Our Miracle Girl

I am not sure how many of you know the story of how Gracie came to be.  Readers Digest version is that in 2008, Gary and I, after 3 years of waiting, finally got an appointment with the fertility clinic here in Calgary, after some pretty frank discussions surrounding my age it was decided that we would try IVF to get pregnant.  After one round of the fertility drugs we were told not to bother and that our chances of having a child of our own were "slim to none".  They referred us to a counsellor and sent us on our way.  Anyone who has dealt with these guys, bedside manner is not their foray.  We went home and took our lumps, I had a great boss at the time who allowed me my "pity party day" with no questions (thanks Launa!).  But we picked ourselves up and made some new plans.  To be honest we were OK either way, we both knew that we would lead happy and fulfilled lives nonetheless, just in a different direction.  Well 6 weeks later I felt so awful I thought I was sick, but because I had no family doctor I went back to the fertility clinic and well 2 weeks later and a million pregnancy tests (the tests kept coming back positive but because of some surrounding circumstances they were convinced that the baby was lost) they confirmed a pregnancy.  This took everyone, especially Gary and I, (I do believe his head did a 360 when I told him) by complete surprise, good surprise but surprise none the less.  Here starts the story of Gracie, a two and half year old that never does anything "textbook".  

With everything that she has gone through up until now and all the odds that she continues to defy it makes me think.  She has a disease which has only been documented in 18 other children throughout the world.  Upon diagnosis the disease was in over 75% of her body, I don't think any medical person really thought she had a hope in hell.  The complications that arose leading up to transplant, the fact that we went into transplant without a complete recovery and it seems to have worked, the pneumonia and nobody knew for the fact that the anesthesia tipped her over (she was walking around and playing with only 30% lung capacity?), this is all a head shaker.  As her old Oncologist Dr. Marty used to say, Gracie does nothing textbook. 

I wonder what life has in store for her?  I no doubt thing she was put here to do something big, she has to be here for more than just our enjoyment?  I don't deserve all that.  She continues to amaze me everyday with her strength and resilience.  Don't get me wrong she is like any two year old and lasts 10 minutes at dinner, has huge objections to clothing other than her princess robe, to her its perfectly acceptable to wear it to the mall, she melts down if Bunny is not in a reachable distance and freaks out if you want her to wear brown shoes instead of black.  She sings when no one is listening, getting only every fourth or fifth word, dances when everyone is looking, loves to hear people laugh and gets upset when people are sad.

I can tell you one thing she better not give me any more grief during her teen years, I am full up.  I know that Mom is laughing and saying "payback is a bitch" but I am serious little girl, you do not want to meet Rita (my alter ego, rightly named by my White Rock pals), she is nasty. 

I don't know anything for sure anymore and I no longer can tell you with the certainty of a 20 year old that I know what tomorrow will bring, but I do know one thing for sure and that is the moment you decide to become a parent, you make the decision to spend the rest of your life with your heart walking outside your body.

Things are good with us today, this week and this month, I hope this trend continues.  Wishing you all the best memories and happiness that life brings to your doorstep.  Every moment is a memory.  Dance when everyone is looking, sing even if you don't know all the words, listen when people are laughing and listen harder when they are sad.

Happy Christmas Season...oh and just in case any of you were expecting a picture of Gracie and Santa this year, here is 2010, don't think its gonna happen....

The Sterks

New time

I am so sorry for not posting earlier, we arrived home last Saturday, but life has been busy with scheduled medications and clinic times, so I have not had any time to write anything, nor have I known what to say.  It has been a year this upcoming week that we did a celebration of a negative biopsy.  I truly thought then it was over, people came to the Black Swan to celebrate and brought gifts, it was all very merry...little did I know, a year later and we are still in the biggest fight.  Her Pneumonia knocked me off my game, I now truly understand how things can go from so normal to so bad so fast.  It is official we will never be the friends, people or family you ever knew.  I do know, even though we had some bad weeks, we don't have it so bad, life on ward gives me this and I know that life has something else in store for us.  I think it will be good, it has to be. 

I know you all follow this blog to hear things about Gracie, but if you want to hang up now, I get it, but these are the people that I think about when I say we don't have it so bad and they need to be acknowledged, if not for you for us, Charlotte, the person that was with us from the beginning, I wish I could be more like you, you are triumphant!!!  you will always be an inspiration to me and I will make sure that Gracie always knows who you are; Ty, complain as your Mom says you do, you are a fighter, Brynley, what can I say you and Gracie are competing in Tot's and Tiara's Cyclosporin style!! and you do make Superman look like a wimp.  Diamond, well you are famous, I just wish you were famous for something else, but I know you will be, I do know you will, it is in your DNA., and the person that had the biggest impact on our lives, Mr. Skalk, you will never be forgotten, I will remember, but the weird thing is so does a two year old.  She says your name all the time, I keep telling her you went home.  Thank you my friend for easing her fears and being her friend, not many 15 year olds have that kind of maturity to care that much about a two year old girl...thank you from the bottom of my soul...I miss you so very very much. So does your Mom, I try to talk to her once a week to see if she is OK, but I talk too much and am not sure I am helping much...she needs a sign...from you...

To everyone who reads this thank you from the bottom of my heart, it has been nothing but sorrow this year, ever time I turn around it is bad news, but I maintain still that life is good, the Brynley's and Charlotte's teach me this every day, every day is a good day.  You make my heart sing, you are the only children my daughter has ever known because of isolation and immune suppression.  I love you for that.   And we will always rally around you...forever.

Gracie is good, there continues to be "secondary" issues that are happening...she is having a hard time walking and has quit "running", she wants to be carried alot, this we suspect is from a weaking in her bones because of the amount of steroids she has had to be on for the last two years, we will see.  If it is OK by Mel, I will now adopt the same mantra...day by day.."

Life continues to be good, we laugh all the time, and are so excited about the awaited addition to our family, Gracie's cousin Ari...., for your Mom's sake, come soon...we can't wait to see you, you will be a welcome greatness in a sea of horrible....we love you already....the best is yet to come....

Stay safe...and thank you on this remembrance day to my Uncle Paul, My Gram pa Bert and all the people who were selfless enough to make this country as great as it is, for if it wasn't for you I probably would not be allowed to even write this blog and it would be probably be written in German,   Our Country and our justice system are not perfect but neither are you so when you believe you are then you can hold them to the same standard...choose to be happy and things are not so bad., truly it is a choice...

Love to all

The Sterks...

Dodged a bullet

Gracie is down to only 1/2 liter oxygen support as of this afternoon and her spirits have picked up quite a bit. She was making Nurse Carol dance with Winnie the Pooh and everytime Carol would stop she would yell "Dance"! It was amusing to say the least. When we look back at the last week we are ever so grateful that this scenario played out the way it did. Gracie has a Guardian Angel out there, I don't even know if I believe in Guardian Angels, but I am a few steps closer know. If that bone marrow scan was not scheduled when it was and we would not have put her under anesthetic for it, which if I didn't mention before, is what tipped her little body over the edge, she would have eventually presented at home and what that would have been I shudder to think. Also with immune suppressed people's it gets really hard to turn them around when they get too sick, so like I said dodged a bullet, big ass bullet. So I am not sure who these Angels are, most likely my Mom with some Aunt Colleen and possibly a sprinkle of Grant, but I am so thankful for them, for our medical team (no matter how frustrating navigating that can become sometimes) and for technology.

Still not sure when we get to go home, there is talk of a week from Wednesday as well as some discussion about earlier with home care support. We will see no definate answers as of yet.

Well the monitors have finally stopped beeping for the fourth time tonight so I will sleep while I can.

Love to all...

The Sterks