Tuesday, September 23, 2014

So much...

Yesterday on Facebook I saw a meme floating around that looked like this...

Those are powerful words.

 So much has been given to me; I have no time to ponder over that which has been denied.  

Reading that, many different meanings pop into my head - it's so profound and highly relatable for any parent, but especially for those who have a child with a complex illness.  So much has been given to me - This past week a young heart warrior at SickKids lost her battle with congenital heart disease, and her mother has been in my thoughts and prayers every day since.  That could easily have been Jake at several points during his journey to a repaired heart, and I know in my own heart that it is always a possibility in his future.  Not too long ago I was sitting in a room at SickKids depressed and despairing, feeling like Jake would not get to live his life, that we would never be able to take him home.  But that wish was granted to me - and Jake lives each day like it's his last - never a moment wasted.  That's the life and death interpretation of this quote.

But there is the everyday interpretation as well...so much has been given to me - material possessions aside, my life is filled with love, family and friends.  My children are growing up in a great city, surrounded by family and friends, on a safe street, with a christian upbringing and as much stability as life with a CHD child can bring.

I know there are those who would look at my life and feel sadness, pity or relief that their children have whole hearts, I meet them almost daily in my outings with Jake.  When someone says "ohhh, look at the poor little baby" or "it must be hard to have a child who is so sick" there is no adequate response that I can give without taking up an hour of their time.  I'm filing this quote away as a response to these people the next time we meet.  So much has been given to me!

I have no time to ponder over that which has been denied.  This sentence leads my thoughts to my belief and understanding that God has a plan for what is best and good for our lives.  Goodness knows I have spent many moments wondering why God would create Jacob with a broken heart, but I believe down to my core that there is a reason.  And it's a good one.  And in all likelihood, I will never know what that reason is.  I leave that sentence knowing that what I do have - in Georgia, Jake and Jon - is much more rewarding and challenging than anything I may have been denied.

That's my sermon for the week :)

Sitting down to the computer now, I realize that there is so much to update on.

On Thursday the In Honour clinic for Jake was held at Canadian Blood Services St. John's.  Jake was at the clinic for the majority of the day, walking around and charming those who came to give blood in his honour.  It was a lovely way for us to spend the day, and the tally for the day was 58 blood donations. That is completely awesome.  Thank you SO MUCH to everyone who took the time out of their day to donate for Jake.

At the beginning of the day Jon and I were taken to the storage for the current blood supply for our whole province.  This was it... I was astonished.  Newfoundland and Labrador is one big province.  This is not enough blood!

I'm so sad that this pic turned out blurry.  This is our friend Morley.  Morley is a long time blood donor, and today was his 450th time donating.  Yeah you read that right - 450! Thank you Morley for all you have given, and for your promotion of the need for blood donors.  The world needs more people like you!

And last but certainly not least we got Nanna and Poppa both in to donate - for the first time! Jake is super proud of you both.  We'll all go to donate again in 56 days :)

If you are interested in making a blood donation, check out www.blood. ca - it's so easy, and makes a huge impact on the people who need this blood.  Hey, it could be you that needs that blood next.  You never know.

In other, less exciting news, the five "use" allergy tests that I have done for various types of tape/barrier cream were all negative.  Negative! I want to say that this is a good thing, but it doesn't explain the damage done to Jake's face.  We're seeing our dermatologist tomorrow, but I'm not sure he'll have anything new to add other than that Jake obviously needs to stop using tape on his face.  

On Sunday Team Jake had the oppourtnity to walk in the Red Shoe Crew Walk for Families in support of Ronald Mcdonald House NL.  An enormous thank you needs to be said to those who donated to our team - Team Jake raised the most of any team that took part in the St. John's portion of the walk.  Our total was $2280! And we got photobombed by two strangers in the background of this picture :)  Way to go Team Jake - next year we'll aim for the $3000 mark!

Today was the day for Jake's monthly sedated echo...check out this cutie pie as we waiting in the waiting room at cardiology for his name to be called...Jakey always wears his pjs to his echos because they are so early in the morning!  We got the reassuring "no change" from our cardiologist again, thank God.  There were a few tense moments leading up to that where his left pulmonary artery couldn't be found on the screen, and we thought we might be sent down for an emergency CAT Scan, but then...there it was...it's getting harder and harder to see, in part because of the bump on Jake's upper chest from his repeated sternotomys.  (The breaking of the chest bone to allow access to the heart for those who are confused by that term) :)

Next week we're getting on a plane and going back to Toronto once again.  We are still hoping that the pacemaker won't need to be moved, and that the G Tube can fit around it in it's current location but we were reminded again today that that's an unlikely outcome.  I'd like to ask for specific prayers leading up to our October 3rd appointments - pray for guidance for the doctors/surgeons and for the mapping ultrasound to show a route for the g tube that doesn't require the pacemaker to be moved.  It's an unlikely outcome, but my God is a God of unlikely outcomes! I believe!

The downside to going back to TO is leaving Georgia.  She's still in her first month of kindergarten, and Jon and I think it would be too big of an interruption to her transition to take her out of her class here and place her in the class at Ronald Mcdonald House.  I am so thankful for my parents, they are stepping in once again to care for Georgia while we can't.  We still haven't told Georgia that we are leaving, and honestly, I'm afraid to.  I don't want to have that conversation with her.  When Jon booked our flights, Georgia heard me say say something about flying and immediately perked up, walked away from her favourite TV show, and asked me where we were going.  I didn't have the heart to tell her then, so I redirected the conversation instead.  I'd like to ask for specific prayer for Georgia too.  For her to know that she is loved, for her to have some understanding in a childlike way why we have to leave, for her to be happy and safe while we are gone, and for her to not resent her little brother for this interruption in her life.  

My Dad and sister are coming over later so that Jon and I can get a couple of hours out together, celebrating with a friend as he launches his latest book.  I'm thankful for that too.  It will be lovely to relax and just be together without any other demands on our time.

So much has been given to me...

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