June 3, 2020- Heston's 10th Birthday

Wow- Heston is 10!!  A part of me is thrilled that we are here, and another part of me is sad that we are already here.  As we celebrate our boy this day and the milestone it represents, as per tradition, I will share a list of 10 things I am thankful for, for this, Heston's 10th birthday.

1.  Heston's Stable Health

This past year we have experienced relatively minor changes to Heston's health and care.  He has been the most stable he has been in years, and we are so thankful.  This not only makes our job easier as it takes the guessing game out of trying to figure what needs to be done to accommodate changes, but it is so much easier to deal with mentally and emotionally.  For the past while he has been alert and engaged, all without signs of discomfort.  We have found what seems to work for him (for now at least) which takes away so much extra stress.

Lately we have even commented on how when you try to lift him he really tries to pull himself up, seemingly in an effort to help.  Even while he seems oblivious to what is going on around him, he still has such a loving, caring demeanor.  These moments help us to appreciate the sweet boy that he is, and the privilege it is to care for him.

2.  Bed-positioning Sling

When Heston was recovering from the complications following his surgery a couple of years ago, he was assigned a rehabilitation team through our Queen Alexandria program in Victoria to aid him in his healing.  It was at that time that the OT introduced us to an amazing invention.  Years prior a lady in Victoria had a neighbor who had a child with special needs and in a effort to help her, she came up with an idea.  She used a jolly jumper as inspiration and sewed a cloth and Velcro contraption that would safely hold a child in place, on their back while they were laying in bed.  This "sling" has been a life saver for us.  While Heston is past the ability to roll over or crawl out of bed, without this device he can squirm himself into compromising positions in no time.  This would mean that we would have to check on him numerous times throughout the night to make sure he was safe.  Now, he is held into position in the center of his bed, all while still being able to move his arms and legs freely.

I have gotten so used to having this option that I realized recently that many likely don't even know it exists.  I can not imagine how much harder it would be for us to care for Heston without it.  It keeps him safe, gives us piece of mind, all while allowing us to get much needed sleep knowing he is safe.  This is invaluable and I am so thankful for the wonderful lady who created this device, and the amazing OT that introduced it to us.

3.  Heston's Older Brothers

Our oldest boys have always been great with Heston and the twins, but since they have both been doing online school (college and grade 11) for the past few months I have appreciated them even more.  They keep me sane by babysitting so I can go on walks, run errands or take Heston to appointments.  While Jordan is at work, I can not imagine how much more trapped and overwhelmed I would feel without their help and support.  They have also spent countless hours playing with the twins- which is such a blessing to both us and them.  When thinking of having a family years ago we never planned to have older and then younger kids, but I have to say I am so glad we did!

4.  Our Home

I have always been thankful for our home, but never so much as I have been though this whole lock down time of COVID-19.  Our house used to be owned by Jordan's grandparents.  After they both passed away, Jordan and I agreed to purchase it from his parents, paying them directly without interest.  Without this amazing arrangement we never could have afforded our home.  We have lived here for 21 years now and have put a lot of money and effort into making both our house and yard work for our family.  We have ample space for all of us to live, and a large yard for gardening and play.

Our home is not wheelchair accessible per say, but we were able to put an elevator at the rear of our house years ago that gets Heston to and from the main floor.  On this floor he has access to everything he needs- his bedroom, a bathroom, the kitchen and the living room.  While it is an older home (built in the 1930s) with small rooms and doorways, we have made it work.  Sure the door frames, some furniture and many walls have scrape marks from his wheelchair being maneuvered from room to room, but what matters is we are together, and we have space.

As our family has been mainly home bound through this pandemic I have a renewed attitude of gratefulness for this amazing house and all the activity it holds within its walls.

5.  Our Outdoor Space

A couple of years ago we added a pergola with an outdoor couch to our deck.  We had hardly used our deck over the years, but I felt we needed something outside to provide shade for Heston so we invested in this purchase.  Two years later it remains one of our favorite places to spend time.  Heston loves being outside, so giving him a place to enjoy the fresh air has been great.  We knew it would be helpful for him, but we had no idea how much the whole family would use it.

This year we added a small fire table to our set up and are thoroughly enjoying this new feature.  We have roasted smores a few times, which always brings us back to the amazing memories we made at the Tigh-Na-Mara resort last year- the first time the boys had ever made smores on the beach.  Traveling with Heston is very difficult, so having the ability to make memories as a family right where we live is invaluable.

6.  Canuck Memories we made this year

This past year Heston was a part of a photo shoot for the new Canucks team jersey.  He also got to witness the training camp right here in Victoria, complete with pics with players after sessions (yes we did stand in line- but it happened:)  And then the highlight to end the season for us was that Heston and his brothers got to be a part of the ceremonial puck drop for the Sedin Legacy game.  We thoroughly enjoyed every memory making moment of all of these events.  The fact that COVID has put a hold on any public participation with the Canucks and the NHL moving forward makes us even more grateful that all of these events happened before the pandemic began.  What a blessing!

7.  Photographers

Whenever I look through photos of Heston over the years I am grateful time and time again for each and every one.  So many of my favorite photos are ones taken by professional photographers.  The quality of their cameras are way beyond what we have, and their eye captures the right light, the right angles.  We have done some family photo shoots, shoots for events, as well as many Canuck place opportunities.  We have photos that capture Heston as the star, as well as his relationship with us.  We have photos of him with favorite hockey players, and some at memory making hockey events.  If you have ever captured a photo of our boy for us, we want you to know how much we value that gift.  We could never put a price on what you have given.

8.  Heston brings joy

Like so many others this past few months our family has stayed very close to home.  Call it quarantine, lock down, whatever word you use we have been home day and night, only venturing out for necessities.  Over this period of time I have had numerous people message me about how they are missing getting to see Heston.  Whether it is his school community, our church community, or friends in general, so many people experience joy when spending time with our little man.  The people he has touched over the years is incredible and while it is difficult to explain why, many are drawn to him.  So often I have felt that sharing him with others is like gifting them with something special.  

While we will continue to keep him mostly to ourselves for the next little while, for his own protection, I look forward to letting him interact with others as soon as possible.  It is so rewarding to see the impact he has, and it fills our hearts when we see how much he is loved by so many.

9.  Coffee

I started drinking coffee this past fall.  I realize I am a bit of a late starter in this department, being 43.  Yes, I survived 5 newborns, including a set of twins without it, so why start now?  I was not against it, just never liked the taste and didn't want to feel dependent on something to help me function in the morning, so it never became a go to for me.  But the past couple of years I have struggled more with headaches, and found that caffeine and/ or sugar helped.  I know a lot of the time the headaches are stress related and are always exemplified when dealing with different aspects around Heston.  So this past fall I decided that drinking coffee would be a way to help me through the next phase of my life.

Needless to say, I have found drinking coffee super helpful and even enjoyable.  It has become something I look forward to, and represents to me more than just a drink.  To me it represents giving myself grace and acknowledging that sometimes I can use help.  Call it self help, call it treating.  However you want to look at it, it has been a deliberate shift in my thinking towards my own needs, taking conscious steps to strengthen myself mentally.  It might sound a bit overboard and exaggerated, but to me it is a big deal, and I am so thankful for it.  Thank you coffee!!

10.  Hope

I stopped comparing Heston to his peers years ago.  When he started falling behind in his development and then losing abilities it was too painful to imagine what could have been if he didn't have Sanfilippo.  I remember it being especially hard when his younger brothers "passed" him, and whenever I would pay attention to other kids his age I decided it was easiest just to not let myself think about it.  It was a way to protect my heart from breaking over and over.

Over the years I have come to realize that I love everything about Heston.  I love who he is inspite of Sanfilippo.  But every cell of his body has Sanfilippo and everything that he can or cannot do is altered by or because of Sanfilippo.  If I love everything about him, then while I wish from the bottom of my heart that he didn't have Sanfilippo, I also love everything about him with it.  He is who he is and to me he is perfect.  Thinking about what could have been can feel like I want him to be different- like I don't fully accept him for who he is.  So I have learned to love him exactly as he is, accepting his brokenness as perfection.

Lately I have found myself paying more attention to Heston's failing body.  His weakening muscles in his arms and legs, the almost deforming of his toes from lack of circulation, the stiffening of his shoulders and wrists, the worsening curvature of his spine.  I am watching his body deteriorate, almost breaking before my eyes.  And because of this, perhaps as a way to find hope, I have started thinking about how it will be for him to be free of this body in Heaven.  I can only imagine what it will be like for him to be free to run and jump.  I think of how my boy has spent over 10 years on this earth without saying a word, and to think that the very first words he speaks will be in the arms of Jesus.

I may not let myself think about what could have been, but I am finding a new hope in the thought of what will be.

Happy 10th birthday to my amazing Heston.  You are deeply loved, and today we celebrate everything about you.