Thrive

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There is a photo of Aimee and Stella and I that hangs on the fridge.  It was taken just before Stella turned 2 years old and the three of us are laughing into the camera.  It used to be in the centre of the fridge, one of the only things hanging there, but in the last 2 1/2 years it has become crowded out by new pictures.  Drawings from Gracie, photos of the boys, a well-used calendar, magnets.  Our fridge is a messy, crowded hodge-podge of moments all mashed together with no rhyme or reason.  It looks much like all my friends fridges.  Except for the scribbly painting made by our daughter is starting to turn a bit frayed and yellowed at the edges.  Other people have more updated art on their fridge, but ours is from 2011.  Over 2 years old already.

This morning I paused in the morning routine of getting the boys dressed and fed to run my fingers over the peripheral our photos, and straightened them out a little.  I remember so clearly the day each one was taken.  My favourite one of Stella is always in the centre, and I love it because I can hear Stella’s little cackle bursting through the glossy paper.  But it all seems so long ago and far away now.  It was before DIPG.  Before Sam.  Before Hugo.  Just photos on a fridge that don’t quite tell the heartbreaking journey we’ve been on.

I think I know now why so many DIPG families stop writing about their lives shortly after their children die.  It’s because life has a way of becoming mundane all over again.  You are forever changed by your experiences, but the world sucks you in with its normalcy and you feel as though you are too “normal” to write anything anymore.  But that’s not really true.  Once you’ve lived through something so profound and honest, nothing is the same anymore.  But most of the changes in life are small, so small that maybe nobody else would notice.  For me, the most obvious difference is that despite the fact I have gotten so much more lenient around things like forcing my children to do what I want when I want them to, I am actually operating at a much higher level of anxiety than ever before.  No matter what the situation, my mind tends to jump to “worst case scenario” now as opposed to “it’s nothing,” the way it used to before Stella’s diagnosis.  I remember quite clearly that when Stella first started exhibiting what would turn out to be her first symptom of DIPG (slight ataxia— a tiny wobble in her walk), I was quite annoyed at how “concerned” some people were about it.  Aimee and I avoided taking her to the Doctor for almost two weeks because we were fairly sure it was something completely benign that would clear itself up.  Likely the cheap sandals she insisted on wearing.  I would have bet my entire life savings that whatever was wrong with Stella, “it was nothing”.  But as you know, we were betrayed so deeply when she got some rare, random disease that took her away from us forever.

 

Now, whenever something “normal” happens, my mind always jumps to worse case scenario.  Last week Hugo was feverish- yet again- and I rushed him to Sick Kids Hospital, I was convinced he had Leukemia.  Fevers can be caused by any number of things, but he seems to get them so often.  Five minutes on Dr. Google and my mind had invented an entire future for myself that included watching another child suffer with cancer.  Even after the hospital gave him the “all clear” and assured me it was just gastroentinitis, I demanded a blood test to rule out Leukemia.  As I sat waiting for the results, I imagined having to tell Aimee what was wrong with our son.  Of course, everything came back totally fine and the Doctor assured me that Hugo is a perfectly healthy toddler just going through the regular bouts of “Daycare Sicknesses”.  When the Esthetician didn’t show up for a scheduled appointment on Friday, but I could see the lights on in her locked shop, instead of thinking that maybe she had forgotten or fallen asleep (which turned out the be what happened), I was fully convinced that someone had tried to rob her, and she was tied up somewhere in her store.  I was <this> close to calling the Police.  When I phone my dad one afternoon and he didn’t answer his phone over a period of three hours, I couldn’t concentrate on my classes at school.  I was sure he had a heart attack and was lying helplessly somewhere.  Turned out he had left his phone (on silent) in his jacket pocket. This inner turmoil that plagues me is exhausting.  It’s funny in a way, because if people asked me I would tell them that I’m doing really well.  That the stabbing pains in my heart are less acute.  That watching my boys growing up and playing together makes me smile.  That I am happy at school, and Aimee and I appreciate the small things in life more than ever giving us a sweeter and better quality of life.  But the truth is, even with all those wonderful things, I live under a huge amount of self-inflicted stress and anxiety.  It doesn’t matter if people say, “chances are it’s just…”, because I know that it doesn’t matter what chances are.  Sometimes the rare, horrific, terrible things happen.  Those “one in a million” bad things can and do happen.  I know this without a doubt, because it happened to me. Do you know that in 2011, there were 93.9 million children between the ages of 0-17 in North America?  Do you know that out of those 93.9 million children, only 300 of them were diagnosed with DIPG that year.  Thats one in 31 MILLION.  And one of them was my Stella.  So whenever someone tries to give me odds on something, they are truly meaningless to me.  It’s something I need to continue to work on.  To not expect that around every corner something horrible is waiting for me.  To try to accept all the blessings and good things that are in my life, without wondering when it will all come crashing down again.  I think the best way to do that is to continue trying to live “in the moment”.  To just be grateful for what is, not what might be even 5 minutes in the future.  Easy to say, difficult to do.  But I will keep trying.

 

Aimee and I have been seeing a psychiatrist since just after Stella was diagnosed.  Faithfully, every Tuesday we trek over to her office and sit down. Secure inside her beige walls, we let go of the public masks and say whatever is on our minds and in our hearts.  In the last two years, we have sobbed openly, raged, dug into our deepest fears, laughed, dreamed and lived all the highs and lows with our incredible Doctor.  After the latest session with her, she said to us, “You know, you’re not just surviving the death of Stella.  You’re thriving”.  It felt like a strange thing to say.  Our daughter dead only a year, and Aimee and I were thriving?  But I’ve been thinking a lot about it.  Mulling it over in my brain, flipping it from side to side and examining the words and the meaning behind them.  It’s true, I guess.  We have come out of the dark cave of despair and horror and entered the world of the living.  We ride the subway, go grocery shopping, host dinners with friends, fold copious amounts of laundry.  We aren’t hiding in our beds.  We aren’t immobilized by our grief.  And, funnily enough, if anyone asked me I could tell them honestly and without hesitation that we are happy.  Happy with our family and friends and house and work/school. There are still struggles sometimes.  I know I am struggling in my own mind with so many different things.  Struggling to accept that Stella is gone forever.  Struggling with my anxieties. Struggling with feeling selfish for going back to school and putting my family back into financial and emotional strain.  Struggling with loving to see Hugo and Sam together so much, yet knowing that they are only the way they are because Stella died.  Struggling to live each day with the purpose and meaning that I promised Stella I would.  But, despite the struggles, there is successes and love and joy surrounding us.

Just after our conversation with the psychiatrist, I happened to learn through school that the word “survive” comes from two Latin words, “vivo” meaning “to live” and “sur” meaning beyond.  So to survive is simply to live beyond something.  Curious, I then looked up the word thrive.  Turns out thrive comes from the word meaning, “to grow”.  So to thrive is to live and grow.  In this context, I guess our psychiatrist is right.  We are not just living beyond the death of Stella, we are growing and changing and learning from it.

“Let us not look back in anger, nor forward in fear, but around in awareness.” ~James Thurber

Brudders:

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IMG_5470Sam:

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IMG_5598Hugo:

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IMG_5468Stella and I at the zoo, September 2011:

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Loser

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Loser

 

When I was in High School, I was considered a “loser”.  I’m still not exactly sure what constitutes being a loser, I just know I was one.  While the jocks practiced football and the artsy kids painted their angst on large white canvases, I worked on learning Roch Voisine songs for French Club and building a chariot for the Classics Club.  Sometimes I would watch the “cool” kids from a distance and wonder what made them different…how they knew what to say and how to say it to make other people look up to them.  I often felt a bit behind, a little insecure, a little lost walking the hallways with my head down, trying to get to the “safe” space where my friends and I hung out (Mr. Curci’s Room in the Learning Centre) without someone hissing “nerd” or “loser” at me.  Even though since then I’ve gotten much more confident and comfortable with myself, there are still lots of times in my life when I feel awkward and like I don’t belong.  I’ve been surprised to discover recently that Stella’s cancer has brought back so many of those High School feelings of inadequacy and trying to find my place.

 

I don’t recognize myself anymore, that self that I’ve spent so many years learning to like and feel comfortable with.  I feel like I’ve lost almost all those “titles” the old me used to covet.  Do you remember when I had a busy life? When I worked all week and went to school two nights a week?  I was always rushing to drop Stella off at daycare and pick her up afterwards, rushing to make dinner and get her to bed so I could study.  Organizing playdates, apple picking trips, library dates, swimming and music lessons for Stella.  I was busy and I  wasn’t a loser anymore. I was a “mom”, an “employee”, a “student”, a “band member”, a “mommy friend”.

 

Now I am a non-working mom.  A non-student.  An anti-social person who has lost the ability to return phone calls, attend social events, send emails and even (horror of horrors!) went off Facebook.  I feel like a big loser, lost again in the big hallways, but without the safe haven of the Learning Centre where my friends waited for me.  Now the hallway just seems long and dark and lonely.  I know my friends are waiting for me somewhere, in some room, but I don’t feel cool enough to hang out with them right now and I’m not secure enough in “the new me” to know what to say or how to act.  If I don’t talk about how Stella’s dying, do people think I’m in denial?  If it’s all I talk about, will people be uncomfortable? If I don’t answer the phone, do people understand or do they think I’m rude?  If I lie about how I’m doing, does it make it easier for everyone else?  If I refuse to lie about how sick Stella is, refuse to believe in miracles and plan a trip to somewhere far away on Christmas Day because I know she will be dead by then, do people think I’ve given up hope or that I’m not even trying to “believe”…”have faith”… “fight”? I don’t know the “right” thing to say, I am unsure, scared, insecure.

 

This weekend I went to the zoo with Stella.  Stella’s two best friends (Arin and Flora) and their families met us there.  It felt so incredible to be outside in the sunshine with Stella and my friends and Aimee’s mom (Tutu).  Stella was in the carrier and for the first 45 minutes we were there, she had a great time looking at the animals and chattering to her friends.   I was feeling relaxed and happy.   I remember watching all the action and life oozing around us and feeling like the colours were particularly bright and beautiful that day.  Then, quite suddenly, Stella got really quiet and tired.  I could tell she wasn’t feeling well and she asked to go home.   I knew I had to leave, but I really wanted to stay with my friends.  I felt like that High School loser again, leaving the “cool” kids to go home and study French.  I contemplated trying to make Stella stay longer, but I knew it wasn’t fair to her.  Her head was heavy against my chest, her little curls plastered to her head in a sweaty mass. She was done, so we said our good-bye’s and after a quick stop to see some birds, Stella, Tutu and I headed for the gates.  On the way we passed the polar bear exhibit and I saw our friends again, though I didn’t stop to say hi.  Arin was racing around on his little car and Flora was chasing him.  Their respective 7-week old sisters slept  peacefully in their strollers and all the parents were busy dealing with active toddlers, looking for snacks and negotiating for their newborn girls needing diaper changes and feedings. I looked longingly at them as I walked by and had to fight the urge to run up to my friends and say, “Can I stay…please!?? Can I stay with you just a little bit longer?  Don’t I belong here too, with the cool people?  Didn’t I used to do this too, chase the kids and chat with you about daycare lists…do you still like me even though I’m only a shadow of the person I once was???” Then I looked down at Stella lying against my chest in her carrier, eyes half closed and felt completely drained.  I didn’t belong at the zoo chasing my active 2 1/2 year old. I didn’t’ have an active 2 1/2 year old anymore. I belonged at home on the couch with my daughter who has a brain tumour that is slowly killing her.  All of a sudden everything turned grey— the sky, the sidewalk of the zoo,the colour of the carrier, Stella’s skin. I just sagged under the weight of it all.  I am a loser again, but this time I’m losing my spirit and my confidence.

 

Have you ever gone to an antique store and seen how they often sell old photographs of people?  It always secretly breaks my hearts when I see the faces of someone staring intently at me from an old sepia photograph covered with dust in a pile.  I wonder how these photographs got lost and separated from their families.  I wonder who they once belonged to, and feel sad as I run my fingers over the tattered edges.  No one knows their name or anything about who they were. Nowadays, I feel like my life is turning into one of those sepia photographs, slowly losing colour and life.  Stella has gone from an active toddler who ran with rosy cheeks to meet me, singing and spinning with her friends, climbing slides, chasing her cousin, laughing, tantruming, teasing to a sepia copy of herself.  Stella is quiet now.  She doesn’t walk.  Her face is pale and drawn.  She prefers to sit quietly and read books or watch tv.  She gets tired at the slightest activity.  She doesn’t grab toys from the other kids anymore, or chase them giggling.  I still love my daughter more than anything on this earth, but feel as though I have already lost part of her.  Lost the part of her that was active, energetic, bright, sassy.  Lost the adventurer, the leader, the challenging child who never sat still and had so much attitude it spilled out of her curls in waves.  But for all I’ve lost, her smile remains as bright and beautiful as ever.  When she smiles at me I remember every single smile… from her very first one at 5 weeks, to the one she gave me this morning when we had a tea party on the couch with Poppa and her puppets.

 

Stella had a bad day yesterday.  A day where she looked really sick and acted really sick.  A day where we sat on the couch and watched thirteen hours and twenty two minutes of Olivia DVDs that a friend brought over a couple of months ago.  As I sat on the couch and the hours passed by, I began to feel like a used dishrag. I always thought that if we didn’t look at Stella’s cancer as a battle to be one or lost, there would be no loser.  I hate reading things in the paper that say, “lost a courageous battle to cancer’, or “fought for twelve years before succumbing” or worse, “beat cancer” as though it were a Monopoly Game.  I thought since we weren’t fighting anyone or anything, we couldn’t lose.  But I realized that today I am a much bigger loser than I ever was in High School.  Losing my daughter.  Losing my life.  Losing control.  Losing myself.

 

But I try to hang on to the moments this week that made me feel like I belonged…the Stellapalooza Birthday party.  The Christmas in September party.  Family visits where we laugh and make fun of my 9-month pregnant sisters Flintstone feet.  Tea and toast in the morning with my dad.  Sometimes I see a light at the end of the long hallway, but I can’t ever seem to get to it, so I just feel lost most of the time.  The only way I am found is when Stella smiles at me, and I’m terrified that the day she stops will be the day I truly, truly, become a loser… because I will have lost my soul, my heart, my reason for waking up.  I fear that when Stella stops smiling, so will I.  Loser.  Lose Her.

Not feeling very well today, but as beautiful as ever:

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View from the Couch

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View from the Couch

 

As I write this post, Stella is sleeping beside me on the couch where we’ve spent the better part of the day.  She is wearing her purple sunglasses, which have the practical job of protecting her eyes from sunlight outdoors (the tumour has made her eyes super-sensitive), and the not-so-practical purpose of being something she likes to fall asleep in.  She is wearing a friendship bracelet given to her by our good friends Nicole & Cassandra, as well as a wooden necklace made for her by Flora.  She is clutching her “little Arin” doll who is wearing a ridiculously large and purple tutu left over from a tea party he got dressed up for this afternoon.  Safely wrapped in the red Pottery Barn blanket she has recently dubbed, “the snuggy blanket”, Stella is the picture of toddler contentment, literally surrounded by the love and warmth of family and friends.  It’s still strange to me to look at her and know that while she lay sleeping little cancer cells are rapidly dividing and wrapping themselves tighter and tighter around her brainstem, slowly and literally strangling the life out of her.  She’s so peaceful looking, how can something so violent be going on inside her tiny body?

 

Because months ago, Aimee and I decided against the only “life extending” treatment offered to us (radiation), we are no longer officially patients of neurology, oncology or neuro-oncology at Sick Kids Hospital.  We were referred right to Palliative Care and though we have an incredible Doctor who comes to visit each week, Stella is not “actively dying” at the moment, so mostly Aimee and I just plod along day after day, trying to manage Stella’s pain and navigating through whether her unhappiness is due to headaches from the hydrocephalus, frustration from being a normal two-year old, or something more sinister caused by the tumour (anything from nerve pain to frustration with trouble speaking, to tiredness).

 

In the last little while, Stella has become incredibly, physically, attached to me.  On days like today, where she doesn’t feel very well, I am pinned to the couch with her like a beached whale for hours at a time.  Today it was a total of twelve hours (with a few breaks in between) of me sitting on the couch, sinking into the soft beige cushions watching Treehouse on TV.  Stella will not let me get up…she even gets hysterical if I try to leave her to go to the washroom, so I have learned to eat, to pee, to live with my 2 1/2 year old glued to my body.  In some ways it reminds me of the newborn phase, when she was completely dependent on me but this is so much more frustrating because my 2 1/2 year old shouldn’t be like this.

 

Stella has always been a “mover and shaker”.  When she was just a few months old and I would meet other moms in a coffee shop for our “Monday Moms” group, I would spend the entire time with her strapped to my chest in a carrier bouncing up and down because if I tried to sit down, or stop bouncing, she would cry.  My family joked that it was because when I was pregnant with her I never stopped moving.  I wrote a statistics exam the day before my due date, walked everywhere with gusto and vigour and never lost my energy.  When Stella learnt to crawl at 6 months, then walk at 13 months, there was no stopping her.  She went where she wanted, when she wanted and even the dreaded “time outs” couldn’t contain her.  She loved to dance, and was fearless at the park climbing up to the slides and whooshing down with a huge smile on her face.  Neither one of us ever sat down.  Now, ironically, mostly all we do is sit.  Now Stella can’t go anywhere unless I take her there.  She sits for hours on the couch, unable to walk, but still can’t sit still.  She fidgets and wiggles around and tries to push herself up and get comfortable.  My body aches from sitting on the couch, from carrying her everywhere, from holding her up when she can’t do it on her own.  My arms burn as though I’ve been working out at the gym, my legs fall asleep constantly, my back and neck cramp up.  But the physical pain is bearable for me.  I carry her willingly because I want her close to me.  I want to protect her from the pain, from the world outside where her friends laugh and play at the park while she lays here drugged up on morphine.  The ache in my body is bearable, the ache in my heart is slowly killing me as surely as the cancer is killing her.

 

When Doctors first told us Stella had inoperable brain cancer and was sentenced to certain death, they estimated she would live around 3 months with no treatment.  The end of this week marks the three months they guessed for us and I still can’t believe it’s been only three months…and already three months all at the same time.    Stella’s health is slowly and steadily declining, but I’m quite confident she will outlive the three-month benchmark she was given.  By how long, I have no idea and that frustrates me each and every day.  Even as I try to take my own advice and live one day at a time, I am starting to feel more and more frustrated with her cancer, in constant limbo with no end in sight.  I don’t wish my daughter dead, I just wish I had some answers so I could picture my life.  Aimee is 5 weeks from giving birth to Stella’s brother and we’ve started calling it “The Great Race”…will Stella still be alive to meet him, will she be on her deathbed, or will she still be stabilized like she is now?  How can there be money in the budget to send troops to war, but not enough money in the world to stop cancer from ravaging our children?

 

Last week Stella had a bad spell of three days where she was extremely lethargic, sick-looking and vomiting.  Aimee and I were sure that this was “the beginning of the end”.  We called our families to warn them that the time of her death was likely approaching, and steeled ourselves for the long nights we were sure lay ahead.  Then Stella woke up after three days of illness and was back to the way she had been the previous few weeks.  Now we are back to worrying, waiting and wondering when that “end” time will be.  No one knows, no one wants to guess, no one ever wavers from the “we aren’t really sure, she’s a different age, the tumour is a bit different than typical DIPG” line I’ve been getting since it all began.  My body vibrates with the frustration this uncertainly causes for me.

 

Sometimes I feel as though Aimee and I have moved to a foreign land.  We have all these incredible family members and friends who email us to say, “thinking of you” and “love you” and “can we do anything?”, but they are all living in “the real world” and we are living on the couch.  The hours and days for us are marked by appointments and doses of morphine for the pain…then lactulose for the constipation the morphine causes…then zofran for the nausea caused by the lactulose…then advil for anything and everything else.  Yesterday I deactivated my Facebook account because I realized it just depressed me.  I’m jealous of the people who write updates like, “had a great day with my kids at the beach!!!” or “little Max won’t stop asking for more cookies, LOL” or “headed out of town for a wedding this weekend, hoping to return with a husband and a hangover!”  I am happy that my friends and family are doing well, I don’t expect life to stop for everyone, but it doesn’t bring out the best in me to read about it everyday, and I realized that there was no reason to keep torturing myself by reading cheerful updates on Facebook when all I want to post is, “watched the rain fall outside the window from my couch this morning and held Stella down while she choked down her medicine then cried when a school bus drove down the street”.

 

The scope of how much our lives have changed sometimes hits me just in waves… and at the oddest times.  When I have her in the carrier at the zoo and another mother with an infant in a carrier says to me as she walks by with a smile, “wow…you’re much stronger than me, I made my son walk holding my hand when he was a year old, I could never carry him around like that when he was that size!”.  When the lady at the Doctor’s office asks me if I have children and when I say I have a two-year old gushes to me, “oh if you think two is a great age, wait until she’s four!  Oh, at four they’re just so precious and fun, you’re just going to love it!”.  When I, out of habit, shut the door to the basement so that Stella doesn’t accidentally fall down the stairs, then remember she can’t get to the stairs unless I carry her there.  When I email the lady who sold me an RESP for Stella two years ago and tell her Stella is dying and she responds that if I “choose” to cash it in, I will lose hundreds of dollars I’ve contributed, unless I register Stella’s brother instead in which case we can just switch it over.  When I notice Stella’s friends moving forward…getting potty trained, talking more, running, growing while my child has reverted back to diapers, speaking becomes harder for her, when she is sitting, shrinking.  When my fiercely independent daughter grabs my neck at night and cries.  When she begs me to lie on her lap and strokes my hair and face, the way I do to her when she’s hurting, and begs me “don’t cry Mama!  Please stop crying”.  When we go to the park and I see the little pink slide, the one she climbed by herself just over a year ago then slid down, so proud of herself for being such a big girl.

 

The ironic thing is that the pain in our hearts belongs only to those of us that are watching it happen, not for the one person who its happening to.  For all that she has lost, Stella is remarkably happy and has adapted incredibly well.  “Dance, guys!” someone cheered on Stella and her cousin recently.  Gracie immediately started twirling and dancing and Stella sat on the floor and moved her arms around wildly, both of them smiling and laughing.  “Why aren’t you angry!??” I want to yell at her, “don’t you remember that you used to dance like that too!??”.  But Stella isn’t angry like we are.  She isn’t sad like we are.  She isn’t jealous of other kids like we are.  Stella is living her life as genuinely as she always has.  She is still liberal with her hugs and kisses.  Still giggles when we play patty cake.  Still begs to see her friends.  Still wants to go to the park, and seems content just sitting on the bench watching the other kids play.

 

Stella makes me realize that at two years old, she already knows how to live bigger and better than I do.  She appreciates every single bird she catches sight of, every tickle that makes her laugh, every visit from the people she loves.  She is my hero.

View from the couch:

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Fears

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FEARS

There is an old saying, “name your fears and they can’t own you”.  Or something like that.  I’m not sure if that’s true or not, but I do know that I have a lot of fears and have been wondering if putting them down on paper will help relieve me of some of the weight they create in my heart each day.  So…in no particular order, here are some fears that sometimes cloud my vision in the day and keep me up at night:

 

Fear:  I am not strong enough to do this

A recurring theme nowadays seems to be people telling Aimee and I how “strong” we are.  The truth is, I’m not strong.  We didn’t choose to do this…to be these parents.  I am not strong. I am only standing because of the people who hold me up each day.

I’m afraid that I won’t be able to do this, that when my daughter gets really sick and needs me the most, I will be too scared to be there and watch her suffer and die.  I feel sad and weak almost all the time.  I’m not being a good friend or daughter or wife right now, the only thing I am doing is trying to enjoy my time with Stella, but even then, I feel like I barely make it through each day.  I can’t imagine getting through the bad days with Stella.  She’s still so healthy and happy and I’m barely making it, I don’t think I’m strong enough to actually watch her die.  I am scared and want to run away from life most of the time.

 

Fear:  I will lose my friends

I seem to be incapable of socializing and making small talk nowadays.  I’m afraid my friends will start to forget about me and move on while I’m stuck in purgatory unable to speak.  I’m afraid especially that the friends I made because our kids were the same age and made good playmates will find that without Stella, we’re not  as fun to hang out with or worth it.  As juvenile as it sounds, I’m afraid no one will want to be friends with us anymore.  I’m afraid everyone will move forward with their lives because they have to and want to, and I won’t be able to keep up because I have nothing to offer anymore but myself and maybe that’s not enough.

 

Fear:  We will push our family to its limits

So far our families have been absolutely incredible.  My father and sister are at my door every morning at 6:30am to help out, Stella has ice cream with my mom every morning.  My dad built a special playhouse for Stella and bedroom in the basement for our friends to stay with us when we need them.  Aimee’s sister and Julia take Stella all the time to help us, her mom and dad and step-mom have given us incredible cottage experiences and never-ending love and support.  But, I’m afraid that as the weeks and months drag on, we will ask too much of them and they will collapse under the weight of the help we require.  I’m afraid they will get burnt out and tired and sick because of it.

 

Fear:  I am afraid to get pregnant again in case it’s my fault

Aimee and I already talked about how we want to try to have another baby someday.  I want to be able to get pregnant again and feel the miracle of having another being growing inside of me, but I’m afraid because I feel like it’s my fault Stella has this horrible cancer.  It’s my body that created her, my DNA that screwed up and made these cells grow out of control, creating this tumour that’s swallowing my daughter up.  I’m scared that if I have another baby something bad might happen to it too.

 

Fear:  I am afraid of the new baby

I think in the best of circumstances, adding a newborn to your life can be chaotic and scary.  But I’m absolutely terrified of the new baby coming in October, for so many reasons.

I’m afraid that I’ll be completely overprotective of him because I’m so terrified something bad will happen.

I’m afraid that loving him too much will hurt me because I love Stella with my heart and soul and now I’m being torn to shreds.

I’m afraid I’ll ask too much of him—to help heal me and I’ll put too much pressure on our son.

I’m afraid that we won’t have the energy to give him all the love and support he needs if Stella is still alive and is sick at that point.

I’m afraid I’ll be mad.

I’m afraid it will break my heart when he cries.

I’m afraid that without sleep I will collapse again.

I love him so much already…I’m afraid because I love him and want him so badly.

 

Fear:  I will forget

I am afraid that eventually when I close my eyes, I won’t be able to remember Stella’s face anymore.  That it will become blurry in my memory.  I worry that I will forget how it feels to have the soft weight of her chubby hands on my lap when she sits next to me on the couch.  I wonder if I will still hear the sound of her laughter in my mind or if it will fade away like fabric left in the sun too long.  I worry that people will be afraid to talk to Aimee and I about her, afraid to remember, afraid to be sad or to make us sad and that her pictures will get put away and her memory left behind as the years pass and everyone moves forward.  I’m scared I will forget how she smiled at me, how she snuggled into my lap as we read books, how she liked to fall asleep with her cheek pressed against my neck so that I could feel her heartbeat against my chest and would lose track of whose heart was whose.

Fear:  I am afraid of playgrounds

Each time I walk by a playground and see groups of children playing it makes me cry.  i see them running and I see my own child limping around, always left behind by the kids running circles around her, and I feel angry.  Even though Stella doesn’t even notice and is just as happy as the other kids, I am jealous of the parents who stand around and compare notes on daycares and schools.  I used to be one of those moms and now I’m mad when I see them, angry that they don’t have to wake up each day and wonder how many “good” days left they have with their kids.  Pissed off that I used to be so naive and entitled about my child’s future as well.  I used to love taking Stella to the park and playground and now I’m afraid of them because they remind me with each shriek of delight from the slide, of all my broken dreams and plans for Stella.

 

Fear:  I will never feel whole again

With the loss of Stella, Aimee and I are losing a big part of our hearts and our souls.  I’m afraid I will never be able to move forward from the loss and will let the grief and anger and pain take over and be rendered incapable of enjoying all the blessings and love and joy that life still has to offer me.

 

Fear:  I will live in Fear forever

I’m afraid that my fears will make it hard for me to live my life to the fullest.  To take chances, to do the things I love, to be a good wife and friend and daughter.

 

Fear:  I don’t know who I am

I’m afraid I’ll forget who I am.  I’ve been “Stella’s mom” for over two years now and I don’t know how to be anyone else.  When I look at my life now I don’t recognize it, but I also don’t recognize the woman I was 7 weeks ago.  The one who worked, mothered, went to school, socialized, organized, multi-tasked, scheduled…laughed.  Where did she go, who was that? Who am I now?  Who will I be a year from now?  I am lost.  Sometimes only Aimee’s hugs when we hold each other and cry keep me anchored to my reality.  She reminds me that I’m a good person and that we will get through this.  But sometimes I’m afraid when I look in the mirror because I have no idea who the person looking back at me is.

 

 

So…I guess that’s it for now.  I’m not sure if I’ll sleep better tonight having unloaded all of this or not.  But one thing I know for sure is that I don’t fear for Stella.  Stella is doing just fine. Stella is having an amazing life, Stella is oblivious to the attention and the hoopla surrounding her.  Stella is not afraid of anything.  Not afraid of any animals at the zoo, not afraid of boats or going fast or bigger kids.  She says what she means and means what she says.  She only laughs when she thinks something is funny.  She makes no excuses for liking ice cream for breakfast and says “no” when she doesn’t want to do something.  She lives each day to the fullest.

 

I wish I could be more like my two-year old daughter.  I’m supposed to be the parent, yet I feel that she is the one who is teaching me how to live life.

 

Stella is fearless.  I hope I inherit some of her strength.  She is my hero.  She reminds me not to be scared because, “Mama, ‘tella love you”.

My baby girl…how will I ever do this?

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