The Witch Within

The Witch Within

The Witch Within

Sometimes I think that people read this blog, or come visit Aimee and I at home and think that we are really nice, good people.  And for the most part, we are.  But it would be dishonest to pretend that we were in any way, shape or form, perfect or special or exceptional.  We are as normal and boring as two people can be.  We fold laundry while Ellen DeGeneres interviews stars in the backround on our TV, we read the newspaper and comment to each other on the stories, we compare the price of chicken at Loblaws versus Sobey’s in the flyers, we get tired, hot, irritated, lonely, scared and angry sometimes. We bicker about inconsequential things like who didn’t put the lid of the garbage on properly (because the raccoons  spill it all over the place), we sometimes make mistakes with the kids (FYI--- Threatening a 2-year old with a “time out” is fairly pointless when they adore time-outs), we forget to write thank-you notes,  we nag our parents, we own too many pairs of shoes, don’t always recycle properly and sometimes we don’t answer the phone because we just don’t feel like it.  We are not characters in a book or a movie.  We are real and complex and flawed human beings.

Stella has been sick again this week.  Aimee and I have walked this road before--- the one where we wait breathlessly to see if our beloved daughter will “bounce back” and be with us a little while longer.  All the while we worry that “this is it” knowing full well that one of these times---maybe this time, will be “it” and we are on the cusp of the greatest heartbreak of our lives.  I keep thinking that my heart can’t stand anymore pain and then I am forced to accept another reality about something Stella has lost.  Now she can barely make any sounds at all---not even the whispered “couch” that she could manage until a month ago or the “nooooo” that she hung on to until just this week.  She has zero muscle tone in any part of her body anymore, so her head is even more delicate than Hugo’s.  Even sticking her tongue out for “yes” doesn’t always work anymore and when she needs hydration, we hand feed her small chips of ice one at a time tediously.  Stella needs to be cradled just like a newborn, but sadly Hugo is already, at two weeks old, stronger than she is.  She looks up at us with her big blue eyes, but communication is pretty non-existent now, and a day or two can go by with no smiles at all from our girl.  A year ago I wrote a blog post about the fact that Stella wasn’t dying of a brain tumor, she was living with a brain tumor. But I would say that has changed now.  She sleeps two-thirds of the day.  She is pale and skinny.  She has so much spirit in her, but it is harder and harder to see.  She is dying now.  I’m sure of it.  She may still be on this earth for many more weeks, even months, but she is dying.  I can see it in the way her skin is losing its colour, her eyes are losing their brightness, her smile is losing its strength.

Perhaps because Stella has had a rough week, I am feeling more sensitive than usual about our situation.  Recently someone who was one of my best friends emailed me (she doesn’t read the blog so don’t worry---I’m not insulting her in public!!!) to share that she felt I wasn’t being a good enough friend to her because I haven’t been very good at staying in touch and she was unaware that I was even pregnant and just heard about the birth of Hugo through the grapevine.  This is where my imperfections as a human being really shine through---I was immediately livid.  I felt so defensive and upset about what she was insinuating so I shot off an email reminding her that while she is at home cuddling her two year old daughter and tucking her into bed, I am at home sitting for 16 hours on the couch giving my 3-year old morphine , squeezing milk into her mouth one mouthful at a time, and waiting for her to die.   I was so angry at the insinuation that I wasn’t trying hard enough.  The truth is---I have let most of my friendships slide this year.  I have been operating under the impression that the people who are my real friends will forgive me stepping back from social niceties and activities while I focus on my family and my own mental health. My family is who needs me the most…and  I need to be with them too.  But still, it is a reminder that I’m not perfect and haven’t always been present or available to some people who are important to me in the last year or so.

I am often overly sensitive when people look at Stella or make assumptions about her.  A few weeks ago we were at the zoo and decided to take Stella on the Merry-Go-Round.  We asked if she wanted to go and she stuck her tongue out for “yes”.  When the ride first started, Stella flashed a brilliant smile but then reverted back to her neutral look for the rest of the ride.  Aimee was holding her in a plastic snake seat that didn’t move.  Obviously, because Stella has absolutely no muscle tone left, Aimee was having to hold her head up with one hand and support her body with the other, so Stella was in a semi-lying down position.  Her eyes are always half-closed nowadays, and her head was leaning back.  I was standing on the sidelines with Sam, snapping pictures of our girl when I heard a man behind me say loudly, “what a waste of money, that kid is sleeping on the ride!”.  I don’t know why that irritated me so much, but I turned around and said to him and his kids, “She’s not sleeping.  She has a brain tumor”.  Then I turned my back on him and continued taking pictures while he sat in silence and then got up with his kids and left.  I felt so angry in that moment, though I really didn’t have a reason to.  In times like that, I realize that I still carry so much anger in me about losing my Stella.  But it does make me feel better that other people are protective of Stella as well.  For example, one of my favourite Daniel stories (Auntie Heather’s partner) is when we were at Great Wolf Lodge a few weeks ago.  Stella was in the Lazy River with Auntie Heather when she pooed.  She only gets bowel movements every 3-4 days, and we have to pump her full of laxatives to get them out as she is often constipated (a side effect from her meds).  Anyhow, though she was wearing a swim diaper some of it leaked out into the pool.  Heather alerted the lifeguards who cleared out the lazy river and the waterslides that empty into it.  They called “pool fouling” and closed everything for 20 minutes while they cleaned all the pools. Daniel was outside having a cigarette and heard a loudmouth complaining to his kids that some stupid person had fouled the pool and now it was closed and he was grumbling about what a waste of his time/money it was.  Daniel turned to the guy and said in a very even voice.  “That girl is my niece.  She has a fatal brain tumor and is here on her Make A Wish Trip…….. think you can forgive her?”  The guy shut up immediately, mumbled and apology and walked off. 

I don’t necessarily know why we all feel so protective…it’s unrealistic to assume people know what’s going on with Stella.  Every single time I take her out in public, anyone who comments on her always says, “Oh poor dear---shes’s so tired” because she always looks like she’s sleeping, even when she’s wide awake.  It irritates me.  Most of the time I just smile and agree that she’s tired, but once in awhile when I’m short on sleep and my heart aches too much to breathe I snap back with a quick, “She’s not tired.  She has cancer”.

The point is---Aimee and I are human beings.  Normal people who have been forced into an extraordinary situation.  Some days we are able to keep our perspective, be grateful for what we have and live our lives in a beautiful and open way.  But other days we are beaten and broken, life seems unfair and our words and actions are reflective of how shattered and scared we are. 

So…

If I’ve insulted you, I’m sorry.

If I’ve snapped at you, I’m sorry.

If I’ve disappointed you, I’m sorry.

If I’ve hurt you, I’m sorry.

But I will never be sorry for how I have chosen to live my life that last 14 months, which is honestly, fully and with eyes wide open.

Stella and Poppa enjoy some time under her tree in the front yard:

Reading under the tree on a beautiful summer's day:

Xavier and Sam, 10 months old already!

The three Bruner-Methven kids--- Sam, Hugo and Stella:

Stella!