Jenga

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Jenga

 

It’s been 4 weeks since the Doctor told us Stella likely had 1-4 weeks left to live.  4 weeks since Aimee and I sat and wept over Stella’s pale and skinny little body as she lay sleeping.  4 weeks since we started to call some friends and let them know “this was it”.  4 weeks since ewe began the process of “letting go”—whatever that means.

 

Now, 4 weeks later after waiting and watching and holding our breath… Stella is very much still here, very much still alive, very much hanging on– even as we are being urged to let go.

 

It’s a difficult, if not impossible, position to explain to someone who has not gone through watching someone they love die slowly.  You are torn between wishing they would be here forever, and wishing that their torture (and yours) would end.  Stella is not in any pain, and everyone is eternally thankful for that, but I still find it difficult to engage with her now.  The Stella I knew once is long gone, and although I love “this Stella” very much, I have been missing and mourning the old one for months already.  This Stella is only pieces of my old Stella.  They look similar, but my old Stella was much rounder and chubbier whereas this one is tall and thin.  Their laugh is exactly the same, but my old Stella laughed a lot more.  The hair is similar, but this Stella’s is longer and lighter.  They are both completely mischievous, with a great sense of humour and a smile that can stop my heart immediately.  This Stella gets cuddles all day and everyday, but the old Stella hated being held.  She wiggled away from hugs, dodged kisses, and sat on my lap only when she was sick, or asleep.  My old Stella pushed the other kids, stole their toys, dominated most games, chased, disobeyed, ran away.  This Stella watches other kids do this, but sits silent and still in my lap, unable to keep her head up with drool falling out of her mouth and soaking her neck.  The saddest thing is that I know all the pieces of my old Stella are still here—but they are being literally strangled to death by a relentless tumor in her brainstem that is ever so slowly cutting her off more and more from us.  Each time Stella loses another function, or has another “dip” in her cancer, I am forced to mourn a little bit more.  I know now that the grieving process for Stella will encompass years of my life.  It started June 24th, 2011 and has continued ruthlessly day after day, month after month and shows no signs of abating or ending.  We still have so much left to mourn…it’s too overwhelming to even think about some days.  I keep wondering how much longer we can all keep going like this…I passed my limit weeks ago, yet as so many parents who have been through this before have told me, you just have to keep going.

 

So we do.  Because you never know how much you can do, until doing it is the only choice you have.

 

Now we measure how “good” or “bad” a day is in terms of smiles, naps and bottles of milk consumed.  When someone asks, “How’s Stella today?” Aimee and I robotically answer, “Pretty good.  She slept three hours, smiled about 4 times and drank 5 bottles of milk” or, “It was a tired day for our girl, she smiled a couple of times, and had 2 bottles of milk”.  It’s a crazy thing to have such a vibrant life boil down to—smiles, naps and milk consumed.  Just like a newborn…except she’s not.  She’s a beautiful, smart 3 year old girl.

 

Waiting for Stella to die reminds me so much of playing that 80’s game Jenga.  You know Jenga and the old jingle… Jenga, Jenga, J-j-j-jenga. you take a block from the bottom and you put it on top, you take a block from the middle and you put it on top. That’s how you build the tower; you just don’t stop. You keep building that tower putting blocks on top. It teeters and it totters, but you don’t give up; it weebles and it wobbles, but you build it on up. You take a block from the bottom and you put it on top, you take a block from the middle and you put it on top, till someone knocks it over, and that’s when you stop…”  For me, Stella is that Jenga tower, where pieces keep getting removed and you hold your breath as the tower shakes, and can’t believe it’s still possible to be standing there, even with all those pieces missing.  Then, even though you knew it was coming, suddenly the tower comes crashing down in a pile of wooden rubble, startling and disappointing you.  I keep looking at Stella, lying here on the couch next to me, and wondering: “How many more pieces can this tumor take from you before you are reduced to a jumble of pieces like a Jenga tower?”  But Stella won’t tell me.  She just looks up at me with her big blue eyes and stares directly into my soul, daring me to ask more questions that she will refuse to answer.

 

4 weeks is over.  We were all wrong again.  Stella didn’t live 3-4 months.  She didn’t die 4 weeks after they told us she would.  Stella isn’t dying right now, Stella is still living, still building her Jenga tower of smiles and surprises.

 

Stella continues to teach me things everyday, and maybe that is why she’s still here— because she knows I still have so much to learn from her.  Today’s lesson…when we can’t change a situation, we are forced to change ourselves.  And so, Dear Stella, I am trying hard to keep up with you today and will try again tomorrow.  And for the next 4 weeks.  And the next 4 weeks after that.  And the next 4 weeks after that, for as long as you need me.  And when you don’t need me anymore, I will still be here trying my hardest to live the life you taught me I should be living— one of raw honesty, pure love, overwhelming gratitude and no fear.

We must let go of the life we had planned so as to have the life that is waiting for us – Joseph Campbell

 Stella plays piano at Gracie’s house:

Stella helps Ray celebrate her birthday:

Gracie paints Stella’s toe nails for her:

Stella and Sam baking cookies:


My heart lives here:


 

 

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Hi Stellie (By: Auntie Juju)

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 Today is June 24th…exactly one year since we took Stella into Sick Kids Hospital at 6:30am, thinking we would be out in an hour with some medicine and a pat on the back.  19 hours later we received the devastating news of a fatal brain tumor.  Stella was given 3-4 months to live, but one year later she is still bringing joy and light into our lives, albeit in a much different way.

Aimee, Stella, Sam and I have spent today as a family. Gracie, Auntie Angie and Auntie Juju played with Stella in the backyard all morning while Auntie Heather and I took the boys to a beautiful outdoor Church ceremony today where our friends Omo and Arin were also there for hugs.  Then, everyone left and just the Bruner-Methven’s sat together in a heap on our couch.  Stella napped on my lap, Sam napped on Aimee’s lap and Aimee and I held hands and watched the Euro Cup.  It was quiet, just as we hoped and we just focused on being together and feeling lucky to have so much love surrounding us at all times.

Today we have an entry written by Auntie Juju, which we think captures the essence of where we are with our journey at this point.  Enjoy your weekend everyone…and remember, everyone dies at some point, but not everyone lives, so make sure today counts.

 

Hi Stellie

Hey stella,

I want to talk to you instead of about you, over you, around you. How are you? Doctor Kevin says that you aren’t looking back and remembering what you used to be able to do, that you are beautifully present for every change, that you are just here, here, here. Thank you for pushing me to do the same when I see you, to let the world around us, sounds and voices and insecurities and fears, my physical body, my brain, all fade away and just be with you when I’m with you. I get you in doses because I don’t live with you, and because I am your jula and not your mom, and I am grateful for that too in a way because it adds to the odds that I can be here, here, here when we’re together. It’s like seeing a rainbow, it’s so easy to drink it in with all your senses and resist distractions when you know you aren’t going to see that rainbow very often, and that it changes by the second.

I want to tell you that my ocd has been a thousand times worse since your diagnosis, and since you sometimes take hilariously enormous pleasure in other people’s pain, you’d probably find that funny. I find humour in some odd places too, let me tell you. I have never checked the stove so many times.

I want to tell you that I love your smirk more than I can explain, but that a lot of the time I don’t try to make you laugh, just want to lock my eyes on yours and just be there without trying to do anything to change how either of us is feeling. I want to tell you that I can absolutely tell when you’re really looking at me, and I am so grateful everytime you are, that I get to be in your field of vision now and again, and I want to tell you that the air between us is far from dead, that I can feel the space between your nose and mine as soft and vibrant and sweet and full of love. I want to tell you that my time with you while your brother was born was one of my happiest times in the past year, because we bonded over being the only ones not in the hospital, because we were both happier to be sitting on the couch in some ways, and because we’d both rather walk than drive. I want to tell you that you are a really funny kid, and I enjoy your quirkiness and how I never feel anything but normal around you, and how rare that is for me.

I talk to you all the time when we’re looking at each other, and I know you tell me things in those moments that are so much more real than verbal lines that are so littered with consciousness and expectations and rules we were taught. Stella as I watch everyone get sad around you I struggle to accept the present as if I had invited it. I am taking a mindfulness course and the timing couldn’t be better. Thank you for talking to me with your eyes.

Stella I collected the music that will play at your ceremony, and I thought about you the whole time I did that, and tried to interpret the picture of you I have in my head into something people will want to listen to when they are all so acutely missing you. you are really hard to interpret, do you know that? i have never spent more time trying to wrap my conceptual arms around what someone’s spirit feels like. It makes my brain hurt, makes my hands move in funny ways over my keyboard. Speaking of hands I have developed a tremor in them since your diagnosis too. Ha.

stellie I love you so very much. See you Saturday.


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I Hate This (By: Aimee Bruner)

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I hate this… (By: Aimee Bruner)

 

I hate that this time last year I was running down the street with Stella on her bike, watching her drag her feet on the pavement for blocks and laughing as I was trying to explain to her that her shoes would get wrecked if she didn’t keep them on the pedals – and now, a year later, I’m sitting beside her on the couch, my eyes burning and brimming with tears, watching as my baby girl, MY Stella, lies curled up in a heap – her chest barely looking like it’s rising and falling at all, her mouth open and tongue slipping out making a sucking noise like an infant does for comfort.  Curled up like tiny kitten, her bony legs lie twisted under her new Olivia blanket as beads of sweat pool on her little nose.

I HATE that no matter what Mishi and I do, we can’t protect her from this.  We can’t fix it and we can’t change it.  We just have to get up each day and witness the unimaginable destruction this tumour has unleashed on our child’s body and her abilities. – She can’t talk.  She can’t walk.  She can’t move her head or hold it up.  She can’t swallow her own saliva – it makes her choke.  She can’t see anything unless it’s right in front of her.  She has no control over her arms and she can’t use her hands anymore.  Her legs don’t work – they’re stiff and contorted all the time.  She can’t move the appropriate muscles in her body to have a bowel movement.  Her eyes don’t shut all the way anymore, even when she’s asleep.  Her feet and toes are so sensitive that she flinches anytime something grazes past them.  She can’t even cry anymore.

I hate this.

How is a mother supposed to “let go” of her baby?  I know it’s something that Mishi and I both need to do but PLEASE someone tell me how we’re supposed to do it.  I’m not in denial, I know Stella is going to die and I know it’s likely going to happen sooner rather than later, but with all of my being, I want to hold onto my baby.  I held her tiny head when she made her way into this world and from that moment on, I swore to myself that I would do everything in my power to protect her and make her happy.  Like my parents did for me, I would make sure she knew what unconditional love felt like.  I would make sure that she always knew how proud I was to be her mother.

I hate that I can’t protect her from this.

I hate that Gracie, Stella’s cousin and best friend on earth will have to come to our house one day and struggle to understand why Stella isn’t here waiting for her on the couch.  At the age of only four, this incredible little girl has already amazed us with the depth of her understanding of what’s happening to Stella but the permanence of the whole thing is still something that she doesn’t fully grasp.   With the help of some close friends and experts, Gracie’s moms have worked so hard to be direct and honest with her about what is happening to Stella.  Their courage astounds me and it breaks my heart to watch Gracie try her hardest to interact with Stella in new ways.  It’s hard enough to be four.  Like Stella, Gracie too has adapted in ways that I wish we as adults only could.  During our weekly sleepovers, she makes games for herself and stretches her imagination as far as it will go in order to pass the time and have some fun while Stella sleeps for hours or stares blankly into space.  Gracie was the first baby I ever loved like she was my own and I wish that I could protect her from all of this.  But again, I can’t.

I hate this.

I could go on forever about how much I hate what is happening to our little girl, what is happening to our family, to who we are and to the life that we built for ourselves but I know that in the end I would just find myself trapped in a world of hurt, consumed by anger.  That isn’t something I want for myself or the family that I need to support.  Often, when I find myself weighed down by thoughts of what our beautiful daughter can’t do anymore, she reminds me of all the things she CAN do.

Stella CAN…

 

Communicate love by kissing the air.

 

Stick out her tongue to let you know that she means “yes”.

 

Create her own language (she’s just decided on her own that sticking out her tongue for a long period of time means that she wants her bottle)

 

Stella CAN…

 

Dance with her eyes, a little wiggle of her arms and a tilt of her head.

 

Sit on her beanbag chair by herself.

 

Eat mashed potatoes.

 

Stella CAN…

 

Laugh and smirk……only when you’re funny though.

 

Play hide and seek under a blanket.

 

Give Buddy, the dog, treats.

 

Stella  CAN…

 

Decorate cookies.

 

Choose her own clothes.

 

Take meds even when they taste yucky.

 

Through all of this, our little three year old can find the strength to hold onto her spirit and be her self – I will be eternally grateful to her for that.

 

So over the next few days/ weeks, Mishi and I will try to find it within us to start to let go of having Stella here with us but I assure you – we will NEVER let go of who she is and how she has infiltrated every facet of our souls, tethered tightly inside us where she will stay forever.

 

Stella CAN say “yes” to Grand-Pa by sticking out her tongue


Stella CAN help DeeDee blow out Birthday candles:


Stella CAN read books with Nanny, Mama and Gracie:


Stella CAN pretend to push Sam off her beanbag chair:


Stella CAN play with her friends in the backyard:


Stella CAN share her Tutu with Sam and Gracie:

 Stella CAN stop our hearts with her smile:

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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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