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.

In the middle of treatment for her cancer, Claire decided she wanted to be on the MTV show True Life. She wanted to increase awareness around childhood cancer and she wanted the world to be able to see what it was really like for a teenager to be faced with the challenges of intense chemo therapy, radiation, surgeries, and the constant, lingering possibility of death. She sent in an application online and one of the producers called her back. She was so excited. But in talking with the producer, she was informed that her particular story did not fit into any of the specific topics for upcoming shows. The producer acknowledged Claire had an amazing story to tell and was impressed with the candor, vulnerability and maturity which Claire revealed in that conversation, but politely apologized and that was the end of that.

Even though Claire was disappointed at first, on more than one occasion during the very difficult times to follow, we both looked at each other with mild relief that no cameras were following us at that particular moment. No one to hear our harsh words with one another when we both had been pushed beyond our limits. No one to hear her wails of pain and anguish as she simply tried to go to the bathroom. No one to see her standing with her walker, trapped by her own vomit. No one to see her slowly lose her ability to walk, speak, see and hear.

But then again no one was able to witness her amazing fortitude and stamina as she sang in every choir concert, painted masterpieces in her art class, dressed up as Voldemort for the latest Harry Potter movie, traveled to Washington, D.C. with her choir and New York City with her siblings, and to Disney World with her family for her Make A Wish trip where she rode all the scariest roller coasters more than once, laughing and joking and living life to the fullest even with her crooked little smile which was a result of the cancer invading her brain.

So today I am filled with regret and sadness that her story was not documented on film. Why didn’t I suggest that we do our own “True Life” and get a video camera that she could use herself to show the world her perspective of what was going on? I would give anything to be able to see her living, moving image once again. I have so very few videos of her. I was so focused on keeping her alive I never allowed myself to entertain the thought that one day she might not be here and videos and pictures would be all that we had left. But at the same time I fully understand why we didn’t. There was no more room for anything else at that time. Fighting the cancer, keeping up with appointments, living life, being together, fighting my own cancer, trips to clinic, hospital, school, making time for family and friends, playing with the cats; this is what filled our days and at the end of each we would collapse exhausted into bed where we were unable to sleep because of all the worry and trying to wrap our brains around what was happening. And yet now, today, I wish we would have somehow been able to make the room because I can pretend that if we had it would bring me comfort and lessen the pain of my loss. But deep down I know that this is not possible and no matter how many videos I would have to look at it would never be enough.  Because the harsh reality of our True Life is that cancer stole my baby and I am left to hug and kiss her only in my mind and dreams

I love the sun. On cloudy days if the sun peaks through I immediately feel my spirits lift, a surge of energy rush through my body and suddenly life isn’t all that bad. Claire, on the other hand, I think had a love-hate relationship with the sun. Before she had cancer she enjoyed sunny summer days at the beach or pool and always looked forward to her “summer hair;” an even blonder version of her “winter hair” complete with sun kissed highlights.

But cancer has a way of changing EVERYTHING. During her twenty months of treatment there were those occasional sunny summer days when she actually felt good enough to enjoy the pool at our townhouse, soaking up the sun and getting in some physical therapy in the water to help combat her neuropathy. But after cancer we were extra hyper vigilant about making sure she was covered in sun screen, especially her beautiful bald head. And I know in the back of both our minds was the nagging fear, “Will the sun make her cancer worse?” I do not know the medical answer to that question but just thinking about the possibility that the sun who had been our happy friend could now become our distrusted enemy earned its way onto the list of “How We Have Been Robbed by Cancer.”

And then there were the days when she didn’t feel well, which were most days. We had started out our cancer journey at St. Paul Children’s where the clinic was “cozy” and the rooms were tiny windowless boxes complete with a secret toilet tucked away in the cupboard!  Making the move to Minneapolis when the two clinics merged was a challenging transition, but among the “good” of the change were the spacious, luxurious infusion rooms with those big windows. Walking in there for the first time I could feel strength returning to my soul because now I would be able to feel connected to the outside world during those long days of chemo and transfusions. Claire was not so thrilled, however. Much to my disappointment, every time we came on a sunny day, regardless of the season, the first thing she would ask me to do was to close the blinds. Of course I did it, because she was the one being poked and prodded and getting pumped up with either toxins or blood. While it made me personally sad to say good-bye to the outside world for the day and to the nourishing sun which would help to soothe my own soul, I realized that it was a small price for me to pay in order to help make my daughter as comfortable as possible in an extremely uncomfortable situation. I never really knew why she wanted them closed. Maybe the sun hurt her eyes, or she had a headache, or she wanted to block out the outside world because she couldn’t participate, or she just wanted to crawl into a dark cocoon. It doesn’t really matter why. As cancer moms we do whatever we can to help our child through this scary, tedious, unfair process. So sitting there in the dark helped me get a very small glimpse into what it might be like for Claire. Her life as she had known it had come to an abrupt halt. Many days she was not able to do what she really wanted to do because of her physical limitations. When I put it in this perspective, giving up my sun for the day was nothing. I couldn’t make my daughter feel better, I couldn’t fix the cancer and I couldn’t take her pain away. But I could sit with her in her darkness.

I wonder who ever thought it would be a good idea to borrow the discoveries of Elisabeth Kubler-Ross regarding how people react to their own impending death and apply these principles generally to the experience of grief. It certainly was not her intention. In the Foreword to the 40^th Anniversary Edition of Kubler-Ross’ On Death and Dying, Dr. Allan Kellehear states, the book “…was never a study of grief and bereavement. It was a discussion of some key emotional reactions to the experience of the dying. Yes, grief was a part of that experience, but it was not the totality of the experience.” And yet somewhere along the way it became commonplace to refer to Denial, Anger, Bargaining, Depression and Acceptance as The Five Stages of Grief, thus putting undo pressure (in my opinion) on the bereaved to grieve not only correctly but in order. It is not to say that these characteristics are never a part of someone’s grieving process, but as someone who has had my fair share of grief and loss, my own experience has taught me it is complex, unpredictable, and unique to each person’s experience. In fact I believe grief has a life of its own.

Until a few years ago I suppose you could say I had a casual relationship with grief. I had said good-bye to grandparents, aunts, uncles, cousins, parents and even a friend who took his own life. But in 2012 I entered into a new, very intimate relationship with grief due to the death of my eighteen-year-old daughter Claire to cancer. This grief was all consuming because a part of me died on March 1 at 3:06 a.m. along with my daughter. To this day I cannot take a breath without a stab of pain knowing there is a hole in my heart that will never be filled in the same way. After almost two years I was just beginning to feel like life was worth living again. I could see possibilities of a future that included moments of enjoyment and happiness as my boyfriend Dan and I purchased a new home together and began settling into our neighborhood and I eased back into working. But then our world was suddenly turned upside down…again. Dan’s twenty-three-year-old son Ben died unexpectedly. How could this be? I thought lightening didn’t strike twice in the same spot. Unknowingly we had assumed since we had already turned in our “death of a child” card we wouldn’t have to repeat that horrific event, but I guess we were wrong. And so now we know the difference between watching your child die slowly and being blindsided with the news that your child is on life support and will never recover. And the difference between these two experiences is ultimately that there is no difference – they both suck! And now we both know the experience of having lost a child who was our own flesh and blood and losing a step-child. Painful knowledge that I would be content to live without. Dan told me shortly after Ben died that after Claire’s death he thought he sort of had a clue, but realized he didn’t. Until it happened to him. I told him I was so sorry that now he knew.

Even though I am being critical of putting grief into the box of stages, I do understand our need to be able to conceptualize the intangible and explain the inexplicable when it comes to grief. I have come up with my own way to describe facets of one’s grief experience based on my personal relationship with grief as well as what I have observed in others. And maybe if I am lucky enough, someday someone will borrow my ideas and misapply them just as they have done with those of Kubler-Ross. However, instead of categorizing into stages I have identified three aspects of grief which do not follow any specific pattern, can happen simultaneously or not, are not linear and yet maybe they are, and are fluid and ever changing and evolving. The words I have chosen to express these facets are:  Reeling, Realizing and Recovering.

Reeling is that feeling of being hit by an emotional tornado, hurricane and/or tsunami. It is hard to breathe, your head is spinning and everything is a blur. This time is also characterized by complete and utter exhaustion. You go through the motions of living without really wanting to be alive. You are in a state of shock and everything feels surreal. You have to remind yourself of what has actually happened because it all feels like a bad dream. Waking up in the morning is especially painful because you must face the horrible reality of your devastating loss.

My response to the Reeling phase has been exemplified by spending lots of time on the couch escaping into reality television, sleeping for 10-12 hours a night and crying a lot. I have also been known to self-medicate (which I certainly do not recommend), but numbing the pain became a priority to me during this time. And fortunately I had wonderful friends who would come over and make me go with them for a walk to get me out or would bring me food or Kleenex without me having to ask.  Also very important to me during this phase (and possibly all of them) is finding ways to honor my loved one and keep their memory alive. My daughter died a couple months short of her high school graduation. As painful as it was, our family attended the ceremony in her stead and cheered through tears when they called her name. Ironically, Dan’s son also died before his college graduation, so once again we attended another graduation ceremony for a child who had died.

Realizing is when the shock and numbness begins to wear off and it turns into devastating sadness, anger and rage. This is the time when you have to re-live the loss all over again but on an emotional level which can be exhausting. This is also a time when you learn to live a dual life. Behind closed doors depression, grief, sadness and anger are the norm but you go through the motions and pretend to live life on the outside, trying to act “normal.” By this time there is usually a cultural expectation that enough time has passed and you should be “over it” even though in reality that is ridiculous. Relationships change and become redefined during this time. You learn who you can trust with your grief and gravitate toward them. Sometimes people leave you because they can’t handle it and sometimes you have to distance yourself from others because of their unsolicited advice and judgments.

I found myself seeking out emotional support when I began Realizing. I connected with other bereaved parents online and in face to face support groups. I was also drawn specifically to parents who had lost a child to pediatric cancer. It was comforting to know others had faced similar circumstances and had survived.

Recovering is the ongoing process of healing and learning how to live with the constant companion of grief. Energy begins to return. Some days are up and some days are down, but the down days become fewer and farther apart. The ache of grief becomes familiar and you are able to embrace it without feeling devastated. From the outside looking in things look “normal” – you go to work, engage with others, laugh, have fun, complain about trivial matters like everyone else. In contrast to being dragged by others when Reeling and faking it when Realizing, Recovering is self-driven and genuine.

One of the most profound and healing discoveries for me during this time was learning how to continue my relationship with Claire in a different way. Death does not end a relationship, it just changes it. Obviously if it were up to me I would prefer to have my daughter back in the physical realm, healthy and happy. But I honestly believe my relationship with her has grown in ways it could not have if she were still alive. Another part of my ongoing healing has come through being able to give back by volunteering for Momcology (http://www.momcology.org/), a unique support community for mothers and primary caregivers of children with childhood cancer, especially working with the bereaved moms. I am also thankful that my life experiences with grief and loss have enhanced my work as a therapist. I have learned to become comfortable sitting with pain and after enduring the loss of a child there is not much left that intimidates or frightens me. I am aware, however, of my continuing need for self-care in light of possible triggers when faced with my clients’ reports of their own grief and loss and trauma. But at the same time I am honored to be entrusted with hearing their sacred stories which continually remind me of the shared human experience and that I am not alone in my suffering.

This morning as Dan and I were eating breakfast I looked across the table at the love of my life and my heart broke again when I saw the expression on his face. Complete and utter devastation and sadness. He is coming up on the one year anniversary of his son’s death and has just started a new job. Even though in the moment I was in a place of contentment and being okay with my life, I was reminded of how quickly that can change when you carry the burden of grief. I knew there was nothing I could say or do to make him feel better but I also knew from experience he would not stay in that place forever. I was also reminded of how as bereaved parents every stress we face, like starting a new job, is magnified because of our grief. Anxiety, panic attacks and flashbacks are commonplace and sometimes it is impossible to untangle the complexity of our emotions; whether they are a “normal” reaction to stress or if they are grief induced or if they are a combination of both. This is how we must learn to live our lives. I believe it is best to honor our grief, allow it to make its appearance when necessary and enjoy the moments when we feel its oppression on a smaller scale. And by the end of the day maybe Dan will come home happy and I will be back on the couch because that’s just how grief is – it’s stageless.

References

On Death and Dying – Elisabeth Kübler-Ross Foundation. (n.d.). Retrieved January 12, 2015, from http://www.ekrfoundation.org/five-stages-of-grief/

The 5 Stages of Loss and Grief. (n.d.). Retrieved January 12, 2015, from http://psychcentral.com/lib/the-5-stages-of-loss-and-grief

Stage of Grief Models: Kubler-Ross – Grief & Bereavement Issues. (n.d.). Retrieved January 12, 2015, from http://www.amhc.org/58-grief-bereavement-issues/article/8444-stage-of-grief-models-kubler-ross