New Years Eve

We have never been people to go out on New Years Eve preferring to stay at home and enjoy a quiet evening playing games or watching movies with the family.  This year will be no exception and I'm looking very forward to it.

As we have been approaching 2017 I have spent a lot of time reflecting on the past year. Although 2016 wasn't a perfect year, it was a good year and I am grateful for all of our blessings and the positive growth and change I have seen in all of my family members.  I am proud of each one.

It is important to me to continue to grow and change but I have given up making resolutions because I have read that they don't often last.  One source I found states that only 46% of people continue their resolution past six months! Interestingly 39% in their twenties will achieve their resolution while only 14% of people over 50 will achieve theirs.  Being closer to 50 than 20 is another strike against me :-).  

What I do do is set goals.  After thinking long and hard about what I wanted to change I began to peruse Pinterest for a format to use to write it all down. The Personal Growth Plan from momschoosejoy.com was exactly what I was looking for.  It provides a blue print that will take me through the whole goal setting process from choosing a goal, making a plan and implementing it.

I will share more of my completed growth plan in the weeks and months to come but for now will share two of my action steps towards goals that I have set.  The first is a Facebook fast. I am going to delete my Facebook account for a period of no less than 30 days and hopefully after that time, I can either use it responsibly and casually or not at all.  The second is a no-spend challenge for the entire month of January and then a no-spend week once a month from February - December 2017.  It won't be easy but I absolutely believe it will be worth it.

I am going to encourage the kids to take a bit of time to set a goal for themselves for 2017 as well. We will use the SMART method making them specific, measurable, attainable, realistic and time bound.

My devotional book for the upcoming year is titled The Book of Hope. I chose it because the concept of hope and choosing hope over fear have become vital to me. Psychologytoday.com states that "hope literally opens us up.  It removes the blinders of fear and despair and allows us to see the big picture.  We become creative, unleashing our dreams for the future.  This is because deep within the core of hope is the belief that things can change.  No matter how awful or uncertain they are at the moment, things can turn out for the better.  Possibilities exist. Belief in this better future sustains us. It keeps us from collapsing in despair...It inspires us to build a better future."  I love the saying "with faith comes hope" and am choosing to go into 2017 with both faith and hope.  It is going to be a great year!

What are some of your goals for the New Year?  

"A dream is just a dream.  A goal is a dream with a plan and a deadline." Harvey Mackay

It's Christmas Time in the City!

Our kids were up at 8:30 on Christmas morning and were full of excitement!

They started by opening their stockings and gifts that Santa left for them and then opened their gifts from under the tree.  It took a long time but the kids have never opened their gifts fast, often preferring to take turns so that they can savour them and see what the others got.  

As usual, they were spoiled and loved everything!  Thank you to all of the grandparents, aunts and uncles for everything!

Baba made Jacubus' scarf out of Alpaca wool

Baba sent this little scarf for Amber

Hope trying to be expressive with her eyes to show how much she loved her gift

Jacubus made this flower for me in welding

Meleah was most generous with the coupons that she made for me for Christmas!  

 
I have wanted one of these for awhile!

Technology can be amazing!  My brother wasn't feeling well so we didn't get together to exchange gifts and instead took and texted pictures to each other.  My sister in-law put it up on Apple TV so everyone there could enjoy watching and we got to enjoy watching them open as well.  It was like a live feed!

After gifts were opened and the mess tidied, we had turkey dinner complete with mom's homemade perogies.  YUM!  I am not a photographer by any means and completely forgot to take pictures!

We read the Christmas story and then finished the night off with board games - Pandemic and Lord of the Fries while the kids played with their new toys.  It was another great day - of course the best parts of the day were remembering the reason for the season and knowing that our family was happy, healthy and together.

"Maybe Christmas, he thought, doesn't come from a store.  Maybe Christmas, ...perhaps...means a little bit more!"  Dr. Seuss

Holiday Fun

Tomorrow is New Years Eve already and the holiday season is wrapping up!  While it didn't look exactly as planned because of the rampant cold/flu season this year, we made the best of it (masks and all) and still had a great time.

Highlights included Gilmore Girls Night with Ashley, Games Night with Terry and Deanna, the "Griesbach Girls Tea",   Christmas Eve and Day, Austin's tranplantanniversary, Boxing day shopping with my sister-in-law x2, more shopping and dinner out with another friend, and having time to read and relax.

Ashley and I watched all seven seasons of the Gilmore Girls together so it would be an understatement to say that we were excited for the new episodes that came out on Netflix.  Ash invited me over and we were ready for a marathon with a soft blanket, drinks, Subway and popcorn. We excitedly pushed play and were enthusiastic  to reconnect with our old friends, Loreli and Rory ...until 10 minutes later we started talking and talking and talking - we literally didn't stop for the rest of the evening. We must have had a lot of catching up to do and will really get to savour the season this way ;-). 

Terry and Deanna are some of our favourites and just so happen to be our cousins too.  We had them over for snacks and a games night on the 17th.  Deanna is vegan and brought vegan bean dip and butter tarts to share!  I am learning to keep an open-mind - vegan food can be quite delicious!

It was a small group of us so we tried a cooperative board game that none of us had played before. called Pandemic.  We had to work together to try to cure and eradicate virulent diseases that broke out spontaneously all over the world.  It was a bit tricky to learn but we started to get the hang of it.  Next time, I'm convinced that we will win!  

Another highlight of the season was the "Griesbach Girls tea"  which my mom hosted this month.   Three months ago, my mom, Auntie Darlene, Ashley and I began our monthly tradition of meeting in each others homes for tea.  Michael appropriately named it the "Griesbach Girls tea" because three of the four of us live in the Griesbach community.  

The steaming hot mugs of tea kept us cozy and warm and there were a variety of delicious treats to satisfy both the sweet and savoury tooth.  We laughed so hard we cried and the conversation just kept right on going, no matter how random the topics got.  I had a great time.  

The kids were excited to be finished school for the holiday season but the next day a cold stormed it's way through our house.  We always try to be careful not to share our germs, especially with Austin being immunocompromised so we stepped up our hand washing and wore masks in common areas. Thankfully that  didn't seem to dull the excitement for Christmas any!

Some new friends brought us a sweet gift over the holidays.  I thought it was adorable and couldn't resist taking a picture to share.

Christmas Eve was here before we knew it and the snacks were prepped for our traditional Christmas Eve movie night.  We didn't have any of the company that we expected because they unfortunately were sick as well.  Ashley stopped by for a little bit during the day but left at about 4 pm to spend the evening with her in-laws.  

Christmas baking for Christmas Eve festivities

The sacks were flung by the fireplace with care in hopes that St. Nicholas soon would be there

It wasn't very late before we were all snug in our beds waiting for Santa to make his stop at our house on his journey around the world.

"It is Christmas in the heart that puts Christmas in the air."  W.T. Ellis

Celebrating Four Years (the condensed version)

November 12, 2012 was a day that forever changed our lives.  Austin, who had previously been healthy was diagnosed with congestive heart failure (idiopathic dilated cardiomyopathy) after suffering worsening flu like symptoms for about a week.

After being rushed to the PICU in the Stollery we were told that there was a possibility that Austin would get better with some med support, but within a couple of days it became evident that his heart was just too enlarged and weak to continue beating on its own. He was having runs of v-tach and was at risk of having a heart attack.  On November 17, 2012 he had his first open heart surgery to have a Heartware Left Ventricular Assist Device implanted. It would be implanted as a bridge to heart transplantation.   This was all foreign territory to us and we were so anxious.  

Although the days proceeding were difficult and Austin was not "out of the woods", five days later he was out of the Pediatric Intensive Care Unit and up on the ward.  From a medical standpoint he was doing exceptionally well and in mid December we were making plans for discharge.  It was an exciting time!  Christmas was coming and we were filled with hope and optimism for our Austin's future which was a welcome relief after the horrific roller coaster ride we had been on.  Unfortunately there was another unforseen loop just ahead that would require us to hang on with everything we had in us. 

At about 6:00 am on December 13, 2012, Austin had a major ischemic stroke.  Doctors were not sure exactly what to do but after collaborating, decided to attempt a procedure that had never before been performed on a pediatric patient.  It was not without risk and the radiologist who would perform the procedure didn't sugarcoat it.  He flat out old us that "he (Austin) could die." We kissed Austin's flawless cheeks and watched as he was wheeled away to the OR on a stretcher.  Knowing that this was potentially the last time that we would see our precious boy alive was excruciating.  We waited and prayed and waited and prayed and waited and prayed until we were met by the first of a parade of enthusiastic doctors who came one by one to tell us that our "stars had aligned" and the procedure was a success!  

The immediate relief was immense but we were informed that there were still  many uncertainties. We didn't know how much brain damage Austin would have and there was concern that he could have a brain bleed or another stroke if there was another clot in the LVAD.  We passed a transplant doctor in the hall who told us that Austin had been taken off the transplant list because he could have a catastrophic brain bleed if he was put on bypass for transplant should there be an offer.   A couple of days later, Ian and I were called into the "quiet room" to meet with Austin's LVAD doctor and a doctor from the transplant team.  There was no perfect solution and no promises made but they had decided to go ahead and re-list Austin at the highest status.  

On the evening of December 28, 2012 Austin's nurse told us that one of the doctors from the transplant team wanted to meet with us.  I had a strong feeling that there was an offer for a heart although didn't want to be too enthusiastic in the event that  I was wrong.  Before the doctor had a chance to meet with us, one of the pediatric heart surgeons came in and started making  arrangements for surgery the next day.  He said that there was a good offer for a heart for Austin!   

We were ecstatic but we were also sad and afraid.  We were so thankful to be moving forward -  that there was hope for Austin to get better and live a "normal" life again.  We were scared knowing that things can go wrong during transplants - I remember watching Austin cuddle his over sized teddy bear while wrapped in his plush blue blanket as he slept that night. I  captured a few pictures of that night on my phone but many in my mind.   I remember seeing the Basiliximab hung on Austin's iv pole and as it began to course through his veins, feeling like there was no turning back.  Basiliximab is used for preventing organ rejection in transplant patients.   I remember thinking of the family who was cherishing their last night with their son or daughter before life support was withdrawn and his/her organs harvested to save the lives of several, the very next day.  When we felt guilt, doctors reminded us that someone wasn't giving their life to save Austin's.  A friend sent me a cute little cartoon where one little animal (it might have been a lamb) was smiling and handing a heart to another cute little animal.  They were both smiling.  In that moment I could visualize Austin's donor choosing Austin to give his/her heart to before they left their human body here on earth. That brought and still brings me comfort.  

Austin on his way to the OR for his heart tranplant

Coming back to the PICU after transplant

Austin was discharged a short 11 days after this picture was taken

Today we are celebrating Austin's fourth heart transplantanniversary which always includes a prayer for our donor family and a balloon release for Austin's donor.  We used to celebrate with cake too but decided that we have enough treats over the holiday season and want to honour his heart transplant in a more heart healthy way :-). 

Austin is brave and resilient and honestly and truly loves his life even though he is now "chronically ill."  It's not an easy journey - we continually have to choose hope over fear because a transplant is not a cure but realistically none of us has any guarantees and we need to take one day at a time and cherish each and every moment that we are given.   

As we watch Austin "hanging out" enjoying his Christmas holidays like any other 12 year old, we are filled with gratitude that knows no bounds.  We are forever grateful to God, forever grateful to our organ donor and his/her beautiful and selfless family, forever grateful to all of the medical professionals who work tirelessly to save lives like Austins, forever grateful to all of the family and friends who continue to love, support and pray for our family, forever grateful to the people who conduct research to improve the length and quality of life of organ transplant recipients....

"Without the organ donor, there is no story, no hope, no transplant.  But when there is an organ donor, life springs from death, sorrow turns to hope and a terrible loss becomes a gift." - UNOS

Youth Christmas Party

Jacubus and Meleah attend youth group at our church on Tuesday evenings and tonight is the Christmas party!  Unfortunately Jacubus has an appointment and won't be able to make it but Meleah is all ready to go with her white elephant gift and cupcakes to share.

"We cannot always build a futre for our youth, but we can always build our youth for the future." Franklin D. Roosevelt

(Dr.) Perusini, Pancakes, P.J.'s and Perusing

On Saturday evening Austin's bilateral space maintainer fell out so first thing Monday morning I phoned his dentist (Dr. Perusini) to schedule an appointment to have it re cemented before the holidays.  They were able to squeeze us in late the same day which was wonderful but made for a hurried late afternoon and evening as we had invited Ashley and David over for a Pancakes and P.J.'s party.

Ashley gave me a hand with the prep and we were still able to eat at a decent hour.  We had homemade pancakes with different toppings to choose from:  raspberry, blueberry, maple and light syrups, peanut butter, jam, Nutella, strawberries, raspberries, bananas, icing sugar, sprinkles, chocolate chips and whipped cream.  The kids came up with some very creative and delicious combinations.  We also had sausages, hashbrowns and punch.  I rarely make a big breakfast at breakfast time because it's not only time consuming but can be so heavy that early in the day but I do occasionally love having it for dinner.

Although we had plans to colour and/or watch Gilmore Girls afterwards, we decided to go to Michael's craft store to peruse and pick up a gift that Ashley wanted to get for Uncle Adam and Auntie Anna. They have 70% off most of their Christmas decor right now by the way!  After stopping at Home Sense and Dollar Tree the day was done and we were exhausted boy was it fun!

 

Austin really wanted his Minecraft Villager pancake that he made shared on Social Media.  To the left is what a Minecraft Villager actually looks like :-)

"Happiness is pancakes for dinner!"

Family Care Council Christmas Party

Ian and I volunteer with the Cardiac Family Advisory Care Team at the Stollery Children's Hospital and were invited to attend their Christmas party with our family on Sunday.  It's such a busy time of year that I am late in posting.

The party was held at Ed's Rec room in West Edmonton Mall where we played a couple of games of ten pin bowling and had some delicious pizza.  The kids were each sent home with a backpack full of goodies from the Starlight Foundation as well!  The party was not only a fun outing for the entire family but it was really nice to meet and get to mingle with Stollery staff and other members of the Family Care Council in a relaxed and fun environment.

"We don't remember days...we remember moments."

Sharing Nostalgic Books

During our school day Meleah and Austin have time for self-selected reading, guided reading, and then I read aloud to them.  It has stirred up a strong sense of nostalgia to share books with them that I enjoyed when I was growing up. They have almost always enjoyed them as much, if not more than I did often begging me to keep reading long past when our reading period has ended.

Our most recent read was Madeleine L'Engle's  A Wrinkle in Time.  SparkNotes summarizes the book as follows.  "A Wrinkle in Time is the story of Meg Murray, a high-school-aged girl who is transported on an adventure through time and space with her younger brother Charles Wallace and her friend Calvin O'Keefe to rescue her father, a gifted scientist, from the evil forces that hold him prisoner on another planet."  It was a book that I read in about grade six and to tell you the truth, the story was not at all familiar to me when I read it this time - I just remember that I absolutely loved it growing up.

Since September we have also read Doublefudge, the fourth and final book in the Fudge series by Judy Blume and are currently enjoying C.S. Lewis' The Lion, The Witch and the Wardrobe which is just filled with adventure and excitement.

Favourites that we have enjoyed in previous years are the Little House on the Prairie series, The Upstairs Room, Charlotte's Web, Charlie & the Chocolate Factory and The Magicians Nephew. 

We have just barely scratched the surface of all that I want to read to the kids before they are grown and I just hope that one day, they will look back on these titles with the same sense of nostalgia that I have.

A little situation that happened last year makes me think that they just might... our family library always seems to be growing so once we have read a book, I often pass it on.   After we finished reading Charlotte's Web, instead of passing it on, I decided to take it apart to do some book art with it. When  Austin discovered what I was doing, he was absolutely mortified and devastated stating that he had planned to save that book for his children. I never would have cut it up had I known and I now owe him another copy.

"There are perhaps no days of our childhood we lived so fully as those we spent with a favourite book." - Marcel Proust

Volunteering with the Canadian Transplant Association?

We are considering a new little adventure - volunteering for the Canadian Transplant Association. Yesterday evening another heart transplant mom and I met with the Edmonton area co-coordinator  to discuss volunteer opportunities.  He seemed enthusiastic to have us come on board.  I am attending a meeting in January and at that time will decide if it's a good fit for our family. We certainly are passionate about the cause.

The Canadian Transplant Association " Advocates for organ and tissue donation to give more Canadians access to life-saving and life changing transplants, provides a support network to those waiting for a transplant and for transplant recipients, and hosts Canadian transplant games every two years, to showcase the success of organ transplantation."

"No one can do everything but everyone can do something."

Cookie Decorating and Card Making

Our oldest daughter, Ashley got married to David, our wonderful son-in-law in August, 2016 and they have made a commitment to come "home" after church on Sundays for the day - for now anyway.  I realize that life gets busy and as they begin a family of their own in the upcoming years and/or begin their careers, they may have other priorities and commitments. For now, we are savouring it. :-)

Most Sundays are pretty "chill" as the kids would say but yesterday we had a very full day.  After lunch we decorated Christmas sugar cookies.  Even Ian had fun with it!  It was really neat to see the effort that everybody put into creating their masterpieces.

Once the sugar cookie mess was cleaned up, we made handmade Christmas cards.  Not all of the participants were as enthusiastic but most were good sports and hung in until the end.  We used a "one sheet wonder" template that makes 7 cards per piece of 12x12 paper so it was a lot.

Dinner followed: Honey jerk ribs, mashed potatoes with gravy, corn, raspberry lemonade to drink, and chocolate chip squares with vanilla ice cream for dessert.  The family scattered after dinner - Ian and David to watch the hockey game, Austin and Jacubus to play Super Mechs, Meleah went to her room to play with her Polly Pockets and Hope, Ash, and I watched an episode of Gilmore Girls.  It was such a great day and left my heart really full.

"Family is like music, some high notes, some low notes, but always a beautiful song."