Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

• more verbalization
• more silliness
• less able to sit in class
• more clearly visible by his reactions that he is “there” because he is making sounds and laughing appropriately at funny things
• I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.

Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:

• Lots of great memories for kiddos and grownups
• Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
• Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
• Nagging feeling that I am behind

I have finally done all of the laundry:

• can’t find any time to fold it unless I am awake at 2am
• can’t find anything because it is in a gajillion baskets all over my bedroom
• brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry… is still magically not going to be folded and put away.
• constant feeling that I am behind

Date night with Descartes on Thursdays:

• happy husband and wife who actually talked…to each other.. throughout an entire dinner about more than just who needs to go potty.
• less cash
• less time to do crappy laundry (see above)

Can I Sit With You? book number two being published this fall:

• whooo hoooo excitement and thrill of accomplishing something meaningful
• constant feeling that I am behind

Lucy is most precious bright star:

• no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
• I am worn out by 10 am each day
• have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
• breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities. 

Finally took care of myself and went to the doctor for shoulder pain:

• not only do I have a rotator cuff injury, but something is f’d up in my elbow as well.
• need to go to physical therapy 2-3 times a week for at least a month
• personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
• guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.

I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

• more verbalization
• more silliness
• less able to sit in class
• more clearly visible by his reactions that he is “there” because he is making sounds and laughing appropriately at funny things
• I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.

Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:

• Lots of great memories for kiddos and grownups
• Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
• Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
• Nagging feeling that I am behind

I have finally done all of the laundry:

• can’t find any time to fold it unless I am awake at 2am
• can’t find anything because it is in a gajillion baskets all over my bedroom
• brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry… is still magically not going to be folded and put away.
• constant feeling that I am behind

Date night with Descartes on Thursdays:

• happy husband and wife who actually talked…to each other.. throughout an entire dinner about more than just who needs to go potty.
• less cash
• less time to do crappy laundry (see above)

Can I Sit With You? book number two being published this fall:

• whooo hoooo excitement and thrill of accomplishing something meaningful
• constant feeling that I am behind

Lucy is most precious bright star:

• no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
• I am worn out by 10 am each day
• have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
• breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities. 

Finally took care of myself and went to the doctor for shoulder pain:

• not only do I have a rotator cuff injury, but something is f’d up in my elbow as well.
• need to go to physical therapy 2-3 times a week for at least a month
• personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
• guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.

I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

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.

Hands, Feet and Mouths..lots of Screaming Ones

So my sistow is going to leave early because her boys now have hand foot and mouth too. Jaster didn’t like the idea of his boys being so far away from him, sad and sick, so he hopped in his car this morning to come get his family. A bit irrational perhaps, since Demanda and I were going to come up on Thursday night, but a parent’s love is kooky like that. I’ve never been apart from my kids when they were sick, so I can imagine I would be doing the same thing. Of course this week is sort of a big one in his job, since he’s a pastor and all, so I’m thinking he weighed one kind of stress against the other and decided that an extra round trip to the Bay Area was worth it to not worry about his kids.
We had a hard week last week. Descartes had a board meeting at the office which always seems to make his office a bit crazy, and consequently makes him a little less available physically and mentally, Jake had early day every single day for parent teacher conferences, SEPTAR had a summer resources meeting which I arranged via a gajillion emails with strangers, then I went to the meeting of course, Jake’s aide canceled for no reason and then a good reason for three of five days, I had a doctor’s appointment where I had to decide whether I was going to take a medication to take care of myself and finally get Lucy all the way weaned (yes she is still nursing, and at this rate will probably do so until she is thirteen!), and on another morning I had to be up at 3:30am to wait in line to sign up Jake for summer camp. Then Lucy got sick. and then I made brunch on Sunday for Descartes’ parents and Papa’s sister visiting from Canada, and Cookie’s sister visiting from New York. So for Demanda, I am guessing it was not a fun place to visit. This week is pretty much easy, and Lucy is better and childcare is available (I am hoping) and now I can help Demanda with her kids a bit more.. and she’s leaving. It is mostly to do with Jaster wanting his boys, but I can’t help but feel like I have disappointed just one more person.

Duh.

This week has been very very hard with Jake. He has been so “bad” after school, throwing himself around, unable to sit at dinner, screaming, crying, loose-limbed and non-compliant. Jake was so tormented and sad and throwing himself this morning that he:

• cried real tears.
• scared Lucy (not on purpose, but he was so loud).
• reduced me to tears during the sock and shoe phase of the morning.
• made Descartes yelp in pain from wriggling away whilst Descartes was still holding onto Jake (Descartes’ back twisted a wrong way).
• made me so worried that I decided not to leave the kids alone to shower (Descartes had an early meeting).

Then I decided to try the (DUH!) migraine medecine. 18 mintes later he was calmly riding in the car to school. He was fine all day at school, mellow, (almost like a person who had had a mild seizure?). When he got home I gave him another Maxalt since last time it seemed to wear off around 4pm. He has been the happiest he has been in days.

Duh. duh DUH! One pill and he felt better. One pill. My poor boy.

I do not even have enough room in my heart for the guilt of having not thought of it sooner.

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.

am feeling rather blue about Jake right now. His teacher, aide and Cookie (Descartes’ mom ) all noticed his right foot “being favored” I finally saw it today.. when I really looked. He is not favoring his leg.

His foot is actually dropping and dragging. His right foot. is dragging and turned in.

is it nerve damage? from a fall in the back yard or some other time? He had a lump below his kneecap the size of a golf ball a while ago…

is it something worse, like a de-myelinating disorder?

do we need to get another MRI?

is he in pain?

my poor boy.

just now, I almost thought “poor me”, or “why me?” I just want to celebrate our book right now.. I want to have that feeling like things are on track. I really hardly ever, nearest to never do that poor me crap.. because if it has to be someone.. I would NEVER wish this on someone else, so “why not me?” is where my mind rests.

am feeling rather blue about Jake right now. His teacher, aide and Cookie (Descartes’ mom ) all noticed his right foot “being favored” I finally saw it today.. when I really looked. He is not favoring his leg.

His foot is actually dropping and dragging. His right foot. is dragging and turned in.

is it nerve damage? from a fall in the back yard or some other time? He had a lump below his kneecap the size of a golf ball a while ago…

is it something worse, like a de-myelinating disorder?

do we need to get another MRI?

is he in pain?

my poor boy.

just now, I almost thought “poor me”, or “why me?” I just want to celebrate our book right now.. I want to have that feeling like things are on track. I really hardly ever, nearest to never do that poor me crap.. because if it has to be someone.. I would NEVER wish this on someone else, so “why not me?” is where my mind rests.

am feeling rather blue about Jake right now. His teacher, aide and Cookie (Descartes’ mom ) all noticed his right foot “being favored” I finally saw it today.. when I really looked. He is not favoring his leg.

His foot is actually dropping and dragging. His right foot. is dragging and turned in.

is it nerve damage? from a fall in the back yard or some other time? He had a lump below his kneecap the size of a golf ball a while ago…

is it something worse, like a de-myelinating disorder?

do we need to get another MRI?

is he in pain?

my poor boy.

just now, I almost thought “poor me”, or “why me?” I just want to celebrate our book right now.. I want to have that feeling like things are on track. I really hardly ever, nearest to never do that poor me crap.. because if it has to be someone.. I would NEVER wish this on someone else, so “why not me?” is where my mind rests.