Medical Parent · Out of the Mouth of Babes · Professional Life of a Parent · Yellow Brick Road

Have you seen her?

A decade ago, is the last time I saw my original daughter. On this day, she had wrangled my husband into going puddle jumping because March of 2009 was a warm month and it was rubber boots and umbrella time.

Her brother had an ear infection and a cold which seem to have been a constant issues in his life back then until we discovered that he was intolerant to milk and then it all stopped.

It was the last time, that I saw that little girl that couldn’t see over the grocery cart and still insisted on pushing it. It was the last time I saw the little girl that told me off – No, I can do this – when I tried to help her.  It was the last time, she insisted on changing her brother’s diaper or feeding. It’s the little girl that no one ever talks about.

I love my daughter and everything she’s accomplished but I sometimes find myself dreaming about my first daughter who’s life was suddenly interrupted by acute necrotizing encephalopathy.

 

Hugs your children everyday xxox

 

Capture

Advertisements
Medical Parent

My other other Job – Patient Advocacy

Don’t ask me where I find the time. Don’t tell me you don’t know how I do it. I don’t want to hear that. Tell me you will help me, tell me you know someone that can help me. Tell me that it’s making a difference even if it’s just in your own world. That will fill my heart and soul, knowing that a difference no matter how small is being made.

This is a true core calling for me. It does not need justification,  or praise.  It’s an essential part of life and pioneering this with Kim, my partner and friend is a revolution of it’s own making.

Join me and let’s keep the momentum moving in a movement to create awareness of an underdiagnosed disease that as taken far too many life in this modern age.

***

Get Ready to join the #1stANEAwarenessDay #may #countodown? #ANECommunity,is honored to be joined by Universal Mankind  to help us lead this advocacy campaign. ANE International  shed a light on this #RareDisease.
We are #2 months away, but we better get. Let’s rock all together!

 

 

You can follow us at:

FB: https://www.facebook.com/ANEInternational/

Twitter:  https://twitter.com/aneinternationa

LinkedIN:  www.linkedin.com/in/ane-international

Instagram: https://www.instagram.com/aneinternational

Please visit us at http://www.aneinternational.org

 

Good Side of Life · Medical Parent

Happy Mother’s Day #NOTJUSTAMOM

My dear and amazing friend, Eleonora Passeri  tells me that the video, you will see below is all mine…  her words: you are amazing, I just collected and pull together your beauty and strength!

My friend is quite humble, it takes a great amount of perception and motivation to be able to pull all of these resources together and to celebrate a global Mother’s Day. For families, she has never met in person. She works diligently & selflessly on our projects.

Here’s what she wrote:

Today I am really excited. Here is the final “product” of the Mother’s day project I have been working on and asking you for pics.
I will be make a post tomorrow on Universal Mankind and my other socials, BUT I wanted to share it NOW with you!
Hope you do not mind if I have used your pics in this way, but I thought music and images would say much more than me and my poor brain.
I got really emotional when I saw it earlier this morning and it was very “moving for me work on that yesterday” for obvious reason.
Carlotta Masci picked the music based on your images.

Hope you are all fine with the youtube share…I got the idea on Friday night while I was working on TSC music project.

Dedicated to you all, you really changed my life.
Amanda Riggs Rackerby Anne Lawlor Chris McCarty Rachel QS Kim SmithArianna Calzolari Gina Zanik Benita Penfold Marie James Veronica Popa

A special thanks to the artists as well Mara Pianosi Alessia TorregrossaSergio Ziggiotto Silvia Rosati @Camilla Gubbiotti and a super special thank you to Carlotta Masci Pianist!

 

Medical Parent · Professional Life of a Parent

ANE Awareness Countdown

 

31357680_2027608047502096_8578650463077924864_n
ANE International COUNTDOWN
Ready to join the #1stANEAwarenessDay #April #countodownUniversal Mankind is honored to join the #ANECommunityRachel, and Kim to shed a light on this #RareDisease.

Visited the ANE Website at : http://www.aneinternational.org
We are less than 3 months away, but we better get. Let’s rock all together!

This month we decided to use a butterfly #watercolor done by our great #artist and #ANEsupporterMara Pianosi and her Mara Pianosi fb page!
Join us, become an ANE supporter you too! 😊😉☺️

#universalmankind #drpasele #awareness #parents #specialchildren#raredisease #research #science #patients #artandscience#RareSpecialPowers #rareawareness #communication#GetTheScientificFacts

#Instagram @drpas84ele
#Twitter @drpas84ele @aneinternationa
#Pinterest @drpas84ele

Source: https://www.facebook.com/universalmankind/

Good Side of Life · Medical Parent

Wow!!

I can’t believe that it’s May already.

Thank you for tagging along with me in April.  I’ve had a busy month and I can’t wait to tell you more about it.

My first big news is that I have left the major corporate world!!

pexels-photo-323705.jpeg

What a relief! I can’t describe how freeing this has been for me.

I’m in my second week and by the end of the day, my head is spinning from everything that I’m learning but nonprofit in a small office of 4 is really an experience for me.

Having said this leaving a company that you’ve been at for 15 years takes a lot of courage and readiness to leave friendship behind.  It wasn’t an easy decision but it was a necessary one for my own sanity, needs and desires.  I said goodbye to a lot of people and lost 30 minutes on my commute to world and move to a different cultures where I am feeling appreciated, respected and people are genuine.  It’s still a big adjustment since I doubt a lot of my own natural instincts and questions a lot of work that I need to do to be sure.

My brain is loving it. I’ve come to understand that our mind crave learning and this year for me, I think will be a big year of learning.

I may not be posting as much in May but I will do my best to keep it interesting and maybe in June, I can create another discovery challenge for us to enjoy. The summer is so full of opportunities.

Stay tune…..

 

Good Side of Life · Medical Parent · Professional Life of a Parent · Uncategorized

Audiobooks

250px-Girl_listening_to_radio.gifI don’t remember and age when I wasn’t reading. Even on our busy farm, I always found time to read books.

I remember hunting yard sales and flea markets for books at the time it would have been Sweet Valley High and later, Stephen King Novels.

It’s natural that my kids have been exposed to reading at an early age. It was one of the things that I was consistent on at a very young age to sit with them and read and re-read their favourite stories from Chicka Chicka Boom Boom, The Big Red Barn or Tractors.

As they have become older so have their taste in books and with so many other distractions reading a novel seems to take so long. I took us 3 months to read Wonders. My daughter can devours her age appropriate novels in a weekend, my son is no such a strong reader. However he loves stories but reading not so much.

c406e891ea46b58b81d9629bbed29b9aWe are now at the age of listening to audiobooks, if you step into my house on a week day, it’s not abnormal to find us all quietly working on something while listening to an audiobooks, the latest has been the Magnus Chase series by Rick Riordan.

I find that listening to books, has helps build their vocabulary and added extra resource to their creative mind.

The neat thing about audiobook is that you can listen to them will you are driving, cooking, cleaning and being creative.  You get to enjoy a story telling and you can even find audiobooks at your library theses days. It’s totally amazing.

Personally,I listen mostly to self-help book because reading them sometimes makes me sleep and I don’t find that I absorb the content as well.

So get yourself an audiobooks and get listening.!

Have a great one.