31 October, 2008

All Treats

Jake and Lucy are home today... no school. We may head to the Cal Academy of Sciences
if we can get it together. It's chillier this morning and it's rainy and overcast.. and Californians are bad drivers who cannot figure out how to drive in the rain after all these years, so I am always loathe to get on a highway but this is all beside the point...

Jake said "Trick or Treat".

Jake SAID "TRICK OR TREAT"!


His bus driver told me that he said it on the bus yesterday afternoon. His teacher was talking with all of the kids as they were being pinned down. buckled in.

She asked the kids "Who's going to say Trick or Treat?" and they were answering, and Jake at the front of the bus said "I say trick or treat."
and from the back of the bus his driver, who speaks English as a second language, said "Jake! I heard you say trick or treat." and ran up and hugged him.

She told me all about it when they arrived in front of our house, and I mostly believed her, and wanted to encourage Jake so I asked him if he had said it... and he smiled and giggled!

then
this morning I asked him, when it was just the two of us lounging on my bed, "When we go out to night to get candy, what do you say?"

and he said "trick or treat" and he smiled.

*************************
appropriate language, answering a question, responding to a general query put out to a group, 
timely responses 
what's happening? is he talking more often? will there be more?

hope is such a painful wonderful emotion.

29 October, 2008

Jack Handy by Jennyalice

Tonight I talked for a very long time with my dear friend DB (Descartes did too.. which is impressive because Descartes probably doesn't even know where the phone hangs up in the house he uses it so infrequently). DB is in a place few of us ever thought she would be. She's probably going down the path to being a "divorcee". Phew. Wow. 

So a whole new chapter of life, and so we talked through what it means to be this "new person". Actually we talked a lot about deciding who exactly we are in this life, any life. I am trying to be the same person wherever I am, with the same moral code, a similar disposition; dynamic but stable. Somehow I want to recognize that I am this person now because of all that I have encountered; the fabric of my life makes me who I am but doesn't dictate my future entirely. I know  I am not going to wake up and be someone new, and neither is she, but I can make changes, make choices.

While we were talking she said please just email me some of these things we've been talking about. They don't encompass our entire conversation, nor is it my new mantra, but here are my "Jack Handy" thoughts for the evening

I am trying to be a woman first who has a husband and children. I need to be me first. I need to figure out what it means to walk a mile in my own shoes. If I do not know who I am  I cannot effectively be much to anyone else, not my spouse or my children. 

I spend time with people I respect and admire. I want to cultivate relationships with those people who have attributes which I want to emulate. I do not waste my time with people or in places that do not add to my heart or spirit. I start fresh every morning. I wash my regrets away at night when I wash my face.

I do my best. 

I choose the right thing whenever I possibly can. 

I love.

28 October, 2008

Time Slows Down

Today, twice I double checked my phone for its clock... it seems that I gained extra time in this Peet's Coffee shop. That almost never happens to me. It could be that this is the first true alone time I have had in weeks. 

I worked on the book for a bit. I need to use my bigger screen at home to get the paragraph spacing right, and see the layout.. and try to get the pagination right ( and trimmed so Squid doesn't cil me.) It is exciting to work on it. I know we don't have an agent.. that there's no flashy book tour, but I feel good knowing that the proceeds all go to SEPTAR and there are kids who might read the words on those pages and feel just a little bit better, a little less alone. God willing and the creek don't rise, the book should be available mid-November.

Jake and I went to urgent care yesterday. He does not have a broken meta-tarsal, as was feared. After a few x-rays we discovered he had only chipped a little tiny bit off of a little bitty bone. Given that one quarter of all the bones in the human body are in the feet, it is not surprising that he would break something. We are having the convergence I think of a few things:
  • Jake has profound disabilities. He is unable to effectively communicate when he is in danger or injured. 
  • Jake does have cerebral palsy. We forget this sometimes because he is so physical, and he eats by mouth and he has no tubes or crutches, and mostly does not use a wheelchair. Most of the kids we know with CP, they are more stereotypical. 
  • Jake is an eight year old boy. He loves to climb and jump and explore and race around and feel the dirt between his toes. 
  • Jake likes being in bare feet.
I had not actually prepared for weekly urgent care/hospital visits. I did not break any bones until I was 11 I think. By his age I had chipped a tooth,  and had stitches (once), but I'm pretty sure I didn't break anything until the roller skating incident. They used to have speed skate/a race at least once during each skate night. I was pretty fast, but not that fast, and was especially not in the winner category when I tripped over my own slates and landed on my right wrist. I also broke my left wrist falling off of someone's back in a game of horse (now who the hell was I ever smaller than? Perhaps that's why I fell?), and the third break, on my right arm again was from? I have no idea. I just remember that I had a wrist brace on both arms for three days during a period of time when one was healing and the other had been fractured.

Anywhoooo. I guess I forgot that Jake would get injured from normal playing too. I read a lot. I played some sports and rode my bike, but for the most part, Jake's play life is much more physical than mine ever was. I am trying to find a balance between keeping him safe and keeping him from being bored. 

Jake's bus is coming soon. I must swill my coffee and head back home to pick him up from the bus. It's been a nice little vortex here, full of time, no children,  many business conversations going on around me. I am well caffeinated now, and thus fortified against what this afternoon may bring. Hopefully no injuries. These co-pays are killing me.

26 October, 2008

23 October, 2008

Chit Chat

Sometimes in this little Special Needs community I have become a part of, we joke that the "apple doesn't fall far from the tree." Meaning that it is not always surprising to meet the parents of a special needs kid and discover they are just as odd if not more quirky than their child.

I have noticed lately that little Lucy is a rather chatty little girl. She came out ready to go. At 2 hours old she had her eyes wide open and her mouth poised to speak. She has a LOT to say. She says it well, very well even, for a not yet 2.5 year old in big long sentences sometimes. She is remarkable, and people, friends, find it amusing to note that she "talks almost as much as her mother."

That's the other thing about these quirky kids, and more often their parents... we don't aways get social cues. This was one area that I had always thought myself rather savvy, the social cues part, but I am thinking lately that I have really, really, not heard all of the subtle and not so subtle ways people have been letting me know that I talk too much; too much, too often, over people, through people, dominating conversations and dictating when others speak. This trait I had always put on my assets side, the side with thin ankles and a college education, when it's looking more like this trait falls, apparently much more solidly on the side with thinning hair and my inability to remember people's names. I am ashamed.

I have always filled the space. Ask my sister, my dad. It's a family joke right? Actually I think I AM the family joke, and now with a bunch of people I really admire, I am starting to feel that way too.

How does it happen that something I thought was a skill, something I actually liked about myself, has become something that has gotten away from me and has ultimately turned into a flaw? Does this happen to other people? Are there things you thought you were good at that end up being something everyone else hates about you? Something you never thought of as a problem that once it comes to light makes you toss and turn?

We are loathe to label our children because we are afraid it will define them, limit them, make it so it's hard for people to look past their disability. What if they change or develop past that label? Will anyone notice, or will they look at what was decided about them years before and just prejudge them? What about when I am introduced as someone who talks "more than anyone else on the entire planet"? What chance do I have to learn new tricks there? Or will I also disappoint if I am tired and just don't feel like holding up both ends of the conversation? I used to love, love, sharing something funny that happened in my life, but I am realizing that I am so self conscious lately that I almost found myself unable to speak in front of a crowd the other night when I was on a panel. I've been speaking, or singing, in front of audiences since I was in the third grade. It's something I have done hundreds of times and enjoyed every single time without butterflies, and the last several times? well...

It's good to face your flaws. It's good to have people care enough to point them out to you. It gives you a chance to right them. Better now before I'm 40 so maybe I have a chance at the second half of my life of being a little less ego centric and little less selfish. Maybe I can ask more questions. I can hold my tongue and not share my opinion, because Lord knows I have one on every subject. I have already tried the not calling people thing; I don't need to be that phone call that people dread answering.

Although, and I'll be honest, I can have this sick feeling in my stomach and vow every night that tomorrow I will keep my mouth closed, but in the moment.. I don't know how. I don't know how to keep a story inside. I don't know how to give the short response. I don't understand how to keep the phone on the table when I want to share something. I don't know what it's like to walk past other people in the grocery store or on the street and not say hello, or chat with the checker or the person behind me in line. I've been teaching Lucy that we do not stare. I've been teaching that when we make eye contact with someone we say "Hello" or "Good morning" or "How are you?" I've been teaching her because people are going to be staring at my family a lot over her lifetime and I want her to be armed with words so she can make the situation of having a brother with special needs less awkward.. for herself, for others.

Lately I'm feeling like it's just one more thing I am doing wrong in the parenting department because clearly it's not working out for me to have learned to be a "Chatty Kathy".

20 October, 2008

Clean Not-So-Mini Van, Friends and Art


I cleaned out my car. This means I now have at least 2 Costco-sized, and 3 Trader Joe's bags filled with krap in my kitchen and guest room. That's the bad part. The good part is that I was able to pile friends in my car yesterday and wind our way all over the Bay Area.

Emerald Hills at Ep's house is a peaceful way to start an October morning. There are quail and deer and birds and had we stayed even a few moments longer we would have heard the bees buzzing in her lavender bushes. It is a slice of country just blocks from my own home. It is one of my new favorite places, which makes sense to me as this is now the second woman that I really like who has owned the house.

280 North is always a beautiful drive. The lanes are wide and the road sweeps in gentle curves back and forth... and people drive fast. I love to drive fast. From the back seat I am asked by Captain Blog "Are you a lead foot?" I ease off the pedal as Squid reminds the carload of potential San Bruno area drivers that this particular area is a happy hangout for the Po-lice. I ease our way into a pack of cars who have slowed to 70 and realize that I rarely relax.

The Golden Gate Bridge shed its fog for the morning and a necessary potty break landed us in the Vista Point parking lot with clear visibility all the way back to the San Francisco peninsula. I take a short walk around the parking lot and returnto my seat behind the wheel thinking, "Wow. We sure are lucky aren't we?"

Sebastopol is farther away than I remember, but not so far that my coffee cup still has some warm caffeine when we hit some sort of magical coffee hut/hip people mash-up. I enjoy a Lattacino, which is perfect for me unsweetened with less milk than a latte and more than a cappuccino. There are lots of children with striped tights and layers of clothing.

We head into downtown and unleash ourselves on the farmer's market. DT and I debate whether we need to create a makeshift icepack so we can enjoy tasty cheese later at home. We meander about. I eat a peach the size of my daughter's head and buy award winning honey and a loaf of bread which I share a bit of, but mostly I hold it and nibble on it as if it is a lollipop in my hand.

Do I have this out of order already? probably. It was the Sebastopol Art Trails, and at Squid's invitation we (mostly) follow a schedule of bliss which also includes time for amazing artists, lunch on a patio, a visit to a nursery and because we still had time a new tea house. One of my favorite stops was Patrick Amiot and Brigitte Laurent Their work is fantastic. It is whimsical and interesting and charming and edgy and beautifully painted and I want a sculpture in my front yard. I buy my sister a calendar, and hope that she will know that I wanted to buy her half the art in the place when she opens up the calendar for her birthday (which is today).

The countryside was beautiful, and while Squid is the most perfect navigator, I almost think she let me meander a bit on those winding roads purely because I was enjoying the scenery. The grape vines are all turning and the apple trees...the apple trees! Everywhere and loaded, and dropping their fruit. It would have been a good day to be a drifting horse, munching gravensteins here and Mcintosh there.

In Graton we viited two artists who share a space, and, I believe a life together, Lisa Beerntsen and Tony Spiers They also had a beautiful garden. They have been a part some incredible group art (Art Farm) which has been at Burning Man. It was neat to see the art in the studio, because my current life path does not indicate an adventure to Burning Man is going to happen. Lisa's art was very beautiful. In some of the current pieces she had incorporated vintage fabric. I love mixed media in general, and I love fabric even if I will probably never win any prizes for my sewing skills. I'm certain I will always have a pile of fabric in a box. Perhaps someday it will be vintage and I will make a mixed media art piece when I retire to Sebastopol.

We also visited Helen Caswell, a beautiful woman with a precious husband. (How many times have I said beautiful?) I would love to be the new renters on their expansive property. I wish she could be in my family, and in an eerie sense I feel like she is. My grandmother was an artist. She was many other things professionally, but I think had she been born in a different time or circumstance she could have made her life as an artist, as Helen has. Sifting through her prints I was amazed to see just so many portraits; so many faces she's painted over the years. I can't imagine having the ability to distinguish each face and render each one so accurately. Don't tell Descartes, but I bought two small prints. They are not originals of course, but I will love them as if they are.

Our last art stop of the day was Rik Olson. A charming man who manages to create beautiful and witty art in so many ways. He is one of the few masters of wood engraving left. It is painstaking work, and making color prints takes layers of art. Ep and I discussed the idea of thinking backwards and in steps and decided it will not be my next career. Rik also participated in this really cool benefit thing where they made prints using a steamroller.

After breathing in a little bitmore apple-scented air at the Olson studio we went back to downtown Sebastapol and tried Infusions The tea selection is amazing here.

Hmm funny here I am getting tired writing, just about the same time I got tired in real life.

The end of my story is that I enjoyed a really lovely day with some very lovely people and came home to my son sound asleep, my daughter awake for a potty break and my sweet husband tired, but just happy to see me, and not cranky at all about having watched the kids for more than 12 hours (of nearly all awake time). I got to read Lucy a story then pass out asleep on the couch before Descartes nudged me to go downstairs to bed.

Clean car, good friends, interesting art and a happy family. Now that's a pile of luck.

Love Notes

New Story posted on Can I Sit With You? Love Notes by Tanya Foubert.

One girl's foray into shop class, and the inevitable gender bias that greets her.

16 October, 2008

Turning Corners in a Round House

last night as Jake settles into bed:

He is kicking the bed frame which then bangs against the wall and shudders the house, making it sound like he is thrashing about when really he is criss-crossing his legs, practicing really a new skill of making one side of his body cooperate with the other. His toes cling to the bed post as he creeps them up and down lying on his back looking at the very dimmed light fixture. I crawl in next to him for a moment, because I miss him, this calm him, because I want relationship with my own son who won't can't make eye contact with me. I want to at least feel close to him, and since he isn't flailing about I think I can. So I lay on the twin bed. He is nearly as long as I am, but he is all bones and muscle and joints. Even his frame is hard to hold because he is angular against my motherly roundness. I hug him and he rolls into me, his face next to mine on the pillow.

me: "Jake, I love you so much. I'm so glad you're feeling better."
Jake: "Mmph" said with a smile
me: "Jake I love you. Can you tell mommy 'I love you?' Can you say 'love'?"
Jake: clearly "Love."


He is happy this morning, lots of happy sounds and running up and down the stairs , jumping and smiling at the sight of a fresh cup of milk or more cheerios. Maybe he is back from where ever he goes when he is so upset in his own body. He's back and he may have learned more new skills again. It was hard this time. Physical injuries and a baby sister who felt abandoned. Descartes and I only fought one time, and only for a moment, so we are better at this, but we're still learning.

There's no rulebook for our child, or this life. There's only slowly moving forward, hoping that the next time we come more prepared, with a more fortified army of caretakers, medications and resources. Because no matter how far we've come, no matter that this morning it feels like it is over, I know another episode is coming; my calendar says next week.

15 October, 2008

Fall Break Week One Update

No California Academy of Sciences today.. my great plan to entertain both of my children. Today is "Free Wednesday", and while I think that is just fantastic for everyone else, those kind of crowds do not make navigation easy, so we will skip that.

Jake is feeling a little bit better in terms of episode...I think... He was able to lunch yesterday at a restaurant. Sage met us at the local Indian buffet and he was well behaved and was even following some directions. Jake and I "rolled" around the shopping area from 10:30-2pm waiting for our car to get new run flat tires, then new front and rear brakes... ouch to the wallet. Run fat tires are a great idea, but they cost at least twice as much as most tires and last half as long.

Anywhoo, Jake went into his wheelchair happily... he has a cold so he was a bit lethargic, which after the past however many weeks of spazzing and throwing, I'll admit I was a little bit okay seeing. We went to a discount store where he picked out his costume.. a skeleton. He laughed when I told him it was perfect because he was skin and bones already.

I don't think Lucy is going to be thrilled with Jake's choice of costume. She is prety convinced that she is going to be a penguin, Jake is going to be a puppy, Daddy is going to be a pumpkin and I am going to be a bee. Just ask her. SHe's been saying this for at least a month now. How quirky she is!

Wish us luck we are off to Lucy's swimming lesson. Jake hates it there... lovely.

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Swimming update... Jake did very well at the enclosed noisy swim school that Lucy loves so much. Half way through the lesson my dear Squid came to entertain Jake so I could help the teacher Faith, remind Lucy to use "big arms". Jake even gave Squid a little low five in the car and smiled when she asked whether he was going to come over to her house soon. Yay for friends! Yay for Jake feeling better! Yay for giant coloring book purchased for Lucy at Costco which may keep her entertained for the next 15 minutes!

13 October, 2008

Just Another Monday

Social worker comes in two hours.
Jake has a nasty cold
Lucy got up too early and is so cranky. 
Descartes had an early meeting so he is long gone.


Lucy has just asked for a baby sister.


*****************************

Social worker meeting went well. Looks like it might be possible to get a new "trail-friendly" wheelchair for Jake, which would open up a lot more trails for our family. Wouldn't that be terrific? 

11 October, 2008

Trees and Lopsided Cakes

I tried to have a little normal this morning by baking a cake for my dear friend Squid. It is her birthday tomorrow.. so hop on over and wish her a good one. 

Jake went cuckoo again this morning...just so upset so Descartes packed him into the car as I was frosting the cake with my favorite terribly sweet seven minute frosting. I finished the cake and packed a quick picnic lunch.

Then Lucy and I got dressed and Descartes picked us up and 
off we drove down the road 
towards the coast. Our destination: Portola Redwood State Park. It was a little risky given that Jake was so upset, but  driving on windy roads in the car, a change of venue and trees generally are all things which make Jake happy.
 We chose a path that looked somewhat wheelchair-able.. Ha HA! Half way in we left the chair at the side of the trail and Jake
 walked holding Daddy's hand. He did very well.


We told Jake that if he got tired he could let us know and we would
 just turn around and head back. We walked another 500 yards and he turned Descartes around by the hand and headed back down the trail. He was calm and happy the whole time on the trail. Lucy loved "camping". We chose another trail (which was really a service access road, and therefore paved) and walked another mile or so up and down hills with Jake in his wheelchair. Lucy wanted to keep going down the road, but soon she was walking with her eyes closed she was so tired. We packed it up and headed home. 

Happy Jake played in our backyard, Descartes worked (of course), and I finished up the cake. Lucy slept in the car, and it's a good thing she rested because we went over to Squid's house and Lucy and Mali played like crazy wild creatures, Descartes and I got to talk with grownups (athough Descartes did quite a bit of active parenting) and Jake got to play in the new rock garden that I am fairly certain was 'planted' exclusively for my child. My children are always happy at the Rosenbergs. Note the picture of Lucy here sporting a hairstyle a la Iz and 1/2 bottle of mousse..and face paint. We thought she looked like the joker.

We had a great time, and apparently all of the change was good for Jake who managed to NOT cry at all from 5:30-8:30 today. Sorry Squid we will be dropping Jake off every day at 5:15pm. 

Both children came home and went to bed within 10 minutes of going into their rooms. I just went to check on Jake and he sounds a bit sniffly, but it could be that he played in Squid's backyard for 4 hours in 56 degree weather. 

I am calling it a successful day. 


10 October, 2008

Out on the Town

Descartes has just taken Jake out in the car again. Jake was screaming and crying. Throwing himself around on the kitchen floor. I gave him 1 mg of Atavin at 3:45 as recommended by his psychiatrist. It has done nothing to relieve whatever "this" is. 

Every day 5:30-8:45 Jake screams and cries. Have you heard of sundowning? It is a term most often used in describing symptoms which occur in those afflicted with Alzheimer's. Maybe that's what is going on for Jake. 

I still managed to clean out the toys upstairs and get a flank steak marinated which Descartes grilled when he got home. Had I actually gotten a hold of Descartes at 4:15pm when I tried texting him I would have begged him to come home because Jake was so out of control. Then I made the kids dinner and half way through, Jake started smiling and laughing. Then he played in the back yard happily... and then he lost it again.

I am so tired. Emotionally drained really. and poor Lucy..all potty training has stopped. She is telling me she is a baby. 

The only way things feel sane is to have someone come to help us every day. The fact is we just cannot afford to have that much help. Yes we get respite hours, but the reimbursement rate does not cover what an aide actually costs.  We never have help over the weekend Friday through Sunday we are on our own, because **really** shouldn't we be able to take care of our own children? 

I just want my arm to be healed a little more before we start cutting hours. I know this episode won't last forever, but it better end before it breaks the bank.

09 October, 2008

Upside Down

Jake was a happy kid this morning, and then I found myself typing this entry into my phone in the school parking lot. Windows are rolled up and I can still hear him screaming as he thrashes his way down the hall. 
He started crying two blocks before we even got to school. Jake has always loved school,and now he cries, and cries, and cries...with tears as we near the intersection that dictates that there is no other end point beside school. 
I sent a scathing letter to the district yesterday in regards to Jake's 1:1 aide. She is not a bad person at all. she just isn't cut out to be an aide in a Special Ed. class. or at least not Jake's aide. Not many of us are. I sure as hell don't feel like I have the right skills and energy to do this job on many days.. but I didn't CHOOSE this as a profession. At her young age I am hoping she can find the right career.somewhere else. We should, if all goes well for us, have a new aide when we return from fall break in two weeks.

*******************************
I forgot Jake's bus vest and had to go back to school... and his nose is running clear, so that means it is allergy time again.. Lovely. As if we weren't throwing a whole bunch of drugs in him already this week, let's add Clairitin

********************************
Jake arrived home (early day) happy happy kid. SO happy that I asked him if he wanted to go get ice cream for a date. Even with my recovering arm, I was thinking that he looked so happy it just might work. Sure enough he said "eye-ce creammm" so yeah.. Jake got ice cream. Three scoops of cookies and cream with chocolate sauce and marshmallow topping. And he sat nicely and even looked at the employee who said she was glad to seem him after all these weeks.

*******************************

I still gave Jake an Atavin. I don't yet trust that at 5:30 he will be this happy child, and I cannot have any more bloodshed in this house for at least another week.  

08 October, 2008

Time for Sleep

and I know this because:
  1. my children are both actually sleeping in beds and no one is bleeding.
  2. my husband has gone to bed
  3. my glass of wine is empty
  4. my eyes hurt
and the number one reason I need to go to bed...

I just started thinking about the possibility of training for marathons or better yet triathlons.

ha HA! this friggin LIFE is a more than a triathlon.  

we are on day forever of whatever is going on with Jake. We have been trying to find the right combination of drugs for him. Listening to Sage's advice I am trying to track everything on a spreadsheet to see if there is a "good" combination in this mess somewhere. 

It's been a lot like when Jake was little and had that long episode where he didn't sleep for over a month.. only now he is 8 and big, and it is harder to keep him safe.

He seems to be coming out of it...slowly. 

This morning he said "Mom" and at school yesterday he said "Teacher". 

always looking for those small victories.

07 October, 2008

Yearbook Yourself

Lazy leftover drafts filling in for NaBloPoMo


****************************

Yearbook Yourself... genius time sink. I had so much fun!

It didn't quite work in the first photo because my modern day photo had bangs
me in 1958:



1960 worked a little better


and 1964


and 1966


and 1968


and 1970


and 1972




and 1976



and I'm pretty sure this was me in 1990


and 1992 no no no.. the soft focus touch





Here I am in 1994 love that perm:


And 1996:










05 October, 2008

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.
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