Tuesday, August 8, 2017

You can thank Karen's Mom!

Tap tap tap....Is this thing on?

I feel a little bit foreign even being on this site.  It took me a couple of minutes just to get logged in, forgetting so much of how I used to do this!

Why am I here?

Good question!  I cannot believe the passage of time since the last time I wrote.  But in the last year, more frequently than I ever imagined, people have asked me about the blog and why I wasn't updating anymore.  I've felt the nudging to get back to it, but just didn't have what it took to get back on here.

But then Karen's mom happened.😄

A sweet message passed along to me, through my sister, gave me that encouragement to do it!

I know there are so many people who have invested much care and concern, love and prayers to our family.  We could not have navigated these years without each one of you.

Where have I been?

Although we have not had major surgeries or illnesses, the last number of years has felt more intense than before.  I'll share more as it feels right, I'm sure.  But to try to summarize, here are some of developments in our family:

  • Nate has been diagnosed with a lung disease.  He has areas of bronchiectasis in one lung.  This was discovered after years of different kinds of testing, and finally confirmed through lung CT and bronchoscopy.  This means new daily 'at home' therapy with 7% saline nebulizer treatment and breathing/lung physiotherapy. 
  • Nate's heart function has been good!! 💗 His left sided ventricle (right ventricle) is still somewhat enlarged.  He has had some very brief arrhythmias, but we've never been able to capture them.  His mechanical heart valve is doing its job and the Warfarin (blood thinner) has been keeping him safe, even though those levels can fluctuate quite a bit and require frequent testing.
  • Brady is now 11 and entering Grade 7, Nate is 9 and entering Grade 4.  With Nate's growing awareness of some of the things that make him special and unique, comes some tough realizations that he has begun vocalizing.  This has been difficult.  To see him so unhappy and upset and saying he wished God didn't give him his special heart is hard.  It isn't fair to him, that he has to do these hard things and Brady doesn't have to.  Brady continues to be protective and keeps Nate safe wherever he is.  Brady also will duke it out and have very typical brotherly interactions with him!!  Nate gives it back just as well!!
  • As for me, dealing with the emotions and day to day life of our Braveheart is consuming and mentally demanding.  I stepped back from my position at work, and now work only a couple of hours a week on my own time.  This has been a good move for me.  Mornings were too unpredictable with health issues and therapy time, and this change has given me the flexibility I needed.  We try to keep our life pretty simple and not filled with too many extra activities.  

So, here I go again!  This is just our story.  With mess ups and fails along the way.  Hopefully some fun laughs and victories, too!

Here's a snap from our summer holiday!  Enjoying the incredible Niagara Falls!


Monday, April 21, 2014

An Anniversary...of sorts

Well, too much time has passed (again), but today felt like a good day to update!  Someone very dear mentioned to me that every time she checked the blog and saw the "Adios" post come up again and again, she wondered if maybe that was the end of my blogging. :)

So, to be honest - (and this blog is all about that!) - this is where we've been at lately.

This time around, it was my heart that was being checked.  Throughout December, January and into February I was feeling unwell.  I was having frequent chest pain, irregular heart beats, strange headaches, sudden onsets of extreme fatigue and just a general feeling of unwell.

After going through the medical tests of blood work, EKG, and a 24hr Holter monitoring (just like Nate ;) ), the doctor summed it up as 'stress'.  For me, that was actually a relief to hear!  I wasn't feeling any more stressed than I have in the past, but for some reason, it just got to the point of the stress manifesting itself through physical symptoms.  I haven't changed anything in my life since then either, but I have been feeling 97% better for the last two months, and I thank God for the healing He has brought me.

Anyway, that explains my absence here (I hope!).  And leads me to reflect on the past year - especially today - when we think about where we were exactly one year ago today.  Don and I were in sitting outside the doors of the CICU at the Stollery in Edmonton, while Nate was in the middle of surgery.  What a flood of emotions that return.  This year of recovery has felt long and hard, but to see where we've come from and where we are now fills me with thankfulness!  And to spend the Easter weekend with family, celebrating the gift of life, forgiveness and love of our Lord, completes this fullness.

So here is a quick look back at the last few months!

It was a very LONG and very COLD winter.....

But there was also beauty in it!

Winter holiday = A night away and a lot of pool time!

Awana car races...

...with Grandpa

School project to create The Burj (also Sports dress up day!)
My cuties
Lego hockey - why not!

On the last shinny morning, the parents joined the kids. Watching the moms and dads 'try' to stretch along with the kids before the game was priceless!

Easter Sunday

And today....boys will be boys!  (And the snow is gone!!)

And here are a couple of throw back pics from exactly one year ago to show where our family was at. A quick pre-surgery family photo, and Brady being loved and taken care of by Grandma and Grandpa during that time.

Tuesday, December 31, 2013

2013, I'm ready to say adios!

I don't really know where to begin.... It's a bit ridiculous that it's been 6 months since I last let you in on a family update.

There are many reasons, but when it comes down to it, it's simply been easier to not talk about it.  To sum it up, 2013 has been the most difficult year for us.  And while it feels "appropriate" to talk about our struggles during acute times (ie. a surgery or illness), when those struggles continue on and on, in the absence of any notable circumstance....well, it just feels like it's getting a little old.  So, to keep on blogging about hard life didn't hold any appeal to me.  And I'm a person who would often rather grin and bear it and put on a happy face, than to broadcast downer after downer.

The reality of this year became very clear to me just a couple of weeks ago.  I was looking through all of my photos from 2013, in hopes of putting together a Christmas card.  As I looked at these photos, month by month, I couldn't help but bawl.  Especially when it came to pictures of Nate, and seeing his eyes in each of those pictures.  Our Braveheart has endured so much.

Since that update way back in summer, the road to recovery (again), was very long and very hard.  It took many weeks to get him back to eating properly, and even longer to get his blood levels and warfarin meds balanced.  His very strong will, which has giving him lots of good fighting power, has also given his mom a lot of heartache, as he struggles to assert and create a sense of control in situations.  And while we were still working on all of this recovery, it was time for him to start kindergarten.

By the grace of God, the skills of his most amazing KG teacher, and unending prayers, after a few weeks, he had transitioned into the wonderful world of kindergarten at JR Walkof School.  Those first weeks brought such despair to my heart, seeing him struggle, emotionally and mentally, fighting (literally) against what was supposed to be a positive and exciting time.

And then the unexpected issues of dealing with Brady's silly and distracting behavior at school came as a bit of a shock.  Brady has always been the 'easy' one.  Things have always come easily to him.  He has coped and compensated with the crazy life that we have.  He's being flying under the radar, not giving us anything to worry about.  I always was so thankful that God was so gracious to give us a child that just seemed so 'easy'.   Loving to go to school everyday.  The most kind and comforting little/big guy when he sees anyone struggling.  Protective like crazy over his brother - watching out for him in all the situations.  While still fulfilling his brother role as a good pest!!  So suddenly having to deal with school situations kinda heaped onto an already full load.

So, I haven't really felt like blogging.  Even though I did feel the nudge that it was something I was called to do.  One Sunday, our pastor was talking about being "Sent".  What I extracted from the sermon and applied to my life was this (to summarize very humbly in my own words; what his words said very eloquently, clearly and passionately):  What good is my life....my story, my journey, my God moments, my struggles, if I keep them hidden away in 'draft form', saved and sitting in my outbox.  How does God get the glory through what He's doing, showing us and blessing us, if we just keep it all hidden away.  I've been SENT.  I can't keep my 'letter' saved but not sent.  I am God's letter of love, his message, to be shared with anyone and everyone, to show how my story connects with HIS story.  And because you're a child of the King, you are his story, you have a mission.  He chose you!!  He chose you to be in this place at this time.  You are a missionary.  You are sent.
I Corinthians 3:2-3
 You yourselves are our letter, written on our hearts, known and read by everyone.  You show that you are a letter from Christ, the result of our ministry, written not with ink but with the Spirit of the living God, not on tablets of stone but on tablets of human hearts.
(It is an awesome message - you can listen or watch it here, it's called I Am Sent)

Not only did it hit me in a powerful and literal way....but figuratively too.  God has chosen me for this story, and the one way I am able to share my story - our family's story - is through this blog.  It's one way that God's story can be sent out!

So now, as this year draws to an end, it's time to reflect on how God has been beside us every step of the way, showing His love to us in so many ways.  And to be thankful for new grace.  And a new year.

Some of the awesome/blessing/thankfulness moments of 2013:
  • While Nate's GT Racing snow accident was definitely not a praise item, so thankful this happened before his surgery and being put on blood thinners.
  • Our Home.  The most awesome blessing that I'm reminded of daily.  Having the school in our backyard   (literally) is amazing.  And the heating vent that is situated at the base of the sink cabinet which warms my toes so nicely while washing dishes!
  • My family and friends - for their absolute love and commitment.  For praying for us.  For letting me be real.
  • Nate's brand new 'heart part'.  So thankful his valve is working so well, and helping his heart not have to work quite as hard.
  • Lego.
  • Employers who understand our need to take time off work so often.
  • The Wish Foundation, who told Nate he would be getting a wish granted.
  • Love gifts received from those who care so much for our family.
  • Heart moms and dads and families who walk the same road as us and support us through it.
  • The best week of the year - camping in July - where healing really began.
  • The Love of Learning - by my Brady, who was called 'a talking encylopedia' by his teacher last year.  He knows more than me on a lot of topics.
  • Teachers:  who love and care for our kids, who teach and train them when they are at school
  • Sheepskin... to snuggle under on a cold day- what can I say, it just keeps me warm.  (You'll understand if you are living through Manitoba's deep freeze of -35C right now.  To my warmer America friends, that's -31F!!  oh ya!!)
James 1:17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

BRING ON 2014!!!

And since pictures make everything better, here's a little year in review and some of the fun and happy moments!

January - to Edmonton for his cardiac MRI

One of their favorite things!

Starting some renos
You can't find a better seat??? Seriously?

Lost 4 teeth....Canadian hockey player??  Swollen, but amazingly no other injuries.

Bi-ventricular pacing wires, PA band removal, tricuspid valve replacement and VSD closure. April 2013


Make-a-Wish event at the hospital...ironic!
Saying Hi to Spiderman.

The day after returning home from the hospital was his birthday!

Nate is always ready for a jeep ride.

Our Slugger!
Too soon post-op to play, but came to cheer!

The best week of our year!

Our little fish!

Closest thing to a family picture!
The best part of Brady's summer was THE FARM!
First day of Grade 3

First try at Kindergarten ;)

Loves kitties!
Incredible 5 days at a work conference in Banff.

Rivals!!!  Had an awesome night!!!

Everything was Minecraft for his 8th b-day....and we
don't even have the game!!

Monday, July 29, 2013

Highs & Lows

Just about 4 weeks into our summer holidays...and it's been a mix of awesome highs and some pretty nasty lows.

I've got to start with the fun stuff, since that's how our summer holiday started!  We spent our first week of holidays down at Potato Lake, near Park Rapids MN.  There's a reason we keep going back.  We have such a great time!  If I said everything I could about camping down there, this would start to sound like a tourism blog!  I just can't say enough about the place!  So I'll keep it brief, since some of you have been asking about where we went (with photos from this year and the last few years).

First, the campground is amazing.  It's a family owned/run campground, right on Potato Lake, with facilities that include a great pool, immaculate buildings, play structure, ice cream shop.... oh - and there's wifi!!!
There is just so much to do in this area - so I'll mention a few...

The lake - boating in general is great fun, but a boat ride out to the sand bar is always a must-do activity.  You just 'dock' your boat in the sand, and get out into the water that's about a foot deep, and play water games or just park your lawn chair in the water and relax.  We rented a pontoon boat this time, and enjoyed our time at the sand bar as well as just cruising around the lake, dreaming about life at one of the amazing lake front homes.

The biking - Minnesota has converted old railway lines to beautiful, asphalt paved bike paths.  The Heartland trail is a 49 mile path that connects Park Rapids to little towns along the way, through wooded areas and farm land.  It's so much fun, the scenery is amazing, and not having to worry about traffic when biking with kids is great!  The stretch that we biked took us to a tiny little town (not sure if it's really a town - more like an abandoned town, turned restaurant and touristy strip - called Dorset).  A stop at the old fashioned ice cream parlor or supper at the Mexican restaurant is a must!!

The food - Really, camping is all about the food!!  And not always cooked at the campsite either!  A favorite destination is the nearby Logging Camp for a breakfast fit for the lumberjacks!  The site has some old logging machinery and buildings to check out, but breakfast is the main draw!  It's an all you can eat, eggs/ham/hashbrowns/pancakes type meal, served family style at large dining hall tables.

The Fourth - We've always been there over the 4th of July.  This in itself is quite the experience  -  But when in America....do as the Americans!!  It's pretty awesome!  The campground owners (siblings, 3 sisters and a brother) organize a Bike Parade for all the camping kids.  The kids all get a bag of decorations for their bikes, and after putting all the finishing touches on, they parade through the whole campground, to the cheers and applause of all the campers watching.
We've enjoyed the afternoon 4th of July parade in Park Rapids, too.  A little different from our local parades here!!  And we head back to Park Rapids at dusk for the fireworks - a fun day in our week of camping!

The pool - This is where we spent a lot of our time!  It was also a hi-light for Nate.  I finally saw the joy in him, as he spent hours paddling around the pool with his life jacket on.  It was just the break from routine that he needed.  He loved it!

New things to explore - This year was the first time we went to a local amusement-type park.  It had the typical bumper boats, mini golf, batting cages, laser tag, etc.  Next year, we'll probably plan to spend more time there, as there was a lot for the kids to do.

The downtown - Park Rapids has your typical old fashioned, downtown strip filled with shops.  From candy stores, clothing, trinkets, restaurants, home decor, and everything in between.

The Mississippi - For the cool factor of being able to say you walked across the Mississippi, a stop at the headwaters of the Mississippi River is a must.  A fun learning expedition to boot!

The camping - And then there's just the sitting back, enjoying snacks around the campfire, games and stories that extend into the late nights.  The slow moving life....where meals are prepared the slow way, and enjoyed in the great outdoors.  Even washing dishes outside is more enjoyable!

So yes, this summer has had some pretty great highs....and it almost seems I shouldn't speak of the lows....but this is life - our life - and what's life, if you can't share it with others?!

After coming home from holidays, and spending another great week at home, the sickies struck me and Nate.  I'll call it the flu... the fever and cough flu.  I got through it and was feeling totally good after 4-5 days.  Nate, on the other hand, was a different story.

He came down with the fever on Sunday and the next 8 days were pretty horrible.  He was lethargic, coughing like crazy, and not eating more than a nibble per meal.  A day or two like this would be acceptable for a child with the flu....but with Nate, and other children with chronic conditions, it's another story.  By Wednesday, we had to do something, and the heart clinic agreed.  I checked his INR (blood thinner level) on Thursday and it was way out of whack.  That's one of the issues with being on blood thinners:  it's effectiveness is directly connected to your diet, and the food consumed.  Since Nate was on day 5 of not eating, it had caused his levels to get very high.  We saw a local doctor, who after seeing his chest x-ray (which didn't look too bad yet), decided that in a case like this, you err on the side of caution and get some antibiotics in.  It took another 4 days of not eating, the lethargy continuing, and the blood being unstable (doing daily finger pokes to check levels, and adjusting his Coumadin dose daily) before he seemed to turn the corner.  It was the next week Monday, and he finally woke up with a small amount of energy, was a bit more chatty, and actually requested some food.  All I could do was thank Jesus!  What a long and exhausting (emotionally and physically) week.

So after coming off that "low", this last week has brought us back on the road to regaining some stability in his blood, and, back to square one, it seems, in regards to his attitude and behaviour.  It's been a difficult parenting week.  In fact, after a difficult day today, Don just joined me in the living room and said if we were drinkers, he can't imagine the amount of alcohol we'd probably be consuming!!  Instead, we're going to eat some strawberry pie and watch a couple of episodes of 24 (yup, just getting into that show...about 10 years behind!!).

So that's been our July.  The camping trip really did amazing things for Nate.  The complete change in routine and environment seemed to bring the old Nate back to us.  He has never been so happy as he was in the pool.  For hours each day, our little fish found happiness and joy in the simple things!  Maybe we need to get out for another week of camping now.... see if it works again!