Monday, May 12, 2014

May 12, 2013...

May 12, 2013....

My first Mother's Day as a Mom of two kids.  My heart was aching for my girl who was home in Newfoundland, and my heart was aching for my baby boy who had just been placed on a 7 day Nothing Passes Orally command by the doctors at SickKids.  Jake would spend the next 7 days  hungry and upset and there was nothing we could do about it, as a precautionary measure because his doctors thought he might have a stomach condition called NEC.    Here I am...posing and treasuring a moment of holding my six week old baby in my arms.

May 11, 2014... God is good.  Posing with my beauties after the Mother's Day church service.  My heart was so full of thankfulness and appreciation for the moment.

As I live my life day to day, I find myself measuring moments and special occasions through comparisons.  Not comparison with other people's lives and material things, but comparison with where my family was on that same day/occasion one year earlier.  I'm not sure if this is a normal reflex for a person who has gone through a traumatic ordeal and is now on the other side.  But this is me - it's my norm.  Last year on today's date, May 12, it was Mothers Day at SickKids.  SickKids is a hard place to be any day of the year, but on Mother's Day it was dismal.  My wonderful husband did his very best to make it a good day for me, sending me out to get a much needed hair cut the day before, buying me a watch I had admired on our last visit to the Eaton Center, and walking to the Pickle Barrel in the pouring rain to get the supper I desired for us to eat in the room with our half hearted miracle son.

Psalm 46:10 is the well known and loved verse, "be still and know that I am God"...I was still with this knowledge on May 12 2013, and I am currently still with this knowledge on May 12 2014.  The difference is that on this May 12, I know that He is God much more profoundly than I did on the last May 12 of my life.  I have gone from being a laid back Christian who knows all about God and loves Him, but didn't really need Him all that much as my life was fine and dandy the way it being a broken hearted new Mom who is watching her son being literally opened up and rewired on the inside, and believing in God but not trusting him 100% because no good God could subject an innocent baby to being so thankful to God for delivering my son through so many life threatening moments and allowing us to bring him home for the first time at 2 months today, when I am so dependent on God that I cannot face a single day or challenge without Him - and will be the first to admit it.  Without my faith and my relationship with God, I couldn't face tomorrow.  I simply couldn't bear the unknown and scary statistics about my son's health alone.  The worship team blessed us with a rousing version of Because He Lives on Sunday morning, and the second verse says this:

How sweet to hold a newborn baby,
And feel the pride and joy he gives;
But greater still the calm assurance:
This child can face uncertain days because He Lives! 

This is another one of those songs that I love, but that I cannot sing without breaking down.  The people who sit around me in church, or who are on the platform and can see me must be getting used to seeing my chin quiver on Sunday mornings :)  I've been replaying this one over and over in my mind today, as we approach Jake's monthly echo this Friday.  My child can face uncertain days because my God lives.  Jacob Rene James Anstey can face uncertain days because He lives.  

Baby Owen is scheduled for his inutero surgery tomorrow, please pray for his Mom Grace and for Owen.  My heart is with them, and they will be in my prayers all day tonight and tomorrow.  

Those of you who know me as a germophobe because of Jake will be happy to hear that I have loosened up a little.  Just  a little.  It's been hard, but with Jake now being mobile I've had to accept that I can no longer control his environment completely.  However, if a stranger touches him or coughs/sneezes around him - I can't guarantee that I won't freak out or melt down, lol.  

In feeding and drinking news, Jake has been trying out some new food with limited success, and has....drumroll please....began drinking small amounts.  I have been offering Jake liquids daily for months with no success.  Literally NO success.  And then one day I decided to warm coffee creamer and put it in his cup...and he drank 14 consecutive sips of it.  Amounting to about 1 tablespoon.  And I laughed, then I cried...then I danced, then I called my Mom.  :)  I'm happy to report that we have been having small successes most days since then - up to 2 tablespoons daily of coffee creamer and water.  Rome wasn't built in a day, and in the same tune - Jake won't learn to drink his daily intake of formula in one day.  One building block at a time, but I'm just glad to be started the building process at long last.  

Next week, good Lord willing, we will be taking our first out of country vacation in about 3 years.  Jake is not able to come with us, because we couldn't find an insurance company willing to insure a baby on his dosage of Enoxaparin.  I'm honestly  not sure how I will handle leaving him, as he is an extension of me and has been my whole world for the last 13 months.  But I have to confess that I am looking forward to a little relaxation, a little laziness, and one on one focusing on my fast growing up little girl.   Georgia is going to get to visit Disney for the first time, and I cannot wait to see her face during that experience.  Maybe next time we will have Jake with us, or we'll choose to go somewhere within Canada to take him with us, but this trip to Disney was a promise made to Georgia that was supposed to take place last year before we knew of Jake's diagnosis.  We had made a plan to travel as a family of four to Disney when Jake was about six months old, and then Jake was diagnosed with a heart defect and the bottom fell out of our world.  The bottom is back on our world now, somewhat firmly, and we are going to make good on our promise to Georgia but miss our boy each day that we are away.  I don't know how else to make the best of our family's situation.  And my fear is that if we delay this trip with Georgia in the hope that next year Jake could come too, then next year will be another surgery year for Jake or another setback for Jake, and it will never happen.  We can't wait for a perfect scenario, so we're making the best of the one we've got right now and going for it. 

I'll leave you with this smile...and a virtual hug and thank you for reading about my family's journey, and for every kind thought, prayer and word that has been sent out on our behalf.

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