A Touch of Masochism

The last two weeks have been fantastic! For the most part we have learned how to stagger his medicines to cover the whole day and he's been having 2-3 days a week totally seizure free! Though we haven't been able to get two of those in a row, but we'll keep trying!

He's been pretty active, improving in head control, passed his last swallow study with flying colors, and overall he's been very expressive if not always happy. He's got two teeth finally! Maybe that's why he hasn't always been in the best of moods.

The only annoying thing is he is on a weird schedule. He likes to stay up until like one or two in the morning and sleep in 'til noon. So really, it's just the normal Payne family schedule. But the problem is Kyle hates that schedule (he's not so good at the sleeping in part so staying up late all the time is hard), and I am on the teacher schedule, which (while contrary to my nature) is what I have to be on for the moment. (Can't wait 'til summer!) And we've learned that trying to mess with the schedule just seems to cause more seizures, which in turn throws Cyrus onto a new wacky schedule. We like this one in that, he's been seizure low, if not exactly seizure free.

Today though, has been a bit of an emotional day, but really I only have myself to blame.

Cyrus started it by having just an awful day yesterday. We had to wake him up super early for a therapy appointment and this seemed to throw him off completely (See! You can't mess with the schedule!). He had more seizures, and even though none of them seemed severe, he was just so completely out of it all day, which just hasn't happened in the past few weeks. I think the bad days just hit me that much harder when we haven't had one in awhile.

Then this morning he woke up early all by himself demanding food, which he promptly threw up. A huge amount of it too. These events always make me anxious as I know that they will eventually become far more frequent as Cyrus's disorder progresses. So whenever he throws up, I'm always nervous that it's starting to get worse. I especially hate it when it comes out his nose because it makes him totally congested and I have to spend time clearing it out, which he hates! Though I think he prefers being able to breathe.

But I also have to remind myself that kids just throw up sometimes. And Cyrus has always done so a little more often.

Then just when calming down, I made that anxiety far worse by writing a death scene of an epileptic child in one of my unpublished stories. Seriously, why would I do that?! Masochist anyone? But let me tell you it is an awesome scene. Almost beautiful in a morbid sense. Definitely very real and very human, which is my favorite kind of writing. And in general, if the writing is flowing you don't fight it! You let it flow!

After writing this scene, I found myself in need of some research to flesh out some of what came right before in the story, so I went looking for the ADSL personal accounts from parents and starting reading those. These always throws me into a weird mental and emotional funk, but at the same time I find them reassuring as their experience can answer questions about day to day living that doctors can't because this disorder is so rare that they've never had another case.

So rare that I could only find four blogs - three of which are no longer active, and another that doesn't really focus on the child as it was written by the grandparents.

So I decided that I wanted to contribute to this tiny community by sharing our experience. I already have written about it a lot through gofundme and Facebook and I have no reason to believe I will stop. It was just a matter of bringing all of those pieces into one place. And blogger even lets me backdate posts so I can add everything I've written since June. Plus it'll be nice to have a place where I can go back and look at everything as well.

Hence this blog! The Light of My Life title refers to both my husband and son. My wedding vow in 2009 was "You are the light of my life, and I must always look to that light." And when picking out names for our children all of them had a meaning that related to the Sun or to light. In general, pictures of the sun (both photographic and drawn) make me think of Cyrus when I'm not with him.

Hopefully, if you're reading this, it has something to offer you.

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Support Cyrus

Cyrus Lee Brown - A Light In My Life

Cyrus Lee Brown arrived on February 15th, 2015. I know that not all mothers experience that instant connection with their newborn child, but I did. The second Cyrus uttered his first cries, my heart just about melted. I have never been so excited or grateful to meet anyone in my life! 

We chose the name Cyrus because it means Sun as in Sunlight! We just knew Cyrus would be a source of light in our lives. 

When he was four months old, Cyrus began manifesting a rare type of seizure, that are referred to as Infantile Spasms. He was having dozens of these seizures a day. We were lucky enough to be living near Stanford, and Cyrus was taken to Lucille Packard's Children's Hospital. Because this is a gargantuan teaching hospital, they ran every test imaginable from genetic tests, lumbar punctures, blood tests, EEGs, and MRIs, and were able to diagnose him within a month! He has a freakishly rare disorder called Adenylosuccinate Lyase Deficiency (ADSL). By freakishly rare, I mean that there have been less than 100 cases worldwide since 1989 when the disorder was identified. We're like number 10 or something in the United States. Genetically, the disorder is believed to have originated from Belgium. 

ADSL is a metabolic disorder that is caused by having the incorrect genetic recipe for Adenylosuccinate Lyase, which is an enzyme that is used to make a purine nucleotide called Adenosine. Adenosine is used in DNA replication, transcription, and to make cellular energy in the form of Adenosine Triphosphate (ATP). Needless to say, it's important and it will affect him severely both intellectually and physically. This metabolic disorder that is so complicated and so rare, that it is not well understood even by neurologists or metabolic geneticists (honestly, his care team had never heard of it until Cyrus's genetic test came back positive). There are several theories as to what specific mechanisms in his metabolic pathways causes the developmental delays and epilepsy, but the research is far from well defined or certain. And though several experimental treatments have been tried, there's been little in the way of success in treating the underlying metabolic dysfunction. 

His prognosis is unclear as he is presenting on a different timeline than any other documented cases. He has presented with seizures later than those have have the severe version of the disorder, and unfortunately far earlier than those who have the moderate version. We have been warned that he is unlikely to learn to talk or to learn to walk, and that his life expectancy is significantly diminished. 

Initially, I felt incredibly guilty and responsible. And then angry and devastated. But at the end of the day, I really didn't want to spend our time grieving something that has yet to happen. Instead we want to treasure each moment and Cyrus has definitely taught me to slow down and be more present. To let the other stressors and daily irritations roll off my shoulders. And to be joyful and grateful in the the tiniest of moments. He has made me a far better person and is definitely living up to his name.