June 3, 2021- Heston's 11th Birthday

 

Today is Heston’s 11^th birthday.  Wow.  What a year this past year has been; for Heston, for our family, and for our country and the world.  Numerous times this past year we had struggles with Heston and I thought we would never make it to this day.  But while he continues to decline overall, it has been at a slower pace than I would have anticipated.  It seems like whenever we get comfortable with how well he is doing, something happens to drop him down.  Whenever we are convinced we are nearing the end he seems to improve.  It has been an emotional rollercoaster of a year.  Not being able to plan ahead will always be a struggle for me and this year I feel like I am taking a masterclass in the art of taking things one day at a time.

 

When I look back on this past year I have to say that it has been harder at times to be thankful.  I think many can relate that it has been difficult to be grateful without constantly looking ahead at the future for the source of hope for that gratitude.  But I am a firm believer that thankfulness and gratitude are a state of being, not dependant on our circumstances- that thankfulness is a choice we make, even if sometimes our circumstances make that choice easier than other times.

 

So with that said, as per tradition, here I share 11 things I am thankful for on Heston’s 11^th birthday.

1. The end of COVID is in sight:

The pandemic has affected so many areas of our life.  I think we are all looking forward to restrictions lifting, and opportunities to socialize opening up again.  We are looking forward to things getting back to a new normal, and not having this extra burden to carry.  I am so glad it appears we are over the hump, and the end is on the horizon.

2. Pain reducing medications:

This past year Heston has struggled off and on with pain.  With his condition it can be almost impossible to find the source of pain since he cannot communicate with us, and his pain can be physical and/or neurological.  We are so grateful that we have, at least for now, been able to find medications that cover his pain.  Watching our boy suffering and not being able to do anything about it has to be one of the hardest things we have ever had to deal with.  Any day that our boy is comfortable and even close to enjoying life is a gift and we celebrate when this is accomplished.

 

3. A break from equipment needs:

In a typical year there are so many in person appointments to organize and access all that is needed when it comes to Heston’s equipment needs.  From his wheelchair to his bed, lifts for the van and our home, there are so many things that we have had installed or custom ordered over the years and it was amazing that this past year we really didn’t need anything new.  There are a couple of things that will likely start wearing out or need upgrading soon, but overall this past year has really been a much appreciated respite from the work that goes into making these things happen.  I am so grateful for so many supports that we have been given over the years that have allowed us to have these very expensive and much needed things.  Thankfully this year what we already had was sufficient for his changes and we were not scrambling for needs in this area.

 

4. Heston’s school staff:

This past year the ups and downs of Heston’s health have made for difficult times at home, but also transitions at school.  Heston’s teacher, his EA and the school administration have always been supportive of him attending and making the changes necessary to make that happen.  We are so thankful for such a supportive team around him and for the peace of mind they give us knowing that he is valued and cared for.  When you have a non-verbal child it can be very stressful to leave them in the care of others.  We are so thankful for the amazing and giving people that surround Heston everyday when he is at school and he continues to show that he enjoys his time there. 

A few days ago Heston had his first seizure at school.  He was cared for exactly how I had hoped he would be if this was to happen.  I was so proud of his team, and it reaffirmed how valuable the relationship we have built with them over the years is.  He is so loved there.

We are also grateful that Heston will be able to return for one more year to his elementary school and not have to move onto middle school next year.  There is so much more to entertain him at this school level, they already know him so well, and everything is already in place for his care.  It will be so much easier for us to not have to deal with all that would have to go into a transition for this next school year.

 

5. Canuck Place:

The other day Watson out of the blue says, “I don’t really mind COVID.  I can handle all the things like wearing masks, but the one thing I really miss is not being able to go to Canuck Place”.  This past year our family has really missed being able to go together for respite to Canuck Place.  This place had become such a part of our lives and the twins are especially connected there as we have almost been going for respite a few times a year for their whole lives.  We really miss it.  We are grateful that there have been some really great zoom opportunities through the rec therapy team to keep us both entertained and stay connected, but it is not the same as staying there.

But even though family respite has not been an option for over a year, Canuck Place has still been a valuable resource and support for us.  They continue to guide us in caring for Heston’s medical needs, whether that be over the phone, or through the times that I went on my own with Heston for a stay.  We rely on them when we aren’t sure what the best course of action is, when he is struggling and we don’t know how to help him, and when his symptoms change and we aren’t sure what to do for him.  His quality of life is definitely better thanks to their guidance and you just can’t put a price on how valuable that is for him and for us.

 

6. Grandpa Gary: 

We are so grateful that Jordan’s dad has been in good health and so available this past year.  He is always willing to do drop offs and pick ups when needed and this year there have been many.  From dentist appointments to school drop offs and pick ups when Heston needed to stay at home or we were at Canuck Place, whenever I couldn’t be two places at once he stepped in to help out.  This was an incredible help and having him allowed us to navigate the logistics of these times with relative ease.

 

7. I am an early bird by nature:

As Heston’s body slows down, his ability to handle large amounts of feed at higher speeds also is reduced.  We are so grateful for his g-tube that allows us to give him the much needed nourishment his body requires to stay strong.  At this point, however we have had to really slow down how fast we give him his feed, which means it takes much longer than it used to to feed him.  As this has changed I have had to get up earlier and earlier over the years to make sure his feed can go through before we need to leave for school.  Currently I have to get up by 5:30 am to make up and administer his feed.  I am grateful that getting up early is not a real difficult thing for me to do.

 

8. Our house:

This pandemic year we have spent more time at home than ever before, and I am more thankful than ever for our house.  We have a house with room for all of us, numerous spaces to entertain our kids, a deck with space to relax and get much needed fresh air, and a spacious yard.  We have wonderful neighbours, a lovely neighbourhood, and live in an amazing city.  We purchased 2 paddleboards last summer and have really enjoyed outings on the Gorge, which we live just up the street from.  I will always be grateful for where I live, and for this home that provides memories and comfort for this big family.

 

9. My garden:

Yes, I know this one has come up time and again, but in a year where we were mostly home bound my garden has been a huge source of my sanity.  It takes a lot of my time- the watering, the weeding, the pruning, but it truly brings me great joy.  I am forever looking forward to making improvements, discovering where things might grow better, trying new plants, and looking forward in anticipation of each new season.  The garden center is my candy store and while I don’t always buy things, whenever I get a chance to browse one it is a happy day for me.

My garden is also full of memories.  Not every plant signifies a monumental event, but some do.  As an example I have agapanthus that was given to me at Heston’s drive by birthday last year from my friend Lori.  What a wonderful memory! Whenever I look at or water it I am fondly reminded of that day and I know that each year it comes up it will be a source of that memory.

This past winter when we were going through a particularly difficult time with Heston I was given gifts from a dear group of friends which included a gift card to a local nursery.  I used this to purchase a beautiful rose plant called “Fun in the Sun”.  I decided that I needed this message in my garden- a reminder to have fun.  When I see this rose, I think of the love and support I have been given from these wonderful ladies, and remind myself to allow myself the grace and space to have fun, no matter what I am going through.

I have a mini calla plant that was given by a thoughtful friend of Caynan when Heston was struggling in the hospital years ago.  This plant makes me think of this time and be thankful for those who have been there for our boys throughout this journey as well.

These are just a few examples and I could go on and on.  And that is the point.  There is just so much to love for me in my garden.

 

10. My boys:

Like so many families, ours has spent a lot of time all together at home this past year.  We are home bodies by nature, and that coupled with wanting to protect Heston as much as possible meant that besides school, we really didn’t go out much.  This extra time together has made me love and appreciate all my boys more than ever.  I know the pandemic has taken a lot from all of us, but one thing it has given has been more family time.  All of the extra time each of my boys have had this last year with Heston has been a gift to each of them.  Having Caynan doing his college schooling from home has been so convenient for me, particularly during times when Heston needed to be home and I still had things I had to go out to do.  He has developed into such a patient, kind young man who not only adores Heston and the twins, but is always willing to be our 24 hour tech support in this house (not an easy task).  Dryden is finishing grade 12 and while he misses being a part of social activities he never complains about all the things that were missed for grads this year.  He keeps the twins entertained and is always up for any activity or game that might be happening.  Gibson and Watson are each such caring and thoughtful boys.  They have learned to be responsible as I am often tied up with Heston’s care, and are the best little conversationalists.  They keep energy in the house, but are also mature beyond their years.  I am so thankful that all my boys get along and we can truly enjoy time together as a family.  As Watson once said, “We are a really cool family.  I mean we have identical twins AND a kid in a wheelchair!”  Gotta love it.

 

11. We are not burdened to make memories:

We were so thankful this past year when the pandemic became a lingering reality that we didn’t feel desperate to make more memories with Heston.  We already took our trip to Disneyland a couple of years ago, we had so many amazing memory making opportunities already with the Canucks over the years, and we already had numerous photo shoots of Heston and our family.  It was such a relief to feel like we could rest in our time at home, spend time with our boy and not feel pressured to do anything more than just be.  This past year we have been able to simply exist, and to be truly content with that, knowing that existing is a gift in itself.

When you are given a terminal diagnosis for your child there are so many extremely difficult things that come along with it.  I have often mentioned the pressure to make memories, and how that can weigh on you.  The fact that you have the knowledge that your child’s time is limited, and that you know you need to make the most of the time you have is both wonderful and exhausting.  It is gift to know you can be deliberate and not waste your time together.  You take more photos, say yes to all sorts of memory making opportunities and as we did a couple of years ago, book that trip to Disneyland.  You linger that little bit longer when you kiss him goodnight, knowing waking is never a guarantee.  You hold his hand and let your body absorb his physical presence, knowing you will do anything down the road to have that moment again.  You treat each day as if it could be your last, and try to make sure to spend those extra moments with your boy.

But this can be exhausting when the days turn to weeks, weeks to months, months to years.  You prepare yourself each night that goodnight could be goodbye every day for years, knowing the only way for the process to end is when it is goodbye.

To be clear, I am not saying that we cannot, or will not make more memories with Heston.  His surprise drive-by birthday last year, with a fun visit from Dino Lab is an example of a really fun memory we made.  As I post this I know his class is planning to celebrate his birthday with a big party in the classroom today.  How wonderful!  But while I hope that we will have many more opportunities to do amazing things with our boy, I also am relieved that the pressure is off to have to make them happen.  We can just let happen what will happen, and enjoy it as it does, for whatever time we have left.  This is a burden lifted.

 

And so here we are, on a day where we are thrilled to be able to celebrate our boy, knowing he is in the late stages of his disease.  No matter what tomorrow brings, we know that we will always be thankful to God for Heston’s life.  We are blessed to have him in our lives and I am always amazed at how so many who know him feel the same way. 

 

Heston, we love you beyond what words can express.  Happy birthday sweet boy.