Monday, August 26, 2013

Jacob Rene James

Jacob and his Healing Helper, who also has half a heart and a pacemaker!

Baby Jacob was dedicated last Sunday in a beautiful ceremony that was led by his Poppa, my Dad, who is a Major in the Salvation Army.  When we had Jacob's first dedication, at 3 days old in a isolated room at SickKids hospital I dreamt of the day we could do the same at home.  And I feared that that day would never arrive.  But it did! Sunday was a beautiful day, and so many of our family and friends turned out to support him - thank you all! The dedication itself was emotional, and sweet...It started with the song "Count Your Blessings", and I watched my father fight back tears as he talked about Jacob and his life so far and the life he has to look forward to.  I promised God that I would take care of Jacob, do my best to protect him from all that is harmful and to teach him about God's love as he grows and matures.  Jon and I had prepared a short slide show to give the congregation a glimpse into Jacob's life so far - it's 3 minutes and 20 seconds, but it shows the highlights (and lows) that Jake has come through so far.  Due to the delicate nature of some of the images that follow the surgeries, which had never been shared outside our immediate family, we decided not to post that video on here.  I'm sure you all understand.  The song for the video was "I have a Maker, He formed my heart" - this song and the lyrics have been echoing through my mind since Jacob's diagnosis, often at the times I am most fearful and anxious, so it was a fitting song to time the images of Jacob's life to.

We leave for Toronto in 12 days.  12 days.  You may remember me talking about finding myself clenching my teeth so hard that it hurt during our time in Toronto...this morning I found myself doing the same thing unknowingly while cooking a brunch for Jon and myself during Jacob's naptime.  So many people have said to me "you are so strong" or "I don't know how you do it"...well, I'm here to tell those people that I am not that strong.  And that I don't know how I do it either.  I just know that I do it for Jake and I do it for Georgia.  And many times I start my day crying.  I rarely end the day crying though, because I am usually too exhausted from the demands of the day.  I said to my Mom this morning, I don't know if I am enough. Her response was that I was more than enough, and that all Jake needed me to be was his Momma.  Thanks for the perspective, Mom.

  This summer at home has flown by, and now we are making final preparations and lists for a trip back to SickKids.  It's unbelievable - I feel like we just got home.  I'm still hoping that we will get into Ronald McDonald House to have that close and affordable place to live while Jake is at SickKids.  In the days leading up to Jake being admitted for the open heart surgery we are able to stay in Scarborough again with Heather and Aliyah  if the House is not an option - I'm so thankful for that.  Once Jake is admitted it will be either Ronald Mcdonald House or one of the downtown hotels for us though - we have to be only minutes from the hospital.

I want to ask again for renewed prayer for Jacob's heart and his upcoming surgery.  Particularly for the condition of his left pulmonary artery, and for a miracle that there will be no additional surgical intervention needed.  At the last developmental assessment by Jacob's OT, we were told that Jacob is at the 5 month mark for his fine motor skills and leg development - yay, go Jake! For his neck/shoulder strength however, he was at about a 3 month level.  With this upcoming surgery Jake will fall further behind because tummy time will be restricted and we are unable to lift him under his arms for a minimum of 6 weeks.  I am praying constantly that this lag in development will be minimal and easily recovered after this surgery gives Jake more energy to play and grow.

In the time since I last posted on this blog sweet baby Ava has lost her fight with congenital heart disease.  I cried so much that morning I read of her passing, and I know that when we return to 4D I'll be thinking of her every time I pass the room that belonged to Ava while Jake was last there.  Fly in peace sweet baby Ava.  I read a statistic yesterday that said that more children die each year from congenital heart disease than from all types of childhood cancer combined.  That is incredibly scary given that 1 in 100 babies are born with a heart defect.  So many heart warriors, and each has a story that deserves to be told.  I had the privilege of being able to meet a soon to be heart Mom this past week.  Her name is Danielle, and her baby girl's name is Sara.  Sara will soon be born with Hypoplastic Right Heart Syndrome, which is also one of Jacob's conditions.  Please add Danielle and Sara to your prayer lists, because Sara will soon be  making an appearance and they are far away from their home in Labrador.

Jake is still napping, so I'm going to seize this opportunity to fold some laundry and count my blessings.  Another cup of coffee wouldn't hurt either :)

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