June 3, 2019- Heston's 9th Birthday

Today my beautiful Heston turns 9 years old.  Each year on this day I share things that I am thankful for.  Below is a list of 9 things, for Heston's 9th birthday.

1.  The same things over and over-

When I sit and evaluate some of the things that we are most grateful for, year in and year out a ton of them are the same.  I could pretty much copy each list I make every year and add one more and be done with it- but I don't think many would be willing to read the same thing every year.  I was thinking a lot about this and realized just how much of a gift that is.  The fact that we have people and organizations that have been so helpful to us year after year after year is really incredible.

So many of our friends have stood by us, and continue to offer support.  Our church and Heston's school communities love him, and have shown us time and time again that they aren't going anywhere.  Canuck place has been our main source of respite and medical advice, and are ready and waiting to embrace us when they are needed for end of life care.  The Canucks continue to be a source of excitement for us season after season: Chris Brumwell (Canucks for Kids) has been a huge supporter of our family.  So many special Canuck related memories have been made possible thanks to him.  Alex and Diana Biega go out of their way to visit us when we are at Canuck Place, and do everything they can to help us create memories, including after games.  Bo Horvat has made it possible for us to visit him after numerous games, never hesitates to sign things for us (even though we have a houseful of items with his signature already) and always assures us that he wants us to keep sending him updates on Heston.

All of these people could move on, feel like they have done enough for us already and they would be okay to do so.  And yet, they all continue to stand with us, support us, and make us feel valued.  For that, I am so grateful.

2.  Opportunities to make memories-

This past year Heston has high-fived the whole Canucks team before a game, met many of them afterwards, gone to Disneyland, spent a weekend at the Tigh-Na-Mara resort in Parksville (complete with a fire on the beach) and gone on numerous outings with Canuck Place.  These events were well documented and the photos and videos we took will forever be reminders to us of the amazing times we had together as a family.  Much effort and expense went into the organization of each of these events and we are so grateful for the opportunities.  

3.  Liquid Hope-

If you are wondering what the heck liquid hope is, I'm sure you are not alone.  Liquid hope is the name/ brand of the organic, all real food supplement in a liquid form that we are currently using for Heston's feeds.  Heston is now completely g-tube fed, and we used to use a regular formula for him.  Most of the formulas on the market are milk and sugar based, and for the most part this worked for him.  But as his bowels started slowing down, he had more and more constipation issues.  We were thrilled to learn that we could get government coverage for a real food formula called Liquid Hope, so we mixed it in with his regular formula and at first that was all that was needed to get things moving again.  Over the past year we have had to use more and more of this formula and less and less of the milk based one to keep up with the slowing bowels.  Now his body will no longer process the regular formula and we are solely on Liquid Hope with other laxatives/ medications added just to keep up.  We are also aware that we have almost maxed out our options in this department, meaning that if his bowels slow down again, there will not be a whole lot we can do.  But we are thrilled that we have made it through this year without major GI issues and we know that this is largely in part to the Liquid Hope.  I am personally convinced that if this had not been an option to us, Heston would not still be here.  I am thankful for Liquid Hope, as it has given us the gift of time.  

4.  A Husband that is on the same page-

Jordan and I are different in a lot of areas, but we enjoy a lot of the same things, have similar interests, and find that we often agree on things we want.  This has come in very handy with life in general and raising our boys.  Lately we have been trying to pre-plan for some end of life things for Heston.  These kinds of decisions are emotionally draining, exhausting and can be stressful.  I can not imagine trying to walk through this and make these decisions with someone who I didn't see eye to eye with.  When you are stressed, disagreements can happen over even the slightest things, and I am so very grateful that Jordan and I have been able to work through most of these things in complete agreement,  as a true team.

5.  The sharing of Sanfilippo parents-

We are often in the company of other parents going through a similar experience to us, particularly at Canuck place, but there is something extra special about having actual Sanfilippo parents as resources.  I have followed many other Sanfilippo families on social media for some time now, and learn so much as I watch them journey through the various stages of the disease.  I have recently been especially blessed by two other Sanfilippo moms whom I have had the privilege of connecting with personally.  Their willingness to share their experiences, advice and suggestions with me has been so valuable.  Both of them have each lost 2 children to this disease and yet they are willing to take the time to help me. They have answered tough questions, been open and honest with me, and given me the most valuable insight and advice.  I am so very thankful for their example, and for their guidance.

6.  Financial Support-

If there is one thing I have learned as a special needs parent it is that anything considered "medical" or "special needs" is usually ridiculously expensive.  Over the years we have had numerous organizations step up to fund equipment for Heston- things we would never have been able to afford on our own.  From wheelchair lifts and specialized seating, to diapers and feed, and even our amazing van, so many things have been funded for us and we are grateful to each and every organization that has supported us in this way.

There have also been those who have given us financial support directly, or through fundraisers.  We always set these funds aside and when expenses come up related to Heston that are not covered otherwise (things like maintenance on our wheelchair lifts, special clothing like his poncho, hand brakes for his wheelchair, his IPad, etc) we have been able to use this money to pay for them.   Last year when we started to see real decline in Heston and knew our opportunity for one last family trip to Disneyland was nearing an end, we were able to seize the opportunity and book that trip, largely due to these funds we had set aside.  As a family of 7 living on a single, moderate income, having the ability to pay for so many things for Heston without going into crippling debt has been such a gift.  We are forever grateful to so many who have given.

7.  All of my boys-

I have often said that the best thing we ever did for our older boys was to have the younger boys.  They have learned responsibility, compassion and become a whole lot less selfish as their younger brothers entered the family.  But if you were to spend time with both Caynan and Dryden, you would find that they also really just love spending time with their little brothers.  They seek them out when they have been away from the house, they love teaching them games and they genuinely care deeply for them.  And this gift goes both ways.  Watson and Gibson absolutely adore their older bros.  They learn so much from them, are entertained by them, and are comforted by them.

Heston is sort of his own category when it comes to the kids in our home.  He loves watching his brothers do all sorts of things, and enjoys cuddling with Caynan.  Having so many boys keeps things moving, so Heston is seldom bored, and is usually taken to places we might not have bothered to make the effort to take him to had it not been for the fact that we were going for his brothers.  

But the value that Heston has been for all the other boys will never be able to be measured.  He has taught them to be accepting and compassionate of those who cannot do what everyone else can, and to value life beyond abilities.  The fact that he requires a lot of our care on any given day has made all of his brothers more self sufficient and responsible.  Heston has been the permanent baby of the family, so to speak, so even the twins who are the true babies of the family have learned maturity past their role.  I don't know a lot of other 6 years olds who would sit and hold their 8 year old brothers hands while their mom changed his diaper (and everyone else fled from the smell), but when called upon, Watson is my go-to.  I don't know many 6 year olds that know how to control a wheelchair lift, turn off a g-tube pump, or continue to make sure that their brother has something to watch on his Ipad, but Gibson and Watson are experts in all of these areas.

Heston has also given us as parents great perspective as we raise all of our boys.  Things learned that would have previously been expected are now a gift.  We are so grateful for each new stage, ability, milestone reached by our other boys, as we no longer take so many of them for granted.  And when Jordan and I are tired from the daily tasks of running a household of 7, mixed with an emotional diagnosis, and lets be honest, a bit of age, we are so grateful to have teenagers full of energy to entertain kindergarteners.

8.  Team Heston-

We have started approaching people to be a part of what we are calling "Team Heston".  When things start to go downhill with Heston, we want to have people in place to help keep people informed, give direction and suggestions, and to be our main organizers of support.  Our hope is to help those who help us by giving roles and organizing areas of help.  We are very fortunate to have such an amazing support group around us.  We love that we can approach people to ask if they are willing to help in an area, and they assure us that they will for sure be willing.  It is during times like this that we are reminded how loved Heston is and how caring and generous so many people are.  As we look ahead, we are so grateful to have a Team Heston standing with us.

9.  The benefit of Gratitude-

As a member of the "parents of a terminally ill child" club I find myself in the company of a lot of mothers in particular who are on a similar journey to me.  Many of them I follow on social media, and some I have met at Canuck Place.  I have noticed that the majority of these parents seem to be living in one of two categories.  They either seem to be stuck in a cycle of anger, bitterness, and self pity, or they seem to somehow find gifts, even joy in and through the circumstance they are in.  The interesting thing is that the circumstances can be basically the same in two different families, and yet how they deal with it, how they respond, and then what they share can be almost polar opposites.

I Thessolonians  5:16-18 says:

Rejoice always, pray continually, give thanks in all circumstances for this is God's will for you in Christ Jesus.

When Heston was first diagnosed I struggled with the idea of giving thanks in all circumstances.  I thought this was an unfair thing of God to require of me.  How could He give me such a terrible situation and then ask me to give thanks in it?  How could God be so needy that even when He allowed my child to receive a terminal diagnosis, He had to have me pretend like everything was okay and give Him thanks for it?

I have lived 5 years through this diagnosis and have learned that an attitude of gratitude is the greatest gift, not for God, but for us.  It is like being diagnosed with a disease of bitterness, anger and self pity, and then be given a prescription that heals.  The prescription is to find things to be thankful for, each and every day, and slowly but surely you will find that you experience less bitterness, and more contentment and joy.  And honestly I have found this over and over as I get older- so many of the commands and suggestions from God in the bible are gifts for us.  It is as if, as the creator of humankind, He says, "I know exactly how you are made and what you are made for.  I know that there are going to be trials and times when life just sucks, and I want to tell you the best way to get through it.  I love you and want the best for you, so I want to give you guidance- the secret to living your best life.  That secret is to be thankful.  Gratitude can take you from bitterness to joy, without a change of circumstance.  If you want joy in your life, choose to be thankful."

I wish choosing thankfulness was something you could just set as a new default and it became your new automatic, but unfortunately, even when I feel like it has become a more normal and a natural state, there are still times when I find myself wallowing in self pity.  I feel like life is unfair and this journey sucks.  But Heston has taught me so much in this area, and continues to each and every day.  There is not a day that goes by that I don't wake up, go into Heston's room and be thankful to hear him breathing.  I start each day with that basic, simple attitude of gratitude- grateful that he is alive.  I think if everyone was thankful for just the fact that they, and their children were breathing, and then went up from there, what a different world we would live in.

I am thankful I am learning that life is best lived with an attitude of gratefulness.  That being grateful is a choice and no matter what our circumstance, as long as we have breath in our lungs, we can find things to be thankful for.

Happy 9th birthday to my amazing Heston.  You are loved and treasured.  I am so thankful for your life.