Friday, December 31, 2010

as 2010 becomes 2011...

i'm thinking back over this past year.

and, um, yeah.


it began with an ironic twist. having told asher that i refused to bring in the new year in the hospital with him, i ended up bringing in the new year in the hospital... by myself. haha and thus began a(nother) gut-wrenchingly, heartbreakingly, freaxiating, spellbinding, awe-inspiring, breathtaking year.

in january, we finally tasted freedom. asher's vagus nerve had healed and had been eating on his own, sufficient to sustain him, for a couple months. he had even been taking his meds by mouth. and one day, in the middle of the month...

asher walked into the living room and said,

"mommy, i not need my tube anymore. you take it out now."

he sat so bravely as i pulled it out and covered up the site. he smiled and showed off the bandage to blithe and bram. and then he went to bed. and in the morning,

the hole had closed. and all that remains of that (looooooooong) period of asher's life, the only reminder of that struggle,

is a scar on his stomach. and the memories. and the feelings of relief and pride at having overcome such a huge struggle.

strong work, littlest man. {{hugs}}

and then came the spring.

the fontan. the chylothorax. the bradycardia. the fainting spells. the pacemaker. the infection. the fat-free diet. the uber high-fat diet. UTI. (i was going to link to everything here, but it's too many posts, so i'm just going to tell you to read the posts from marchapril and may. click on the months here, if you're interested.)

ok, so the UTI and FTT and "butter and whipped cream diet" was at the end of may. and since then...

asher has been out of hospital.

asher started school!!!!!

asher learned to write his name.

asher has lived the life of a perfectly normal, stable, beautiful boy.

aka, tasmanian devil.

with a battery pack.

and so, as this year comes to an end and a new year begins, i hope and pray that our new-found normalcy and stability continues. but, if it doesn't, i know that we will continue to trust and rely on God to give us what we need to get through the challenges we face, whether they are health issues, financial issues, or other unforeseen issues that can arise in day-to-day living. and i hope and pray that you will also know a year of peace, joy, laughter, love, and beauty.

even if it's a wonky kind of beautiful.

happy new year, everyone!! thank-you so much for your love, support and prayers over the last year. let's all try to be safe and joyful this year, shall we?? :)

Tuesday, December 28, 2010

christmas 2010

yes, this post is late, and no, i don't have any pictures. :( i've lost my camera, which makes me very, very sad. so you're just gonna have to imagine all that i'm going to share with you. which is, without a word of a lie, miraculous.

the kids and i were gifted with the most unbelievable christmas ever. "santa" came. and stayed until "he" had delivered 3 garbage bags full of gifts. the boys got all the transformers they had asked for and batman pyjamas (complete with cape). asher got a new elmo stuffie, an elmo watch, elmo duplo, elmo play-do, and more that i can't even remember, there was so much stuff. bram got lego galore - pieces, kits, and books - and again, a ton other stuff. blithe got all things bieber - sheets, singing doll, book, CD. she got a lalaloopsy doll and an easy bake oven. and again, there's more. literally, everything they asked for. ever single thing.

for the four of us, we were given 8 movie passes, snacks for our nights out, and 2 free blockbuster rentals.

i got more for this christmas than i have received in at least the previous 3 years combined. i don't usually ask for much, a couple little things, and that's it. i really don't need anything. i got gift cards for chapters and starbucks and shoppers (my happy places, in case you're wondering, haha). i got a beautiful card and note from "santa" (which i now carry in my new purse from the kidley-winks). it was...


we were also given 6 boxes of dry goods for the panty, and grocery gift cards. so i don't have to worry about that for quite some time. i can't tell you how much that helps us.

and then there's the stuff from my parents, my brother and his girlfriend, and the beautiful picture of my grandparents (my grandfather passed away in October 2009, while asher was admitted with H1N1). everyone in my extended family (other than one of my uncles and his wife) were at my grandmother's for brunch, including my aunt's husband and my cousin's husband, who got the day off work for the first time in over four years. everyone was there, and it was beautiful and loving and warm and joyful. truly miraculous.

i was also blessed with the opportunity to gift one of my aunts with something small (but very cool... she's lucky she got it, since i loved it so much, haha), and a note which made her cry (in a good way).

this was truly the most beautiful christmas i have ever experienced, and i am holding this close to my heart.

i hope your christmas was just as beautiful as ours was. i hope you experienced all the love, grace and peace that is the spirit of this holiday.

Friday, December 10, 2010

on this day in history...

i took asher to our local emerg. he was having trouble breathing. i thought he would just need some oxygen and then he'd come home.

instead, we were sent to london.

where dr pepelassis (aka, "pepy") checked out asher's heart.

"usually babies with this condition," he said, semi-panicked, "are operated on right after birth. he's eight days old now. it's too late. he's going to die. you have to be strong now, so pull yourself together, and come back and say your good-byes."

he called SickKids anyway, and they told him that if he could get asher stable enough for transport, that they would take him and "see if they can try anything."

in toronto, i was drawn a picture of a normal heart.

and then i was drawn a picture of asher's heart.

and there is a lot of stuff missing in asher's heart.

on this day four years ago, the cardiologist in toronto went over our options:

  1. 3 open heart surgeries. one right now, one at six months, one at two years.
  2. very new (read: partially experimental) but gentle closed heart surgery now, massive open heart surgery at six months, and open heart again at 2 years.
  3. transplant. meaning weeks or months on by-pass, and the risk that asher might not live long enough to get the new heart.
  4. comfort care. (for those unfamiliar with the term, it's pain management and nothing else.)
that was four years ago.

and right now, as i type this, asher is watching Roly Poly Olie, and drinking juice with his fingers. he sticks his hand into the cup, then sucks (noisily, i might add) the juice off his fingers.

it's been a long four years, to say the least.

i'm hoping we'll have many, many more.

and today is another special anniversary. one of asher's little heart buddies, Yale, is celebrating his heart anniversary today. two years ago, Yale was given his new heart. and believe me when i say, he hasn't looked back!!

so congratulations, yale and family. :) and thank-You, God, for saving and preserving my littlest man's life over the last four years.