Tuesday, February 18, 2014

A Reboot in 2014

Feeling refreshed 

Being away for 4 weeks was REALLY refreshing.

I  made it a point to not check email or do anything work related ( probably one of the first vacations when I have done this)

Its not that India was necessarily relaxing ( traveling with R rarely is + we spend almost 8 days in transit). But simply occupying your mind a 100% with something else is refreshing.

When I am in my regular  life, i forget that work is a part of my life- not my whole life. On the plane back, I look at R lolling on his seat and I swear that I am going to try and remember this simple cliche that I have lost sight of.

Getting back into the routine

DH and I discussed how much of a routine our regular life is in when we are in Seattle. It takes us a long time to get over jet lag ( almost 10 days) but the routine is a relief.

Plus its nice to have our village again. Without his therapists, we are the only friends for R and it is quite exhausting ( especially in a time where we want to go around, shop and meet all our friends)

Relearning old lessons

I find myself finally able to get into all my old habits and routnes-

  1. My flylady routine of cleaning the kitchen in 15 minutes 
  2. Listening to mystery stories on my phone while I do household chores ( I am re-listening to the Hamish McBeth series - a series about an unambitious police officer and its so different than the people I am around all day that its a lovely bit of escapism
  3. Looking for little pleasures in the day  and connecting with DH and myself. DH and I are back to our date lunches on Saturday and taking walks on the weekend when his therapist is around 
  4. Have a day of no-work every week - we try to finish laundry on Friday and cooking on Saturday - so Sunday can be devoted to family time 
  5. Getting on a low carb diet and starting to walk( just 2 miles everyday but its a start) 

Still sick 

Had a depressing call with R’s doctors – basically his  labs were quite bad. He has inflammation still

If we are lucky – he may have simply picked up an infection while traveling and if we are not lucky – this means that the Remicade( magical medicine) has stopped working quite effectively.

I dont hold out much hope.I know what the answer will be even without the tests.

Each time in the past that DH and I have looked at  two possibilities its always the more worse one that R has - ( is he deaf or does he have autism, is it motivational or is it apraxia,  is it a bug or is it crohns? So many doctors offices we have sat in and DH and I hear over and over, that its  always the harder road for this most precious innocent child!)

I know his tests will be a pain to do and when the results are back - there will be no easy fix of antibiotics
( Indeed this turns out to be true -and the following days show that he has no parasites and that  his body is starting to develop antibodies to the magic medicine- which happens in 1 out of 10 cases)

This makes me want to cry - why does our sweet child have so much difficulty in life?

I think you all know i work for Microsoft in Advertising

For the Superbowl - Microsoft made an ad about how folks with ALS are using technology to communicate.

On the day that Superbowl airs, the facebook page of Microsoft is simply taken over by the ALS folks asking about the technology that Steve Gleason used in the ad. ( BTW Microsoft has responded to each facebook comment)

I read their stories with my office door shut, tears rolling down my cheeks.

People describing how "ALS is taking something from me every day" , or this request " can you send me this software .. I got diagnosed with ALS recently and when the time comes that I can no longer speak, I want to use this eye tracking software to communicate"

Truly there is no end to the difficulties that life can bring.

But we must "rise to life's challenges" like the Duchess said in Downton abbey today.

One of my uncles is a very religious and erudite person - meditates and prays everyday. I asked him what explanation does religion have for the suffering of our children.

He assures me that there is no explanation - that after all his study he has found that the answer is simple - make the most of whatever  you have

As I try to reconcile with the new challenges in my life, his simple words uttered from a sunny Dehradun terrace come to me often.

That is my resolve for this year - to make the most of life.

That, and to be brave.


Sophie's Trains said...

Love this. It is my resolve too. I am sorry R is suffering (and you). I hope relief is on the way

Looking for Blue Sky said...

I'd love to know how to clean a kitchen in 15 minutes!

Sorry though that R is still having problems and that life generally seems a bit sad for you all right now. I'm also trying to make the most of every day - funny how people only tend to do that when life gets difficult xx

Barbara TherExtras said...

Difficulty drives humans to...do more, think more, feel more, learn more? Be more. Our innate inequality as people is juxtaposed against our absolute equality in spirit. A mystery.

My 2 cents. Ha. Your uncle and the Dowager Countess say it well.


Floortime Lite Mama said...

@ Dr Barb - thank you for that insightful comment
@looking 4 blue sky - its very true that adversity forces us to find a way out - the 15 minute thing is a fly lady trick - I honestly think what happens is that you speed up more as the rule is that you set the timer for 15 minutes and then STOP
@ Sophie's trains thanks so much for the good wishes - we are in the hospital today for more tests and can sure use your positive vibes

Kim said...

I hope relief can be found for R soon. Poor kiddo. I enjoyed reading that you really, really vacationed--didn't check email or work--how many people actually do that? Good for you. I too want to be brave and live this life this year. As always, I enjoyed reading your update and the pictures (and I can relate to being your child's only playmate and how lovely it is to play, but how draining it can be too.)

Anonymous said...

I am catching up with you! I love your posts. I like that- making the most out of life. It is something I am learning right now.

Bright Side of Life said...

Hi K, I am really sorry to hear that R is battling at the moment, it truly is quite unfair that our kids have to suffer with so much. Nick hasn't got Crohns, although he does have tummy issues and I have found that trying to make his diet more healthy is helping a lot. I am sure that you are also doing this. How wonderful that your holiday was just that and also that your regular routine is enabling you to have some special time with DH. Thinking of you all. xx

jazzygal said...

So sorry to hear your lovely R is unwell and I hope they find suitable medication to help.

Hang on to those simple words and let them help you through.

(Are you watching Downton Abbey??!! Isn't it fabulous?!)

xx Jazzy

Floortime Lite Mama said...

@Kim Thank you for that empathy - I feel guilty too but too often these days I just want to watch some TV !!
@ Julie - you sure are !!!I am so amazed at your transformation into Runner Mom
@ Bright side of life - your latest posts have really inspired me on nutrition though R is SUPER picky - I would be SOOOOO happy if he would eat a smoothie like your sweet child does

@ Jazzy - you are a Downton Fan too !!! I love it

silent historian said...

Somehow difficult times make us a better person... something i try to tell myself in when in distress. And all of us have ways to deal with our stress. I am sorry, that life is a bit challenging for you guys right now... but i hope and pray for better times ahead for your guys.
Love and Hope.
Keep the Faith.

robin said...

Poor R! Sure wish that he were part of that 90% with that medicine, or rather that he didn't have Crohn's at all!

I saw that Microsoft commercial and I immediately thought of you. :)

When I was growing up, my mom instituted Sunday as family day. We didn't really do anything special but I remember my older brother whining that he couldn't go to his friend's house etc. As it turned out, he did the same thing with his son who is practically grown and I see how special it is for families and making memories. Good luck with that goal...

Your uncle sounds very wise.

Full Spectrum Mama said...

Your uncle does sound so wise. I love that he doesn't offer a vapid "spiritual" answer to R's and your situation, but instead real, practical help. My heart goes out to you. My G is also struggling with major stomach issues and anxiety attending them...
I enjoyed your list though!!!!

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