June 3, 2022- Heston's 12th Birthday

 

Today is Heston’s 12^th birthday.  Those are words I never thought I would say.  Right from his diagnosis, when he was already regressing faster than many Sanfilippo kids, up to the last year, even the last month I didn’t believe this day would come.  And yet here we are.  So as per tradition, on this, Heston’s 12^th birthday, I am sharing a list of 12 things I am grateful for.

1. So many who have supported us

Whether it was a card or email of encouragement, a meal or gift card, we have been so thankful for so many who have come along side us in this journey.  We knew years ago that this would be a marathon, but even we didn’t realize how long things were going to draw out at the end like they are.  I know it has not been easy for many to sit in this space with us and for those of you who are still here, thank you.  Obviously we are most directly affected by the weight of this journey, but that doesn’t mean that it hasn’t been hard for you all too.  I am grateful that you haven’t left.  That you continue to walk along side us.  That you show up.  We are lifted up by so many and for that we are grateful.

 

2. Medications and Equipment

Keep him comfortable.  Reduce suffering.  These have been our greatest desires for Heston from diagnosis to today and sometimes we have been more successful than others to help accomplish this.  But no matter how much we have loved on him, there is no way we could possibly have helped him as much as we have without medications and various positioning options, and almost all of these have been guided into our care by various medical professionals on Heston’s team.  It was only a couple of years ago when Heston had his first seizure.  At that time we had thought that perhaps he was one of the few Sanfilippo children where seizures are not an issue.  He had lived long enough without them that we thought we were past it.  And here we are today, where this is a constant, even daily issue.  If we did not have the access to the medications we do, I can only imagine the suffering Heston would be experiencing.  It is painful to even think about.  To say we are grateful for the comfort he has had from the meds that are working for him is an understatement. 

 

3. Heston’s bed

I realize that might sound silly, but years ago when his OT encouraged us to get a hospital bed for Heston it wasn’t an easy thing.  It seemed hard, unfair, to have a hospital bed for your 8 year old child.  But like so many other pieces of equipment we are now so grateful for it.  This bed allows us to elevate him, but also to place him in a position where his head can be lower than his body.  When this position was suggested for us to do a few months ago to help him drain liquid from his lungs in the night it felt wrong, but has since proven to be a huge help in his care and his comfort.  Added to that is the fancy air mattress with all the bells and whistles that helps prevent skin breakdown that we got last year.  The OT recommended we trial numerous mattresses awhile back while he was robust and could handle it.  As usual I was skeptical and thought it was a lot of hassle that would likely end in something unnecessary, but I was wrong.  This mattress has been so helpful and when nurses both at home and at canuck place are amazed at how good his skin looks for his condition, I know a lot of that is because of things like this.

 

4. Virtual Options

From medical appointments to church services, so many things have virtual options now.  I realize some might not think this is necessarily a good thing, but for someone with a medically fragile child I can’t tell you how grateful I am to access many things without having to transport Heston.  This reduces stress on us, and also helps us not feel so isolated. 

 

5. Health

Stress takes a toll on the body and we have had our share of it for some time now.  Jordan and I have both found walking to be helpful- not too strenuous on the joints, getting fresh air.  While we don’t get a chance to walk as often as we would like, we certainly appreciate and benefit from it when we can. Both Jordan and I are feeling the effects of years of stress recently, but overall we are in decent health and for that we are grateful. 

 

6. Canuck place

Over the years Canuck place has been an amazing source of respite and making memories for our family.  When I make up yearly photo albums I am reminded year after year how so many of the larger events or outings we get to experience are because of Canuck place.  This year our needs have shifted and especially recently Canuck place has been both a break and our greatest source of medical help.  So much of the physical comfort that we have found for Heston in his decline has been from the advice of Canuck place.  From bed positioning to meds, to feed advice, they have guided us each step of the way.  They have been gracious to not judge us when we arrive on their step, certain that Heston is near the end, only to have him stabilize and even perk up.  They walk us through the stress of what we are dealing with, encourage us that we are doing a good job, all while loving on our boy.  I can not express how grateful I am to be a part of their program, and how lost I would be without them.

 

7. Lack of snow and ice

Growing up in northern Alberta I don’t think there is a year that goes by that I am thankful that I now live in Victoria, particularly where Heston is concerned.  We can have icy or snowing weather for a matter of days and I am already super frustrated having to navigate a wheelchair in those conditions.  Heston has always loved going for walks outdoors and so that is something we have tried our best to continue doing for him, even in his difficult state as of late.  I am so grateful that we live where on most days, year round, this is something we can do with and for him.  Our daily walks have become a really special time for us and for that I am thankful.

 

8. Podcasts

Between Covid and Heston’s care and unpredictability I have been unable to commit to any bible study groups, which I have traditionally really appreciated.  I have also found it difficult to read most of the time, my brain tired from the stress of all that I deal with on a daily basis. This past year I have enjoyed listening to podcasts.  I am thankful for all I am learning and that options like this are available, especially to parents like myself who are stuck at home.

 

9. Our boys are all home and supported

With Heston being in the late stages of his disease we never know when he could drop down.  For most of the year one of our boys lived away at bible school up Island.  It wasn’t far, but a bit of a drive and a ferry away so it was one more complication to think about if he wanted to be with the family near the end.  He has now completed his year and everyone lives at home.  This has not only been great to have our family be able to spend time together, but will make things much easier to navigate when things escalate with Heston.  One less stress in these times is always something to be thankful for.

On top of that, this past year we have watched all of our boys work through various aspects of life.  From school to work to friendships we have seen God place them in situations where they are supported.  We know that there are difficult days ahead for all of us so it is comforting to be able to see how God is building a support group around them.  He has blessed them in the past, and that gives us the hope and conviction that He will continue to do so for them in the future.

 

10. We can always learn through hardships

There is no question that this year as a whole has been our hardest yet with Heston.  We have walked this journey, from birth to diagnosis to now with ups and downs but most of the hardest times we have had have been in the recent months.  One of the most difficult things has been living in unknowns literally every single day for months now.  As a major planner type person this has at times been a stretch for me, and at other times it has been excruciating.  Hard and difficult don’t begin to explain it, and I’m still right there in the midst, with no known timeline in sight.  I have failed many times to navigate it well, but that is part of the process. 

 One thing I can say is I am definitely learning, growing, changing.  I have always found it interesting how so many people say they wouldn’t change a thing after a difficult period in their lives, yet we all try everything to avoid them.  We seek happiness over depth time and time again, but when you are forced to walk through the valley or the fire we come out on the other side truly seeing the value of the hardship.  I will forever be grateful to God for taking me to my knees in desperation because time and time again He has shown me that this is where I find Him.  And no amount of ease or happiness can penetrate the thirst of the soul like the presence of God can.  If hardship is what it takes to get me there, then I don’t want to waste any of this time focused anywhere else.

 

11. Caring for Heston has forced me to sacrifice

Taking care of oneself first might seem like a popular piece of advise but in reality, where Heston’s care is concerned, this is seldom an option.  He requires so much care and so much time.  I often say its like having a newborn that you can’t carry around everywhere and especially recently my life has simply been put on hold to be everything for him that he needs me to be. 

My lived experience has shown me that if we focus on ourselves too much it often just leads to wanting more.  If we truly want to fill our own buckets so to speak, the best way is often through giving, even sacrifice for others.  By giving we get so much back.  Selfishness just leads to emptiness.  Heston has forced me to sacrifice- so often I have not had any other choice as his mother.  But this sacrifice has made me a much better person.  I am far from perfect in this area, but the more content I let myself be in times of not putting myself first, the more healthy and truly fulfilled I am.

 

12. Heston

There is just something special about that boy and I can’t begin to express how thankful I am for him.  It’s impossible to describe what it is about him that is amazing.  It doesn’t matter where we take him, whether it’s school, church, or Canuck place, or somewhere else, if people get a chance to spend real quality time with him they fall in love with him.  It doesn’t even phase me anymore because I have seen it over and over again.  Even in these late days when he spends a lot of time just sleeping, I have seen numerous nurses say how special he is. There is just something amazing about him.  

There are so many things in life that Heston flips upside down and what would be the norm is no longer.  One might love someone for their sense of humour, maybe their kind or generous spirit, or maybe their intellect.  For a boy that has no words and doesn’t comprehend, he lacks all of these abilities.  And yet he oozes special.  You can hold his hand and your heart be filled.  If you know him, you want to spend time with him, just be around him.  He has a spirit about him that is magnetic in ways I have never experienced and could never explain.  And I get to be his MOM.  What an incredible gift.  100 percent this journey has been and still is incredibly difficult  but no question has it been worth it.  He is way more than worth it.  He is incredible.

 

Happy 12^th birthday our dearest Heston.  You are loved for who you are, and we are truly blessed to be your family.  We love you sweet boy.