Our son has thrown his hat in the ring to be crowned Mayor of Crazytown.
We are unclear exactly what the hell is going on but some beast has taken over his body and our easygoing little boy is now a tyrant. I'm considering a dictator moustache for him. His newest trick is to have little temper tantrums at the slightest provocation, including when he actually gets the thing he was asking for. He issues a constant stream of totally disturbing statements if wants something or doesn't get something or for no apparent reason at all. It goes something like this: "It hurts! It's broken! I lost it! I'm all done! It's all gone!"
Any attempts to find out EXACTLY what is hurt/broken/lost/gone results in a wild, screaming NOOOOOOOO. Then he starts all over again. Sometimes he answers the "what hurts?" with "my shirt" and sort of points to his chest. This of course, has me wanting to run for the phone to call the on-call cardiologist. However, if you ask him again within 2 seconds, he will say something totally benign, like "the table". Which then makes me want to wring his little neck.
We think that has learned that when he says, "it hurts", he gets an awesome response from us. We were on him like white on rice when he first started these shenanigans. Once we realized he wasn't tying it to anything concrete, we tried asking "what hurts?" or saying "I'm sorry it hurts" or "yeah, it hurts" sympathetically with zero improvement/response. We have now tried not responding to his cries of "it hurts". It just kills me every time. I'm 99% sure he's doing this for attention, but the 1% chance that something really is wrong and his poor scrambled brain can't articulate it and we're ignoring it makes me want to stab myself in the eye with something hot and sharp.
I will be buying a copy of "The Boy Who Cried Wolf" for him tomorrow.
He has also been having night sweats on and off for over a month. Like, totally soaking the pillow and his hair. This is what he was doing as a baby in the weeks before he ended up in the ER and then on life support. This is not freaking us out AT ALL. Nope, we go to sleep just fine when we move him from our bed into his own and then try to sleep on the oh-so-familiar damp pillow. We don't think about what came next when that was happening before. Not at all.We have a cardiology visit coming up and will have some checking into what might be causing this. A lot of parents on our Cardiomyopathy listserv report their kids sweating a lot for no apparent reason and we changed his homeopathic remedy around the time this started, so...fingers crossed.
He also has started completely freaking out when we go to attach his feeding tube to his Mic-Key. He shrieks, "It HURTS!" but then if you attach the tube to it and run the food he's fine. This is particularly fun in public as people already are probably thrown by the whole feeding tube thing anyway. I swear, it was Feeding Tube Awareness weekend. Someone at the dog park quipped, "don't you know it's an off leash park" when they saw me walking with the backpack on and his feeding tube attached to Simon. When I answered good-naturedly (this was the 3rd person of the weekend to ask), "oh it's a feeding tube" they looked mortified and then proceeded to ask me a trillion questions in front of Simon including, "What's his prognosis?" I've never cared before but I'm realizing he's getting old enough that it feels weird to have these conversations about him with him sitting right there. I can't wait to teach him how to answer the questions himself. Well, maybe not the prognosis one since it's can be kind of grim. "Um, we dunno but 1/3 of kids die or need transplant and that may be me but we won't know until it happens" is a little disturbing.
His bizarro behavior and even sweating would probably just be brushed off as a developmental stage by parents of a typical kid, but as cardiac parents, we feel like we are always one hairs-breadth distance from disaster. The sooner we identify that the ship has hit rocks, the better chance we have of saving it. This combination of mood change/"it hurts"/night-sweats thing has our PTSD going almost full throttle. We moved his bi-annual cardiology appointment up to June 4th which has us both breathing a little easier. Unless something has shifted for the worse. In which case, we will...freak out and then soldier on. Here's for hoping he's just being an old-fashioned, pain-in-the-booty, 4-year old.
On a good note, we threw a successful fundraiser for the Palliative Care Program at Children's Hospital and Research Center Oakland on May 19th (don't have final count yet, but think we raised between $1500-$2000!). We showed all 4 pieces in The Devotion Project at a gorgeous old movie theater and Tony Osso, the filmmaker came to town all the way from NYC for the event! (He will be releasing the 4th film about our dear friends Anne, Eric and Jonah at the end of this month. You will be able to see it at www.thedevotionproject.org.)
Speaking of the film, Tony has also made 3 bonus pieces from our film (including one out-takes/behind the scenes piece that is NOT fit for delicate ears, thanks to my potty mouth). Here are the links:
- "Listen From the Heart" (the full 10 minute film)
- "Is That a Yes" (our proposal story- 1 min 53 seconds)
- "What Sleeve?! What Tricks?!" (our decision not to pursue transplant- 4 min 20 seconds )
- "Potty Mouth/You Stinker" (the outtakes/behind the scenes- 1 min 35 seconds)
As usual, it's a bit of a mix over here at Chez Fitch-Jenett. More good than bad, which is how we like it.
|Eric, Anne, Jonah, Tony, Simon, Jaime, Laura at the fundraiser|
|Totally love this photo of me with Simon.|
|Tony, Simon, Jaime and Laura|
|This is what happens when you give a banana to a kid who doesn't eat by mouth.|
|Simon, giving a hug to one of the dancers at the Stanford Pow Wow. All he wanted all day was to "hug the dancers".|
|Simon's version of the now-famous Obama photo (with Pop Pop)|