Just not That Funny

So I can’t remember where I was, perhaps it was the CBS 5 Blogger Mixer? (which was great by the way) and someone told me I was funny. And then they asked, “Is your blog funny?” and as I contemplated a witty answer, my dear friend Squid volunteered

“No. It’s about her life.” And then the conversation moved on.

Yeah. It’s about my life, which lately is just not that funny. I mean I can make most things sort of sound funny…

like this one, ready?

Beware of Safeway meatloaf, it nearly killed me. It was so tough I almost took off my left index finger a few weeks ago and had to go to the local emergency room to get four stitches to staunch the bleeding. The wait wasn’t very long. I asked them to triage me last so I could actually get a nap. As I see it that visit will end up being 40 bucks a stitch and $200 an hour for a bed to nap in.

What really happened?
Jake was so upset, as he has been for weeks and weeks and weeks now that I was hurrying and watching him thrash at the counter with his aide and I stopped looking at what I was cutting and sliced my finger. It bled through a kitchen towel and I still finished making his dinner so I could feel comfortable that I was leaving the aide with as little else to manage as possible. At the hospital I fell asleep on the gurney so hard that they were a little worried about me, as it seems they would leave the room for 20 seconds and I would fall sound asleep before they returned.

and then here’s another good funny story:
My younger brother Gerard came up for the weekend. He arrived just in time on Thursday to go out for drinks with all of my mama friends from SEPTAR, scaring them with his amazing white teeth and strong beach body builder physique. On Friday night we decided to eat dinner at home because Jake was having such a hard time. He yelled for me after he went to check on Jake who had gone to bed early. I ran down the stairs only to find my brother with blood all over his hands and when Jake slid a bit to the side, trying to wriggle away from Gerard, blood all over the floor. Dude.. welcome to my home.

okay I can’t even make that story funny.

After we put Jake to bed he continued to thrash about. I gave him the max on the benzodiazepine that was recently prescribed by the Psychiatrist. Apparently, this stronger and “smoother” drug takes more time to kick in and more time to wear off, than the other one we had used sporadically to control extremely out-of-control, dangerous, thrashing. We kept checking on him, but Gerard was the one who found him covered in blood, coming from an unidentified head wound.

Head wounds bleed a lot, and after carrying Jake upstairs and putting him in his 5 point car seat in the car, which the only place we can truly hold him down without hurting ourselves, we cleaned up the wound and decided not to go to the ER. Staples that would probably get pulled out by Jake would inevitably be harder to deal with than waiting until the swelling in the little know went down and the 1cm would closed up. It wasn’t long before the bleeding stopped, but it was several more hours until we felt comfortable that Jake wasn’t going to bash his head into another wall downstairs, so he sat in the living room with us, belted into his thank-God-we-have-this wheelchair. It was awesome. Jake’s car seat still has Descartes’ shirt over it covered in dried blood.(which Descartes stripped on and held against Jake’s head as soon as he saw the blood.. God I love that man who knows how to react…)

okay so you can see…not that funny.

I also have an injured shoulder from Jake ripping my arm out of the socket (practically) which, while it is healing, and I am going to PT, makes me incapable of doing many household tasks well or at all… and my house was not looking good to begin with. And then I had an IEP for Jake, which led to the need to have another one (those went very well, just took a long time).

And I had a really emotional day after getting Jake into Camp. You would think that it would just make me happy, but it is a really bad process to sign kids up for 1:1 aides. I know I must be first my son’s advocate, but it makes me cry (while driving friends on the highway in my Not-so-mini van at 75mph.. not good)

and did I tell you about the 2 inch nail Jake stepped on last week? I don’t think I did. Went into and back out of his foot. His high pain tolerance meant that he did it while I was 12 feet away from him, and did not know expect for a strange drawing-in of breath that he took loudly. It was an odd enough sound that I watched him for a minute noticed a slight limo and asked Descartes to check out his foot as he passed by. He just scooped Jake up and said we are going to the hospital. I called Sage and she came for Lucy without waiting for me to tell her why I needed last-minute babysitting. The ER was great. They “got” Jake, and didn’t insist on numbing his foot all up with a bunch of needles before we took out the nail. It came out as it had gone in quickly. Jake only cried when they washed his foot, and I am guessing it is only because we held him too still. We were able to spend the entire next day focused on Jake because Squid took Lucy home with her to play with Mali.

I haven’t been laughing a lot lately.

I am okay. Good things have been happening too. I know they have. We decided on the list of contributors for the next Can I Sit With You? book due out in November. Jake continues to say more words at school– “No! Applesauce!” when offered yogurt. Lucy is starting to sleep a little better. My closet is clean. I have amazing friends who jump at the chance to help us. We went to the new California Academy of Sciences which the kids loved.

Those things aren’t funny either, but it is my life.

This is all just one part of my life, which will pass. Hopefully I am in a learning phase right now so that the next part is really really easy, and less physically painful, and funny. Maybe it will be funny.

Is It Friday? Well it Must be Since Jake’s Talking!

I just got a call from Janice, Jake’s amazing teacher. Happy Friday!

This morning on the playground during A-PE (adaptive phys-ed)

Anna: “Jake look, there’s the circle. There’s the square. There’s the triangle.”
Jake: “Triángulo”

for those of you who do not speak Spanish, that’s triangle. What’s even funnier is that Anna was speaking English to Jake but his echolalia was in Spanish…so does that still count or is that spontaneous language?

______________________________________________

and later today

The class went to get ice cream because it is hot today in Deadwood City. When they got back to the classroom, Jake ate all of his ice cream up lickety-split (no surprise there).

And then he ate the rest of Anna’s ice cream too.

Anna: “Jake, your ice cream is all gone.”
Jake: “NO.”

Janice: “Jake, would you like some of my ice cream?”
Jake: beginning calmly and ending with high-pitched happiness, “yeAH!”

a few minutes later…
Anna: “Jake, you should say ‘Thank you’ to Ms. Janice for giving you some of her ice cream.”
Jake: beginning slightly muffled then ending clearly…”Thank YOU!

parenting note: to encourage open communication with Jake I must
a) learn Spanish
and
b) carry ice cream on my person at all time.

Is It Friday? Well it Must be Since Jake’s Talking!

I just got a call from Janice, Jake’s amazing teacher. Happy Friday!

This morning on the playground during A-PE (adaptive phys-ed)

Anna: “Jake look, there’s the circle. There’s the square. There’s the triangle.”
Jake: “Triángulo”

for those of you who do not speak Spanish, that’s triangle. What’s even funnier is that Anna was speaking English to Jake but his echolalia was in Spanish…so does that still count or is that spontaneous language?

______________________________________________

and later today

The class went to get ice cream because it is hot today in Deadwood City. When they got back to the classroom, Jake ate all of his ice cream up lickety-split (no surprise there).

And then he ate the rest of Anna’s ice cream too.

Anna: “Jake, your ice cream is all gone.”
Jake: “NO.”

Janice: “Jake, would you like some of my ice cream?”
Jake: beginning calmly and ending with high-pitched happiness, “yeAH!”

a few minutes later…
Anna: “Jake, you should say ‘Thank you’ to Ms. Janice for giving you some of her ice cream.”
Jake: beginning slightly muffled then ending clearly…”Thank YOU!

parenting note: to encourage open communication with Jake I must
a) learn Spanish
and
b) carry ice cream on my person at all time.

Happy New Year!

Jake’s MRI results came back …. NORMAL!

so that’s good.. very very very good.

There are apparently no abnormalities in his brain.

When he was younger, his first MRI showed that he had delayed myelenation. So I guess now his myelin is all caught up. That actually makes me a little sad. Isn’t that odd? It is a moment of somber realization that, yup, he now has all of the right parts in all of the right places and he didn’t catch up developmentally. That was a possibility I guess. I mean I wasn’t holding my breath or anything, it was just a slice of possibilty.

Squid saw another perspective entirely, which is that it is great news because now we know he doesn’t have the hurdle of delayed myelin. She sees the possibility of more potential or something positive and hopeful. That’s why it’s good to have friends. When all I can see is the bottom of my half empty cup.. someone adds marshmallows.

******************
We have just decided to hire someone to finish the patio and walkway project in the backyard.. not giving up.. we are still going to do the bathroom ourselves, just trying to respect our marriage and the very small amount of time we have. I would rather die with a little debt and stay married to my wonderful husband…than fight to the death about a stooopid backyard.

so if you know a good paver/brick layer type person who wants to give us a deep discount because we are such nice people (HA!)

Aside from the Dragging Foot and the MRI

On Tuesday at school, Janet, Jake’s teacher decided that instead of Pierre waiting for all of the other children to get settled in on the bus, he, for once, would be able to get on first.

Pierre is in a wheelchair. Wheelchairs always go last. Pierre always waits, patiently and with a smile, but Janet decided that maybe the other kids could wait just a couple of times a week so Pierre could be first to load on to the bus.

You cannot load walking kids at the same time the wheelchair bay is open.. it is a four foot drop if someone makes a break for that back door, and besides, the wheelchair responsibilities occupy all of the bus driver’s attention for those few moments.

After explaining to the class that Pierre was going to go first and that they would all wait for their friend, Anna tried to get a head start and put Jake on the bus anyway while Pierre was getting loaded on. She was going to just buckle him in to save some time I suppose.

Anna walked Jake to the door of the bus. He took a step forward, then turned around,

looked Anna in the eyes

and said,

“No. Wait.”

He refused to get on the bus until Pierre was strapped in.

MRI tomorrrow

in denial…
haven’t been posting because I would need to say something about it..
Jake has had at least four MRIs but this time I am worried, so it s different..before I was just working as the Lead Investigator on Jake’s case. I was a researcher…detached. I also thought we would find something that would tell us that he would be “okay”

this time I am worried we will find something that will tell us he’s not

MRI Magically Moved Up!

Next Wednesday. Early. Have decided to hold off on the EEG as it is probably just going to suck so badly that we won’t get any results.

Jake cried with tears from 3-6pm and is now sound asleep at 6:11pm. Lucy has a happy spirit and some bad butt which will hopefull resolve before tomorrow morning.

my computer keeps crashing.

Sage asked me today “Why does it feel like we try so hard and we never, ever get a break?”

I don’t know friend. I just don’t know.

Must de-bug my laptop now.

Why Can’t I get Any Help Around Here?

Just got a call from school.

Jake may have had a seizure..probably it was weird yawn (since he has been awake since 3 am), but they called and told me that he arched his back and his eyes rolled a little bit, so having not seen it myself.. the Doc will get a call.

in other news from school:

Each morning kids in Jake’s class have circle time. They walk to the board, select their name from the field of names and hand it to the teacher. Everyone cheers and says “Yay! You are at school!” or something like that. Jake does it too, and apparently chooses the correct name many times and is generally compliant and follows along and does it independently (his aide, Anna, stays in her seat).

This morning:
“Okay it’s Jake’s turn”
Jake gets up, walks halfway to the board (maybe a foot and a half). He stops and turns back around to his aide and SAYS
“Gubba,waging pho ewe ANNA!”.

the ‘Anna’ was VERY, very clear.

So they talked a bit about how Jake needs to be independent, and while Anna is his 1:1 aide she cannot do everything for him etc.

Jake walks to the board, picks out his name, hands it to teacher Janice.

The class cheered for him.

He turns, walks back to his chair but does not sit down. Instead he stands in front of Anna and says:

“Iba goma AGHHY art Nog Mutton” (no one could decipher this one) in an angry tone, stomped his foot, threw his arms up and down a few times then

sat down quietly.

The kid has a few opinions apparently.

What is the Deal?

Jake had such a hard time yesterday afternoon that his therapist walked us across the playground to go in to therapy..then right back to the car. Jake flailed the entire time. My arms hurt, my knees hurt. I am so saddened by his outbursts.

Is this the all new and improved episode?

And Much Later, after the Jungle party

As it happens sometimes after a public melt down, Descartes and I got into a ridiculous fight much later when we got home from the birthday party yesterday. I think it came from Descartes not realizing that it has been a very, very long week for me, or if he did realize it, he did not appear to be thankful enough. Apparently I wanted him to thank me effusively, possibly give me a raise hahahahah and say out loud many, many, many times what a lucky man he is to have me for a wife and mother to his precious children.

He dropped us off and went to Home Depot to get things for our remodel(s) and while I know he was doing things for our family, and not just for himself, leaving me with both kids again for 2 + hours was just exhausting for me. I think Descartes forgot that I nearly quit my job on Thursday afternoon.

When I used to work in retail I remember several employees that would go on their 10 minutes breaks.. and just…never…come…back…

We need to start having some help on the weekends I think.