Saying Yes Was Difficult. Letting Go Is Worse!

Hello friends and family,

I wanted to provide a massive update as things are changing very quickly.

About 6 months ago, we started looking into placements for when Tristan becomes an adult. A permanent residence that can take care of all of his medical needs. But the problem with the adult system is that you cannot apply until they turn 18 and could take years to be approved for the wait list. Once approved for this massive waiting list it would likely take years for a bed to open up after the approval was made. We were looking at at least 4–5 years before something could become available. The counter option to this was to apply for a child placement instead. Once in the system, he is automatically added to the adult wait list and is able to stay at the child placement until a bed should open up, regardless of how many years out.

And so, we made the difficult decision to put him on the list for a child placement, knowing that a bed could open up in 2 days or 2 years. 6 months later, one of these companies stepped up with an opening.

This company specializes in both child and adult living. And the best part is that once he is in one of their homes, he does not have to move out and into an adult facility. The children are never forced to leave and can stay in the same home as they transition into adulthood providing further stability. They built all of their group homes like a family living together. The boys live together as siblings. They have family meals together. They go on trips. Some have jobs. And the company owns a cottage that the homes can take turns visiting over the summer.

We have now been approved for funding to proceed with the home and everything is happening very quickly. Last week we went on a tour of the home that Tristan could potentially move into. Tristan would be the youngest of the group. One is 30, one in his mid-20s and the other 2 are early 20s, I believe. We met 2 of the 4 guys that he could be living with. They seemed guinely nice… and funny! Tristan had a great time visiting the home. He performed for the entire household signing, Come and Get Your Love by Redbone. He wanted to move in on the spot.

More reasons why this will be great for Tristan:

– Last month, his house went on a trip to the Dominican. More trips will be available in the future.

– Tristan will be signed up for special olympics and be able to participate for his level.

– Monday is Track & Field day. Wednesday is soccer. And Thursday is baseball. He is very excited for all 3, especially soccer.

– 2 of the guys work at a restaurant, and since Tristan has experience working in a restaurant with one of his respite workers, he will have the opportunity to work there as well, as the owner of the restaurant loves the home and the residents and is all for providing opportunites. Tristan was thrilled to hear this as he loves to help and wants to work.

– The school program he was a part of here was not suitable for him but sadly nothing better was available. A more practical life skills school program will be made available to him until he is 21.

– Last month the house hosted a “Spring fling” party for all of the different households. Another is planned for June 28th, which will be Canada Day themed party. All the different houses, boys and girls, get together and have fun.

I’m sure there’s plenty more that I can’t think of at the moment and likely more that I’m not yet aware of, but it sounds like Tristan is going to have a lot more of a social life and far more than what I can provide. It was a very difficult decision, one that I still struggle with greatly from time to time. It has been an emotional journey. But the fact that Tristan is excited about this makes it easier.

Final details… The home is located in Oakville and the move is scheduled for tomorrow. Like I said, everything is happening very very quickly. Once things are approved, everything is bam bam bam.

I’m sure you all have plenty of questions, I will do my best to answer them with the information I have.

Thank you,

Joel

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These last 3 years have been the most difficult of my life, yet also the most rewarding. When my nephew came to live with us at the age of 14, he was a perfectly normal child with occasional seizures.

Seizures are easy to handle. My brother has quite a few throughout his life so far. My father had a handful and my grandfather also suffered from epilepsy.

But when all of the other symptoms reared their ugly heads — that’s when everything changed.

In the first year, we spend a lot of time at McMaster Children’s Hospital. When eventually a diagnosis came… CLN3 Batten Disease. I was devastated.

There is no treatment and no cure!

While most of the symptoms fit the profile, they are not presented as Batten Disease would. With Batten Disease there is a constant never-ending decline. Those diagnosed with CLN3 rare make it beyond their early 20s.

In my nephew’s case, we are experiencing a waxing and waning of symptoms. In the last year or so, I’ve noticed a pattern. The first time I noticed it, my nephew had around 30 seizures in a 24hr hour span. The next day was about 12. And continued to decrease every day.

When they appear, they would start hard and heavy on the first day, then decrease over the course of a week or two. Then all of the other symptoms arise.

Excessive giddiness, where everything is hilarious and with a smile not his own; Uncontrollable Rage; Hallucinations; Psychosis; Confusion; Dementia; Memory Loss; as well as Cognitive and Neurological decline.

At worse, we have seen him completely bedridden and zombie-like, unable to feed himself or go to the washroom, requiring an in-and-out catheter. At best he is confused with severely delayed speech and memory loss. His mental state can drop as low as a 6-year-old during these times.

After a week or so, he slowly begins to climb out of it, regaining his senses. He never comes back 100%. His new baseline is always slightly lower after each cluster. And remains this way for a couple of months when the cycle begins again.

This has always baffled the neurologist. He could not understand why it was occurring this way. It should be a constant decline with no improvement.

But just over a month ago, we had a virtual meeting with my nephew’s geneticist who was surprised and confused that a diagnosis had been provided. She did not agree.

The geneticist did not believe there was nearly enough evidence to support this theory. At best, she said, she would call it a “working diagnosis”. So she ordered a Whole Exome Sequencing test which will test his DNA for any mutations or anomalies. We are still awaiting the results.

With my nephew moving into a medical group home, they require him to either have his first vaccine to move in or an exemption letter from his doctor.

Now before anyone labels me an anti-vaxer, would you have your child injected with a brand new vaccine when doctors have no understanding of his condition. No one can tell me what’s wrong with him and what’s causing this, how can anyone be confident that the vaccine would be safe for him. I have concerns. So, with such a lack of understanding, I tried to get the letter.

Unfortunately, the neurologist would not provide this as seizures and Batten Disease do not qualify for exemption and proceeded to tell me that he doesn’t believe that the Whole Exome Sequencing test is not required because he believes that his medical opinion is definitive.

I’m sorry but a second opinion disagrees and presented a damn good case as to why.

If it walks like a duck and swims like a duck but barks and has no feathers, is it still a duck?

It felt as though the three years I’ve spent caring for him, watching every occurrence, every change, was completely invalidated. In the last week or two, he’s been more clear-headed than I’ve ever seen. He isn’t struggling to find his words. He’s understanding without requiring further explanation. He’s having deeper conversations than I’m used to having with him. He’s improving rather than continuing to regress. There is no improving with Batten Disease, the neurologist said so yourself, so why is he not struggling like he used to? Why is he improving?

On top of that, another medical professional disagrees with the diagnosis.

And here’s the real kicker… Batten Disease is a genetic disorder! Let me say that again… Batten Disease is a genetic disorder! It is not a neurological disease. So why would I ignore the geneticist about a genetic disorder in favour of a diagnosis from a neurologist when he’s not experiencing a neurological issue?

The entire situation absolutely baffles me. And I spoke my peace. Like a mamma bear protecting its cub, I did not hold back. But he did not appreciate my “angry” tone.

Yes, I am passionate about this, I am concerned. I was not angry in the slightest. I had even apologized in the email if it came out harsher than intended but my points were valid. I was not unreasonable.

I do not believe that rules and regulations should trump empathy, morality, and love, and anyone who blindly follows slip further into darkness.

But this isn’t my life. This isn’t my choice. And while my nephew is deathly afraid of needles, he has decided to proceed with the vaccine in order to move to his new home. He is very excited. But I promise you if anything happens because of this, the neurologist, the hospital and the government are going to know exactly what my anger looks like.

But I have to choose now to hold on to faith. That everything will work out. That he will be fine.

I did not intend for this update to be so lengthy but it seems I had more to say than I thought. On that note, I will bid you all a good night. Tomorrow is a long day. There is so much left to do.

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This post was previously published on medium.com.

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