Jordan's update May 26 2019

My wife usually shares most of our thoughts and insights regarding our journey with Heston, but I thought I might share a few that have been on my mind lately.

Yes, I’m worried and anxious

Looking back, I think every new parent feels a bit inadequate when they first realize that they are suddenly responsible for the care and well-being of their new baby.

With our first child, I remember listening at night for breathing, feeling a hint of worry that everything might not be ok. I became more relaxed the more kids we had, knowing that my fear was unfounded.

There is a daily weight knowing that this fear is not unfounded with Heston.

• When I listen to him breathing at night, it is not even and steady. Although that is his normal night breathing, it is still unsettling, knowing that there is always the possibility that he will simply not be there in the morning. This is always a possibility with children with Heston's disease.
• During the day I feel extra sensitive to monitor his facial expressions and sounds, as they are the only clues he can give us that something isn’t right. It would then be the difficult task of  assessing if he has mild discomfort, or something more serious, as he cannot communicate such things.
• Every phone call and text I receive, my first thought is, I hope there’s nothing wrong with Heston.  

The unknown of Heston's health, and how and when he will go, is a daily burden that Kerena and I bear. 

 Some days I wish to be free of worrying for his health, but I also fear that my future self would gladly trade agonizing grief, to go back to where I am today.

I wonder “if this is the last” for so many things

When someone you love suddenly dies, you would give almost anything to have one more moment with that person.

In a sense, that is one benefit of the foreknowledge of Heston’s terminal diagnosis. I think of that so many times when I am playing with him or just being cozy. I know I will long to be back in these moments, and I try my best to mentally capture and treasure them.

It is painful to see your child slowly fade before you. There are the bigger losses like walking and eating, but sometimes the smaller things are harder, because you don’t realize it until after they’re gone. It’s not until you see a video from a few months or even weeks ago, that you see a change has happened.

There are some things that are so meaningful:

• Hestons sparkly eyes- It is getting harder to “see through” to him. You can tell this disease continues to cloud his mind, and the glimpses of connection are getting fewer.
• Hestons smile and laugh – He has the best smile and laugh, hands down! I am so thankful that we still see this, though it is much less frequent these days.
• Hestons touch – In his own way, Heston communicates with touch. When he is excited to see you, he wants to grab your, well, your face! When he relaxes, he is cozy x100, and you can tell he responds to you just sitting and having your body next to his. He can’t control his arms and hands as well as he used to, but he still tries.

I am not myself

I feel I’m a different person.

Of course that is natural with time and (hopefully) maturity, but almost like Heston’s mind, I sense part of me is clouded.

• I am not as fun. I used to live for a funny quip, and eagerly looked for opportunities to make others laugh. I don’t think I ever ranked super high on the fun chart, but I’m definitely down a few notches.
• I am even more reclusive. I am an introvert by nature, but I feel I withdraw from engaging with people more than I used to.
• I have been crankier and more irritable these past years. Unfortunately, I save most of these characteristics for my wife. My layer of patience and understanding is especially thin around home. I am accounting a lot of this to the stress of Heston. If my wife disagrees on this, we will “talk loudly” about this later, haha.

We are a team

As difficult as it is to have the stress of Heston's disease, along with raising our 4 other kids, it would be so much harder if Kerena and I weren't on the same page.

We both make our best effort to not just “appear to be coping”, but to be actually living our lives with purpose as we wade through these waters together.

It is difficult, and different things will hit us as different times with no warning. We talk through whatever we're dealing with, and we both feel free to share our hurts, complain, and vent.

We want the same things for Heston:

• For him to be as happy and physically comfortable as he can be.
• For him to be involved in our regular family life
• To be conscious to show him respect and dignity with what we share. We strive not to sensationalize his difficulties, but to provide needed and relevant information to the many people that care about him.

We have a team

Previously, I had never fully evaluated the impact of relationships. Since Heston's diagnosis, it has come to light how many quality people we know.

Our close friends have been absolute all stars. What a value they have been to our family.

But good hearted people have emerged from many corners of our lives. Friends from elementary school, family and extended family, people from work and former work, parents of our kids friends, teachers, people from our church, and the list goes on and on.

So many of you genuinely care, and it really impacts us.

Knowing this helps give us peace of mind as we look ahead.  We are anxious of all the unknowns, but one thing we do know is that we have an amazing team of people standing by, ready to help us. 

We are so thankful.