Jumbled

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Jumbled 

Yesterday Tristan came bounding into my house to do some homework and play with Hugo.  Throughout all that we have endured, I am so humbled by my teenage brother and the man he is becoming.  He adored Stella, the way we all did, yet it was a different adoration because he was a teenage boy and it wasn’t “cool” to spend time with your little niece.  But he did it anyway.  He took her to school with him, had a photo of her in his locker, skipped movie dates with friends to watch her hunt Easter eggs instead.  He was always terrified that something would happen to her, and I would roll my eyes in exasperation when his pestering about a fever or whine would get to be annoying and snap, “Tristan—she’s fine.  Nothing is going to happen to her, quit worrying.”  After we got the news that Stella was going to die, he was one of the hardest people to tell.  I remember we had him come to the hospital with my mother, our friend/grief expert An and our other friend/Asperger’s expert Cheryl.  When Tristan saw me standing in the hall of the hospital he ran to me, his face contorted with worry and said, “Mish…just tell me she’s going to be okay”.  I put my arm around him and began walking him to “the room” they had given us to meet in.  He pulled away and kept repeating, “Mish, what’s wrong?  Tell me…she’s going to be okay, right?”.  I had barely sat down in the room and turned to him when he began dry heaving into a garbage can.  “Mish…what’s going on?” he wailed, “Stella’s going to be okay, right?  Tell me she’s going to be okay”.  I remember crying and putting my hand on his knee.  I remember saying, “I can’t tell you that, T.  She isn’t okay.  Stella has a brain tumor and she’s going to die”.  The reaction was an immediate outpouring of anger.  Swearing, ripping a cross he had been wearing off his neck.  Yelling.  He cursed God.  He cursed the world.  He begged me to take back my words.  I sat there and cried, shaking my head.  I didn’t know how to stop the pain from flowing out of our hearts.  It lay there on the floor, a river of tears and dread and horror.  We were bleeding from our souls out.  He was broken, the same way we all were.  The first month after Stella’s diagnosis, Tristan couldn’t stand to be near her.  It was too hard, too sad, too hurtful.  I understood even though I was worried that he would regret his decision to stay away. Eventually he came around and they resumed their beautiful uncle/niece relationship.  As she declined, he stayed right by her side.  He read her books, he sang her songs.  Near the end, when she was too tired to even keep her eyes open, only Tristan and Gracie could get a smile out of her.  Besides Aimee and I, Tristan was the last person to lay with Stella’s body after she died.  He cuddled with her for a long time, whispering to her and stroking her hair.  He held a candle with the rest of us as she was carried out of the house for the final time, and put his arms around Aimee and I as the car with her inside drove away. My little brother trying to offer comfort to us in his time of sorrow.  The little boy whose diaper I once changed now stands a full head taller than me, his shoulders twice as wide as mine, his voice deep and low.   He’s a 17-year old boy.  He doesn’t shower enough, has messy hair, sometimes forgets to brush his teeth, wears ill-fitting clothing, and had to watch his precious niece rot away in front of him.  And yet, he has found enough bravery and love in himself to care for his nephews with the same intense love and fun as he did Stella.  It amazes me that he’s not more bitter about the experience, not afraid to get hurt again.  I am so proud of him.

Anyhow, he came into my house yesterday and told me that he had found on an old telephone of his a recording he made of Stella talking with him.  He was thrilled and wanted to play it for me.  The first recording was taken in September 2011, three months after her diagnosis.  Her adorable little voice says, “Are you going to come to my birthday party?” (friends of ours had a big party for her in September of that year, even though her real birthday is in April).  Then she says, “I’m sitting on the couch with Mama”, and finally, “Bye-bye”.  The next recording was in October, just a month later but this time her speech is drawn out and garbled.  She says something I can’t understand then a slow, “Are…..you…co…ming…o…v…e….r?”, then “I….l-o-o-o-ove…y…y….y….o…u….Unk-ie”.  Hearing her voice again was like a thousand daggers shooting through my veins.  I could have closed my eyes and she would have been standing right next to me talking.  That night, I couldn’t sleep.  I was haunted by the sound of that voice.  I ached with how much I miss her.

I’ve noticed recently that I want to tell anyone and everyone I meet about Stella, about her death.  When the stern man at my school frowned and grumbled a few times while auditing my courses and insinuated that I had messed up some of the confusing paperwork, I wanted to say, “Be nice to me, sir.  I’ve been distracted.  My daughter died”.  When the lady behind me at the supermarket clicked her tongue and sighed loudly at the elderly woman in front of us who was painstakingly counting out .37 in pennies, I wanted to turn to her and say, “Be more patient.  My daughter died.  Standing in line an extra minute isn’t worth getting upset about”.  When the people at McDonalds early Saturday morning see me struggling to sit down with my two boys and raise their eyebrows and whisper about how close in age they are I want to tell them, “Don’t judge me.  I need these boys.  My baby was taken from me and they keep me alive”.  I want to go to the local school and tell them, “I got your letter about registration.  I should be signing my daughter up for kindergarten today, but I can’t because she died”.   I want to tell the nice lady I met at the library this afternoon. The one who looked at Sam running around then pointed out her own daughter and smiled at me saying, “Wait until he’s 2, it goes so fast and they’re so much fun at 2!”.  I want to say, “I know.  I had a two year old daughter who ran around this library and said funny things too, but she died of cancer four months ago”.  I want to sew a big red “S” on my jacket so that when I go out and people ask me about it I can say, “S stands for my daughter Stella.  She liked cupcakes and timbits, green and purple, dancing and laughing.  She died.  She had a brain tumor and it slowly strangled her brainstem, taking away her faculties one at a time until it choked the last breath from her while I held her in my arms”.

What I really want is to share with everyone the experience that we’ve been through.  Not just the fact that Stella died, but the whole ordeal.  I think it’s because I want everyone to share my pain. I want the world to stand there and scream and cry with me, be as sad as I am.  I want them to know that even though I look normal, even though I am out there in society, I am badly scarred.  Just beneath the surface I am raw and hurting.  I want them to shoulder some of my hurt so it’s easier to bear.  But that’s impossible.  Even Aimee grieves differently from me.  We lay in bed together at night and read, side by side but separated by our own thoughts about the little girl that burst into our world almost four years ago, turned everything upside down in a flash of energy and curls, then faded away to the sky.  We grieve together and alone all at the same time.

This morning I couldn’t send Sam to daycare because he had a fever.  He sat on my lap on the couch for hours, feverish and whiny.  We watched Treehouse TV and he sucked on his bottle of milk and/or sippy cup of water. A familiar feeling crept over me.  Sitting on the couch for hours at a time, cradling a little body on my lap.  I held him and smoothed his sweaty hair with one hand, my arms circling him tightly, feeling his breath steadily blowing against my cheek.  I was sad that he was sick, but it was also nice to just sit and cuddle him for awhile.  I remembered back when Stella was his age and used to get sick sometimes.  I was always incredibly stressed about having to call into work and say I wasn’t coming in because of my kid.  My bosses were all really nice people (I worked for three women), but none of them had any kids of their own and I always felt them rolling their eyes at me when I had to miss work because of Stella. I know I was impatient with her when she was whiny, and frustrated about having to sit on the couch all day— boy was I ever clueless back then about “sitting on the couch!”.  Today it felt good to just sit there and care for Sam without worrying about what they thought of me at work, or when he was going to get better.  (Hugo for those of you wondering, was sent to daycare in Sam’s place so I could focus on Sam getting better and not have my attention split between two crying and needy children all day).

All these thoughts tumbled through my head as I sat today.  Thinking about Tristan and Stella and Sam and Hugo.  Thinking about the past and the present.   Thinking about her voice and her smile.  That’s what it’s like for me right now.  Everything is a jumble of thoughts and feeling, all seething just underneath the surface.  They can’t be contained in hours or days or minutes, they just float in and out as I go about my day.

Curls and ice cream and green nail polish and sick babies and the couch and my heart, broken but still beating strongly next to Sam’s.  And then night falls and I realize I made it through one more day without my daughter by my side.  One minute, one hour, one day at a time.

But damn, it hurts.

Uncle Tristan and napping Hugo:

Now that’s alot of boys!  Auntie Heather with Xavier, Hugo and Sam:

Hugo goes to Sunday School:


Hugo and Sam share morning snuggles and bottles:


Stella, March 2011 (in this photo she is stomping on her bagel with her Dora shoes…):


 

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Happy but Sad (By: Uncle Tristan)

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 Happy but Sad (By: Uncle Tristan)

 

 

Joy….a word to describe many things, especially feelings and the quote on the bottom right hand of the screen tells you about how the world describes Stella. To me the name seems like it was made to be her middle name. Stella is an amazing kid and so full of life and it saddens me that she may be gone soon. i will never forget when i first found out…. it was on the last day of school and when i got home i went upstairs to watch a movie and i saw Mish, Aimee and Stella’s house and I decided to pay them a vist to tell them about my last day of school. i walked right over and decited to watch my movie later cause i wanted to see Stella and give her a big hug and kiss and to tell her i will be home every day now. They weren’t home and i thought that they might be out so i decided to pay Noel and Heather a vist. Heather wasn’t home but Noel was and so he and i started talking and i asked where Mish, Aimee and Stella were. I was told that they took her to Sick Kids. instantly my heart dropped “oh my God, is she ok?” i asked. Noel responded by telling me, “they took her to Sick Kids ’cause she was walking funny but dont worry i bet its nothing she will be ok” but i was worried beyond belief. i went to bed that night very terrified, “will she be ok? will she get out of the hospital tomorrow and be fine?” these questions kept going in my mind until i fell asleep. The next morning i awoke to hear the phone ringing, i thought “is this good news? i hope so” i heard my mom gasp and i through “oh god that doesn’t sound good”.  I immedietly jumped out of bed and ran in to the bedroom worried, shaking and above all scared. She hung up the phone and right away i asked, “is Stella ok plese tell me she’s ok…” then she said the worlds that i throught i might never hear, the words that no one no parent, sister, brother, friend aunt or uncle wants to hear: “Trist, Stella has a brain tumor”.  Right after hearing that right away my heart completely dropped. I was beyond terrified, the most terrified I have ever been in my whole life. I immediately asked “can they remove it? Please tell me they can remove it.” My mom said “they don’t know but they are going to run some more tests. I started crying, I couldn’t believe it.

There was one thing that I was using to cope – about 3 years ago I attended a day camp at NFB (National Film Board of Ontario) and we were doing a thing where we walk around the room and we talk to people who we just met. But I noticed a little boy sitting down. I believe his name was Kai he looked about 11 or 12 years old he was just sitting there so I asked one of the counselors “is he ok?” one of them told me “When he was about 3 and a half he had a tumor removed from his brain and he can’t walk very well and every time he did walk someone would have to help”.  So, I kinda thought to myself I think this is gonna turn out ok and it got me thought the day but that night I slept not knowing what I would hear the next day. I woke up and I hoped for good news. My mom and I went to Sick Kids my heart was pounding like crazy and when I got to the floor where Stella was I saw some of our family and friends crying so much. I looked and I through “What’s going on? Why are you guys all crying?” Right after I saw Stella happy as ever, I ran over to her and picked her up in my arms and she gave me a big hug. I couldn’t take it any more I took Stella in to the play room and left her with one of the doctors and my Mom asked for a room that we could talk in. I couldn’t control my self I started to break down. They found us a room and thats when Mish told me the words that will burn in my soul forever. Mish looked at me and said in a very sad voice “Trist….she’s gonna die” I couldn’t take it I immediately started to cry more than I have cried in my whole life. I can’t recall the month of July very well. Maybe I used a lot of my energy to think about it. All I remember is that I saw a movie everyday to help take my mind of of the whole situation and would stop in to see Stella for a couple of minutes but besides that I can’t recall what I did. But I do remember the month of August cause i was at camp for three weeks. but it made me worry even more cause i wasn’t there to see her and i was scared that i would get a call saying that she passed away. Thank god i never got that call.

I saw her on visitors day and she looked great. But she had lost something…her ability to walk. So, i carried her all over and went swimming with her and she had alot of fun. And when it was time for her to leave he gave me a big hug and waved good bye. As i saw Noel, my mom, Aimee, Heather, Mish and Stella drive away, i through ‘only one more week and i can see her’.

The day i got home from camp my mom told me that we were all going to Sesame Place in Pennsylvania. So the next day Mish, Aimee, Heather and Stella boarded a plane to Pennsylvania. Meanwhile, Mom, Noel and myself where getting in a car and were on our way to meet them there. The 5 days we where there i felt normal… i know it sounds weird, but while we where at Sesame Place i felt the way i did right before she got sick. Calm , great , and glad to be here. But the funny thing is i cant recall those months either.

Fast forward to now: Wednesday November 16th 2011. Stella is doing ok but she doesn’t talk as much as she use dto. It takes alot of energy for her to say something but when she does talk she is still the Stella i know and love: She’s still in there. Stella and Mish where just behind me a couple of seconds ago as i am typing this, and Mish walked over to me and Stella said something that i haven’t heard her say in a long time. She said, “hi Uncle Tristan”. She smiled at me while she said it and opened her arms for me to give her a hug. I hugged her and i just felt sad but happy. and now Stella, Sam and Xavier are everything to me and when Stella passes she will have a huge legacy in this family as the happy kid who was very happy to be around people. And if i know Stella as well as i think i do, she’s a little warrior who will fight this thing as long as she can.  Stella i love you and i am glad to be your uncle 🙂

 

By: A very proud Uncle……… Uncle Tristan.

 

Photo by Silke Fisher:

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