always there –

the constant stabbing pain in my heart exaggerated with each breath.

And most days I can continue to function, or at least pretend to.

But not on the quicksand days.

Simple tasks become impossible.

Take a shower?

I can’t, I’m buried in quicksand and can’t get out.

Send an email?

I would, but I can’t feel my arms or legs.

Make small talk to friends and acquaintances?

The choking sand compresses so tightly around my lungs and chest I open up my mouth and nothing comes out.

Words and thoughts are jumbled in my brain and I can’t make sense of anything.

The worst part

is not knowing how long I will be here

Or how I even got here in the first place.

I brace myself with expectancy

for the familiar triggers –

Claire’s birthday

My birthday

Mother’s Day

Christmas

Thanksgiving

March 1 – the date she left us

June 21 – the date I took her to the ER and our lives were changed forever.

But this one caught me unaware

and unprepared.

I am crippled by its relentless, debilitating grasp.

I sift through memories,

wondering what my body is remembering

that my mind is not.

Perhaps it’s the temperature of the air

or the position of the sun,

just like that cool September evening

when Claire looked at me with horror in her eyes,

asking, “what is this lump?”

even though we both knew deep down

the evil rhabdo beast had returned.

Or the crisp October morning

I received the unexpected news

that tumors were also growing

in my body.

And then there’s back to school…

Claire should be starting her second year of college.

Ben should be returning to become a diesel mechanic.

Instead their ashes keep us company

As we hear stories of sobbing parents moving their kids into dorm rooms,

anticipating painful separation…

Until Thanksgiving or Christmas, I suppose.

So here I sit

Two and a half years

Into this thing called grief.

Paralyzed once again.

And angry.

So angry.

Rage comes out sideways.

I feel resentment and disdain towards a young family

Who block my running path

As their photographer captures images

Of their carefree existence.

I realize I am not really angry with them,

But rather with the fact that I will never

Be afforded the luxury of taking more pictures

Of my child

Or the grandchildren who will never be.

The pain overwhelms me

And no one knows

What a great feat I am accomplishing

By merely continuing to put one foot in front of the other.