Overdue and rather inadequate

Eventually I’ll learn to journal regularly again. One part busy, one part embarrassed (for not writing enough), one part forget and one part lazy.

The last month has been a ridiculous amount of medical crap, even for our family. When you live with any chronic illness or disability, medical crap and drama is par for the course and you come to expect that it’ll be a part of your life forevermore so you develop a tolerance for it… but even that tolerance was being pushed by the end of this. Not so much because of the amount but just the stress levels in general.

Xan has been experiencing infrequent migraines since he was a preschooler, and we’ve taken him in to the doctor, and been referred to specialists for tests, quite a few times in the last years. We did the whole dietary thing, we did the allergy thing, we did the celiac thing, we even got referred for CF testing at one point. Nothing ever gave us any real answers as to why he’d get persistent and very severe headaches and stomach-aches. Some readers suggested abdominal migraines as an explanation for the mysterious stomach-aches going on at the same time… and ended up being spot on. I’d never even heard the term before, nor would I have known to ask about it. This is one of the many reasons why blogging and having online community support can be an amazing thing: you can tap into a knowledge base that is far bigger than your own, and sometimes you can get hints or ideas that never would have occurred to you otherwise and end up making a big difference. And now we finally have a real answer for his stomach problems. And while, no, it doesn’t give us any magic potion to make it all better… it is a huge relief knowing where it’s coming from, that it’s not something really serious, and that we can start various treatments in attempt to prevent or lesson the impact.

He had his worst episode ever about a month ago: it started as a little headache and quickly grew. We threw everything we could at it (and him being a child that meant little more than tylenol or ibuprofen) and it just kept going. He ended up staying home from school for several days while the headache pain went up and down until we ended up taking him to the emergency room. The worst day by far was day 3, while we were still convinced he had contracted some sort of flu and this headache business was merely a symptom of it. He was unable to even get out of bed for eight hours, and for Xan that’s a major deal. Getting him down for dinner took two people, and after a few bites he started crying. When pressed, he explained, “I’m so hungry, but it hurts my head to chew”. We took him in after that.
… and just like magic, his days-long migraine disappeared after two hours in the E.R. I saw it coming (or leaving, as it were), but I pressed on in hopes of having tests done or merely having him seen by someone after all this horrible pain. But alas, all we got was a pat on the head and the invaluable advice of, “give him a tylenol”, after all the stress. Thanks a lot, asshole doctor, that was super fucking helpful.

After that failure I pushed our doctor for a referral and he saw a paediatric neurologist in very short order. Part of that may have had to do with the fact that our family doctor had not seen a case of childhood migraines, “in 35 years”. Wonderful. As if I needed more reason to think of you as an old fogey.
The neurologist was much more helpful, and after a half hour of exams and questions, she quickly gave him the “official” diagnosis of childhood migraines. With abdominal migraines to boot. From there we were given a long sheet suggesting of various trials of meds and vitamin supplements to help control the frequency and intensity of the migraines, and an order to come back in six months to see how it all goes. We’ve already started him on some, but it’s hard to tell if it’s working or not because his attacks are reactively infrequent (at least by my perception). The best we can do is continue to document and try and see if any of the suggestions help the next time he’s actually hit hard with one.

Coincidentally, I was also in the E.R twice with the most horrific head pain I’ve ever experienced. It did not feel like a migraine headache; it felt like piercing, horrible icey pressurey pain. Never in my entire life have I felt something like that. It woke me up early one morning and was so intense that I couldn’t stand up or walk properly, and ended up vomiting throughout the day from the pain. Eventually it got to the point where I couldn’t keep water down, was horribly disoriented and could not stop crying. I took a massive dose of pain medication and it did absolutely nothing. I was becoming very afraid.
Curtis took me to the emergency room in the early evening and the staff and doctor who treated me were all amazing and kind. They were low on room and so had to put me on a bed off to the side of a hallway, but when I was first admitted and they realized how bad the pain was (by that point I couldn’t open my eyes) I was moved to a dark, quiet area, given ice water and a cool cloth, and was treated really promptly.
In the end they hung 6-7 bags that included anti-nauseants, anti-inflammatories, tons and tons and tons of fluid (I was very dehydrated) and a massive dose of antibiotics. After a metric fuckton of tests the doctor surmised that since I had just recovered from an extremely bad autoimmune flare-up, my kidney function had likely been compromised (leading to extreme dehydration, as well as other issues), which is what led to the head pain. He said I was likely developing the infection before, but the flare-up just pushed it over the edge and completely fucked my kidneys. After a few hours I was sent home with a script for antibiotics, and the doctor made it very clear that I should return immediately if the head pain comes back and not to fuck around.

The next two mornings the same pain woke me up again. Just as bad. Just as severe. No meds would even touch it… and then it would spontaneously go away on it’s own about 5 hours later. I was also having severe, persisting kidney pain that was only getting worse as the days (and antibiotics) went on. Curtis was working late on those days, and because of the huge stressful hassle that is trying to find childcare for all three of my children, I put off going back to the ER in hopes that this was just some sort of lingering effect that would diminish over time.
It didn’t. It just kept getting worse. By day 3 the kidney pain was so bad I could barely walk around, and called my dad to ask if he could take me to the ER. I texted Curtis and he almost immediately found a way out of work, and arranged to have the kids watched by our friends. He ended up meeting me at the hospital when I was dropped off by my dad’s partner.

This hospital visit did not go as smoothly as the previous one, to the say the least.

It took almost seven hours to be seen, and the doctor who was on duty was a complete fucking asshole. After seven hours of no conversation or my questions being answered, I ended up approaching the desk and asked if they knew how much longer it would take to talk to the doctor, or if my test results had come back showing anything (they’d taken blood/urine when I first arrived). I explained that I was having trouble holding up due to my AS, adding that I’d been ordered to return ASAP if the symptoms of the original problem returned (and made to believe this was serious business). The doctor happened to be standing nearby and without warning absolutely lost her shit at me, snapping, “This is an emergency room and you are not experiencing an emergency”. She accused me of drug-seeking (not once did I request or even mention pain medication – I just wanted answers) before finally exclaiming that she was done with me and my remaining choices were, “You can either wait until midnight to see the next doctor or you can get out because as far as I’m concerned, you’re discharged!” then she threw whatever she was holding at a desk and stalked off.

I was so emotionally and physically drained by that point that I was in tears. I was exhausted from the non-stop pain and the previous flare-up, my body was in horrible spasm from missing my afternoon dose for the purpose of getting help, and all I wanted to do was go home. I felt confused, and angry, and humiliated.
All the stress and fear from the last few days just spilled out inside of me, and when I returned to the little room with Curtis waiting I was openly sobbing. He’d not witnessed the exchange but heard that something had happened (she had been rather loud), and was furious. I begged him to just leave with me right then and not push the issue, but he was on a mission by that point. I went out and waited by the front entrance for my father to pick us up while Curtis approached the desk and requested to talk to a supervisor or some equivalent. When he explained what had happened, the woman seemed unsurprised (in an acceptable way – as in, they’d had problems with this particular doctor before), and told him to please make an official complaint. She gave him in the information, apologized profusely, and said that if we could stand to wait another hour or two the doctor who attended me the first time who had been so lovely would be coming in. I was so beyond done, physically and otherwise, that there was no way we could wait that long; my body couldn’t take it. Curtis thanked her for the information, and quietly added, “She needs to be somewhere she can be cared for, and that place is no longer the hospital,” and left.

I don’t need his protection, but sometimes it feels nice to get it, and despite my initially not wanting to stir up any more shit I felt relieved knowing he’d stood up for me when I was unable to do it for myself.

The head pain didn’t return the following morning, but my kidneys continued to hurt for almost two weeks – long past the end of the antibiotic regime. I was so run down from the ER experiences that there was no way in hell I wanted to try doing it all over again, so I just took the pain and tried to do as little as possible in hopes it would eventually stop on its own.
I try to never ever go to the ER for pain related shit and this is exactly why. When I got home after the second hospital visit our friends James and Adena were watching the kids. James has CF and had his second double-lung transplant not that long ago, and I know he and Adena understand better than anyone how fucked up and nasty the system often treats chronic illness and pain patients. And with that in mind, it was nice to cry on the shoulder of friends who really get it.

Z is finally beginning to outgrow her escape attempts, thank the fucking lord, because I was running short on the means to effectively baby proof the house. She hasn’t tried to get outside or get into something major in about a month and before that her incidents of major mischief was becoming less frequent.
She has been the most difficult and insane toddler I have raised, bar none. We joked for years that baby Tempest was incredibly cunning and the most mischievous toddler but seriously Z has taken the top spot and then run with it. I’ve had more heart stopping moments with her than with the other two combined. God forbid I cook, clean or poop because she has her timing down well enough to create horrible disasters inside a minute and for a while there it seemed like the only solution was to leash her to my leg 24/7.

While the escape attempts have almost disappeared she’s still causing trouble in other ways. For example, she was almost completely potty learned and then spontaneously gave it up about two weeks later and now we’re starting from scratch all over again. It is immensely frustrating to have success so close that you not only touched it, but were able to actually relish in it for a little bit. I am so done with diapers. Right now her favourite trick is to take off her diaper and then poop on the floor. This will almost always be followed by her taking a hand and saying, “I need to go poop on the potty”, which results in an excited – and ultimately unsuccessful – visit to the bathroom, and it’s only after you’ve spent a good three and a half minutes cheerleading her elusive bowel movements that she’ll finally admit that she didn’t have to go at all and really meant to say, “I did need to go five minutes ago but as you’ll see by the exceptionally large pile of shit next to the couch, this is no longer a problem for me”.

She finds it all very amusing and apparently quite a jolly good time as she does this at least once every couple of days, and sometimes multiple times in a single day. Goddamn toddlers.

At least she’s cute. My mother used to say “cute is a survival mechanism” and she’s not wrong.

I’ve noticed lately that Z almost exclusively plays with Xan, rather than Tempest. A big part of this is that Tempest is reaching an age where “playing” that way is just not cool and therefore she won’t do it, and another big one is that she simply doesn’t understand Z’s methods of play. Xan easily falls into pretend-style playing, and legitimately enjoys acting out silly scenarios and laughing as Z fumbles her way through them, whereas Tempest has never been able to get into that. She just… doesn’t get it. Even when she was very small I very rarely saw her play pretend, and the times she did seemed off somehow. It was one of the first signs we saw as ‘off’, and understood as part of autism. It’s hard to tell if her lack of play with Zephyra that’s a personality thing or an autism thing, but either way it separates her from Z in a very big way. As a result, Z has bonded a lot with Xan over the last few months and very little with Tempest. To be honest, I don’t think I’ve seen them “play” together unless Tempest is actively trying to teach her something, which does not happen often at this point. It doesn’t seem to bother any of them, so I don’t push it, but the question lingers at the back of my mind every day and it makes me wonder if I should. Should I force Tempest to play more with Z so that they become closer… or should I do my utmost to respect that Tempest is fundamentally very different and they may not ever be close as sisters? I am watching the foundation of their entire lives unfold before me, right here in the living room, and I can’t figure out which is the better option: forcing, or allowing.
Tempest is not an emotional being: in her 10 years, I have heard her say, “I love you” a handful of times… and all were prompted by us. As she got older, and learned to speak on her own volition instead of in response to prompts from her parents, she never said it again. Last week as she completed her nightly ritual of “hug and kiss” before bed, I said “I love you” the way I do every night and she responded with her usual silence… except this time I added, “when your family says, ‘i love you’, the polite thing to do is to say, ‘i love you too’,” and she asked, “Why?”. I don’t know if it’s good or bad that I’m not at all bothered by this. Friends have commented, “that must be hard,” but it hasn’t been – this is just the way she is, and that’s okay with me; she shows love and attachment in her own ways, and I have learned to see and appreciate that.

But then we get into situations like this, like with her sister, and I start to question myself and wonder if I should be forcing her into actions she is not naturally comfortable with for the benefit of Z’s future. Will they grow to resent me if I force them together? Will Z resent me if I stand by and do nothing to “encourage” their relationship? Will they still be okay in 18 years if they were never even remotely close as kids? I don’t want any of my kids to have the kind of relationship my brother and I did, or do – though no piece of that has a bit to do with my mother – but I am plagued by the thought that they will as a result of my inaction.
It’s impossibly hard to be a parent witnessing a permanent relationship growing that has the potential to be negative, and wonder what your role should be. If it should be at all. Things like this make you question your ability to parent entirely. Sometimes I don’t even think I’m cut out for this.

Quotes of the Day:
Z came and begged for a nurse, and I asked her to wait a bit, and she had a mini tantrum and for some reason went upstairs and complained to Xan about it. His room is right over the livingroom, so I can hear them talking. Xan consoles her for a moment, and then I hear him start coaching her :
“No no, you have to ask quietly. And make sure you say please. Look cute. Yeah, like that. Now go, try that!”
She comes back down and clasps her hands together, and says very quietly, “Please. Nursie. Please… mama, please.”
“I hear you asking nicely, but you’ll have to wait just a bit.”
She runs back upstairs. “Xan, mommy say no!”
“Were you cute?”
“I cute!”
“Hmm. I don’t know, you may have to wait. Want me to read to you?”
“… okay”.

While I’m reading to Xan, Z comes up onto the top bunk and asks very sternly, “I nursie?”
“Nope, you’ll have to wait.”
“I NURSIE!” she yells.
“No, you wait!” I jokingly call back.
“No nursie you!”
“… please?

Z comes up and gooses Xan while they were playing.
“I got your bum!” she says.
Xan replies with the utmost seriousness, “No way, you can’t touch my bum. My bum is for display only“.

When taking a late night walk with the kids, Xan tried to leave the house with only a rain slicker, but with significant urging he begrudgingly agreed to put on a thicker winter coat. Two minutes out and he’s shivering, complaining about the cold and begging me to zip it up.
I got down on a knee to do up his coat and said, “See? Mom did have a point about the cold after all.”
After a pause he sighs deeply, reaches forward and pats my head twice and then says, completely deadpan, “Yes. You were right. Is that better?”


Links of the Day:
Baby dies while sleeping in car seat – Car seats are for cars; not for sleeping, not for carrying, not for moving about. They’re designed for short term use by babies, just for transport… babies sleeping/kept in seats suffer oxygenation problems that can lead to really serious problems, and death. The baby in this story was 15 months – not a newborn. Please, please leave carseats in cars. If you can babywear, invest in a safe and comfortable carrier to transfer baby to during trips to help them back to sleep safely.
Reports on breastfeeding sibling study are vastly overstated – If you haven’t heard about the sibling pairs study that is being touted as proof that breastfeeding has no long term benefits, be thankful you live under a rock because that shit has been ridiculous. It’s flawed as all hell, to say the least, and if you’re looking for some information about why, check out this fantastic take-down.
Did US researchers really find breastfeeding to be ineffective or harmful? – More of the above.
Measure your pupillary distance – Ever wanted to buy cheap-ass glasses online but don’t know your pupil distance without making an appointment with a specialist? This website just needs a webcam, a well-lit room and a card with a mag strip. Follow it up with a trip to Zenni.com and you can save hundreds of dollars on glasses. We bought a replacement pair for Curtis for about $40 (including shipping) – by comparison, the absolute cheapest pair we could find for him locally that didn’t look like ass would cost us almost $200.
Meet the woman who straight-up rocks a beard – If you’re in need of a dose of body positivity today, look no further than this absolutely fantastic young woman. Her confidence and level of self-love are fantastic, and it’s hard not to feel inspired after reading this.
I am alive – While pondering the missing Malaysian flight, I started reading about similar incidents and came upon the story of the survivors from the crash of Uruguayan Air Force Flight 571. It’s the event that inspired the early 90’s movie, “Alive” (which I have never seen) as well as a documentary and two books. The documentary is what I have linked. It is the most incredible tale of survival I have ever heard of. The story is terrifying, chilling, and yet completely awe-inspiring. The gist is that in 1972 a small charter plane went off course and crashed deep in the Andes mountains with 45 on board: a rugby team and their families. They were over 11’000 feet up, trapped in a valley surrounded on all sides by sheer peaks. There were 27 survivors. 8 more died in a sudden avalanche and 3 more over the weeks. By day 10 they made the choice to eat the bodies of their friends and loved ones for survival. They were trapped for 72 days. Seventy-two fucking days. In the end, three of the men decided to scale one of the 15k foot peaks in hopes of finding help. They trekked without gear, shelter, tools or proper clothing for 10 days and crossed over 40 miles of the Andes before being sighted by a Chilean rancher. 16 made it home alive by the end of the ordeal. The documentary is absolutely terrifying, and yet completely inspiring. If you have an hour and a half, watch it.



Leave a Reply