A Cage of Metal and Tears

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A Cage of Metal and Tears

 

Stella is nearing the 16-month mark of being diagnosed with DIPG.  She continues to decline physically, but also continues to live, sticking her tongue out everyday to let us know what it is she’s up for.  We’ve been to Riverdale Farm, out for dinner, out for ice cream, to the Farmer’s Market and to Kimbourne Drop-In Centre this month.  If Stella sticks her tongue out, we go.  If she asks for it, she gets it. We sense that we have been given a second chance with Stella since her “near death” in late August, and we are running with it.

 

We have seen changes in the last few weeks with our girl.  Stella is physically a rag doll now.  She is the physical nightmare I imagined months ago when I realized what this tumor was capable of.  She has no independent control of her body left whatsoever…essentially she is a quadripalegic. Some days she can’t even open her mouth to eat.  Her left eye now rolls to the side.  She can’t hold any part of her body up or move anything at all.  It’s hard to help her do and see things.  When we go to the farm, one person has to hold her body up and the other has to hold her head up and try to move it in a way that her eyes (which naturally look down and left), can see the animals.  When she paints, I have to drape her limp body over my lap and then hold her head up with one hand and use the other one to do hand-over-hand with the paintbrush.  It’s physically exhausting, but worth every second of the struggle.  It is almost impossible for her to smile anymore—the effort is too much, but her eyes tell us how she is feeling.  We don’t know how much longer we will be able to have her physically with us, but we’ve decided to plan for the longer term and take each day as it goes.

 

A couple of weeks ago, as part of our longer-term plan, Aimee and I began mulling over the idea of getting a wheelchair for Stella to help her sit more upright.  Our rationale was that with the proper support and ability to sit, she might be able to participate more in activities like dinner at the table, or playing at Kimbourne.  So, last week, we had a salesman come a couple of options for us to test out with Stella.  I think the salespeople try to make the idea of a wheelchair seem less frightening by referring to it as a “special needs stroller”, but when you see her in it, a bunch of padded bars holding up her head and a bib under her chest, it becomes apparent that this is a wheelchair in every sense of the word.

 

I was caught completely off-guard by the way I felt when I first saw her sitting there.  The shock was almost too much for me, and though I feigned excitement and happiness at seeing Stella sitting upright again after nearly a year of having to lay down, inside my heart was breaking into a million sharp little pieces, scarring the inside of my chest.  She looks so…so…so sick in her wheelchair.  So frail.  So helpless.  I hate it.  I hate the metal cage with wheels on it that holds her body in an unnatural position, trapping her in a web of buckles and straps,  a veritable scarlet letter that screams “different” with a capital “D” at the top of its lungs.

 

The truth is, we can’t afford the “Special Needs Stroller”.  It’s $10,000 and although the Ontario Government will give up to 75% to families towards the cost of a wheelchair, Stella doesn’t qualify for the grant from the Government because she is palliative.  That’s right.  If you’re dying, the Government won’t pay for your wheelchair.  Why should they?  The person using it is just going to die anyway, what a waste of money, right?  Hearing that news from the salesman was a slap in the face, but I was also secretly relieved. I don’t want to see her in a wheelchair.  It’s too hard for me.  I will do anything for Stella, even torture myself further by putting her in that damn chair, but if I don’t have to, I’m thankful.

 

Over the last few months, I’ve often gotten frustrated with people who make comments about Stella out in public.  The whispers I’ve heard about how she’s asleep, when she’s not. The questions about, “what’s wrong with her?” The comments and tongue clicking that occurs when people mutter that she’s too big to be in a stroller, and too old to be drinking from a bottle.  For the most part, I try not to let it bother me.  These people are strangers, they mean nothing to me, and I owe them no explanation (although once in a while when I’m feeling particularly irritated I look them in the eye and say with calmness, “actually she has a brain tumor”, in the hopes of making them feel badly about their judgments).  So, before we got it, I was partially excited about the wheelchair because I felt like it would draw a clear picture for people of the fact that Stella is not tired, or lazy, or spoiled, but that she is sick and needs a little extra help.

 

The salesman who came agreed to let Aimee and I trial a wheelchair for a week so we could decide if we liked it or not—though we have no intention of actually buying it.  Aimee understands that I am having trouble with the wheelchair, but she reminded me that if it was the best thing for Stella, we need to give her the opportunity to use it.  So, we agreed to try it out and I loaded it into the back of our minivan chattering excitedly to Stella about her special new chair.

 

I was so upset the first time I took her out in public with it.  We went to a big Fall Festival in a local park where there was face painting, horseback riding, food, music, etc.  I gathered all my courage, placed her into the wheelchair, did up all the straps and tightened the headrest, then began to push Stella around the park, amidst huge groups of children running around, adults standing in groups talking and laughing, and the swirl of autumn leaves raining down on us.

 

Already feeling conspicuous, I soon learned that far from being something that cut down on looks, stares and whispers, the wheelchair invited even more of them.  I felt every eye on me when I pushed her around.  I lost count of the amount of pitying looks I got from other parents as I tried to manouever Stella’s wheelchair around.  I can stand a lot, but not pity.  People who feel sorry for me underestimate how much joy and purpose Stella brings to our lives.

Not quite sure what to do, I decided to take Stella to the craft counter where we could paint pumpkins together.  It was packed with kids and parents painting pumpkins, and I was surprised to notice that other than a whole slew of stares, no one paid any attention to us at all.  As in— no one moved aside to let us near the crafts, or offered to help gather supplies for us.  We were effectively shut out of the craft table.  I ended up having to push Stella away from the main craft table and brought some art supplies over to her.  But she didn’t get to sit at the table with the other kids, and she didn’t get to pick from all the paint colours like the other kids, and she didn’t get the people running the table complimenting her on her pumpkin and offering suggestions and assistance.  Luckily she didn’t notice, but I sure did.  Similarly, over at the face painting table a group of volunteers was busy giving children faces full of beautifully coloured butterflies with sparkles that spread from their cheeks to foreheads, to chins.  I stood in line with Stella but when it was our turn, the volunteer took one look at Stella in her chair and said to me, “I’ll just put a tiny butterfly on her cheek for you” and took a plain green paint stick and did a tiny outline of a butterfly on one cheek.  I felt embarrassed.  I should have gotten angry and stood up for Stella, demanding she get a big, sparkly butterfly like the other kids, but I felt like I’d been punched in the gut and slinked away. I pushed Stella over to the pony rides and we watched the other kids ride ponies.  Then we wandered over to the bouncy castle.  I asked the people at the castle if I could bring Stella in if I held her and just sat in a corner and let the other kids bounce us around.  They said no, it was too dangerous.

 

It was then that I came to the heartbreaking realization that my daughter and her wheelchair were being treated like a disabled person— and disabled people in this community were treated as lesser human beings.

 

How sad and sickening.

 

The more I stared at Stella sitting there in her wheelchair, the more I couldn’t hold back the tears.  As she sat watching the Bluegrass Band, I began to cry.  My dad rubbed my back and I just turned to him with tears running down my cheeks and said simply, “I’m sad”.  He nodded.  He knew.  He understood.  He told me to go for a little walk to regroup, so I did but I didn’t feel any better when I got back.

 

I have tried my hardest to live every part of this journey with as much strength and dignity as I possibly can, but that wheelchair very nearly broke me. The stark contrast of the girl Stella once was to the one she now is, is too much to have staring at me in the face so blatantly day after day.  When Stella is laying in my arms on the couch, or sleeping in her stroller, I can still see my daughter and can find a way to keep going, to keep smiling, to keep helping her live the best life ever day after day.  But for some reason, that wheelchair cuts too deep.  I’ve asked Stella if she likes her new stroller, and she sticks her tongue out yes, but I don’t think it’s made our life any better or more bearable.  In fact, I can’t wait for it to go away. At least Aimee and I agree that she doesn’t look overly comfortable in it.  Maybe sitting upright increases the pressure in her head due to the hydrocephelus. Maybe it puts too much pressure on her tailbone.  Maybe it makes it harder to see us because she faces away.  Or maybe we just can’t tell if it is good for her or not because she has been so tired the last few days.  Personally, I think that the girl who once would never sit still for a moment, hates the restraints that criss cross her body because she knows they act as a barrier to her bursting free.

 

I think wheelchairs are wonderful for many people.  I know that they offer independence and mobility and empowerment.  A few months ago, it probably would have been amazing for her.  But not now.  Not at this point.

 

As we near the end of our journey with Stella, I have decided that she doesn’t belong in a cage of metal and restraints that brings sadness and pain to me, and whispers and separation to her. Stella belongs in a place I can kiss her and whisper “I love you” whenever I want.  Stella deserves to be free.  Instead of a canvas seat strung on two metal bars, I want her to sit on a cushion made of my warm legs. Instead of buckles and belts, I want her to be held in place by my strong arms.  Instead of a seat that forces her to face away from me, I want her to see me looking at her with love and pride.  Instead of a contraption that keeps her further away with its focus on cold, grey distance, I want her close by and surrounded with nothing but love and warmth. From now until forever I want to be her chair. Holding her close, supporting her in everything she needs, and keeping her safe.

 

Stella and her new wheels:


 

Painting at Kimbourne:

Riverdale Farm:

Ice cream trip:


Fall Vision:


 

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The Strength of Stella

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The Strength of Stella 

Thank-you so very, very much to everyone who has been keeping vigil with us and Stella these last five days, both from near and far.

 

Thank-you for your prayers, your candle lighting, your faith, your food, your company, your love, your cards and your caring.

 

I wrote a blog several months ago about religion and faith and trying to figure it all out.  I’m still in the midst of my spiritual discoveries and journey, but I have to share with you that I am convinced Stella can feel the great powerful energy that has been generated on her behalf because, once again, she is defying what the Doctors told us.

 

Last Tuesday we were told that Stella was fading quickly, that we were down to days with her (the fourth time we have been told this in the last 14 months).  She was sleeping almost constantly and eating only small amounts of ice chips.  Not able to reliably swallow her medications any longer, we moved her to a morphine pump to control her pain.  We spent three days monitoring her every breath.  We carefully recorded the last time we had seen her laugh, or smile.  We watched her struggle to open her mouth even a little bit.  We carefully swabbed her eyes which were crusted over, staring at nothingness. We stroked her hair, told her stories, gave her kisses.  We put a sign on the door indicating we were not longer accepting visitors.  Our families took time off work and school and came to us.  The Doctor contacted the funeral home to confirm everything was ready.  The person doing Stella’s service contacted us with final details.  Aimee and I held each other and kept repeating that we were going to get through this.  Our hearts broke, our stomachs churned, our racing minds kept us awake at night.

 

And then…incredibly…since yesterday…Stella has come back.  Out of nowhere her eyes are suddenly open and clear.  Her colour has turned from ashen to pink.  She is able to drink fluids again.  She is able to eat again.  She has even smiled a few times.

 

We don’t know what to make of it.  The Doctor doesn’t know what to make of it.  We are still cautious about what all this means.  We have not exhaled completely yet, but we were almost giddy with excitement today when Stella seemed up for playing again.  Trying to cram everything in that we could, we took her to the backyard to play in the sand and baby pool.  We gave her a bath. We pulled out her electric car and took her for a drive.  We read books.  We sang songs.  We laughed.

 

We don’t know what tomorrow will bring, but today gave us a hundred more memories and 133 more photographs of another day with our girl.  And I can’t figure out any reason that this could have happened, other than that the universe was so full of love and light for our girl that she decided to give us a little bit more herself.

 

Also below are two blog entries from Stella’s Aunties (Heather and Juju).  They are different. They were written on different days, in different styles.  They are about different things, but they both pay homage to how our girl continues to amaze and teach us about life…and ourselves.

Today our family made some memories!

Another day with my girl:


 

Humour Is A Funny Thing

By: Auntie Juju (Julia Gonsalves)

Humour is a funny thing. Sometimes its about words, sometimes its about the placement of a pause, a facial expression, purely a context. Stellie you have brought out the most basic humour in all of us- makeshift costumes, the animation of inanimate objects, mock stealing, the “I got your nose” kind of humour that delights kids your age, and adults our age in times of crisis especially. It is humour we don’t need to think about, or plan, or even be funny to pull off well. And there are some jokes that really never get old- the ones that end up in a smile, a laugh or a smirk from you. And often the ones that don’t make you smile, make us smile amongst ourselves because we are making fools of ourselves and we suspect that you know it. Maybe we even embarrass you sometimes, because you give us that plain look of a teenager that says do you have any idea how ridiculous you look? Humour has been here ever since your diagnosis- lucky for you kid your family was pretty damn funny to begin with (mostly intentionally). We make jokes about the most untouchable topics now, and we stand on our heads for your sake Stellie, but also for our sake. Because of you we’ve discovered that your Auntie Angie does a spirited british accent and has some intense puppetry skills she would never have revealed, didn’t even know she had, before this. Stellie because of you we have cried much less than we expected to, and laughed much more. We have been training our bodies with your help since last June to retain the practice of laughter as a tool for support, connection with each other, barrier from severe mental health symptoms, and a creator of energy when any of us finds those reserves completely depleted. Stellie thank you for appreciating our humour, from the most basic to the occasionally more advanced, for encouraging it by random flashes of the most brilliant smile. Thank you too for allowing me to feel confident that even when you are physically unable to smile, that you still value our attempts, and translate them, for you and for us, in languages of love, and security, and mutual benefit.

Anything for the promise of a smile: 


Our Extraordinary Girl

By: Auntie Heather (Heather Methven)

The journey with Stella is comparable to the opening tornado scene in The Wizard of Oz. Our families have been swept away and we are constantly churning in a state of fear, uncertainty and unpredictability. I thrive on routine, facts, order and predictability. The unknown drags me down into a pit of anxiety and panic. This whole journey has taken me out of my comfort zone and forced me to confront my biggest fears as well as, fears that I didn’t even know existed. This journey has also taught me valuable lessons and has changed my view, as well as my thinking on a lot of areas in my life. It has made me weaker and it has made me stronger. This year has been the most devastating, yet extraordinary year of my life…if that makes sense.

 

The devastating piece that we have known from the start of this journey is that Stella will die. I still cannot even phantom how we are all going to cope when our girl is gone.

 

The extraordinary piece is that we grew closer than ever as a family. We laugh, cry, vent, support and enjoy each other. I have realized

how precious time with family is and I will always ensure it comes first before anything else.

“The only rock I know that stays steady, the only institution I know that works is the family.” – Lee Iacocca.

 

The extraordinary piece is that Stella was only given approximately three months to live but she amazed us all and is still with us after fourteen months. Fourteen glorious months of special memories and time spent together.

 

The extraordinary piece is how adaptable Stella has been through this all. We were fiercely distressed wondering how Stella would cope when she lost her abilities one by one. We all eventually realized that our

distress was our distress. Our girl would provide us with valuable lessons on endurance and perseverance. As Mishi reminds us “Just because you can’t walk, doesn’t mean you can’t dance.”.

 

The extraordinary piece is how many people have “stepped up” to help us and hold us up through this journey. Mishi and Aimee have always had the most exceptional friends (which is actually a testimonial to them). Family, friends and strangers have joined us, comforted us and assisted us throughout the entire journey and we will forever be grateful.

 

The extraordinary piece is learning from two of the most remarkable mothers in the world. They have shared their journey with all and opened their minds, hearts and feelings knowing that it would put them in a vulnerable position.

 

The extraordinary piece is that Stella has changed the lives of many and has accomplished more in her three short years of life than most adults ever will. We have all learned exceptional lessons from our girl that will stay with us forever. She is the best teacher I have ever known.

The extraordinary part is that Stella is a living treasure of gold, she left her mark on the world and the world is a better place because of it.

 

We have all been blessed with support from others. There have been so many people that have personally helped me navigate through this. It would be unfair if I did not mention two very special ladies that have kept me from enduring a nervous breakdown during this turbulent time. Andrea (my therapist) and Wendy (Daniel’s mom).

 

As soon as I found out Stella had DIPG I spent hours and hours looking for anything and everything I could possibly find about this monster. I joined every on-line DIPG group. I followed blogs of parents who have had or have a child with DIPG. I have read obituaries from thirty-two children who have passed away from this atrocious disease since Stella’s diagnosis.

This is a reoccurring poem that I have seen on many of the DIPG websites; I would like to share it with others:

 

After the death of a child

Please, don’t ask me if I’m over it yet.

I’ll never be over it.

Please, don’t tell me she’s in a better place.

She isn’t here with me.

Please, don’t say “at least she isn’t suffering”.

I have yet to come to terms with why she had to suffer at all.

Please, don’t tell me you know how I feel-

unless you’ve lost a child yourself.

Please, don’t ask me if I feel better.

Bereavement isn’t a condition that clears up.

Please, don’t tell me “at least you had her so many years.”

What year would you choose for your child to die?

Please, don’t tell me that “God never gives us more than we can bear.”

Please, just say you are sorry.

Please, just say you remember my child.

Please, just let me talk about my child.

Please, mention my child’s name.

Please, just let me cry.

And, if you are brave enough, you will share the story of our extraordinary girl.

Auntie Heather sings Stella her favourite songs:

 

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Running

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Running

You know how sometimes you’re running, and you get to that point when you feel like you can’t keep going because your chest is hurting, you can’t catch your breath, you have a stabbing pain in your lower right stomach, your calves are burning and you know it’s just time to give up and walk for a few minutes?  That’s how I’ve been feeling this week.  Except I don’t have the option to stop running, so I keep on going even though it is pushing me past my outer limit of endurance, pain and tolerance.

And as I keep running, I ask myself, “Are we there yet?  Did I get up the steep hill?”.  And crazily enough, the answer is  “No.  You’re not even close”.

It’s becoming more and more difficult to drag ourselves out of bed and do the same thing day after day after day.  I can barely stand to look at Stella any longer because it hurts my heart so much.  She has completely lost any control of her body, it’s like carrying around a sack of potatoes.  Her head falls backwards when you lift her up, her eyes look left or right, but rarely to the centre where they can focus.  Her legs hang limply, shaking uncontrollably.  Her muscle-less arms flop around like fish on the sand.  She has been able to say some words that last few weeks… “No” is still pretty clear, once in while she says “Gr” for Gracie and “Deck” for “Decorate” (which really is referring to the weekly Gracie sleepover where we decorate cookies and then sing Happy Birthday with candles).  Other than that, she spends upwards of 13 hours a day sitting on the couch either staring at the wall, or closing her eyes, in and out of sleep.  I look for her everyday, but it’s getting harder and harder to locate my beautiful, spirited daughter in this heap of cancer that lives on my couch.  This part is hard.

Since Stella was diagnosed almost exactly a year ago, Aimee and I have focused all of our energies and our goals around her quality of life.  But now I realize how narrow my understanding of quality of life was.  It was so easy to believe we were doing all the right things for her when we were eating ice cream for breakfast, going to the park anytime, having playdates, big birthday parties every month, letting her do whatever she wanted, whenever.  But I didn’t realize that at some point in this journey “quality of life” would mean nothing more than “pain free”.  And though I am eternally grateful that Stella seems content and comfortable, I cannot stand to sit day after day and watch her slowly waste away on the couch as the tumour continues to eat away at her brainstorm.  The cold, hard truth is  that Stella’s quality of life isn’t that great right now, and neither are mine or Aimee’s.  We are so lucky to be surrounded by an incredible group of friends and family that sustain us, but we are all hurting and we are all tiring and we are all struggling to manage our own emotions and fears.  I see my own pain reflected back like a mirror in the eyes of those that love us, and I know that each one of us is struggling to keep going without pitching forward and giving up.

The constant hurt of seeing Stella sick makes it hard to do completely normal things.  It makes it hard to go to the grocery store, which is full of little girls with curly hair running up and down the aisles.  It makes it hard to go through Stella’s drawers looking for a t-shirt and see the bathing suits, socks and sunhats from last year that will never be used again. It makes it hard to watch Gracie choose to play with Sam over Stella sometimes, because he at least acknowledges her and laughs at her antics and plays back whereas Stella mostly just sits silently her eyes half closed.  It makes it hard to sit outside on the front porch and listen to the neighbourhood kids playing street hockey, riding their bikes, chasing balls.  It makes it hard to know that Stella’s peers are all getting together, running and laughing and playing in the park after Sportball on Saturday mornings.  It makes it hard to walk the streets where we live, the same streets that I grew up on and that I imagined our daughter running up and down too.  It makes it hard to cook dinner, knowing Stella can’t eat any of it.  It makes it hard to celebrate all of Sam’s milestones…sitting up on his own, eating Cheerios, babbling…because for every function he gains, Stella loses one.  It makes it hard to go to Zellers and walk by the kids shoe aisle where we used to pick out Dora running shoes.   It makes me enraged that Stella should be in all these places with us, with her friends, but instead she’s on the couch dying.

Maybe I’m projecting my own feelings, but I swear sometimes Stella looks up at me with her big blue eyes, my face just inches from hers as we breathe the same breaths on the couch, and I can hear her in my head asking me what is happening to her body, why she can’t do anything anymore, what am I going to do to make it better?  I look at her and I know that Stella is completely dependent on Aimee and I and our friends and family for everything—food, drink, bathing, diaper changes, entertainment, joy.  I see that she trusts me implicitly and trusts that whatever is happening to her body, Mama will fix it.  But I can’t fix her.  I remember the days when I could fix any boo-boo with a loud kiss and sometimes a Sesame Street Band-Aid.  But this time, I can’t do anything but sit and wait and watch and it’s the worst kind of torture you can imagine.

Like any parent, I like to brag.  I like to come on here and write about the amazing and special things that Stella has done and taught us.  I like to remember how incredibly alive she is even as she lay here slowly dying.  But today, all I feel in my heart is pain and exhaustion, and I can’t see past my own blinders of tears to come up with something good or inspiring to record and share. Today it just hurts.  And that’s about as honest as I can get.  There are some days that are great, some that are good and some that just rip you to shreds.  And the last few weeks have been the hardest so far.

I sometimes try to put things into perspective, and remind myself that there are lots of horrible ways to die.  I watch the news and hear about children who have been viciously murdered, whose last moments on earth were filled with pain and terror, I see those Sunday morning “Save a Child in Africa” commercials where children are starving to death, I remember the war and famine and violence in the world and I try to tell myself that we are lucky that Stella has had such a beautiful life, full of nothing but love and smiles.  But I also know that my daughter is being forced to die in a horrible way.  Other parents whose children have died of DIPG all tell similar stories of the heartbreak of watching your child lose their functions one by one.  There is no easy way to say it— it’s horrific and I hope feverently that one day there will be a cure so that other parents will be spared this awful path.  There are lots of terrible ways to die alright, and DIPG is one of them.

And so, I find myself desperately caught in this complex web of hopes and emotions, wanting to cling to my daughter with all my might, not able to fathom a life without her beautiful smile, yet also wanting it all to be over so that I don’t have to watch her suffer anymore, and don’t have to walk this path of suffering with her, feeling every lost moment in my soul like a knife.

Her smiles are so few now, but they still flash from time to time, lighting up the room and giving me the extra bit of strength I need to keep running.  But the sad part is, at the end of this race there is no trophy, no victory, no joy or pride at having finished.  There is only a black wall for me to hit head on, where Stella is gone forever, and I’m not sure what lies behind the dark brick blocking my view of the future.  I know Aimee and I will get to a good place again someday, and it’s that knowledge that keeps me going.  But the way to get there is terrifying.

Do me a favour— if you are lucky enough to have one, give your child an extra squeeze tonight and no matter how mad they make you tomorrow, remember that there is at least one mom out there who would give her life to feel her child hug her back one more time.

Off to the couch now…gotta keep running.

Auntie Heather feeds Stella ice cream under the tree on our front lawn:

Mommy and Stella:

Brad serenades Stella:

Gracie cuddles with sleeping Stella:


 

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Letting Go

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Letting Go

 

“You have to start letting go”

 

These are the words that were told to Aimee and I just under a week ago.  Although I know exactly what the person was saying and why, I felt so angry at hearing the words spoken out loud.  They sounded shocking, jolting even.

 

Let go.

 

I’ve been letting go for almost a year now.  I’ve let go of my dreams for Stella’s future, I’ve let go of the visions of her playing soccer and running in the schoolyard and jumping off the Dock at our friends cottages.  I’ve let go of the plans we once had for our family, the thought of Stella being a tough, protective older sister that kicks anyone’s butt if they tried to harm her younger sibling.  I’ve let go of trying to understand why us, what did we do, what did I do,. I’ve let go of my job, I’ve let go of 90% of my social life, I’ve let go of my self-indulgence.  I’ve let go of Stella’s ability to walk, sit, hold her head up, talk, use her arms. I’ve let go of almost every part of my daughter and her personality, and now I have to let go of what’s left… a shattered pile of shining blue eyes, random smiles, soft curly hair and warm porcelain skin.

 

Let go.  I don’t know how much more letting go my heart can take, yet here we are being told, by those who know, that the worst is yet to come.

 

Stella has surprised all of us, including the Doctors, with her desire to live life to the fullest and ignore every rule of how and when she should be getting sicker and dying.  But Aimee and I never once fooled ourselves into believing that she would live forever, and now what once seemed foggy and far in the distance is creeping closer and closer, the how’s and when’s becoming clearer.  The window of time we have left narrowing with each passing week.  The walls are closing in and they are suffocating us as they tighten around us.

 

For the last three weeks Stella’s energy has languished.  Her interest in doing much of anything other than sleeping and sitting silently on the couch has all but disappeared.  It is a daily struggle to pry her mouth open for food and drink.  She just won’t unclench her teeth most of the time.  She sleeps off and on more and more.  She is unable or unwilling or uninterested in interacting with us, or others, a lot of the time.  Usually when I look at her now I keep thinking how tired she looks.  How skinny her arms and legs have become with no muscle tone whatsoever.  How when she sleeps her skin takes on a translucent look with her mouth open, her tongue hanging out and her eyes still half open as the tumor doesn’t allow them to close all the way anymore.  Our tough little girl suddenly looks so little and fragile.

 

Our beloved Palliative Care Doctor came over yesterday.  We knew it was going to be a hard visit as he had been watching and waiting along with us over the past three weeks to see if she would have a  “miraculous bounce-back” as she has so many times before…at least 6 or 7 times before, the little rascal.  But after three weeks of lethargy and declining interest in the world around her, after hearing how her breathing patterns change sometimes and how unfocused she gets, we all came to the conclusion that we have entered a new chapter in our time with Stella.

That long feared for chapter called, “Letting Go”.

 

More than likely there will be almost no more traipsing to Riverdale Farm.  She may or may not ever go swimming again.  We may get to Sobey’s for avocados one more time, or we might not.  Every “first” can also be a “last” and every “one more time” could be “the last time”.   We expect that this next stage of Stella’s cancer will be the watch and wait stage.  The stage where we can offer no more to her than warm arms to hold her, loving hands to give her food and drink whenever she feels like it, our voices to remind her of her life with us.  We sit with her and tell her the story of how she was born, retell stories of all the fun things we’ve done and repeat over and over again how she is loved so much by so many people.  This stage is where we start to create distance between ourselves and the outside world, to cocoon and shut the door, to not return calls or emails for awhile and never look at the calendar or clock.

 

The Doctor said that in his experience the time we have left with Stella is between 1 and 4 weeks.  Knowing my daughter, I wouldn’t be shocked if she doubled the expected timeline, but the truth is whether it’s one week or eight or twelve doesn’t matter that much to me.  No matter what it’s unfathomable.  Too hard.  Too sad. Too unfair. Too soon.

 

I’ve started to have vivid dreams about Stella almost every night.  In my dreams, Stella is running around and is so happy.  Last night I dreamed we were at the park and she was running up and down the slide when suddenly she pointed behind us and I turned and saw Barney (that unforgettable big purple Dinosaur) performing just behind us in the tennis courts.  She and I raced to see who could get to him first and her cheeks were so rosy as she ran in front of me, her curls whipping in the wind, her strong legs propelling her faster and faster.  She beat me there and turned around to give me a huge triumphant grin before launching herself into Barney’s arms and proudly showing off her prize for winning (it was a singing Barney stuffed animal…of course!).  When I woke up and looked over at her lying so on the pillow next to me, her body weak and tired, I closed my eyes again and tried to get back to my dream.  But sleep wouldn’t come and so I just lay there and stared at her trying to imagine a day when I couldn’t hear her soft breaths next to me anymore.

 

Aimee and I agree that we both feel selfish about our time with Stella now.  We want to just take turns holding her in our laps and spending time with her.  We don’t care about cooking, cleaning, visiting, keeping up with emails or returning calls.  We just want to sit and enjoy our family, to create a nest and just be in the moment without thinking too much about the coming days.  We are trying to keep it quiet for ourselves, and Stella, right now. So we turn the TV off a lot of the time and just focus on being present.  We sit outside on a blanket in the sun, or sit on the couch and talk quietly.  We read books.  It’s actually been nice to have some quiet family time recently.  It’s been hard for me to stop trying to push Stella to do things and pester her to go on walks or to the library.  I sometimes think that if she would only push herself to get there, she would light up and smile again once she remembered how fun it is.  But Stella knows better than me what she needs…she always has.  And what Stella seems to need right now is quiet time with us to just BE.  No games, no TV, no outings.  Our only job right now is to listen and love and live for today.  If only I’d breathed those words my whole life, I’d probably have been a much better person.

 

We’ve always known we only have “today”, but the message is louder and clearer this week.  I have no idea how the next weeks are going to play out.  If Stella will continue a slow decline and her light will burn out slowly, like embers in a fireplace, or if she will suddenly shut down like a candle being blown out.  Or…there is always that distant hope and possibility that she will defy convention again and bounce back for another few months of laughing in the sun.  Not matter what, we will all travel the path next to her, right until the very end.

 

Our star is still shining brightly, but she’s just getting a little bit further and further away from us and a little bit closer and closer to her permanent home in the sky.

 

And Aimee and I both know, there is no easy way to get from the earth to the stars.

 

Stella sitting in her new beanbag chair:


Stella in her wagon…Sam being a little brother, pulling her hair:


Sleeping in Auntie Juju’s Arms:


Sleeping in Poppa’s arms:


Stella and Gracie painting in the front yard:


 

 

 

 

 

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The Long and Winding Road

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The Long and Winding Road

Lyrics: The Hollies

The road is long
With many a winding turn
That leads us to who knows where
Who knows when
But I’m strong
Strong enough to carry him
He ain’t heavy, he’s my brother

So on we go
His welfare is of my concern
No burden is he to bear
We’ll get there
For I know
He would not encumber me
He ain’t heavy, he’s my brother

If I’m laden at all
I’m laden with sadness
That everyone’s heart
Isn’t filled with the gladness
Of love for one another

It’s a long, long road
From which there is no return
While we’re on the way to there
Why not share
And the load
Doesn’t weigh me down at all
He ain’t heavy, he’s my brother

He’s my brother
He ain’t heavy, he’s my brother…

 

I’m scared.

 

There has been a change in Stella over the last two weeks, and it’s making my heart squeeze.  Aimee and I continue to get up each day and greet our kids with enthusiastic smiles and energy, but it is forced.  We are living with 100lb weights on our souls.

 

Stella is tired.  Her body is tired, I can see it with my eyes.  Eyes that have carefully watched this child grow, flourish, and now fade.  Eyes that have been looking, waiting, watching for the changes– no matter how subtle–her entire life.  I remember watching for her first tooth, for signs she would start crawling, for her first word, her the first time she said “up” and wanted a hug.  But I never thought I would be looking for signs of her body shutting down when she was still just an adorable little girl that should have her whole life ahead of her.

 

Of course, we don’t really know 100% if Stella is just resting for a couple of weeks and then will bounce back for some more adventures, but I feel an uneasiness about it all.  Every time a month or season changes, I become more aware of where we are and as spring fades into summer and the flowers start to bloom and the sun beats down on our bare arms, I sense that Stella is not present a lot of the time.  Her body is here, but she doesn’t have the energy to share her spirited personality with us much anymore.  A couple of smiles a day and then her head falls back in exhaustion.  A couple of bites of food and then her mouth slams shut and she refuses to eat anymore.  A couple of attempts to focus, but then a fogginess overcomes her beautiful blue eyes, the left one which is now permanently droopy.

 

As Stella’s cancer has progressed, more and more often I get people telling me that they don’t or can’t come onto this blog because, “it’s too sad”.  At first when people said this to me it made me so angry…I felt like saying, “It’s too sad for YOU!!!!?  This is my LIFE, and believe me it’s too sad for me too.  Unfortunately, I don’t get a choice”.  But now I’ve realized that I’m not really mad when people say that to me, I’m actually jealous.  I wish I could just not have to think about it, could just choose not to come on here, could forget about what’s happening for just a little while.  It takes a certain amount of bravery to come to this blog— to care about Stella, even knowing that she is only here for a short time.  To tell your children about her and show her pictures.  To keep showing up and calling and being our friends, even though we often can’t reciprocate very much, and flake out all the time.  To let the tears fall down your cheeks for a little girl who should have gotten to live.  Who should be running around the living room right this second, loudly torturing her little brother and demanding to go to the park after dinner.  But instead, she sits on the couch in heap of blankets and red hair with her eyes closed to the world, using every bit of energy she has to just stick her tongue out for “yes” when I ask if she is thirsty.

 

I am so grateful for the parents of other children who have died that have reached out to us, shared their stories and their children.  It gives me comfort to know that others have walked this path of burning stones that sear your soul from head to toe, and have survived.  I know that Aimee and I and our friends and family will get through this immense heartache and slowly learn to laugh again.  We have no choice.  But I also know this part of the long, winding road we about to travel is fraught with tears and will take a lifetime to truly understand.

 

For now, our focus has shifted.  We are no longer trying to decide whether to take Stella swimming or to the farm, whether to bake chocolate or vanilla cupcakes.  Our sole purpose now is to make sure Stella is pain-free, surrounded by our love and getting whatever she wants that gives her comfort.  The focus now is on making sure she gets a few bites of food when she feels like it, a few sips of liquid, and a whole lotta kisses.

 

Aimee and I have spent three days straight on the couch in a tangle of arms, legs, curls and dreams.  No one is complaining, we are just breathing in deeply the sights and smells of our daughter, taking pictures with our eyes and hearts of the freckle on her left hand, the long strawberry-blonde curls that frame her face, the nails painted bright purple, the cupids bow mouth turned up slightly at the sides, the soft rise and fall of her chest as she sleeps, her tiny hand resting lightly on my pregnant belly, her long eyelashes kissing the tops of her cheeks.

 

How long do we have left? No one knows…no one has really known all along…but there is a certain knowledge we all have that her time here on earth will now be measured in weeks, not months.  That she will not ever bounce back to the girl who a month ago was horseback riding and painting with her mouth.  Maybe it’s four weeks…maybe eight…maybe more…maybe less.

 

Aimee and I are not okay, but we have both acknowledged that we are okay with not being okay.  How could we be anything but hurting right now?  All of us are aching silently in our own ways… our families, friends, anyone who has been moved by Stella’s story.  Together, we survive on love alone for now.  Love is the only reality that wipes out all sense of time, overcoming all memory of a beginning, and all fear of an end.

 

We love you, Stella and whatever is coming, whenever it is coming, we will love you forever.

Stella and Sam play on the front lawn this afternoon:

Our Kids

Gracie and Stella sit under the tree together:

Our girl on her throne!

 

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