No winning or magic cure for Charlie Gard or his parents

So the tsunami of a medical, legal, ethical, moral and parental conflict surrounding the 11 month old baby Charlie Gard and Great Ormond Street Hospital (GOSH) has worsened. Thanks to some new unpublished research data on an “as yet” unproven experimental treatment that may/might/could improve his condition (although it has never been used on a baby with Charlie’s condition) and the intervention of the Pope, GOSH bowed to the overwhelming media pressure and announced that it agrees with the parents and went back to the High Court in London and asked that they be allowed to explore the treatment. The parents screamed and shouted about new research and protocols and about having a fair chance and their rights and that the risks and promise of hope were worth it.

My favorite child (insert name here)

75% of parents say they love one child more than the others and according to researchers at University of California the one that the other kids think gets the most love is the…

If you ask the girls they will tell you that it is obvious that I love Zach the most. Zach was my first baby, and he’s the only boy, he’s smart and funny and caring and driven, he’s a lot like me and he’s special. So of course I love him the most because of that.

She’s not me…just a better me!

There is a great website bearing my blog name momontheside, it’s really good, but it’s not mine. It could have been, I am pretty sure I planned to register the url when I started writing this blog, but, well who knows what I got distracted by.

Suffice to say momontheside.com is a lovely useful mommy site about being a great parent written by, and about, a lovely American lady from the Midwest, called Lisa.

She seems very nice. I get tweets for her all the time because she has a twitter account like I do, mine is called #momontheside, turns out hers 

#MebeforeEuthanasia

seems I might be right to be worried ( Will I hate the Me before You Movie?)

Lots of Protests in the UK and it seems like the movie marketing and pr people completely underestimated the potential for negative reaction by the disability community.

 

 

My pragmatic beautiful almost 18 year old wheelie girl’s comment “mom you have to understand it’s totally different for a person like Will, he has an accident and has lived already and done everything… you have to realize he might be really really depressed, it’s totally different to me…and its only a fucking movie!”

 

 

 

Will I hate the Me Before You Movie?

June 2nd is the day Chelsea graduates High School and if we stick to the plan we will also go and see the Me Before You (MBU) movie. I think Chelsea and Fran have never been more excited for a movie. The Fault in our Stars was similar squealing OMG anticipation, but given they read that book way before the movie came out, and they only discovered MBU after they saw the movie trailer,  I think this is definitely bigger. This is like…Star Wars.

So come June 2 will I hate the movie? I finally read the book last weekend and while I thought the book was very good,  I immediately started worrying. The trailer promises a glorious love story on four wheels but the book is hardly a feel good story.

Mother Trumps Girlfriend – at least in China!

From: BBC China Blog – click for original post

“Girls are everywhere, but I only have one mum,” 

Time to move to China as according to the Chinese Ministry of Justice if the building was on fire my son would have to save me first.

Now to apply the same logic, if you can only make one phone call a week it should clearly be to your mother. Even if I am half way around the world and 13 hours ahead…. call me! Email, Skype  or Facebook are also acceptable. 

Mother trumps everyone – are you listening Zachary!

Clearly I am not adjusting to this new college life very well.

 

 

 

 

Well my stats are booming….

Which is weird,  because I haven’t posted anything in a while!  I’m trying not to take it personally.

Blogging takes time as well as creativity and energy, and lately I haven’t had any.

I could make excuses and cite reasons that would make sense but the reality is I am not sure what I have to say any more, heads too full of doubts and worries.

Time for an attitude adjustment….

The Oscars 2015 …hopes and dreams and national pride

I’ve watched the Oscars every year since I was in college. I’ve stayed up late in the UK, got up early in Asia and usually taken the day off work all so I can watch it live. Big Fan. And with NPH in charge this year should be a good show (fingers crossed)

As with the tennis at Wimbledon when I scream for Andy (who won) and Tim (Henman who didn’t) the Oscars bring out all my national pride for British winners and this year the Theory of Everything and Eddie Redmayne carry all our hopes. I don’t think the movie will win Best Picture which seems to be a wide open race that any of the nominees could win, but Best Actor now we are definitely up for that one.

The battle of the Sides, Mom vs Work

I titled this blog Mom on the Side as a reference to the almost schizophrenic existence that most working mothers have to lead running between the office and home but also to highlight my role with Chelsea, the Mom on the side of the bed, the chair, her life.

Somewhere in the last 8 years the working was lost and the Mom Side became the norm. I became a Mom first and working was fitted in when there was time or space to do so. The Mom Side role took over and the working professional faded into the shadows, and with it the sense of me,  my identity, was lost.

When Chelsea first got sick  my working life stood me in good stead to handle the pressure and challenges of dealing with the tsunami her medical condition wreaked on our life. Her needs and our new normal became a strategic plan to be developed, researched and implemented. I became knowledgeable about medical treatments, drugs and protocols, created new opportunities, marketed, sold  and promoted brand Chelsea on social media, at events, in the press…it was just like going to work just without any of the benefits.

The Work:Mom balance switched from 90:10 to 10:90 and for quite a while I hardly noticed and then as Chelsea ‘s new normal became normal for all of us, I wanted to get my work life back.

So after a long job search the universe realigned and I found my way back to the other side…I have been back working in the corporate sector since March, consulting and stretching my brain with business challenges and adult conversations and then rushing home to do the Mom stuff again.

As a result there has been little or no time for Facebook, blogs or even for her painting and all the Paintability activity has slowed down to the bare minimum of updates or pictures. And so of course I feel horribly guilty and I worry that I have let her down.

And then to compound matters recently Chelsea got sick and our helper left and two failed helpers later we were left with no support.  For 2 months.

It’s like the Mom Side is testing me for daring to go back to work! 

sorry but App isn’t a verb

Poster seen in an elevator recently which stopped me in my tracks. I rode up and down 5 floors just staring and scowling at it imagining the Good Grief speech bubble inside my head exploding.

I know its my Luddite soul coming out but is it really necessary to eliminate “contact” or “email” or even “use” just because you so desperately want to be trendy and in with the kids while you use the latest fad “applications”.

App means programs or software and to the surprise of many it wasn’t a term invented by Apple.

and it most definitely is not a verb. (yet?)

Love phones and computers but I hate all the “appy” jargon.

App us your comments !!