Avalon's Army of Angels
|July 22, 2008
Emails and confessions....
Sent: July 22, 2008
Subject: Silly Request for Avalon?
Hi folks! I'm diligently working to get some pictures up of Avalon's recent surgeries. I'm also
working on writing out the details of the past week. However, I didn't want to wait to send this
silly request - because I wanted to have enough time to be able to maybe get something
This past operation was really difficult for Avalon. She hasn't cried while leaving us to go to OR
in quite some time. This time, she was terrified. Not to mention, how many times she braved
headaches, rectal exams, middle-of-the-night neurological exams, etc. Its not too hard to
imagine that this past week was less than fun. Add losing more hair, gaining a huge scar, and
having Summer fun curtailed...and you are starting to get the picture.
I also mentioned her MRI in the post-op email. I want to expand on that a bit. MRI's require that
a patient stay perfectly still....for several minutes to several hours. Avalon's MRI was of her
lower spine - so I think it was 20-30 min or so. I'd actually have to ask our friend, Doug, who
was kind enough to wait for us while she did it. The entire thing seemed like an eternity, but I
actually have no idea about timeframe.
Usually, children are sedated to be able to tolerate the MRI. The noise in the room is
deafening. Anyone in there has to wear earplugs - and I can testify - its still excrutiatingly loud.
Not to mention - the patient is in a small tube. Seriously, just watching her go in it made my
chest tight. (I'm horribly claustrophobic) Oh - and if all of this doesn't sound joyful enough -
Avalon had to be full-body strapped down. From her shoulders to her rear - she was wrapped
tightly, with her arms by her sides - unable to move. She could see nothing but the inside of
the tube - and only hear the nurse's voice - not mine, it was too loud in the room.
Mind you, the nurse talked to her often. The nurse was kind, gentle, encouraging, and honest
about what was coming, and how long each cycle would take. She continuously asked Avalon if
she was OK, and reassured Avalon that I was, indeed, in the room with her. Avalon never
complained, she always answered, "I'm fine." What we found when we pulled her out - is the
best explanation I will ever be able to give you about how Avalon handles all of this insanity.
When we pulled Avalon from the tube, tears were streaming down her face. It was obvious
she'd been crying the entire time, her eyes were red and puffy. However, she had never, not
even for a second, hinted that she was anything but OK. She knew she had to get through it,
and like all the needle sticks, surgeries, chemo, and painful exams before this...she just
muscled through - not one complaint. The nurse was horrified. She said, "Avalon, you've been
crying! You never told me you were scared. I'm so sorry - you could have told me. Are you
Avalon simply answered, "I'm not crying. I just have something in my eye."
That, my friends, is Avalon. She's been piled sky high with bleck - and still fights to maintain
her "image" and diginity. And yes, the nurse and I both had tears in our eyes. The nurse went
on to give her one of every bribe toy they had: a sticker, a bracelet, a tatoo, "Oobie" eyes, and
a small stuffed dog. Quite the haul by hospital standards...but not even close to what she
deserved. Hence, the request I'm about to make.
While I know I've yet to describe the rest of the week, I want to jump ahead a bit to ask a favor
of all of you. I LOATHE the idea of having to put her through all of this again next week. And
while she'll never admit it, I know she's scared and sad too. Therefore, I'm asking all of you if
you would help me do something silly to make next week fun for her. (OK, maybe not "fun" - but
how about more bearable?)
My online cancer-mom friends suggested asking people to send Avalon cards. I'll gather them
and bring them to the hospital with us next week - for her to open and enjoy as a distraction
after the operation. They also suggested bringing a map - to see how many different places
she can receive cards from. If kids want to send pictures, she'd love those too!! Basically, I'm
asking if we can make a Card Storm for her. Kind of a positive weather front - instead of the
constant hurricanes she's been dealing with. If everyone who gets these emails passed on to
them, would send a simple note, and ask a few of their friends to send a note....we might just fill
those huge holes in her head with positive thoughts! What do you think?
I'm sorry to be so stinking selfish for her. I'm just seriously out of ideas to make next week
easier. This past week, I took her sheets, her favorite stuffies, her pajamas, and bought her
new Webkinz...and she still just sat there, sullen. She wouldn't even let me take the sheets out
of the suitcase. (she used to demand them) Her biggest grins were when Grammo, Pappo,
Nettie, and Papa Joe came and doted on her. But those visits are exhausting - and just can't
happen that long or that often. It leads to so much pain medicine afterward. Besides, they do
have jobs - darn consumer-based economy.
So, in my twisted attempt to make her 3rd brain surgery in 2 months enjoyable...would you
consider sending a card? Or hornswaggling someone else to? She loves those stupid state
quarters. She can't wait to put new ones in our map. I think she would get a huge kick out of
looking for what state/city a card came from - and marking it on a map. (But please - no
quarters! That was only for illustration purposes!! ;-) )
Anyway, if you'd like to "play along" and add a few raindrops to our Card Storm - here's the
7363 Fairfield Lakes Dr.
Powell, OH 43065
I'll collect the cards/pictures and save them for the hospital next week. I'll also take a state and
US map with us - to be able to mark where cards came from. I would love nothing better than to
tell you we ran out of wall space to hang them!
Thanks for not threatening to cart me off to the funny farm. (not that it wouldn't be justifiable) I
hope you don't find this to be too outrageous of a request. So many of you have asked what
you can do, I'm thrilled my smarter-than-me online friends had such a fun idea. And I promise -
I really am working hard to get the pictures and story available for everyone.
Thanks!!!!!! We LOVE you!!!
Alicia - and the rather chopped-up Avalon
|The following is an email I sent to family and friends on July 22.
If you received this email, forgive the repetition. Please just
scroll down for the "Confessions" part.
|Now its time for the CONFESSIONS...
My daughter may not live long enough to have children.
My daughter may not live long enough to graduate high school.
My daughter really is fighting death every day.....and its the worst realization any parent can
Sound dramatic? I thought so too, until I realized its true. And frankly, that totally sucks. Of
course I had those I-could-lose-my-daughter moments during her treatment for cancer. Duhh.
You'd have to be a pickled monkey to not get that. As you watch the children of your cancer
friends relapse or pass on - its really not a great leap to picture yourself in their shoes. After
all, you're already wearing one of the same shoes, and your toe is in the other one. One slight
bauble, your foot slips in...and you're in exactly the same place. Its a daunting prospect that
every cancer family deals with.
But here's the thing, with her cancer, there was an endpoint. There was a definitive light at the
end of the tunnel, off treatment. To a cancer parent, OT day seems like OZ, a beautiful,
magical place in which all your cares melt away. That is, it seems like it - until you actually get
there, and realize that your fears merely intensify - now that your "chemo-blankie" has been
taken away. Over time, though, you can rein in the cancer demons. I honestly think they dwell
within us for the rest of our days, but it's possible to lock them behind a pretty sturdy door in
your sub conscience. Once you've appropriately jailed them, they normally only surface during
pivotal events like: diagnosis anniversaries, life achievements, and/or the occasional
lasts-too-long virus. I think I'm doing a fair job of co-existing with my cancer demons. Its the rest
of the pantheon of evil that I'm currently having issue with.
You see, over the past few years we've had to come to terms with the fact that there is no light
for Avalon. She will never see the end of the tunnel, until her journey through it is over. Its
more painful than I think I can figure out how to explain. I've watched this tiny little person allow
the big people around her do awful, terrible things to her - in the name of keeping her with us.
Do I regret them? No. I still have her. Do I cringe at the thought of what she's seen, felt,
experienced, and tolerated? YES! Most adults can list the one operation they had in their
lifetime, the one or two trips to the ER they suffered through. Avalon is a whopping five years
old and even I can't count the ER trips anymore. Not to mention the 8 major operations and
dozens (yes you read that right, dozens) of OR trips for a lumbar puncture under general
anesthesia. Its all insane!
Of course there are loads of children out there worse off than Avalon. Mitochondrial disorders,
degenerative muscle diseases, just to name a few. The list is shockingly long. But I'm not the
mother of those children, I'm Avalon's mom. And in the same respect that I know their parents
grieved their fate, so do I have to grieve Avalon's. My tiny little girl, my baby - is fighting
something I have no control over, and it makes my heart ache so much I've wondered recently if
there's enough room in my chest for it to remain there.
I wrote during one of the recent hospital entries, about what a bad personal space I'm in. This is
what I was talking about. Last night, after Avalon and I came home, I had a phone call from one
of my dearest friends, Elizabeth. After asking lots of questions about Avalon, she had the
vision and heart to ask me how I was. She knows me well enough to suspect I was exactly
where I'm trying to describe to you. I can't tell you what it meant to be able to say to someone,
"I'm not OK." My sister let me say that Saturday night, but at this stage of the game...it bears
I'm not OK. I will be. But right now, no - I'm not. I can't fix what's wrong with Avalon. I can't
remove the piece the other surgeon left in her head. I can't stop her panic attacks or language
issues. I can't give her back the sight she's lost. I can't take the extra fluid out of her brain
that's damaging it bit by bit, day by terrible day. I can't stop the tidal wave of awful that's
washing over her....and that means I'm not helping the baby I promised the universe to protect
against all evils. I can't stop any of it, and I'm not handling that lack of control very well.
Why share all of this? Because I have a firm, core belief in abject honesty. I need to let you in
for a few minutes. I need to ask your forgiveness if I'm rude, absent, disconnected, or
unfriendly. I need you to understand that nothing, and I mean NOTHING matters in this world
except your family and friends. Does that make any sense? If I can give you anything by trying
to explain this - may it be an abiding love for those beautiful people that fill your life. Know that
nothing in this world is for sure, except the fact that love is all we should ever seek.
Its awful to have to admit to Avalon's problems. There are days/weeks that I look at her and
think, what on earth was I so worked up about? She's playing and laughing just fine. Then,
there will be some new whammy. We had no idea she was fecal impacted. We discovered it
completely by accident! There a host of rotten things that could have happened as a result of
it...and yet we were blissfully unaware. Every time I think I have a handle on this, I learn just
how out of my realm of understanding things really are.
And these two operations, these have been an entirely new level of Dante's Inferno to have to
learn to live with. There is so much fluid in Avalon's brain, we are permanently removing large
hunks of her skull, to try to help her brain. This is what you hear of when someone's been in a
car accident and its remove the section of skull in a last-ditch effort to save their life from tragic
swelling. Yet, here we are, in the position of needing to do it to maintain quality of life! That's
And in case you're wondering, yes, I've asked myself 10,000 times if I did something that she's
paying for. Was I selfish teenager and karma is paying me back by having to learn to give my
all? Did I somehow harm another I never knew about? Do I have something wrong with how I
live my life that Avalon has to bear the burden of fixing? I know that's all insane - but don't think
I haven't gone there. I'd bet my bottom dollar that nearly every medical parent has had those
exact same thoughts - I'm the only one cracked enough to admit to it.
Am I wallowing at the moment? Damn right I am! And for once in my life, I'm not even remotely
apologetic for it. My emotional tanks are tapped out. I've gone through the reserves, and the
reserves of the reserves. I've got a whole lot of nothing left. If I can accomplish anything in the
next few days, it has got to be a renaissance of spirit, of sorts. I need find that part of me that
loves the laughter of my children, and use it to beat back the part of my psyche that's in turmoil.
Yes, its true. Avalon has no guarantee in this life, but realistically, none of the children do. I
never expected motherhood to be easy or painless, its just I also never quite expected it to be
like this. What I need to do is go back to the path of enjoying every breath, every giggle, every
magic moment. I have the painful truth of understanding that I may get less of those moments
with Avalon than with her siblings. But the cold hard truth is, I'm still getting them. I have no
right to stay in this place, as long as I have that beautiful smile to look forward to.
So, again I say, please forgive me if I have been, or continue to be distant or moody. I'm
fighting a colossal beast of death who is intertwined with a demon of lost potential. Eventually, I
know the virtue of the present, and the gift of love and light will win - but for now, I'm deep in
battle. Again, maybe there is a lesson to be learned from this. Maybe facing my demons will
help prepare me for the day Avalon has matured enough to question her own. Maybe, if I learn
to get a hold on these monsters, I'll be better equipped to help her struggle with hers.
In my core belief of "Everything Happens for a Reason", I have to believe that good will come of
all of this. Maybe my rambling has helped someone see how blessed their life is, when they
were convinced they had it so bad. Or maybe, its not universal at all. Maybe...this is just meant
to be the platform I use to find my way back to myself. I have a lot of work to do, and very little
time to do it.
I have a little one who needs me, and three others who need us both. I think its time to rally the
Blessed be to each of you walking this path of fire with us. May we, together, bring meaning to
the struggles of a very special child.