Great Wolf Lodge-ic
How is Stella doing? How are we doing? Depends on who you ask and when. The tumour is obviously doing exactly what the doctors said it would and growing aggressively, wrecking havoc on her little body. She has lost the ability to walk completely and this week has also been unable to stand independently. She has lost 11lbs so has no more little pot belly and her round, cherubic cheeks are a little less round. The sunlight hurts her eyes so much that she needs to wear sunglasses when it’s bright out, or else she cries and begs for me to put my hands across her face. Her arms shake with small tremors off and on all day and night and she is plagued by headaches that have worsened, due mainly to the hydrocephalus that the doctors think will kill her long before the tumour does. We have started her on morphine during the day and night. The morphine works to take the pain away, but in some ways it also takes Stella away as it tires her so much. We are hoping that her body adjusts, but until it does, when we give it to her she sits staring off into space and does not react to anything much. Her smiles are more infrequent due to the sedating effects of the meds, but when they come they are just as bright as ever and she remains generally happy and loving.
Aimee and I fight sometimes now, usually at night after Stella is asleep and we are exhausted from getting through another day being energetic around Stella, smiley around our friends, kind and gentle to our families. We fight over silly and inconsequential things. We fight to release some of the pent-up anger and frustration we both feel. We say things we don’t mean, hurt each others feelings and then collapse into one another’s arms, holding on tightly, sobbing until our tears mix together and I can’t tell who is holding whom and who is crying where. We cling to each other for dear life, knowing we need to get through this together, yet each of us feeling lonely in our grief even with the other right there. We have never needed each other more, yet it hurts us both so much to see the other in pain, we sometimes have trouble expressing ourselves. But each fight ends with an “I love you” as we kiss each other’s tears away and steel ourselves for the future, hurting in a way that only Stella’s parents could ever truly hurt.
We met with palliative care last week and the doctor, who is a lovely and genuinely caring man, tried as best he could to answer the same question I always ask him, the question that no one has ever been able to answer… “when is she going to die?”. It seems so ludicrous to me that every single doctor we’ve dealt with since day one of Stella’s illness has been able to speak with absolute certainty that she will die, but no one has any idea WHEN. Deep down I know it’s because they don’t really know and don’t want to lead us on, or lead us astray. But I just want to know. I need to know because each day I am hanging on by a thread and I don’t even know what to hope for anymore…hope for more time, or hope it all ends soon so I can stop fearing and start grieving. The most I could get out of the Doctor was that he thinks Stella will die “in the framework of weeks”. Like 6-8, but possibly longer and possibly less. And I hear those words and they barely register in my brain. I feel like I am living someone else’s nightmare. At night, when the world is dark and quiet, I just stare at my face in the mirror, this face I barely recognize staring back at me, and I keep asking myself why? why? WHY? An answer never comes, just an old looking, tired face stares back at me blankly breathing in pain and breathing out sadness.
Do you know what I’ve done over the last seven days? We returned from a friends cottage, finalized the details of Stella’s burial, met with the wonderful woman who will be officiating the service to discuss what we want remembered about Stella, went to the graveyard and chose and paid for her place in the Scattering Garden at Necropolis cemetery and in between had 2 playdates, 2 family BBQ’s, a small birthday party for Stella, a massage, facial and a three-day trip to Great Wolf Lodge. Some days I look at my calendar and just weep. My life is completely spiralling out of control and I’m just waiting to hit that big, black bottom with a huge smack that will render me immobile and in agony.
Yet despite the bad news, the sorrow, the frustration and the daily pain there are still sweet moments that creep up on me each day and make it possible to keep going. I am learning so much about myself and the world around me. Some of the best and most important moments occurred on that trip to Great Wolf Lodge this past weekend.
Have you ever been to Great Wolf Lodge? It’s like a mini-Disneyland located in Niagara Falls where at 7:00am children still in their pyjamas can be heard screeching at their parents to buy them a doughnut for breakfast. Where larger than life stuffed versions of wild animals talk incessantly on demand when children press a button (which the children do over and over again). Where in the waterpark so many children scream in delight as they dump buckets of water on one another that it sounds like one, big high-pitched squeal from a flight of birds.
Auntie Angie, Juju, Gracie, Aimee, Stella and I have just completed our third trip in three years to this child’s paradise. The first time we went Stella was 11 months old. Not quite able to walk, but she could easily pull herself up and we spent lots of time wading in the kids area and taking turns holding her in the warm pool. She had a sunshine-coloured bathing suit with a little skirt on it and delighted in twisting her hips and making the skirt twirl as she balanced against the pool enclosure, making herself, and us, giggle. Stella was waking up at around 5:30am back then, so when she got up we would leave the hotel room and sneak down to the “Great Wolf Room” where we would read books, play with stacking cups i brought and watch the rest of the hotel wake up. I always laughed a little when I saw exhausted looking parents in their pyjamas lining up at the Canoe Cafe as soon as it opened at 6:30am, paying way too much money for cups of steaming coffee.
The last time we were at Great Wolf Lodge was in February. Stella and Gracie ran rampant all over the hallways, chasing each other down the halls and screeching in delight as they balanced on the massive windowsills by the elevators that overlook the waterpark. On that trip to the Lodge, Stella threw up on me one morning right on the carpet next to the animated tree in the main lobby. By that evening, I was sick with what I now call “Great Wolf Lodge’s Revenge” and spent hours in the bathroom staring at the gaudy green wallpaper and wishing they made the wolf print look more like a wolf. It was so irritating. I swore never to return after that but…Stella and Gracie love it there and I want so badly to make her happy, so back we all trekked suitcases packed with snacks and books, back to Great Wolf Lodge.
Great Wolf Lodge-ic #1: Never say you can’t or won’t do something, because the universe has a way of challenging that notion. Aimee and I used to talk all the time about how we would never be able to handle it if something ever happened to our child. Working at a camp for kids with cancer and volunteering at a grief camp, Aimee has seen plenty of sadness in her work but we always assuredly said to ourselves, “boy…we’re so lucky that didn’t happen to us…”. And then, one day it did. And now we are doing it and living it and people are telling us they don’t know how we do it. And I always think, ‘I’m not doing anything. Can’t you see that I’m falling apart and my heart is ripped open, bleeding on the floor in front of you’. But people don’t want to hear that, so I just say “one day at a time” and smile a fake smile, clenching my fists and swallowing a scream.
This trip, when the doors to Great Wolf Lodge opened up before us and I saw the grand living room, I was instantly triggered. My mind went into overdrive with the hundreds of memories I have of Stella at various times and ages there. I found it hard to breathe and my heart started racing. I quickly swallowed one of my anti-anxiety meds and tried to get ahold of myself. But all of a sudden it just felt like too much…too many kids, too much noise, too many memories…I looked around wildly, trying to think of a way to escape. But of course, much like parenting a dying child, there is no escape so we just checked in and immersed ourselves in the howling of the lodge, ice cream pedicures and all.
Lucky for us, Stella adores both her aunties and so I was actually able to get a short break as Juju and Angie played with Stella in the hotel room. They are both so different with Stella, but equally incredible. Julia (Juju) has the patience of a Saint, and never tires of playing. Her imagination is big and beautiful and she engages Stella in a way very few people can. Andrea (Angie) is more realistic in her play, but incredibly gentle and will do anything it takes to make Stella laugh, including putting Carrot the Bumble Bee puppet on her hand and making him do all kinds of wacky things with a terrible British accent we all openly mock. But stepping back, not having her in my arms for once, watching Stella play with Juju and Angie and Gracie, she didn’t look or feel as sick to me as she had earlier that day. I had to look a bit harder to see it, past the morphine and the skinny weak legs, past the tick in her face, but I saw the sparkle in her eyes that had been there since the day she was born.
Great Wolf Lodge-ic #2: Stella is still here, even if she has changed a little. I might have to work a little harder to find her sparkle, but it’s still in there and I should enjoy it now instead of dreading the future which is completely out of my control anyhow. But I can control today and love her today and enjoy her today.
Our last evening at the lodge, I left Aimee in the hotel room to put Stella to bed and went down to the waterpark. Andrea and I lined up and went on as many watersides as possible together. As soon as the tubes would slide into the brightly coloured plastic silo’s I screamed at the top of my lungs…screamed and screamed until I couldn’t breathe and my voice hurt. I screamed out the frustration and helplessness I feel about Stella’s cancer, screamed at all the people who say or do stupid things that hurt me, screamed for help, for rest, for peace. I just opened up my mouth and screamed. And it felt so good to be hurtling down those slides screaming at the top of my lungs. Scream I told myself, just scream. And I did. By the end, I was panting but felt calmer than I had in weeks.
Great Wolf Lodge-ic #3: Just SCREAM.
After I screamed myself silly, I sent Juju and Angie away to the hot tub so I could hang out with Gracie. Gracie, for those who have never had the pleasure of meeting her, is only a year older than Stella. Aimee and I were so thrilled when Stella turned out to be a girl as we envisioned Gracie and Stella growing up as best friends, spending all their free time together, playing at the grandparents house, attending camp, being closer than sisters. Gracie has beautiful olive skin, an athletic little body and huge green eyes framed by luscious lashes that look so much older and wiser than her 3-years. I haven’t spent as much time with Gracie as I used to before Stella was sick. It’s not because I don’t want to, it’s because Stella takes almost all of my time and energy. Gracie was so excited to be at Great Wolf Lodge, she was literally bouncing off the walls. In the pool together, Gracie and I sang and swam and she jumped to me. I found myself laughing. Laughing and really meaning it. I was having fun with Gracie because I didn’t have to pretend anything with her. We were silly together, and she jumped into my arms with full trust. I realized that I do have the capacity to be truly happy, and that someday I will feel that way again. Stella will be gone, but there are so many other beautiful and wonderful things in my future…like my son, like Gracie, like our friends and family.
Great Wolf Lodge-ic #4: Losing Stella hurts so much, but I need to remember that it’s also okay to laugh and have fun because long after Stella is gone, I will still alive and I deserve to have a good and joyous life. I deserve to laugh again and love other children and let myself be happy. In fact, I owe it to Stella and to her memory.
So there you have it. Life lessons interspersed with all-you-can-eat-buffet, stuffed animatronics, water slides and cookies covered in one inch of icing. Great Wolf Lodge-ic. Howl away, world.
Gracie and Stella at Great Wolf Lodge, February 2011 (before DIPG entered our lives)
Stella at GWL, Feb. 2011:
Stella at GWL, September 2011. Can’t walk, but we can still swim!: