In the Making

myGirl at about 6 months

She's seven. Seven. and I can't imagine that she is already seven and that she is only seven because she is both my little baby, in a pink onsie covered in a Sock Monkey print, and she is this spunky, punky, vivacious, perfectly wonderful being, who is wholly a person apart from me.

Her sense of humor is sharp, but not mean-spirited, and so often perfectly timed that I wonder if I might hear the roar of a live, studio-audience behind me. Sometimes I can't even laugh because I am so surprised by her wit, and so proud that she is carrying on the family desire to make others smile. And, honestly, I love that I can tease her, because that is my natural state, and it makes parenting her easier.

She has learned to find humor when she could be very sad, or irritated, or exasperated. When her older brother walks fully-clothed, and shoed through her freshly filled blow-up pool, tracking mud and dribbling rocks, she admonishes her brother for getting his good shoes wet, not for ruining her swim party. When it was discovered that 19 of 20 fish in her tank had died overnight (another post entirely), she looked like she was going to cry, then pointed to the last fish, and said in a low voice, "Mur-dur-er. Murderer!" She stomps her feet when she doesn't get what she wants, and begins to whine with a tone that tears at my eardrums, then stops, centers herself, and drawing her hand from face to chest calls, "Aaaand SCENE!" and thanks her audience.

She loves dolls, well, as of right now she loves dolls, and while I do not understand it, because it is so unlike how I played as a child, I am trying to appreciate it because I know it will go away, just as her round baby face has already begun to turn oval. Her taste in entertainment has her singing songs beyond her years with lyrics that her precious head automatically makes into child-like phrases, and she devours new trends, encouraging our car filled with little girls on the way to wherever, crying out, "Tonight is the night, we’ll fight 'til it’s over..." and lifting up her arms they all sing, "So we put our hands up like the ceiling can’t hold us. Like the ceiling can’t hold us!"

She is grateful most of the time, polite when she is away from us. She cares enough to be dressed appropriately for the event, but can let it go and run out the door without wondering what people will think. She has a sense of fashion that exudes confidence, she wears camo and pink like she invented them both, and was undaunted by a cast she wore for six weeks this year.

She's sensitive, and is deeply moved by precious babies, perceived oppression, and the idea of loss; her pain in having her best friend move to the other side of the planet was palpable to anyone who witnessed her talking about it.

She meows sometimes, a little bit like how a friend of mine says "woof," which worries me some, but only because I am not fond of cats. She loves to cuddle up each morning, and still finds it amusing to hide in our bed, and surprise her dad waiting under the covers if she can sneak in while he leaves the room. She loves the drama of "the big reveal" of almost anything, and applauds others' efforts even when she wanted something else to happen.

She understands that where we put our time and our money shapes who we are, knows the names of the states in alphabetical order, and, as much as I can't stand it, still requests to watch America's Funniest Home Videos. Her thirst for media is rarely quenched, and her brain has trouble shutting off at night. Somehow she can still be soothed by my voice, singing softly in the dark; it humbles me.

She likes to know what information is fact, and which is opinion before deciding anything, which sometimes wears her out. and she carries too much sometimes, chasing issues that are not problems for her to solve. But she is made of the best parts of us, and in her unbroken, seamless state, she remains filled with a persevering light.

 ***

Happy birthday babyGirl. You are my best favorite.

Resistance and Resilience

Four years ago we were sitting in a hospital room. That's Jake on the floor trying to feel the cool of the hospital floor, and that's Lucy, nursing, and that's me, tired, scared, and trying to smile, knowing that these were the baby photos Lucy would see someday.

Lucy was 4 weeks old and Jake had  Methicillin-resistant Staphylococcus aureus (MRSA).

The only isolation room they could find for us was at a hospital in a town 25 minutes away. We didn't know any of the doctors at this hospital, though the doctor who cared for Jake was in residency with our regular doctor. We had never been to this hospital before we checked in, and were immediately escorted to a room across from the nurses station. They placed us in a wing where pediatric patients who needed constant monitoring, but were not ICU, were housed. Because we were so contagious, and they assumed we all were carriers, we were not allowed out of our room except to leave the hospital directly, without stopping. We couldn't even get our own coffee from the room across the hall. We were not allowed in the cafeteria. People gowned and masked before they entered our room, speaking to us dressed as yellow papery ghosts, and I had a newborn. Jake had a wound that grew so fast, and had such a hard time going away that they drew a line around it in black permanent marker so we would know how we were progressing or not. Descartes slept on a tiny little fold out cushion chair for three, or was it four, nights in a row, while I drove back to our house each night with our tiny baby girl. It was horrible, and because of the wound placement, we were all fearful that it would get into his hip bone.

I have never been someone who is scared of people in the medical profession. I am not afraid of blood, or guts or gore. It takes a lot to make me queasy, and I always want to know why. My whole life I have wanted to know why, and figure out a way to fix things. I have tremendous respect for the medical profession, but I have figured out that I actually am as smart as some of those people, I just chose a different path, and this hubris served me well when Jake was covered in horrible wounds that would not heal. I was also so very lucky to have a doctor in the practice who knows us, outside of the office as well, and she knows I am not a sissy mom who brings my child in for the sniffles. When I took Jake to her that day, on only day three of the second round of heavy duty antibiotics, she trusted me when I told her it was getting worse, not better, and that the drugs were not working. I had been watching those red patches, counting them, and I knew. She trusted me, and she made the calls and found us a bed a 6pm on a Friday. Under normal circumstances she is a great doctor, in a crisis, she is an amazing doctor.. (and I will have to ask if I can link to her before I actually do. Can you please ask her if I can M.D.? I know you read this;) )

After we checked in, got Jake settled into some regulation jammies made of some crazy non-flammable material, a doctor came in to see us. She was kind, and greeted us with the proper amount of decorum and an air that let us know she was in charge, because of course she was in charge. Then she told me that Jake would need to have seriously heavy-duty, one-step-down from military grade antibiotics. Fine. Of course. And then she said he would need to have an I.V. for 40 minutes every two and a half hours.

Oh dear.

This post-partum mommy went nuts. I was holding Lucy, possibly nursing her, and I know I raised my voice. I'm sure of it... and I said something like,

"ARE YOU KIDDING ME? HAVE YOU EVER HAD A PATIENT WITH AUTISM IN YOUR HISTORY IN THE MEDICAL FIELD?"

and I continued...

"WE NEED TO KNOCK THIS KID OUT TO BRUSH HIS TEETH, AND YOU THINK YOU ARE GOING TO GET HIM TO SIT STILL WITH A NEEDLE IN HIS ARM FOR 45 MINUTES EVERY 2 1/2 HOURS?"

She looked a little bit, uhm, surprised, and hurt, and stunned, and miffed.

I said, "YOU ARE GOING TO NEED TO GET CREATIVE HERE. GO FIGURE IT OUT!"

and she walked out of the room.

My precious husband said, in the nicest way, and with only a little bit of fear that I might have a knife and be okay with using it... "Honey, that's the person who is going to be responsible for helping our son get better, perhaps you could go a little easier on her?"

A few, not many, but a few minutes passed, and the same doctor came back in...with a book in her hand, open to a page three quarters of the way in.

"What about a shot of the same drug every hour and half? A muscular injection. And we could put it closer to the site of the wound?"

And I clapped my hands for her and gave her every amount of praise I could muster. WHOO HOOO!

Of course I then had to convince the nurse, and the next doctor, when our first very smart, creative doctor had to leave, that we should only put the shots into one side of his body, the side with the big wounds. They said it would be too painful, and I while I understood that, I had thought this one through. I explained that my son only had one side he could still rest on, only one side that did not have a 2+ inch nasty, open wound, and if they took that away he would never sleep. The doctor rolled his eyes at me...literally rolled his eyes, and the nurse, he said, "Wow, I've never thought of that. So the patient can actually still rest comfortably, at least on one side."

I nursed my baby and rocked her to sleep.

It took 3 1/2 more days for the last wound to go down to a level that we could leave the hospital. We watched that last wound slowly shrink from its black outline, reminding me of an atoll on a map. When it looked like we were headed towards health, they let us go home, but his treatment was not over for another week or so. We drove him back to the doctor for a few days after that, twice a day, so he could get additional injections. I think he was on antibiotics for nearly three months by the time he was finally healed.

He has only a tiny scar on one hip, so small now most people would never notice it, but whenever I see it I remember how scary it was, how deeply infected my poor boy was.

*********

This part is bragging: We have never had the MRSA come back. This is pretty rare, because it is really hard to shake. We put a bit of bleach into Jake's bath for nearly two years. We still do not reuse towels (on the kids). We have hospital hand pumps with anti-bacterial at the back door, and in several other places around the house. We swabbed our noses with a special ointment for months. We use gloves for diaper changes. We hot, *hot* dry our sheets, blankets and towels.

Descartes' Birthday Present to Me

I forgot to post this earlier. My birthday is in February, but it took a long time to get framed.. so very kind of him, it's the cover of the book Can I Sit With You? Descartes is always good at thoughtful gifts... for Mother's day today he managed to find good candy corns (in May!) a kumquat tree (one of my favorite fruits), and we went together on a family adventure up and down the Peninsula searching for and eventually buying backyard patio furniture.

That's blood on Jake's face. He started bleeding while we were in Ikea. He wasn't upset, just sort of cracking up (which is, now that I think about it, a way that he deals with pain ugh.) We sort of made a hurry up decision and got out of the gigantor store instead of fighting our way back up to meatballs in the cafe which we had planned on (Lucy was singing a meatball song.. poor girl.)

Instead we drove the kids through McDonald's. Lucy and Jake were pleased to see chocolate shakes, and Jake apparently has entered a new level of eating.. he now eats like a man. A man. Crickey he ate a 5 piece chicken select meal with a bloody mouth. Lucy then proceeded to pour nearly an entire shake down the front/side of her. We heard a large "Uh Oh!" as we had started to drive away.
It's a little blurry, but here's the photo...

Little Lucy, Big Bed

We went to IKEA today. CA-RAY-ZEEEEEEEEEEEE!

We ate lunch there, which generally works very well for us.. but I forgot that on Saturdays there's "jazz" band in the foyer (which goes echoing up into the second floor glass ceiling area bouncing around and around!) oh yeah then there was a screaming little girl, AND a kid who opened the emergency exit door.. 'Cause there is nothing like all of those noises to make for a relaxing lunch.

Anywhooo, we survived and Little Lucy picked out her own bed. We skipped the toddler bed and went straight to a twin bed. Yikes! We actually went to a loft bed. It's white and pine and looks like an IKEA bed but ya' know what she LOVES it! We put it together in less than 2 hours! And tonight when we put Lucy in bed she just crawled on up to the pillow, put her little head down and waited for us to cover her up. She has not resurfaced yet. She was so happy.

I, on the other hand, had tears slipping down my face as we undid the crib.. ooops they are at the corners of my eyes again! My little baby...grown up already?!

On the way to IKEA Descartes and I had a conversation about storing the crib. Storing the crib?
Huh? Why do we need to store the crib if we aren't having any more kids?

Hmmmm? Hmmmmm? I wonder?

Welcome to My World

 

Lucy will be 18 months tomorrow. We've had her that long already. She still seems so new.. and yet I feel like I've known her my whole life.

Lucy noticed the PEZ dispenser display at the local stationers... she spent quite a bit of time looking at all of them.

I asked her to choose two, one for Jake and one for Lucy. This photo shows what she picked.
Jake was Mr. Incredible for Halloween.
pretty cool eh?

Being Present

We went up to SF today to see my family for the day before they head out of town on Monday morning. We sat through 40 minutes of traffic to go three blocks then we narrowly escaped being caught in the Veteran's Day Parade (thank you men and women for your courage and self-sacrifice).

We ate at one of the Ferry building restaurants and for some crazy reason I thought Descartes and I could walk with both kids to the Aquarium at Pier 39 and meet the rest of my family who would take the trolley car. Do you know that the Ferry Building is actually not even Pier One? It was 1.3 miles to our destination. Not actually that difficult, except for these reasons:

• Lucy hates her stroller
• Descartes and I walk at two completely different paces. I do the fast "retail" walk, and Descartes? Uhm he has a smooth well-paced "lumber". Believe me, in an emergency Descartes could walk the 50 miles to save our family, but everyday walking together has been first a "ha ha" joke between us, then a problem, and now something we 'manage'... in this case I walked ahead with Lucy.
  
• Lucy hates her stroller.
• I wore my awesome black boots with a heel, which can generally be worn all day long.
  
• Lucy's stroller is broken and no longer has the ability to buckle anything to anything.
• Lucy is only 17 months (today) and therefore cannot walk 1.3 miles in the wind along a busy street without at least having her hand held.

Okay so blah blah blah.. Lucy rode on my shoulders for 1.3 miles, then we did the whole touristy thing... then we walked back! I felt like I was doing that Avon walk again.

I have blisters on the bottoms of both of my feet from wear my socks rubbed. Descartes hurt his back somewhere along the way yesterday.

The point of all of this is that we did stuff that my kids enjoyed yesterday... with my parents. We went to a little Mexican restaurant that did not even have table service... we went to an aquarium...we sat outside by the water and drank smoothies. I think everyone enjoyed themselves too. It felt like we really were all present in the moment and there wasn't a lot of pretense or stress (aside from that initial traffic), or high highfalutin' something or other for me to panic over (you can dress us all up appropriately, but I have a kid with a disability and a toddler.. those two creatures don't exactly blend in at the club). It still wasn't a "natural" environment to show off my kids, but at this point what would that even look like? And it is hard to rest when you are fighting for a table at the wharf, but it was closer, sort of, to my parents spending time with Jake and Lucy that looks like Jake and Lucy being who they are.

I don't believe we should live our lives around our children. I think parents coddle their kids, and give in way too easily/early. I think parents lose themselves in parenting, sacrificing their marriages and neglecting their minds. I think that removing all sense of winning and losing so kids can have "great self esteem" is wrong and going to seriously back-fire on our nation in the next twenty years. Kids should learn to sit nicely at the table, and have great manners and deal with itchy ties and stiff shoes, and be able to "not speak unless spoken too" if necessary.

but...

I do think that kids are only small once. I am never having another baby. My parents are never having any more grandkids...okay , maybe one more? But not from me. It will be from my step-sister who we never see anyway. So this is it. Everyone's chance to make silly faces and read books to tiny people with little fingers who can't turn the pages well. This is it to see wonder and the world through the eyes of someone who has never seen it before. Lucy can already walk and talk. They only saw her twice before she could walk, so the 'baby' part is done. That's it.

So I guess I'm glad we all went to the aquarium yesterday so they could see Lucy touch a sea star for the first time, and see Jake watch the anchovies swim 'round and around (they still may have a chance to see this in the future though, eh?). I'm glad we spent more time sitting and drinking smoothies in the California fall sunshine than we did gazing over menus at a beautiful high-end-hotel brunch.

There will always be time for poached salmon and eggs Florentine...but Lucy is already done with her stroller.

old photo good laugh

I just saw this photo again and had to post it.. it is from Thanksgiving last year, so Lucy is 5 1/2 months.. my insane husband sent me the photo titled... safety is no accident...

and yes I think that Lucy is flipping me off.

Kisses

Lucy gives kisses now.. freely.. to her dolls.. to pictures of babies in books, to her mom, and dad..

and to her big brother Jake... who holds very, very still so she can get him.

i am the luckiest mom in the whole world

We Don't need no Stinkin' Groceries

So we got back from Tahoe on Sunday night.. and I just sort of knew that Jake was not going to make it through school on Monday... his nose wasn't running when he left for school (I swear), but twenty minutes into it I got the call that he was snotting everywhere...he can't, or won't blow his nose.

That's the thing about having a special needs kid, sometimes it is the little stuff that kills you..like the fact that if Jake would/could just blow his nose twice in the morning he would get all of that snot out and be able to attend school... then I would be able to go grocery shopping with only one little girl... who is trouble enough all on her own "that...that...that...".

So I picked up Jake when I got the call (Lucy and I were at Tar-jay buying Jake socks for camp... and life since he wears holes in them at the rate of about $4.89 a week). Luckily I had already downed two shots of espresso (on ice) and scored Lucy a cup of ice ... (I know.. not a good baby food).. so we went back to school where Jake smugly got into the back seat of the car.. and I decided that we would take a shot at grocery shopping... so we invaded Safeway.

I was hoping that the cart with the little bench seat would be available.. that would make it harder with Lucy, but that would mean Jake could sit down and perhaps just "be" while I hurried through the store... of course it was being used by a family with a seemingly normal child (I know very unfair of me to say.. who knows, maybe that kid is autistic too..but based on extensive hahahah knowledge he was just fine dammit and he coulda walked). So I had to use a regular cart with Jake walking and Lucy haha belted in to the kid seat part.

I know that the cart does not have a sign that reads...

"Please reserve this grocery cart for those families who are out of milk because they were traveling and it is now their baby's first birthday and the daddy has a job interview and the mommy would like to buy some tri-tip to celebrate, and some broccoli, and perhaps some yogurt as well, so that the older son, who has all sorts of special needs can take his medicine in the morning because if you take this cart it is entirely possible that this family might not get to grocery shop at all, or if they try to, people will stare at the writhing autistic boy on the floor in front of the cake mixes (because the mommy has realized that there is NO FUCKING WAY she is going to possibly make a homemade cake with two children home all day and no childcare). It is also possible that if the mommy has to use a regular cart she will need to steer it with only one hand since the other hand will be busy holding her autistic son's hand... so if her daughter tries to escape all she can do is pray that the baby (who is really not a baby at all anymore) will actually listen to the mommy and sit back down.. and if there is any sort of hill..well it is possible that the baby who is celebrating her first birthday on this very day may actually be sent flying all by herself because the mommy has to hold her son's hand ever-so-tightly so he does not escape, but sometimes he twists his arm all the way around (because he has low tone and he can do that).. so that the mommy gets confused about which way he actually goes, and has to use BOTH hands to unravel him and get him back on his feet and attached to her again. So please refrain from using this cart if your kid can possibly just walk along beside you."

I know there is no sign like this.. but I sure could have used that cart.

Exponential Snot

At what point does the world **not* stop because there is a head cold running rampant through the family. Jake is home from school due to green trails on the upper lip. In a good mood. Lucy does not seem to have the cold so bad as the meanies when I try to wipe her face. Descartes was a sniffly-headed goof last night and this morning barely able to get it together for work. Poor guy. and we are leaving for Tahoe in about 6 hours.

Cookie (Descartes' mom) swears she used to just sit her three kids on the couch in front of the t.v. and let their noses run all day, never wiping them. I find it hard to believe, but it is also possible that they had a green couch and green shag carpeting at the time. (ewwww grossss)

Lucy is currently in her crib YELLING at the top of her baby lungs in protest. She does not like to nap. She does not want to miss anything.
She is my daughter.

Lucy eats Sand

Gosh was she cute. By the way, in case you were wondering I am a very mean mom because I did not immediately rinse her mouth out. I wanted the experience to be so negative that she would not want to do it again anytime soon. Though she did not actually seem very bothered.. my plan worked and she has not eaten any sand since.

Everyone eats tuna

I know it may seem like no big deal, but today my entire family ate the same lunch. Cooking will now be much easier going forward.

It is also one of those moments when you realize that your "new baby" isn't so new anymore. Lucy is 8 months old now. And while she only has 1 1/2 teeth, she is already a chow hound eating a tuna melt for lunch today and pizza last night for dinner.

I think most people were worried that if we had a second child Jake would somehow injure me while I was pregnant, or that Jake would hurt a tiny new baby. Well Jake, as it turns out is the nicest big brother on the planet and we have not had even one scary incident betwixt the kids. Now I really do wonder why we waited so long to have another child. Fear is so powerful.

Fear may be even more powerful if you are on the smarter or more creative side of life. With fear, your amazing intellect can conjure up all sorts of bad things that "could" happen. Like my father, I am able to create fantastic scenarios then with each horrible thing I imagine, I create the contingency plan that saves my baby, my family, my friends, the dogs, the house, the car, the planet..what or whomever lies in peril.

It is exhausting. It also means that I have tennis shoes under my bed, rope in the car, Jake's bus vest and a leash with which to tether him at the back door, extra towels in the laundry room, spare cell phones and more than 50 batteries of all shape and size. We also have cash and coins at the house (not that much so don't get any ideas that we are worth stealing from) and my cell phone is always charged and my gas tank always has at least 60 miles worth of gas (to get to the East Bay to Descartes' parents... or an hour outside of the Bay Area). I have pedia-sure, dried milk and diapers in every size. Spare medications, paper plates, several sets of silverware, enlough liquor to whet every whistle in town, AAA, way too much car insurance, homeowners insurance life insurance and Earthquake insurance which doesn't even kick in until there is more than 60k worth of damage to my home.
I have every single phone number plugged into my cell phone, 2 dozen eggs and an extra gallon of milk in the outside fridge, two propane tanks filled and ready to grill, and a corded phone so we can still make calls if we have a land line but no electricity. All of our cars have AWD and we have a pop up trailer that we can live in at a moment's notice.

There are more things I do, more things I have stored. Am I a freak, is this just being well-prepared in Earthquake country?

My kid is Bi-lingual

It is time to start taking Spanish classes.

Apparently when Jake was walking in the hall today (hallways in California schools are outside remember) he saw the rain, pointed and said "Agua"

*******Just so you know Jake does not point and rarely speaks. ********

Pretty cool eh? He has been slipping out more and more lately.

When I read the journal report from his teacher in the car I asked him if he had done that and he put his head down and smiled!

Just now he gave his sister a toy in her highchair (after stealing all of her Cheerios, of course.)

I think he is hitting another phase of development.

On Wednesday he didn't seem to want to eat anything 'normal' so I asked our babysitter to make him whole wheat cinnamon sugar toast. She sliced it up, then told me he wasn't eating that either. I said, from across the room, "C'mon Jake, you love cinnamon toast"
He then dropped his head made a face and shook his head "no" and smiled at Valerie!

As if to say "my mom is nutters".

Crazy Jumperoo Lucy

Happy Christmas moments

Waiting

My entire house is in disarray. Not that it is in order most of the time. With a 5 1/2 year old autistic kid, it would be hard to have anything stay in one place for too long.
The problem is.. I have begun nesting. At least I think it's nesting. It started earlier this pregnancy. I have been baking and sewing and generally not leaving the house, and I want everything put away and neat and nice... and well, that doesn't happen in my house.

While shuffling our stuff about the house we have unearthed an entire box of cassette tapes. Most of them are mine circa 1990, when my best girlfriends made me mixed tapes to take off to college. Most other people stayed pretty close to home for school. I headed north from the sandy beaches of Surf City and went to Berkeley, and honestly I have never been back "home" for longer than 3 weeks in a row. ANywhooooo my girlfriends made me all of these great tapes with songs like Total Eclipse of the Heart Great tapes with songs that are on the verge of coming back into style just like those nasty 'pumps' with the criss-cross front that were so unattractive the first time.

The Real Reason I can't have any downtime

I am supposed to be cleaning out our office in anticipation of our daughter's birth..which is now less than 90 days away. Instead I got on the computer to send an email to a girlfriend of mine who has moved all the way to Texas.

Instead of just writing the email and quickly getting back to work I cruise around the internet, somehow getting to The Ladders website which is a job search website catering to those who either want to make over $100k, or normally do and who, as they are job hunting, don't want to sift through 600 lower positions for which they are over-qualified. I think it's a great idea. Anywhoo that led me to the blog of the founder of that Company Marc Cenedella. And after reading more than one entry of his blog I randomly found an entry that discusses the difference between American emoticons and those of the Japanese. I don't even use emoticons very often.

SO now of course I am documenting my unimportant mini-drama here on my own blog.. for what purpose?
I really, really don't want to clean out this room right now.

(-_^) wink

hula baby

currently the squidge is 1 1/2 inches tall and can dance the hula ( I saw it on tv) It appears to have 2 arms, 2 legs, ears, nose, eyes mouth etc...correct number of everything in all of the right places.
I asked if they could see any autism. The nurse didn't laugh. Apparently I am losing my touch.

Note from Descartes to the Family

Hello All-
Since I am never home in time to call everyone before it is very late in your timezone I decided an email was the best means to let everyone know of our big news. It looks like there is going to be another cousin on the way! Jake's little brother or sister is due mid-June and we are very excited at our house.

We had our first ultrasound and everything looks good so far. Jennyalice has been feeling pretty good. She only got sick once when she tried to drink a large coffee. I myself am starting my sympathy snacking as a measure of my support.

MACLAREN MAJOR ELITE

MACLAREN MAJOR ELITE

Arghhh we want this stroller. It would make our life so much easier. It is amazing.. Even though we didn't get a wheelchair...therefore spending about $1200 bucks for a little Pixie instead of $10,000...we still can't seem to convince the powers that be that it would give our child more access to life (not to mention help out my back) if we could get something a bit more manageable. What a pain.