October 22, 2022- Thoughts from Jordan

 

How am I doing? That’s a great question, and I think you would agree, it depends on a lot of things.

It depends a lot on the moment. I bet some of you are doing great right now, and some of you maybe not so good. And your answer might be drastically different if you were asked that same question an hour from now, a day from now, or a month from now.

The past few months (and years) there has been a much deeper focus on the question, “how am I doing?”.

For Kerena and I, when we are asked that question, it comes to 2 levels, how are you generally doing, or the much deeper:

What is life like knowing your child will die, and now, what is life like after your child has died?

I will go as deep as I can to answer these 2 questions

We had 9 years to process and grieve the news that Heston would have a short life here on earth.

Unlike a child who is suddenly taken in some sort of accident, we had years to say goodbye. I held Heston so many times with the thought of trying to capture that moment in my memory, as I knew I would someday long to transport myself back in time, just to hold him for a moment.

There were many physical capabilities Heston lost while he was still with us. Each stage of regression we would absorb the loss as best we could and adjust to the new normal. I wouldn’t say we got used to this process, but rather we became accustomed to it.

I was not at all sure how I would feel after Heston was gone. Probably my biggest worry was that I would be an emotional wreck, but generally I am surprised that grief has not gripped me as tightly as I thought it would. Now I will preface this by saying I believe there is no right or wrong journey in grief. It is not something you handle, but something that accompanies you for the rest of your life. Just because someone would react quite differently in my same situation does not make grief any more or less meaningful or life impacting.

Like many of you, Kerena and I have had periods of time where life was especially hard work. When our twins were born, we had a year that was basically a blur of feeding babies, changing diapers, and not much sleep. But that is a much different mindset knowing that things will eventually get easier, and the time and work invested now, will be rewarded for years to come.

It is very different having years of hard work, knowing things will get progressively harder. There is an end, but a terrible end, with no definite timeline of how hard things will be, and the mystery and unknown, of when the end will come. What a soul stripping objective this was to work towards.

Heston’s last few years were hard. Hard for him, and subsequently, hard for us. I felt like the Heston we once knew, was hidden, locked deep inside his body and mind, and we would rarely see small glimpses of him through the layers of discomfort, pain, and his body just trying to cope. The last 7 months of Heston’s life were especially hard. Harder than we let on, and especially hard for Kerena. She was with Heston caring every day, caring every hour, every minute. Kerena knew him better than anyone, she would sit with him for hours on the couch, his body nestled against hers. She could sense any new change in his body, any regression in his comfort level. All of this became harder when combined with unknowns, as Heston could not tell us what was causing him discomfort and pain. There were hours of consults, visits, trying this, stopping that, seeing what helped Heston and what did not. This was exhausting. draining, heartbreaking.

I can attest I have never experienced anything that goes as deep to my core, than seeing Heston suffer. To cope, Kerena and I agree we grew accustomed to locking away access to that area of our hearts as much as we could. I might compare it to an ER doctor who is shocked to see the next emergency operation scheduled is their child, but they must put aside emotions and feelings to ensure they are at their best to focus on the task at hand. It was this sort of logic that we had grown very accustomed to, not for one moment or a day, but for years. We tried to be at our best for Heston, our 4 other boys, my job, and Kerena keeping the household going. There are a lot of logistics, including meal planning, dishes, laundry, that is involved with having a large household. Heston added a lot to the list: diaper changes, laundry, bedding. Kerena washed and changed Heston’s bedding every single day. Heston’s medications and feeds was an around the clock schedule that we had to work everything else in our lives around.

Yes, there were times when Kerena and I were extra on edge and snappy with each other, and sometimes little things of life would seem to flair up out of proportion, but we knew we could not be shattered or crumble, there was too much at stake. We relied on each other, and supported each other as best as we could.

Since Heston passed away, it has not been easy for us to get beyond focusing on the regular things in life that need to get done. There are literally years of projects and ideas that we had put aside, that we suddenly have the freedom and time to do. Maybe keeping busy is a way we are coping, but it has been amazing to see the amount of projects and tasks we have completed the last few months.

And what is life like now that Heston is gone? Yes, a tough question to answer. As I talked about at the beginning, I think it is fair to say, the answer could change by the hour, day, or year. As humans we naturally want comparisons so we can better understand things. My mom passed away several years ago, and in the short term after, I mainly remembered her last few weeks in the hospital. But as time went on, I hardly thought of those last weeks of her life, I remembered my Mom as my Mom, who loved me and raised me, who was my friend and support for all of her life.

The memory of Heston in the foreground of our minds is of our child suffering, our child just hanging on. We miss him, but we do not wish he was back in that suffering state. But I know as time goes on, we will think more of Heston in the whole of his life. We will remember our sweet, gentle, joyful, thoughtful, patient, loving boy, and we will miss him for the rest of our lives.