Being a parent during the age of the internet is both a blessing and a curse. Any tiny little thing that you are uncertain about you can look up, and discover whether or not the event is worth any anxiety or stress. Of course, you have to wade through the strong judgmental and often completely contradictory opinions on pretty much any topic from sleeping to how to teach and instill your values. And there's also the possibility that you'll learn that everything you're doing is wrong, and you'll just add layers to your feelings of inadequacy or anxiety.
It's definitely not for the faint of heart.
Being a special needs parent of a child with a rare disorder during the age of the internet though, is some kind of a godsend. Through Facebook we have been able to connect with over a dozen (maybe almost up to two dozen now) other families that have the same disorder! And lately, through outreach and research we have made contact with a large influx in the last few months, many of whom are further along on this journey than Cyrus or myself.
I've been learning about charities to fund equipment such as vans or safe beds and gadgets such as neck rings that would help Cyrus be more mobile if only when he's in the water! (We've actually never tried to take him swimming since he's not a fan of baths. But if he's able to move freely he might love it!! I wish it was warmer at the moment so we could go try). We hear about difficulties other families are experiencing, and others chime in about how they addressed those issues when they experienced them, and I feel just a little more prepared for some challenges our future may hold.
But the internet also lets you make friends and contacts in the most random of places.
If you know me personally, you probably know that I spend an inordinate amount of time reading and writing fan fiction. It may be blasphemous to say so, but I've gotten to the point almost where I enjoy the fandom world more than reading actual published novels. One of the reasons for this is that I often get to interact with the authors! I sometimes will leave a comment or a review to an unfinished story, and sometimes the story will change! Or we get to talking about my interpretation of characters with others who are just as obsessed with them as I am! You make a lot of friends, and sometimes you even start to talk about other things outside of fan fiction.
Last spring I started reading this Sailor Moon story (Please note, if you decide to read it that it is rated M, for Mature). Honestly, it's a fantastic piece of writing. This woman, who goes by FloraOne. portrays beautifully real and healthy and messy human relationships. And the sequel is even better! But that's not what this post is about. The point is after reviewing some of her work, she realized I had some physics expertise and she asked me for some help making the science in her story "believable". And I learned that she was a psychologist, and I started asking her for advice in better understanding the mental state of a character after I had tortured him a bit with a traumatic past. And after that, we became friends. She even made me fan art for one of my little tiny stories! We still talked about fan fiction and Sailor Moon more than anything, but personal tidbits would slip in on occasion.At one point, I happened to mention that I was really stressed and excited about our trip to Minnesota. She didn't respond for awhile (life is busy), but when she finally did she mentioned that she hoped the trip had gone well. Being overwhelmed myself, I didn't say much in response. I just sent her the link to my post about our trip, mostly to share our family pictures.
But of course she read the whole post, and apparently explored further to learn about Cyrus and all the rare pieces that make up ADSL. And then she sent me this note telling me that she just happens to currently be taking a neurology/genetics elective at Berlin's Charité, which is apparently Europe's biggest and oldest medicat school. This is part of what she send to me:
"My neurology professor is this really dedicated researcher, and he finds every new input terribly interesting. The course I'm taking there is basically a 101 so we start with the basics, but this of course includes how our DNA works, and what it does for us, and which all is involved. And that's what we did in my evening class last night. On the slides, he always likes to list disorders that ensue from malfunctioning gears in that machinery. Needless to say, Adenylosuccinate Lyase Deficiency wasn't on it, and when I went to him after class and told him about this, he'd never heard of it."
"Anyway, I told him to check it out, and he emailed me this morning, saying he found it most interesting and he will be sure to include it in this particular lecture from now on, at least on that list of rare diseases. So, maybe it will give you a little bit relief to know that from now on there will be at least one power point in Germany that at least mentions the disorder to future medical doctors and researchers."Needless to say, I was completely floored. Or perhaps balling is more like it because this woman who I have never met in person is out there on the other side of the world from me advocating for my son without ever being asked. Someone I only even interacted with at all because we both share an obsession with writing for fun, portraying healthy relationships, and Sailor Moon!
I find myself incredibly grateful that I stumbled onto this story, and incredibly grateful to have made this friend. And I feel inspired to live up to her example by trying to be open to becoming that same advocate for all the people in my life that might need it in perhaps unexpected ways.
Thank you again FloraOne. I don't know how to say it enough.
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| This little guy wants to say thank you too! |
General Update:
If I don't count this last week, November was pretty good to us. We got to visit Cyrus's cousins over Veterans' Day weekend, where we all did get sick. So Cyrus missed a lot of class, but he was surprisingly chipper through most of it! Giggle fits and talkative moments are somehow even more hilarious when he's all hoarse and congested. A friend of mine said he sounded like a wookie!
He's growing so much that he is needing a new pair of shoes, which almost seems silly because he uses them so rarely, that the old pair still almost seem like new! So we donated them to his baby cousin. His wheelchair and stander both needed to be adjusted to accommodate his new height, and I'm feeling just a little pressure to again start working on the complicated hoop multi-jump that is getting aid for a wheelchair accessible van.
And to top it all off, he was completely seizure free from Nov 2nd to Nov 24th. That's twenty-two days!!! That's our longest record in almost two years!!
Sadly, it didn't last, and this week has been rough. Though his cold seemed to be mostly resolved, he has a cough that lingers, which has been causing spitting up episodes and interrupted sleep. Our seizure free streak broke with increasingly awful seizures three days in a row culminating in two status events this week: a six minute and a nine minute seizure. Both of these happened at school with teachers that had never witnessed status events. School nurses were involved, which was a new experience for us. But in both instances, we took him home and he slept it off with four hour naps.
The good news though is that we're back up to one day seizure free! Cyrus is clearly hatching some evil plans to break our 2017 record before the year is up!
