This is my blog and I can complain if I want to- so I’m gonna. Despite venting this to a good friend, I’m still in a scowling grrr mode.
For those who have kids, live by a school, know kids, heard of kids, can recognize a kid in a line-up amongst adults; you may have noticed school starting this week. It did. Yay school.
Our holiday weekend was very low key as Jonathon had difficulties with his epillepsy and his primary care physician said to contact them if he had more frequent seizures. I asked her to define “more”… “I don’t know, just more frequently.” Nice. So his anti-seizure medication failed multiple times in a month and apparently that’s normal? I think not. His on call doctor when he had episodes a month ago was extremely worried and said to note ANY abnormal behaviors, break through seizures etc. adjusted his meds and ordered lab work until he felt he was safe. All I can say about his primary doctor is, “You uneducated bitch.” The same doctor who has NEVER seen him since he started to have seizures less than a year ago. She flakes on appt’s and is rarely in the office. Everything has been done via alternating on calls.
The SAME doctor I TRIED to get rid of post surgery and I asked the receptionist, “Is there another doctor who specializes in Jonathon’s condition” as his current one seems constantly clueless. She told me in a very defensive tone, “I assure you that ALL our doctors are good!” I said, “I’m sure they are… I would just like to know if any specialize in kids with CP or other severe special needs.” she said, “Oh…” changed the subject and I had to go as I was at work.
It feels scary as I’m in a town where I know few people. I’m raising my special needs child alone in a clueless and incompetent medical community and he’s developing new symptoms. It feels SO helpless!
I want to storm into the office, grab their referal sheets and refer us to various neurologists and specialists up at PDX, have a free standing blood draw for measuring his med levels and write a prescription for new medication and a new seating system. Then I want to KICK THEM IN THE SHINS!
That was Monday.
Tuesday was supposed to be his first day of school, however his bus driver never got a hold of me for pickup time and location- so I went to work, had someone watch him and I called transportation. Apparently the bus driver kept calling the wrong number… and it didn’t matter as the doctor’s office kept forgetting to fax to the school Jonathon’s feeding orders. I’m trying to balance work as we’ve been on a skeleton crew all week so it’s been pretty hectic and overwhelming, dealing with his school and trying to find a decent liquid foundation for my complexion.
Wednesday he sails off to school just fine but still the hectic work day remains and I’m dealing with the school nurse and getting his med card faxed over. The first time of course I forgot to sign it, so she sent me a new one as she felt uncomfortable giving him his meds twice during the school day- so I had to figure out a safe way to split his 4 doses a day so that the timing will not harm him. We leave to wait for the bus at 6:30am, he comes home at 3pm… if I give his last dose too early in the evening, then that’s too long of time between his last dose of the night and first one of the morning. Anyway- we got it figure out… I fax it and receive a confirmation e-mail.
When it was about time to leave, I receive another e-mail, “Make sure you fax his med sheet.” I told her… I did and you said, “Thanks”. She doesn’t think that happened but will check in the morning… and does a back and forth of the freaking fax. I straight out tell her, “You know what- I faxed it, you said thank you but there’s a very simple solution- I’ll just take the original and place it in his backpack so you don’t have to say fax again.” I HATE run arounds.
Come Wednesday night I’m dead to the world.
Thursday hits me in the face bright and early. Another hectic work day, but not as bad. After work I’m at heavy traffic intersection and this guy just opens his door and places a huge bag of garbage right on the street. I look at him and the woman the driver and shout, “HEY!!!” Of course there’s cars behind me witnessing and no one cares. Grrrr SCOWL! I mean who does that?!?! So for some reason they opt to try and scare me by following me. Of course I take the freeway home like usual and I’m thinking, “I could be going to Canada for all the know…” They’re being obnoxious and merely smile and wave and pretend I’m calling someone on the phone while looking at their license plate (I don’t have a phone, but the things are so tiny, no one knows I’m faking it). Well the chase is off- so I reverse it. Oddly they get off on my exit and now THEY’RE scared and thinking they’re trying to shake me off when I’m merely going my normal route. I turn onto my my main road and that’s the end of that.
I get home and prep to take Jonathon off the bus and a group of 13 year olds start to approach- making asshole comments about the “short bus”. I look at them like I can’t believe how rude and idiotic I think they are. They at first say sorry… and then I hear them talking to each other with mentally challenged accents making more fun of my son and the kids on the bus. I swear if it wouldn’t send a negative message across- I would have loved to punch them all in the face… but no… I have to be tolerant of the assholes out there of all ages… on a daily basis.
I take him inside and promptly give him his meds before we have to return to my work really fast, we get to the store. Smiling and ignoring all the people who gawk… we get to the check out counter and his chair gets wedged in there requiring someone to help get us unstuck. Smiling, thanking… smiling… ignoring… just wanting to go home and hide.
Jonathon seems to have an attitude though and I’m just wanting the day to be over. He’s being rude and I let him know that his behaviour his hurtful. I cease talking to him as I finish feeding him, give him his last medications of the night, prep him for bed, turn on his television and of course my silence has him wounded. Finally he softens up, is on the verge of tears, he says he’s sorry- hugs me and all is good. He fell asleep before our show came on “Who Wants to be a Superhero”. So I plop down on the sofa, record the show and veg out.
The end of the first hour had me in tears as Stan decided to keep all three for the final hour instead of eliminating one- Awwww. Some how that just grabbed my heart. I must be PMSing.
Then of course I sat on the edge of my seat during the final hour and felt a tad disappointed with who won. I was kind of hoping he’d make them a team. I was also hoping if he didn’t make them a team that another person won.
I’d mention the winner, but should anyone else view the show and they didn’t see the finale yet… I don’t want to spoil it.
Well that’s it. Friday is here and as soon as I went to get coffee, my purse strap broke. A friend on the other side of the states is seeing the doctor for something that might be scary and I’m trying to remain positive that they’re okay… and I’m just hoping this evening is relaxing, nice and the weekend is as well.
Current Mood:
blah
