Saturday, March 30, 2013

The end of March

I am having to relearn all about being naturally happy once again

The first habit to learn is of course is being present in the moment

I have vowed to stop looking at that little rectangle in my hand all the time and instead look at my son , like really look at him and pay attention to him

We are spending a lot of time outside as the sun has actually made an appearance and most evenings its dry enough to go to the park

R and I take his numbers
 DH usually joins us
( the clouds of the Pacific North west are like nothing I have ever seen before )
We carry a little picnic - a cup of Jasmine tea for me, sometimes a little Brie and R with his usual junk food
We feed the ducks sometimes ( though in this park they are treated as pests )

We collect pebbles to throw into the lake

We look at the blue waters

Have I told you how much I love water

Dating DH 

Since I am usually so busy , DH and I dont really do our date lunches any more - Instead on Saturdays  when R has his Social skills class ( see him here the boy in the white sweat shirt scratching his back  )

We take walks or go grocery shopping together or eat
( OMG this city is just full of parks )

See behind me here - can you see the uneven ground - This is a "reflexology" ground - where the stones massage your feet and you get rid of toxins
( privately DH and I both agreed that the main benefit was that our feet hurt so much on the stones, that once we were off the stones and back in our shoes - we finally knew the relief of not being on those agonizing weapons )

We find some lovely views
I work from home a couple of days and we have a date lunch of omelette ( DH Is the best omelette chef in the world - his cheese omlette will make you weak in the knees )

Getting more organised 

I am using multiple things to get more on top of things

I take the training "Take Back your life" offered by my employer which offers real practical ways to prioritize work

Read some principles from an HBR blog  here 

I also start doing my Fly- Lady things

Getting all weeks meals planned and ready to go on Sunday  and doing the same with laundry

So atleast the part of the week that is in my control ( what to eat, what to wear ) are all taken care of

Back into playing and interacting with R 

It seems the entire past 9 months have been a series of reasons to not focus on floortime and development of R - something super important to us

But I am starting back into picking up cues again

Like he is really interested in old Nursery Rhymes

SO we act them out - here R is bandaging Jack's crown

R loses a tooth and we play out the whole tooth fairy interaction - here he is collecting the princely sum of $5
I have also started to seek out Floortime Resources in this area

Last night I fill out a form to get on a wait list

I am struck by the similarity of all the questions and all my answers over the years

When I have to write about what I want R to achieve - its once again those same things of language and peer interaction ( of course R was once non-verbal and now we are talking about different things like  reading comprehension etc )

But its roughly the same

What also thankfully has remained the same, is how much we enjoy R

When asked to write down what we enjoy about R, I simply write "Everything "

Sunday, March 17, 2013

Days of darkness, Days of Light

My dear friends

How long has it been since we have written !

As you have seen from my past post - the months of December and January and most of February have been difficult with illness and a new diagnosis

Dark days of illness, finding joy where we can 

As January passes, R becomes thinner and thinner

Most foods make him vomit

DH and I became ninjas at positioning trash cans so he could throw up in them

Its a frightening time and we have completely stopped scolding him for anything -

In our brand new house - the white carpet already has vomit marks

(I discover that there is a big paint streak on the newly painted walls but it gives me joy -

I feel  as though an active child lives in this house)

We try to continue with some of the things that give him joy

Like playing Table tennis at the pro club

We go for a birthday party at Chucky Cheese - while its so noisy ( DH and I need a nap ) .

R enjoys it and its so well worth it to get a few smiles from him

We slow down a lot ( we are forced to ) as R is constantly exhausted
A new plan for schooling for R 

Since R's illness does not seem like its leaving anytime - and R misses school

Some days too week to go and some days - he feels like throwing up as soon as he gets to school and DH has to drive back to get him

Plus school barely seems to be pursuing any academic goals at all - we are in a school district that is supposed to be very good - we like his teacher very much but don't feel like school is meeting his needs at all

 So we decide to make our own version of home-school

  •  Part- time school 
  • Part time home therapy program - which will start to focus on academics 

We have a meeting meet with our team therapists - all his therapists come and his class teacher comes as well

Behold the delectable cupcakes that DH makes
We decide on this new gameplan

Finding out what's wrong 

We go to the hospital for scopes

How frighteningly thin he is

I went dwell on the difficulty of this time

Its just as bleak a time as it is for all parents of ill children

At the same time, its not as terrible as you  would have imagined when you were not in it.

You just go through it because its all you can do

You find what joy you can

DH and I get a lot of time together, I discover that the grilled cheese sandwiches at the Hospital cafeteria are quite good and R discovers that they have a lot of Einstein DVD's

The wireless at the hospital is really good and I am able to manage a lot of my work

 As you know from my previous post that that R has Crohn's


R's medicine has to be taken in form of an IV .

(Another post later on getting smart with your child's hospital visit to follow soon, as we learned so much to increase R's comfort with the hospital. And when I searched for a "how to pack" what to expect" I found nothing  )

We go to the Swedish Hospital in Seattle and I cannot say enough about the staff there

Just amazing nurses

R watches Baby Beethoven ( this is his coping strategy for his time of stress )

We have to go get this medicine on a schedule ( for a long time ) and  we are becoming pros at it

R, I see even makes this his screensaver

We need to watch for for whether R develops resistance to this medicine ( Remicade) , or a reaction

But so far so good

And it works in double speed

Getting Better 

Within a day the vomiting , the holding his tummy and lying down on the floor , the complete lack of appetite is gone

We even go to IKEA - as his beloved Miss Tori is in town ( our speechie in Knoxville who has family here in the Pac NW )

R ignores her, as per his usual style when he meets someone after a long time.

But  I am quite amused to see that he has made a picture of her and him his screensaver on his smartphone
By week 2 we are going out to restaurants
Doing daring things in the club
R goes inside the ball.

While all the other kids are devising techniques how to stay in charge and in control - R does best as his technique is to not resist the movement of the ball but flow with it ( see him inside )

What a great technique for life as well
R's personality has changed as his body is healing

He is very very busy now and barely has he time for long snuggles

He has gained 10 pounds in a month and asks to eat all the time ( still asks for only junk food and eats healthy foods fear factor style .. but still )

This is Seattle and so its still cold and rainy in "Spring"

But R demands to go to the Park everyday that it does not rain

The park and the lake down the lane beckon to him

He uses the big slide

He runs these days all the time

He sits and stares at the lake

Even today - even though the temperature has dropped to the point that I need to wear gloves - he insist on going out  "to make his balloon fly"

 I run behind him watching a boy with a red balloon in his hand

I don't even dare to hope that his Crohns is in remission ( keep your fingers crossed for us please )

We set the balloon "free"

I watch it make its way through the branches of the tree
It catches on the branches

I hold my breath and hope it makes its way to the sky

The little red balloon does make its way to the sky, and  it feels like a good omen

Hope feels good

When I was little, I used to wish I could see into the future

I don't anymore

I don't know how many struggles lie ahead us and I am glad I don't

For life teaches me again and again  to take all the joy there is to have in each moment in the present

Thank you my friends if you have stayed for this long post.

I am so behind in staying in touch with you - please forgive me and I promise to visit soon

Saturday, March 2, 2013

Going on

A reminder showed up in my email today 


"Your digital library book will expire in 3 days. If you purchase Curious George Goes to the Hospital from the Kindle Store or borrow it again from your local library, all of your notes and highlights will be preserved.

Its took me back to  three weeks since DH downloaded this book, as we were trying to find a social story to comfort R to for hospital stay

At this point, 3 weeks ago,  R had been sick on and off for almost 3 months.

Eating little, vomiting much

Frighteningly thin

 ( And there was a time when he was at the 99th percentile on the weight chart - we used to joke if he gained one more pound- he would be the fattest kid in America )

Lots of GI visits  and no answers

And R in a lot of pain.

"Mama belly hurt, hug me, rub my belly "

And DH and I, knowing the dreadful helplessness that parents of ill children know.

Finally we are at the hospital, as the only way to get some answers is to have some scopes

R is still asleep

The GI specialist has told us before that he thinks that it will take a while probably to get answers - that most likely he will have to get his lab to look at biopsies .

That most likely its a sneaky pathogen or bacterial infection- that the regular antibiotics cannot get rid of .

That we should not expect any answers today.

As we wait for the doctor to come out, I tell DH my secret wish. That R, like Curious George in the story,  has eaten a puzzle piece.

Which is stuck in his tummy.

That this will be a funny story one day

But its not to be

Once again, like another day , almost exactly six years ago, DH and I are holding hands

And the doctor is telling us that "Your son has crohns"

And we are saying things like" But didn't you say that only white people get crohns?

How do we keep taking these wrong turns in life?

I cry a lot the next few days.

All the sad things that mothers of ill children think




And most of all, how could this happen to us again?

For when Autism happens , you think you are done with the difficult thing and that nothing else will happen to you

R's crohns is bad ( For Crohns like Autism is a spectrum )

But also like Autism, even though Diagnosis day feels like the worst day ever, it actually is not

Finding out is the necessary precursor to helping

(For R was very sick last year as well, but seemed to get better with just a few rounds of antibiotics -the particular antibiotics coincidentally that help Crohns

So he probably had a mild "flare" last year )

He did not grow at all last year - and people mistake him often for a 5 year old.

So finding out has probably been a good thing ( however hard its felt )

Just two weeks of starting treatment and R is a different child

He has gained weight

He is running around and jumping again

That horrible unsafe feeling- that anytime , some thing un-good can happen to you -  has gone

That unsafe feeling is true.

Bad things can come out of nowhere

In the 3 weeks of the borrowing period of a library book - I have gone from being the mother of a child with Autism to being the mother of a child with Autism and Crohns

But other things are true as well

You know things you did not know

How strong you are

How weak you are

That you are  lucky to be married to a a man you can laugh with.

But that you are even luckier to have married a man that  you can cry with

That your mum and dad and sister feel your pain like you do.

That nurses are angels

That medicines heal

That you have many friends

That life is terrible

And life is good

I look around my new normal and think

I can do this

I am doing this

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