“This is my wish for you: comfort on difficult days, smiles when sadness intrudes, beauty for your eyes to see, faith so that you can believe, confidence for when you doubt & enough love to complete your life.”

July 22nd, 5:47pm - I receive this letter from my Dad. 

It is his view on watching me battle Graves Disease for the last 3 years. 

Please take a few minutes to see how an illness affects not only the person diagnosed, but the whole family.

Here is an a rare look at an open letter from someone who has been watching from the other side of the hospital bed since day one. 

(Please read & share with anyone battling an illness!)


Graves Disease:

The Parents Perspective

 "Rayanne you have chronicled what you have gone through with Graves Disease brilliantly over these past few years  - and with thousands upon thousands of ‘reads’ of this blog I’m positive you’ve made a huge impact on others all over the world. 

However, after thinking about this a lot over the past while, I think it’s time you added a “parents perspective.’   

As such I hope my/our (wife Kim) observations can also be of assistance to readers of Rayannesthoughts.blogspot.ca too.

First off it’s important for parents, and family/friends, to watch for when things are ‘different’ in your life.   For us it was when your world started to turn ‘backwards’ for you. 

You were hot when it was cold.  You were cold when it was hot.   

You couldn’t sleep at night  and you couldn’t wake up during the day.   

Your mood changed – and you just weren’t that fun, perky, positive, upbeat girl we knew you to be. 

So we got that first test at the University of Alberta Hospital. 

I’ll never forget when you walked out and said   “Dad…I’ve got Graves Disease!” 

I said… “what the heck is Graves Disease?”   

I’m a relatively in touch and semi intelligent human being and in my six decades on earth I had never heard of it – so when we Googled it and started to read the symptoms we started to put it all together. 

What went on for the next two years was simply horrendous – not only for you but for the entire family.

The one thing about Graves, as you have noted in your blog, it’s 100% different for every single person who has it.   

Some folks have some minor problems and can easily adjust their life while others – like you – continue to have one problem after the other – and just when we think we have one thing licked Graves Disease strikes again and away we go for more surgery, pills, and other lifestyle changes.

 

There are several very scary parts about Graves.  We can be talking normally at noon – and then less ten minutes later I get that “Dad call an ambulance” thing so we call 911 and you’re rushed to the hospital where they tell us your heart has been racing to approx 200 beats per minute. 

Next was the various surgeries and the painful recovery process. 

 

As a Father your children are children forever – well into your twenties you are still seemingly a five year old when something ‘bad’ happens to you….and being in the hospital recovery room when they brought you in after the gall bladder; thyroid; and eye operations are as painful a memory as one can possibly imagine.

The eye surgery alone was extremely hard on us – and seeing you blindfolded, in pain, in bed hours after that surgery will be ingrained in my mind forever.

Yet, the next day when we came back in, to have the Nurse say “I can’t believe your daughter.  She’s one of the nicest people we’ve ever had in here.  So positive.  So strong!” filled me with pride unlike anything you can imagine.

In discussing the one going problems with Graves Disease with you ‘nobody’ can fully understand your motivation until you lay it all out. 

“Dad many people have it worse than I do – I want to be a role model and help others!”

“Dad there’s no accurate information on the internet.  It’s too wide and varied.  I’m going to write a blog and tell others what I go through to help them cope with Graves.”

“Dad, I want to start a Foundation and help others if they need financial assistance.  I went through hell trying to get EI.  They just don’t understand.”

As you’ve chronicled in your blog trying to get assistance through EI was near impossible.  Some of the things they told you to do was truly unforgiveable.

“Sell your car.”  

“Are you applying for a job?” 

Answer:  “No – I just had eye surgery.  I can’t even see let alone drive or work!”

Just so frustrating to know people who ‘use’ EI because they DON’T want to work versus somebody who WANTS to work – and can’t.

For other parents, the symptoms of Graves can hit at ‘any’ time – and you have no lead time what so ever so the impact on work is obvious.

Thank goodness you have such great people at YESS and Sun Media who truly ‘understand’ what you go through and help you work around the challenges related to Graves Disease.

I could go one for days about what we all have gone through in this family in trying to be as much help as possible to you and what you’ve gone through over these past few years.

Your sister Lauren has been a ‘rock’ throughout this whole process and was there for you/us each and every time you needed help.  She too cried her eyes out several times in the Hospital parking lots watching you endure these surgeries.

Mom doesn’t say much about it – she’s the quiet type – but the stress on her too has been huge and she literally didn’t eat for a week when you were in the hospital for the operation/recovery process more than once.

(*Rayannes note: My parents have been to almost every one of my 50+ doctors appointments!)

Me.  I try to be upbeat – positive – and ‘there for you’ throughout the entire process.  My quest to ‘learn’ has been immense.  My job is to recognize when you need a helping hand (and the Bank of Daddy because you couldn’t do this on your own easily) – and I cannot tell you how damn proud I am of how you have ATTACKED Graves in the media, your blog, and throughout your chats with others on Facebook, Twitter, and face to face.

Endless pills.  Redoing your entire dental work.  Eyes that bulge out.  Heart beating erratically.   Boyfriends who bailed on the 3^rd date after you tell them you have Graves Disease. 

These are now the ‘new normal’ – yet day after day your focus has simply been on helping ‘others’ which is an admirable thing to do for sure.

As I ‘constantly’ tell you "keep positive"  – I admire you  so much – and I hope in some way a ‘parents perspective’ will add some value to the tremendous advice you have been featuring in your blog.

To all that read this – Graves Disease is not a one person disease.  It’s a family disease and although we don’t physically feel the pain that Rayanne does we struggle every day of our lives with the ‘whats next’ we will face with this awful disease.

So Rayanne – never forget that your sister Lauren, and your Mom and I, are going to fight just as valiantly as you do to beat Graves Disease.

One thing I know for sure. 

You will win!

Love

Dad