Wednesday, September 30, 2009


We have been waiting nearly a month to get in with the MND specialist down in Sydney. On Friday we received a call from his office saying a miracle has happened and they had a cancellation for Monday at 12:30 can we make it, so of course we said yes. It was a bit pricey for flights so we decided to road trip. It took us about 13 hours but we made it!!! We were very fortunate to have our friends Steve and Jo down there who gave us a fantastic place to stay (thanks guys).

Dr. Mathew (the specialist) was great and when we met him we didn't know what to expect. A part of us hoped he would say I had been misdiagnosed and a part of us knew it wasn't so. So when Mathew said, "Yes you do have MND" Mike and I were not that shocked. Mathew was able to answer some of our questions.

Mathew looked at my MRI of my brain and you can see the bloody disease clear as day. He also did some reflex tests. I accept his diagnoses what I don't accept is a 5 year life expectancy. He said that he thinks I only have 5 years left I said I can beat that so he up it to 10 max and I said I have God on my side so even if I live 10 years and 1 day I will live longer than they expect, no question about it. Mike said well what about these stories of people living 14, 20 plus years with MND. He said I don't believe they have it and they may have been misdiagnosed.

I will not be seeing him again, there is nothing more he can do for us except answer questions when they arise. He said that I need a diet high in protein and that being a vegetarian would be a bad idea, thank God!!

I am not afraid, God will get us through this. I still have hope, faith, belief. I am in no way angry at God, I know he is not the one who has given me this. As I say to Mike in 5 years I may have limited function but you mark my words I will not be in a wheelchair nor will I be dead!!!

I still laugh, I still have lots of joy. I am in no way a mopey butt. I plan on squeezing every ounce of life out of the next 5 years that I can muster. I am looking at this as a blessing, hard to believe, I think God has given me a gift, he/she is saying "Stacy I am telling you when I want you to come home, now go and do and say all that you need." I have seen 7 year olds die of CF, 15 year olds die of cancer, 2 year olds die of illnesses they can't explain. I feel very lucky to have made it this far, I am also lucky it is not something that will take me in 9 months, like a brain tumor, I at least have time. And time is a wonderful thing.

I think I a staying positive because yes I have a terminal illness however I feel that if God sees fit he will grant me a miracle. Also who knows we may all die in 5 years time, but unlike everyone else we have been livin it up!

So thank you to everyone for your support and keep the prayers coming!

Wednesday, September 23, 2009

The other man in my life~

27 years ago I met a great man, it took me 5 or so years to really get to know him and I liked him so much I kept him around for the next 22! He is funny, supportive, reliable, and very very hugable!! I of course am talking about my Papa Bear who's Birthday is today.

One thing about living in Australia is that I have missed 5 years of birthdays. I wish him the happiest of days (I'm pretty sure he is off hunting at the moment, so he's in heaven) Just wanted to let him know I love him very much and I am sure my mom is spoiling him rotten.

I feel very lucky that my dad is still here with us, a few years back he was diagnosed with colon and rectum cancer. We almost lost him and Mike and I were there with my parents during that time. My dad handled that phase of his life with dignity and above everything else humour. His condition has impacted his life greatly and yet he still gets up, he still gets out there and he still lives his life! I admire him for that and have learned alot from him.
At our wedding I wanted to choose a song for the father/daughter dance that represented how I felt about him. I wrote this in his card last year so thought it fitting to add it here today. Love you more today then yesterday Daddy!

"My Wish"

I hope that the days come easy and the moments pass slow,And each road leads you where you want to go,And if you're faced with a choice, and you have to choose,I hope you choose the one that means the most to you.And if one door opens to another door closed,I hope you keep on walkin' till you find the window,If it's cold outside, show the world the warmth of your smile,But more than anything, more than anything,My wish, for you, is that this life becomes all that you want it to,Your dreams stay big, and your worries stay small,You never need to carry more than you can hold,And while you're out there getting where you're getting to,I hope you know somebody loves you, and wants the same things too,Yeah, this, is my wish.I hope you never look back, but ya never forget,All the ones who love you, in the place you left,I hope you always forgive, and you never regret,And you help somebody every chance you get,Oh, you find God's grace, in every mistake,And you always give more than you take.But more than anything, yeah, and more than anything,My wish, for you, is that this life becomes all that you want it to,Your dreams stay big, and your worries stay small,You never need to carry more than you can hold,And while you're out there getting where you're getting to,I hope you know somebody loves you, and wants the same things too,Yeah, this, is my wish.My wish, for you, is that this life becomes all that you want it to,Your dreams stay big, and your worries stay small,You never need to carry more than you can hold,And while you're out there getting where you're getting to,I hope you know somebody loves you, and wants the same things too,Yeah, this, is my wish.

Happy Birthday Papa Bear!!!!!

Tuesday, September 22, 2009

What I've learned~

I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow.

I've learned that you can tell a lot about a person by the way he/she handles these three things:

1-A rainy day
2-Lost luggage
3-Tangled Christmas tree lights.

I've learned that making a "living" is not the same thing as making a "life."

I've learned that life sometimes gives you a second chance.

I've learned that you shouldn't go through life with a catcher's mitt on both hands. You need to be able to throw something back.

I've learned that if you pursue happiness, it will elude you. But if you focus on your family, your friends, the needs of others, and doing the very best you can, happiness will find you.

I've learned that whenever I decide something with an open heart, I usually make the right decision.

I've learned that even when I have pains, I don't have to be one (:

I've learned that every day you should reach out and touch someone. People love that human touch - holding hands, a warm hug, or just a friendly pat on the back.

I've learned that I still have a lot to learn.

Sunday, September 20, 2009

Moreton Weekend

Our philosophy at the moment is "Carpe Diem" seize the day!(I suggest everyone should try to incorporate that into their everyday life) So when our friends Matt and Sandra invited us to go camping/hard core 4WDriving with them on Moreton Island Mike and I jumped at the chance.

The weekend was beautiful! It consisted of a little of this:

Watching a couple of these while drinking my virgin mojito's.

A bit of this:

Snorkeling through here:

Hanging out with this muffin:

And just enjoying all that was around us.

I only had a few MND reminders through the weekend. Fell over a few times, generally more funny then frustrating. Had a couple sad moments with Mike when realising our futures are going to be a bit different then we imagined. But mostly it was just an amazing trip with some fantastic friends in a beautiful environment. Can't wait to do it again!

Wednesday, September 16, 2009

Your Bank Account

This was sent to me today and it made me smile~ I feel that it is very relavant. Enjoy!

A 92-year-old, little, well-poised and proud man, who is fully dressed each morning by eight o'clock, with his hair fashionably combed and shaved perfectly, even though he is legally blind, moved to a nursing home today. His wife of 70 years recently passed away, making the move necessary. After many hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his room was ready.

As he maneuvered his walker to the elevator, I provided a visual description of his tiny room, including the eyelet sheets that had been hung on his window.

'I love it,' he stated with the enthusiasm of an eight-year-old having just been presented with a new puppy. '

Mr. Jones, you haven't seen the room; just wait.

''That doesn't have anything to do with it," he replied.

"Happiness is something you decide on ahead of time. Whether I like my room or not doesn't depend on how the furniture is arranged ... it's how I arrange my mind. I already decided to love it. 'It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with 20 of the parts of my body that no longer work, or get out of bed and be thankful for the ones that do."

"Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy memories I've stored away. Just for this time in my life. Old age is like a bank account. You withdraw from what you've put in.

"So, my advice to you would be to deposit a lot of happiness in the bank account of memories!"

Remember the five simple rules to be happy:
1. Free your heart from hatred.
2. Free your mind from worries
3. Live simply.
4. Give more.
5. Expect less.

Thank you for your part in filling my Memory bank. I am still depositing!

Monday, September 14, 2009

From little things big things grow~

So Mike and I were bestowed with a huge honor this weekend!! Our dear friends Tawnya and Brad have told us we will be the God-Parents of their first baby, little Audrey, who will join our world on November 2nd! We are thrilled to say the least. This means so much to me, and I am so excited to meet my little muffin in December.

This weekend was a lot of fun, Friday I went to a Naturopath to cover my bases and see what she had to say about MND and how to get the best out of life and my health. That was interesting and I will post about it soon. But I know I need to be open to new things. I am now a vegetarian, more to come on that. The conversation with the Naturopath went a little something like this:

Nat: I feel that you should become a vegan.
Me: Not going to happen!
Nat: What???
Me: Not going to happen, no way.
Nat: Ummm, OK, What about a vegetarian?
Me: My favorite food is Hamburgers!?!?!
Nat: So is that a no?
Me: Fine but can I eat meat occasionally?
Nat: I wouldn’t recommend it.
Me: Do veggie burgers count?

Needless to say after that I was a bit tense (: Good thing Saturday I was booked in for an hour massage and facial, I felt like I deserved it. It was very relaxing and a great way to spend the morning. If you have never had a facial I demand you go out now and get one! I’ll wait…… See!! Love it!!!

Saturday night I had my friend Laura’s 21st. That’s right some of my friends are that young! It was a lot of fun a great to catch up with friends I hadn’t seen in a while.

Sunday was spent catching up with friends and family on Skype. Mike and I went out to a lovely breakfast and then went on a little adventure that led us to Mt.Cootha’s Botanic Gardens. Beautifulllll!! Just what the doctor ordered!

All in all a great weekend!

Thursday, September 10, 2009

Little Reminders

I believe in reminding yourself everyday about what is important to you be it God, friends, family, ect.. Little affirmations to get you through the day. I thought I would share with you three little reminders that I look at everyday that have really helped me thus far.

First is a mug that was given to me a few years ago by my dear friend Tawnya. Little did she know how much it would mean to me. It is a bright orange mug and on it says "Friends are God's way of taking care of us" now before all this I thought wow what a great quote but little did I know I would be living it. Over the past month the friends and family that have surrounded Mike and I with their prayers, love, and positive energy are people who God sent to take care of us during this time. Many times Mike and I look at each other and even now going through this we still say "Wow, we are so blessed." I love looking at my mug and reminding myself, I am not alone in this.

Next is a beautiful bracelet that I received last week in the mail from another little angel "Boo" my friend Brianna was going through a tough time a while back and during that time she came to own this bracelet on it says "Expect a Miracle" in Boo's case the miracle was granted and so she sent it on it's way to perform it's next Miracle! I haven't taken it off since, it is on my right hand (we refer to that hand as gympie) and it is were all the symptoms started. I look at it everyday and think, "One day gympie you will work again" It sounds silly but it has given me allot of strength and hope and reminds me to never give up!

Last is a new addition it's a tattoo that Mike and I decided to get together. The tattoo says "Dei Gratia" which is Latin for "By the Grace of God". For us this has multiple meanings, we met by the Grace of God we have been together for over 8 years, we have been faced with and have conquered challenges in the past, all by the Grace of God. At the moment it reminds us that with God anything is possible plan and simple. We both got it on our left wrist so it is always staring us in the face, even when I have my down days and think why is this happening I look at that tattoo and remind myself God has a plan and I am part of that, something greater than myself.

These reminders are keeping me strong and I am grateful for that.

Thanks again for the support.

Tuesday, September 8, 2009

The month my life changed forever~

Well I was not sure what I was going to do with this blog but now I know. I am going to use it to tell everyone how I beat ALS- well I haven't yet but I have every intention of kicking it's ass!

Last month I was diagnosed with Motor Neuron Disease by two separate Neurologists and at this time am waiting on an appointment with a specialist in Sydney for a 3rd opinion.

I think unless you have had the experience in your life of being told you are going to die and you are only 27 you may not fully grasp the range of emotions one can feel.

For my husband and I our worlds droped out from under us, what about the 5 kids we planned to have, the trips around the world we would take over the next 50 years, the anniversary's we were going to share, not to mention the life we had planned around the time we assumed we had.

Well I am here to tell you I have no intention of giving up or giving in. I have a strong faith in God and PMA (positive mental attitude) I believe we all have a journey and a purpose and even though I may not like or agree with what mine is, I plan on taking it and hopefully learning and growing from this.

I am hopeful and I do believe I will make it through this with the help of friends and family. I am not so blind as to not see this is going to be one hell of a journey, but what choice do I have. I am not going to allow myself to be negative, I am not going to allow myself to give up. I hope that when I am faced with a challenge I will step up and over it. I will draw strength from those around me and I will NOT GIVE UP!!!

I have so much to say but will leave it there for now and leave you with a quote I stumbled upon today.

"Life can only be understood backwards; but it must be lived forwards."- Soren Kierkegaard

Till next time~