First there was Hawaii… No, It was Santa Lucia?

So there was this whole “Holiday Season” thing, which made me realize a few things:

I am incredibly blessed, and to find myself going from Honolulu’s 82 degree sandy beaches to the shores of Lake Tahoe all in a two week period? That is truly amazing. To the left is a photo of Mokolii in Kaneohe Bay. We went on a little driving tour to get Lucy to take a nap.

I love my family. I was able to see 4 out of 5 siblings, and their spouses and children. Plus all sorts of parents. We are really all over the place on many topics, but one thread that runs through each of us, no matter which side, is humor. We are a funny bunch. There isn’t a stone face among us. I have laughed and smiled so much lately, and for that I am grateful.

Life really is more relaxing when there is a mai-tai in mommy’s hand.. or daddy’s or both.

Descartes and I really like each other. We enjoyed each other’s company when we were alone and when we were with my family, and I cannot think of a single disagreement we had then entire holiday break. Now this afternoon was a whole ‘nother story. just kiddin’.

I don’t ever need to swim with dolphins ever again. They were cool and all, but after Lucy got bonked in the head (I cannot upload the video clip right now, but I will someday.) I decided that it is sort of like horse back riding for me. I could probably be convinced to do it again, but I will never seek the adventure out on my own (unless I am taking a pack mule into the Grand Canyon, and then, that’s a pack mule). That’s Lucy being cross-eyed pointing to where the dolphin bonked her, but really the dolphin bonked her on the left side of her head just below her temple. By the way that is a really *really* awful sound to hear.. you know the sound of a 500+ pound animal bashing its head into the skull of your youngest child.

Lucy loves all things dolly and girlie, but she will take. you. down. in a wrestling match. She is truly turning out to be the kind of little girl I hoped we’d help grow. As much as she makes me crazy, she is full of spunk and vigor and beauty and compassion. In Hawaii she kept up in the pool and on the beach with her cousins, all older. She glammed it up with sunglasses and sundresses, but had no trouble covering her entire body with sand, rolling about in its warmth. She was a joy to watch. She had a very hard time when all the slumber parties were over.

Jake still really loves off-roading. We went off-roading at Kualoa Ranch and were lucky enough to have an entire Pinzgauer to ourselves. Jake was so happy. Lucy loved it too. The best money we have ever spent in Hawaii. I love hearing Jake laugh. He’s been laughing and smiling so much lately. He won “best grandkid” in Hawaii, due to his complete lack of crying or tantrums, unlike the other munchkins who each had to be reminded at least once that there is “no crying in Hawaii.” He received a lot of praise from my parents and I could tell it made him happy. He was a great kid on the plane both there and back, and of course he loves our drive to Tahoe.

We need to buy a small camera. We borrowed one from Descartes’ daddy, but it busted itself up half way through the Hawaii trip. I may never get the photos off that card.

I realize the more fun we have the less photos we take… or I take at least. I had my camera in my hand the entire time on the off-roading trip so it wouldn’t fly away, that’s why we have so many from that day, but I really had a great time for two weeks, and the thought of taking out and caring for a camera seemed too much a barrier. I was actually being with my family in the present.

We came back from Hawaii, unpacked our shorts and threw in sweaters and long johns and went to Tahoe the next day? the day after?

For New Year’s Eve we somehow convinced Nonie and Bob Bob to watch all four of our children and Jaster, Demanda, Descartes and I went to downtown South Lake at State Line. I cannot remember the last time I laughed that much in a single night. We played Taboo! for a long time and I’m not sure why but it turned my husband into the most hysterically funny super competitive crazy person. I’m sure the cocktails helped. Next year we are going to send the grandparents to the hotel with the kids and stay at home with the hot tub, the kitchen and the Wii. It was a great way to begin a new year, laughing. And while I had a lovely NYE last year with Squid and Seymour, I must say it was great to wake up to room service and working plumbing.
(I spent New Year’s day 2009 cleaning out the pipes in front of my house… so not awesome.)

We drove down to Cabella’s in Reno one day with all of the family in our Adventure van… so cool to have the whole family in one car like that. I sat in “the mommy seat” which means I handed out crackers and juice to all 50 kids. Nonie sat in the last row. She gets carsick. We laughed a lot. Our children took over a 125000 square foot store with no problem. At one point I am fairly certain they gave my sister 100 tokens for the shooting arcade if she would get the three, three year olds out of the ice fishing tent displays.

The weather in Tahoe was beautiful. I love it when we are trying to get kid to take a nap and we can take a little jaunt up to Emerald Bay. That’s Fanette Island in the photo. The only island in Lake Tahoe.. and I get to see it when we are just cruising around. jeesh. I am so lucky.

My many many thanks so Grandpa PJ and Grandma Corky for the lovely trip to Hawaii and to Jaster and Demanda for hosting us in Tahoe.

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.

A is for Apple

Jake ate an apple. Really. All by himself. Not chopped up, not pre-speared on a fork. He ate an apple.  He ate the apple pictured below on the right. 

  

Bite by bite he picked up the apple, took a nibble then set it down on the counter. Then he picked it up again, chose the next bite and took that one too. I started to cry. 

I told him I was really proud of him. Lucy, not really understanding the great accomplishment, but loathe to miss an opportunity to be a part of a good time, ran up and said “Good job. Jake loves apples!” 

Jake has never been able to do this before. Well, if we did let him have his own apple he would eat indiscriminately, core, stem, seeds, whichever. This time I watched him choose the next bite. 

Sorry to be obsessing over this seemingly small task but add it to this little list:

• new skill: Jake can pull the covers over himself as he lies in bed. 
• After grabbing the hair of a little girl on the play structure on Thursday (as she raced by him). I said “Jake! LET GO!” and he unclenched his fist, her shiny hair then slid past his palm and it looked more like the hello he was trying for and less like an attack.
• new skill: After being unbuckled, Jake walks off the bus without assistance and grabs my hand at the door.
• Jake tried to tickle his sister tonight after she tickled him. He touched her stomach, instead of a random grab for whatever part he could find. 
• Jake sat and listened to the entire story “The Giving Tree” when I just read it to him tonight.

It has been a pretty rough month…maybe even six weeks. Colds and migraines and general fussiness, and now, once again it feels like we have some small but significant gains in the aftermath. 

I will need to remind myself the next time I am in those dark hours, that this light feels so very good.

A is for Apple

Jake ate an apple. Really. All by himself. Not chopped up, not pre-speared on a fork. He ate an apple.  He ate the apple pictured below on the right. 

  

Bite by bite he picked up the apple, took a nibble then set it down on the counter. Then he picked it up again, chose the next bite and took that one too. I started to cry. 

I told him I was really proud of him. Lucy, not really understanding the great accomplishment, but loathe to miss an opportunity to be a part of a good time, ran up and said “Good job. Jake loves apples!” 

Jake has never been able to do this before. Well, if we did let him have his own apple he would eat indiscriminately, core, stem, seeds, whichever. This time I watched him choose the next bite. 

Sorry to be obsessing over this seemingly small task but add it to this little list:

• new skill: Jake can pull the covers over himself as he lies in bed. 
• After grabbing the hair of a little girl on the play structure on Thursday (as she raced by him). I said “Jake! LET GO!” and he unclenched his fist, her shiny hair then slid past his palm and it looked more like the hello he was trying for and less like an attack.
• new skill: After being unbuckled, Jake walks off the bus without assistance and grabs my hand at the door.
• Jake tried to tickle his sister tonight after she tickled him. He touched her stomach, instead of a random grab for whatever part he could find. 
• Jake sat and listened to the entire story “The Giving Tree” when I just read it to him tonight.

It has been a pretty rough month…maybe even six weeks. Colds and migraines and general fussiness, and now, once again it feels like we have some small but significant gains in the aftermath. 

I will need to remind myself the next time I am in those dark hours, that this light feels so very good.

Coolness

We had our reading at Book Passage yesterday for Can I Sit With You? (www.canisitwithyou.org).

It was really pretty neat to present our book in the same little nook of Book Passage that hosts celebrities like Anne Lamott, Salman Rushdie, Lewis Black, Carl Hiaasen, Henry Winkler, Barbara Walters, Mario Batali, Brian Copeland, Maria Shriver, Alexander McCall Smith, Leah Garchik, Isabel Allende, John Gray, Amy Tan.. not all of these people are my favorite authors, but they are names most people recognize.. and I stood at the same little podium and talked with Shannon about our book, the impact I hope we are making, and how we managed to do it all for very little money, all the while adding to the coffers of our Special Ed. PTA SEPTAR (www.septar.org)

You know we are doing a second book. We are still accepting submissions until the end of the month. If you have a story that you would like to tell but aren’t sure you can write it yourself I would be happy to ghost write it for you. Just send me an email and I will help. We can even use a pseudonym if you don’t want your name associated with the story but you think it should be told. C’mon write a story send it to ciswysubmissions@gmail.com it will make you feel better to get it off your chest.

Thanks for all of your support.

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.

Apparently I am a Grown Up

So last night as we drove to Tahoe with way too little sleep under my belt, I was trying to find ways to keep my mind active while I navigated the car through the Bay Area and on through Sacramento while Descartes dozed until it was his turn to wind up the mountains.

I decided to go through each major high school dance in my head; Homecoming, Winter Formal, Sadie Hawkins, Prom Spring Fling, anything I could remember. I tried very hard to remember my dress, my shoes, my hair, my corsage, my date, who we went with and where the event was held.

It was pretty funny to recall… Freshman year, Homecoming Dance: Red two piece strapless yarn-dyed tafetta with peplum, dyed-to match very low heels (last time I did that!), long (past my shoulders) blond wavy hair with bangs like this (almost exactly, Renee and I could have been sisters!), corsage two baby red roses with baby’s breath, my date TOM TYLER! I am pretty sure we went with Nikki E. and Jill G and their dates (who I can’t remember). I think we ate at a surf and turf, and someone (not my date) ordered the Phillet Mihg Non (Filet Mignon).

I get through most of the dances and dresses, and nearly all of the dates (except the senior who asked me to prom my freshman year..he was a nice guy, a swimmer I think with beautiful surfer blonde red hair). I figure out halfway through my reminiscing that I went to every major dance, and most of the other ones; perhaps another way to know that I haver always had a nice little life.

Today I received an email from Gloria, my mom. It is a forward from the neighbor family I grew up next to. The older-sister’s daughter was the flower girl in my wedding nearly ten years ago. The pictures attached to the email? They are from my flower girl’s first high school formal. Whoomph. Wow. Okay. I was JUST there wasn’t I? Apparently not.

At least I still have the faculty of recall eh?

So Are The Days of Our Lives

I received a birthday gift from Bridquet that was so thoughtful… so full of thought and effort that it may be up there with the most precious gifts I have ever been given.

On the right-hand side of this blog there is a little note, that has been on there since I started writing… something about the fact that for 15 minutes of each day I think that we are not going to make it… it is all too much, and I am no good at this job, and I am overwhelmed, and my body aches, and Jake is never going to be independent. I am not trying hard enough, and I have nothing more to give to my children and my marriage. I have lost myself. I am failing my special-needs child. I am not using the gifts God has given me. I have no faith.I am tired and there is nothing to serve my family for dinner. My house is a mess. My vocabulary is weak. My hair is thinning and has split ends. I never sing anymore and I am too quick to judge others. I have no patience. I am lost and it is all hopeless.

…and then minute sixteen comes and we are all going to be okay. Really okay. All of the previous moments are nearly erased (save for the aching back)…and we just move forward. We do our best; praying for great things and planning for the realities of our life. I am the strongest woman in the world, and possibly the luckiest.

Well Bridquet bought me a quarter-of-an-hourglass. It is beautiful and looks very much like the photo here. What is even more meaningful are the words she spoke to me..and I am paraphrasing.

For those 15 minutes it is like you are in the hourglass. Trapped and struggling, slipping bit by bit with nothing to grab on to, nothing to stand on. You are stumbling and falling and nearly buried alive. It feels like you will never get the right side up again.

and here is the part that was so kind

You are the sixteenth minute. You land upon the top of those grains of sand and you are grounded and standing tall and everything is under control. You are the sixteenth minute for your family. You are what makes it so it will all be okay again.

So Are The Days of Our Lives

I received a birthday gift from Bridquet that was so thoughtful… so full of thought and effort that it may be up there with the most precious gifts I have ever been given.

On the right-hand side of this blog there is a little note, that has been on there since I started writing… something about the fact that for 15 minutes of each day I think that we are not going to make it… it is all too much, and I am no good at this job, and I am overwhelmed, and my body aches, and Jake is never going to be independent. I am not trying hard enough, and I have nothing more to give to my children and my marriage. I have lost myself. I am failing my special-needs child. I am not using the gifts God has given me. I have no faith.I am tired and there is nothing to serve my family for dinner. My house is a mess. My vocabulary is weak. My hair is thinning and has split ends. I never sing anymore and I am too quick to judge others. I have no patience. I am lost and it is all hopeless.

…and then minute sixteen comes and we are all going to be okay. Really okay. All of the previous moments are nearly erased (save for the aching back)…and we just move forward. We do our best; praying for great things and planning for the realities of our life. I am the strongest woman in the world, and possibly the luckiest.

Well Bridquet bought me a quarter-of-an-hourglass. It is beautiful and looks very much like the photo here. What is even more meaningful are the words she spoke to me..and I am paraphrasing.

For those 15 minutes it is like you are in the hourglass. Trapped and struggling, slipping bit by bit with nothing to grab on to, nothing to stand on. You are stumbling and falling and nearly buried alive. It feels like you will never get the right side up again.

and here is the part that was so kind

You are the sixteenth minute. You land upon the top of those grains of sand and you are grounded and standing tall and everything is under control. You are the sixteenth minute for your family. You are what makes it so it will all be okay again.