18 August, 2008


Anna, Jake's loving, kind, tender, demanding, experienced aide..is no longer going to be his aide at school.

She can't physically care for him and take care of her body. When she asked about the future, changing her position in the class, being his aide half day etc, on Friday, she had no idea that it would mean that Monday morning she would be somewhere else.

I sobbed on the side of the road after I dropped Jake off at school today. His classroom teacher Janet had tears in her eyes when she told me. She didn't know until this morning either when Anna called, also in tears. It was the right thing for the district to move her. She will be with pre-school kids now; little ones who are a third of Jake's body weight. She will help little 3 and 4 year olds with disabilities and sad mommies, and those people will be so lucky to have her there. She is a good egg. She is good to the core.

and we will be okay. I can say that now, 12 hours later without having the tears in my eyes slip out onto my cheek. Okay I guess not. I am crying again.

It goes like this right? I mean change is the only thing that's constant. It will be a growth experience for all of us. We will find someone else who will care for Jake, and fit into the classroom, and not be bitter that my nearly 8 year old still isn't toilet trained. He or she will help him eat, and encourage him and know soon enough what his favorite book is and remember first to offer him water when he is upset.

I had to explain my tears to Lucy who sat patiently in the back seat eating vanilla wafers while I pulled to the curb and cried in my hands that no I was not mad at her. I said I was sad, and she asked me why.

I didn't tell her the whole truth. I left out the part about how people are unkind, and impatient, and most won't bother to learn all of Jake's subtle cues about when he needs to eat and pee and rest and run. Didn't tell her that while aides get paid a bit more for a kid in pull ups they will begrudge every minute they are in the bathroom with your kid...or worse yet leave your kid in soiled pants and let them get on the bus because they won't be there on the other end of the ride when Jake is miserable and yelling and has kicked off his shoes because he is so upset and embarrassed. I didn't tell her that the difference between a good aide and a bad one will make our home life easy or hard every single day. I left out that an aide without intuition may as well not be there, and that if her brother isn't pushed and held to standards he won't learn and grow and we will lose even more time. I couldn't bare the thought of explaining that most people will just think her brother is severely mentally retarded and never even notice that he laughs at jokes and smirks when he has gotten away with something. I didn't tell her that I was crying because her brother's life is hard on an easy day and finding someone he can spend all those hours with and feel safe and happy will be just one more thing that makes it hard for mommy to relax while he is in school.

I told her I was sad because one of Jake's teachers had to get a different job, and that Jake was really going to miss her. She asked if it was Anna. and when I told her it was, Lucy said "me too."

We will all miss her.

I picked Jake up from school so he could have some time with Anna who had to come back to his school to drop off her keys. They hugged and we all cried and Jake kept hugging her and loving on her. We gave her a pretty ring as a goodbye present, and I made sure she has all of our information. Her new school is actually only three blocks from our house, so maybe we will get to see her sometimes, but we know how it goes in this life.

I am trying to just sit in the space of thanks. I am so thankful that we had a chance to have her as such an important part of Jake's life. He is a better kid for having her as an aide, and I was so thankful for being able to relax when he was in her care.

and now I am going to drink a beer.

Monday Comes 'Round Again

and I'm late, and tired, and behind, but at least today I am also a bit fortified with the knowledge that as tiring as it is to not be in our own home, our kids had a great weekend at Descartes' parent's house. It is nice when my kids are happy.

Visiting with Descartes' sister, husband and their two beautiful daughters. Lucy had her a sleepover, Jake opened presents they had brought for him.. and then played with the gifts. We ate good food and talked and napped.

Now it is time..past time... to get ready for school.

10 August, 2008


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.

09 August, 2008

I Forget

Most of the time I forget about the life I kind of expected.

My dear friend, KFJ just sent me a great email...the highlights of their trip to family camp, something they've been doing for years. Our alma mater has a family camp like this one, and I had nearly forgotten that I had sort of pledged to myself as a dreamy eyed senior that I would make sure my family went to The Lair every year to be exposed to nature and to other families that loved their college and education. Silly maybe, but I loved the idea. I was always a Go Bears! sort of ambassador at Cal, and at the time could never imagine that the reason I wouldn't be going to family camp wasn't because we were working in France or Japan.. that the very reason for going to a camp like this would be the thing that stopped me...my kid.

So I forgot. KFJ's oldest daughter Papaya is Jake's age; almost exactly. We have a great(?!) photo of the two of them, Papaya sitting up so nicely, Jake being temporarily propped up by a Bobby so he doesn't take a header. I knew then that my kid was different. I knew, but it was watching my friend from college with her daughter that was just one more shocker that this life was going to be a lot different than I imagined.

but I forgot that too. Maybe that's a blessing of having a kid with weird sleep issues and the ability to nearly conk me out by accident just by getting out of the tub, perhaps the brutality of our daily living helps me forget, just as most women can't remember giving birth. If we remembered how would we do it again.. if I constantly remembered the loss how would I face tomorrow. And so I forget all of those little 22 year old fantasies. That's what they were any way.

We dream so we can set goals and start running.

But tonight I read the email (which I love.. so don't stop sending them Kung Fu...)
and I just wept as I looked at the slide show. Her beautiful talented, smart children looking at the camera, or smiling at their counselor. Performing at the talent show, swimming without diapers, riding bicycles, hell.. wearing a bicycle helmet. Jake won't even tolerate a friggin' helmet!

So I will wallow for a few minutes. It feels a little (okay a lot) indulgent. My child is alive and healthy. My son managed to get through IKEA twice this week, which is more than most kids can do. And when he hugs me I know he means it because it is so hard for him to pause and connect it is not out of guilt or direction; he is doing it to connect. And he smirks when his baby sister is a brat. And he tried to play cars with Sage's daughter the other day. So we are good. And school starts on Monday. And. And. And.

and I am sad. and I can't help it dammit. And envy is the ugliest sin I can ever imagine, and right now I want a little bit of what someone else has, and I hate HATE being the person who wants what others have because I already have so much.

I just wanted to go camping. I just want my children to take a picture together.

I just want to forget again.

08 August, 2008

Lucy's Favorite Part of the Olympics so far...

This is the version playing in China. The U.S. version has a song with a man singing... something about:
We don't have fans but we don't care 'cause we have plans...


Lucy is eating her fourth piece of toast smothered in butter and home made jam. Jake is in the back yard sifting rocks, creating his own Zen garden in the corner.

The migraines have finally passed. This time. We made it through another round.

I try to remember how I felt just a few days ago. I think it's like living while drowning, if that's at all possible. Although I've never been even close to drowning in actuality, I can imagine that our life with Jake's migraines (which exaggerate his other disabilities), our life might be like when you have fallen in and you are just about to swallow that first breath of water, but you can still see the surface. I feel like I'm not going to make it, as if I have run out of patience and compassion and energy and will.

and then I catch a breath. Descartes comes home from work, Jake slips into a tenuous calm, the babysitter shows up, and I can come up for just a moment.

05 August, 2008

Give My Daughter the shOT!!!!!

This is the scene to which Anonymous refers in regards to my previous post. Thank you Anon. I am quite certain I could play this role with ease.

04 August, 2008

Wow. Now That's Customer Service!

The Rite Aid pharmacy employee was just a TOTAL bitch to me. A phenomenal wow, seriously? kind of nightmare. And I know I am a bit of emotional Hulk right now so things can set me off, but c'mon.

They did Jake's insurance wrong and when I asked her to run it through the correct one so it would be zero dollars, she said I would need to come back because she had "a lot to do."

I said, "Well it should take about two minutes at the most because it has happened before."

Then she started to argue with me about how I should have told them which insurance to put it through (which I have) and that I would need to come back to get it--and she was huffy and puffy and hands tapping at the counter kind of irritated.

So I said "That's okay, never mind, it sounds like you are in sort of a bad mood, and I have a seven year old with a migraine so I don't care how much it is I will take it now. Thank you so much."

And she hemmed and hawed and said I would need to come back.

and I started to cry and said "I am having such an extremely bad day, a bad week really, and I have a child with a migraine and we need that medicine now. So I will just go ahead and pay the money and take the prescription now. It's not a problem."

Through the bullet-proof drive-through window glass, she held the medicine up in her hand close to her body and said I would need to come back.

And I said, "I will pay you the money for the prescription now. You will give me the medicine and I will leave right now with my son's medication. I am paying you now and you will give me the medicine and then I would like to leave right now."

She paused, sort of unsure, it seemed, of what to do with that many directives from someone who is not her boss.

Then she finally, reluctantly, slowly went to the register with the money I had shoved in the metal box (after reaching in and grabbing the handle so I could pull it out myself and shove cash in.)

She started to be argumentative again as I took the medicine. I said "I need to go now."

and so I left.

what a piece of work she was...'cause that was EXACTLY what my day needed.

The good news is that apparently she is a "floater", and not a new employee at my pharmacy...so I hopefully will never see her again.
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