When what you prepared for isn’t what’s happened

I know it seems like forever since I’ve posted. Life has been busy with Patrick quite ill. He is on his 2nd admission since January and we are now heading into week 7 of this one. He is not looking at being able to go home till some time after the end of May.

Last year, after Patrick’s Wish Trip and before Christmas, I finally did something I should have done years ago. I created a ‘fan page’ for Patrick on Facebook. It was an easier solution for people who follow him and see what he’s up to and how he’s doing.

I just wanted to post this quick update that we are still here and hanging in. Patrick has been quite seriously ill. All the updates have been posted on his page if anyone would like to follow along.

https://www.facebook.com/notbythebooks

Watch for more…thanks everyone for your support!

Have an awesome weekend!!

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Easter Seals Helps Children with Disabilities – You can too!

With 3 days to go till we do our rappel down One London Place to raise money for Easter Seals, we are falling a little behind on our required goal to participate.

Take a look at the Drop Zone website for more information about all the different drops that have happened and yet to happen!

You can take a look at some photos of previous Drop Zones!  Some amazing photos!

DSCN1162

That’s ME on the right last year coming down the building 🙂

Please support Easter Seals and help kids with physical disabilities succeed!

Everyday people are getting out of their comfort zones for Easter Seals kids!

The 3rd Annual Easter Seals Drop Zone London will take place Thursday, September 12, 2013 challenging participants to raise a minimum of $1,500 in pledges in order to rappel down the 26-storey building at One London Place, 255 Queens Ave. Everyday people will become “Superheroes” for a day by raising much needed funds for kids with physical disabilities, and challenging themselves in an exciting event that is both safe and fun!

Please support Easter Seals and help kids with physical disabilities succeed!

Having always appreciated and been grateful for Easter Seals and their support for the many things my son Patrick has and uses.

We have built a team this year and want to return the favour so to speak and do our best to raise the minimum $1500/pp (and more if possible) and do our part in raising money for this amazing organization!

This will be my 2nd time doing this, and a first for Mark & Dave on our team, but being able to support something that does so much for so many other children/families, it will be our honour to participate!

Please help us reach the minimum donation goal of $1500/pp to be able to participate in this wonderful event and opportunity to give back!

Thank you so much for helping us be able to participate and give back to something so great!

Here is the link to pledge online.  Ask/Share with your friends, family, bosses & co-workers!  We need your help!!

Thank you so much!!

One week to Drop!

Training is tomorrow!! We become super heroes NEXT Thursday and rappel down 26 stories to raise money for Easter Seals!

They have been such a great help for Patrick over the years and we need this program to be able to stay around to help ALL families with children with disabilities!!

This means a lot to me!

Please don’t hesitate!! You can donate up till next Thurs!  PLEASE help me reach my goal so I can participate next week!  Any amount will help!  Donate online by clicking the link below or writing a cheque made out to Easter Seals Ontario.  Cash and email money transfer is acceptable as well.  Email me for details.

CLICK HERE TO DONATE!

Thank you so much!

Come on out to One London Place next Thursday and watch all the Super Heroes do their part for Easter Seals!!

Hugs my friends!

Heroes in the home

What is your definition of a Hero?  Do you know any Heroes?  Do you consider anyone a Hero?

Have YOU ever been called a hero?

What a way to start off this post asking so many questions.  Wait, I have more!

Are you a caregiver?  A Mom?  Do you look after a family member or friend?  If so, YOU are a Hero!

There are different definitions of a Caregiver.  Wikipedia has an interesting definition of Caregiver:

Carer (UK, NZ, Australian usage) and caregiver (US, Canadian usage) are words normally used to refer to unpaid relatives or friends of a disabled individual who help that individual with his or her activities of daily living.

The words may be prefixed with “family” “spousal”, “child” to distinguish between different care situations, and also to distinguish them definitively from the paid version of a caregiver, a Personal Care Assistant or Personal Care Attendant (PCA). Around half of all carers are effectively excluded from other, paid employment through the heavy demands and responsibilities of caring for a vulnerable relative or friend. The term “carer” may also be used to refer to a paid, employed, contracted PCA.

The general term dependant care (i.e., care of a dependant) is also used for the provided help.[1] Terms such as “voluntary caregiver” and “informal carer” are also used occasionally, but these terms have been criticized by carers as misnomers because they are perceived as belittling the huge impact that caring may have on an individual’s life, the lack of realistic alternatives, and the degree of perceived duty of care felt by many relatives.

More recently, Carers UK has defined carers as people who “provide unpaid care by looking after an ill, frail or disabled family member, friend or partner”. Adults who act as carers for both their children and their parents are frequently called the Sandwich generation.

A general definition of a carer/caregiver is someone who is responsible for the care of someone who is mentally ill, mentally handicapped, physically disabled or whose health is impaired by sickness or old age. To help caregivers understand the role they have taken on, “Next Step in Care”[2] outlines the following:

You are a caregiver if you:

  • Take care of someone who has a chronic illness or disease.
  • Manage medications or talk to doctors and nurses on someone’s behalf.
  • Help bathe or dress someone who is frail or disabled.
  • Take care of household chores, meals, or bills for someone who cannot do these things alone.[3]
It’s my Duty Isn’t it?

With an increasingly aging population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers as well.

What is YOUR description of a Caregiver?

As caregivers, I don’t think we give much thought to what we do.  We just do it.  It’s natural, it’s what we do.  We become masters of multi-tasking, juggling appointments, preparing lunches and making meals, transportation, cleaning, laundry and more.  We are teachers, doctors, nurses, chefs, handyperson’s, therapists, advocates/speakers, to name a few, all wrapped into one.

When was the last time someone complimented you on everything you do?  When was the last time someone thanked you for all you do?

When was the last time someone called YOU a Hero?

It’s not always easy or comfortable to hear those words, because to us it’s what we do all the time.  It’s our life!   It’s still feels good to hear them though, when we do.

Often people ask me; ‘How do you do it?’  My response of course is, ‘Do what?’  They reply;  ‘Do everything you do with/for your son, and all the things you are involved in.’  What is our usual reply to a scenario like this?  This is my life, I just do it.  Just like you do everything you do in your life and for those around you.

Being Mom to a child with disabilities, we face challenges that many others don’t have.  We all have different challenges in life we go through, but some are more specific, I’m sure you understandwhat I mean.  I hope you do.  We don’t look for pity.  We don’t want you feeling sorry for us and all we go through.  We are proud, just like you!   It’s difficult for many of us to ask for help and/or support for whatever it is we might need.  Although there are days we think we must be superman, we know we aren’t.  It’s tough for us to take time for ourselves, but we learn, slowly and it’s something I don’t think any of us perfect.

A week or two ago, one of my son’s workers asked my permission to nominate me for an award through CCAC (Community Care Access Centre).  I wasn’t sure what it was about or for, but she needed my permission to submit my name.  Since things have been so busy with Patrick the past month, all I got was that it had something to do with being a caregiver.  I gave my permission and honestly didn’t think about it again, till this past Friday when I received a letter in the mail from CCAC.

An initiative of South West CCAC and the healthline.ca

Congratultions!

We are pleased to inform you that Michelle S. has nominated you for a

HEROES IN THE HOME Caregiver Recognition Award!

There is a special celebration  on October 20th to receive this award.

WOW!  How sweet of Michelle to think so much about me to feel I would give justice to and deserve this recognition.   I really am blessed!  The girls who come work here, love working for/with Patrick and I.  We become like family and care for and about each other.

How amazing someone thinks of me as a Hero!  It’s an indescribeable feeling.  I’m just me after all, always am, have been and always will be.

I am very grateful for everyone in our life who loves and supports us.  I am grateful for all the things, whether big or small that anyone does with and for us. I often wonder how I could ever repay everyone for all the kindness, love, support etc that they have shown us.  It truly is overwhelming some days and I don’t think I could find enough words to express it.

For tonight though, I will say thank you!  Thank you to all of you!  May you know you are loved and thought of fondly often.

For tonight, I will check on Patrick before I crawl into my bed, and fall asleep knowing that someone thinks I’m a Hero.  And I will let myself have warm fuzzy feelings, even if it’s for a short time because tomorrow I will wake up and do it all over again.

Let me leave you with one more thought…

YOU are a Hero too!!