Loving Isaac

I felt a strong urge to write today. Not sure why, but will see what unfolds.

It’s been a very long season walking this mental illness with Isaac. We can’t believe it’s been almost a full year since his manic episode in Hawaii during his first months of college at the University of Hawaii at Manoa.

He’s been home with us since the beginning of November 2022, and we are so grateful for so many things. We are grateful he is alive and with us, for starters. As we’ve heard more stories about mania, we know that death, imprisonment, estrangement or suicide are common realities for families. It can involve heartbreaking tragedy, and that is so so humbling.

We are also so grateful for our relationship with Isaac. He knows he’s loved. He knows he has a safe place here with us. Even if he doesn’t totally understand what’s going on for himself or on most days really wishes he could just disappear, he does feel cared for. His fears are so deep and irrational, that it’s a gift to provide him reassurance each day that he will eat, have a bed to sleep in, and can enjoy the peacefulness of nature and try to “win the day.” (or at least just put one more pearl on a string)

Several people have repeatedly encouraged us to make sure to show compassion for him and deep love, and I’ve really appreciated that. We’ve been tempted throughout all these months to be impatient with him, combative in trying to make him take his supplements or do certain things, and discouraged by the intensity of it all. It’s easy to get frustrated with “him” instead of with the illness. But we have learned to lean in deeply in faith in our relationship with the Lord. He fills us with His love so that we can have the strength to pour it out to Isaac and even others. The Lord encourages each day through His word, through others, and even sweet surprises in nature (like coyote or hawk sightings or incredible sunsets). We know we are not alone. And we’ve come to really really love Isaac in a way we never had before.

As parents and a couple, we’ve simplified our life greatly to be able to just take care of ourselves better so we can care for him. Our regular walks around the block alone or with each other are necessary for our own physical, emotional, and mental health. Our times of prayer in the mornings are non-negotiables. As we are learning so much about health in general, we are even feeling revitalized and have new tools and resources to share with others.

And the spiritual truths we’ve learned so far… Wow. I need a whole other blogpost for that. 🙂

Our Journey with Isaac this Last Year

To backtrack just a bit, Isaac seemed to be “getting better” at the beginning of this year. He was working at Cabin Juice, (a restaurant at Gravitee Haus) working out a little at the gym, sleeping well, taking great vitamins, doing 40 sessions in a hyperbaric oxygen chamber, seeing his therapist, snowboarding, and spending time with friends and family. He was still struggling with depressive thoughts, but by late April had a pretty good routine and mood and even a sweet friendship again with Jadyn, his sister.

He was focused on getting back to Hawaii, and we wanted to support that to some degree. We found out about a program called Surfing the Nations in Wahiawa on Oahu that he applied to and got in, and so we flew with him out there in May to help him get settled in. It was a small program for three months that involved character development, volunteer work, and even service abroad. It sounded perfect…

Unfortunately, the stress and the travels and experience in general really impacted him, and he began to “ramp up” again. He was having trouble there with everything, just being around people, not being able to make any decisions or meals for himself, and just not feeling like he could be there. We brought him home from the program after about a week, and it was another miracle getting him back home alive…

Since we’ve been back in Colorado, his symptoms have been much worse. It took a very long time to get him sleeping again – and five months later, it’s still a long process to get to bed, likely with much interrupted sleep. He’s not really wanting to see anyone outside our family. He’s worried something is wrong with his heart and his knee, and so that keeps him from wanting to exercise, hike, or even walk around the block sometimes. He doesn’t like that he’s human and that we chose to have him as a child. He really doesn’t like “humans” in general and all the negative things about “our species”… He is not interested in any vitamins, supplements, or medication. He has a hard time even knowing what to eat, and so every meal is a challenge to help him settle down to just finish. He feels like he’s starving, but then says if he eats, it just makes him more hungry. He struggles with the whole process of living – why get clean if you are going to get dirty again? why eat if you are just going to “poop it out”? why live if you are just going to die?….

So, most of our exhaustion is from just the emotional fortitude to navigate these conversations.

A Whole Different Set of Tools

Isaac has anosognosia (at the time of this writing- not any longer), a condition where he is not aware of any illness. So, we cannot really have a logical or rational discussion with him. Don and I have relied on logic and reason so heavily throughout our lives, but this requires a whole new set of tools. We are grateful for a book some new friends recommended, I’m not sick, I don’t need help, which taught us about the LEAP method. Here’s a quick TedXTalk about it. We’ve been practicing it, and it’s brought a new level of peace to our home.

We also need other tools every hour like love, patience, kindness, faith, surrender, hope. These are things that in our human capacity run out pretty easily. It’s humbling. But we are grateful that the Lord replenishes these things in our hearts daily. We cannot give what we do not have.

I’ll write again later! But before I close, if you or a loved one are struggling with mental illness, ADHD, seizures, etc. check out Dr. Kendall Stewart from Neurosensory Centers of America in Austin. We got some great news from him about Isaac’s DNA (10/6/23) and a protocol that could have an incredible impact in as little as two weeks! Let me know if you’d like to hear a copy of the recording. Will keep you updated!

Thanks to all of you friends and family who have been praying for us and supporting us with meals, gifts, and all the little and big things you do to help! We can’t do this alone 🙂

Resources for Mind, Body, Soul Spirit

Here’s a special page I created with resources from all we’ve learned in getting to the roots if Isaac’s illness, which ended up being Autoimmune Encephalitis.