Thursday, December 31, 2009
Things are going well up here in Montana. Christmas is in the bag, Stacy enjoyed the familiarity of it and I enjoyed the exotic experience of a Christmas in the cold with snow on the ground.
Over the weekend we ventured out of town for 3 days to a cabin out in the wilderness. Stacy's college roommates - Liz, Kelly and Shannon made up the group of 5 who enjoyed the remoteness of Liz's mother Connie's ranch.
Check out the clips for a sense of the experience.
Lots of love from Stacy and I, we hope everyone is having a great holiday season.
Wednesday, December 23, 2009
Mike here on the blog.
Stacy and I are in Montana and doing well. Stacy is going to get on and write more soon. I'm just here with a brief update and a little video footage as well.
We are having a very good time over here. Lots of action in the 'visiting with family and friends' department.
We hope everyone is well.
Lots of love
Mike and Stacy
Monday, November 30, 2009
Most of my adventures around the world have been defined by physical ability. I backpacked and hitch hiked my way through New Zealand carrying a bag that was way to heavy, I built houses in Africa with my hands, I cycled my way through Thailand and Cambodia, I have swam in numerous oceans, climbed countless mountains, looked for adventure everywhere I went. I snorkeled the Great Barrier Reef, went white water rafting and jumped out of a plane at 14,000 feet all in my 25th year. This is who I am, this is how I define myself.
I have always been fiercely independent and prided myself on the strength of my body the things it could do. I was always the strongest, the one who could open that horribly tight lid, the one who could lift just about anything. I loved having a firm hand shake. This was me these were my abilities.
I am struggling with who I am becoming and letting go of who I was for so many years. I hate needing help, I hate being reminded everyday of the things I can no longer do by the lack of my ability. I hate that I can't read my favorite magazine "Shape" because it reminds me of all the things I can't do. I hate that when I watch a movie all I can think is how is that woman able to walk in those heels, get that outfit on, carry that baby? It is hard for me to fathom I have run my last race, or lifted my last weight. Will I ever be able to write properly again or cut my own nails, will I ever do another jumping jack, will I ever get to be a mom? These are my struggles and at the moment they feel very heavy.
I know I have other attributes and that in time the pain of my loss will ease but how do you change who you are or rather who you were?
This too shall pass~
Monday, November 16, 2009
Mike and I have been overwhelmed by everyones generosity, we are continually reminded how great humans can be to each other.
On Saturday we went over to our friend Margie and Mike's house for lunch. They live about 20 minutes outside of the city in what seems like a forest paradise. Margie made an amazing lunch and we had a lovely time exploring their property.
On Sunday I met up with my friend Sim for coffee, then my mother-in-law came over to help us clean our house. What a lovely lady! We then went over to our friend Gabby's for a swim.
What a great weekend, busy but great.
FYI- I don't smoke, nor do I recommend it for pregnant women. I do however recommend hot dogs.
Monday, November 9, 2009
It seems to me that there is an aspect of human nature that violently and instinctually resists pain and suffering in other people.
When global disasters such as the 2004 boxing day tsunami, or the bush fires in Victoria earlier this year occur individuals and communities rail against the injustice of the situation and find ways to make a difference.
I think it must be about trying to keep a balance in our little worlds. If something terrible happens and makes us feel like evil or injustice are dominating things then in order to feel good about life people take action to correct the scales.
We donate money, write notes, give hugs, coordinate events, hold vigils, advocate for change and share thoughts and feelings.
Stacy and I are facing a challenge and a personal disaster with our motor neuron disease diagnosis. Our experience has been that individuals and communities close to us are driven to attempt to redress this imbalance.
On Saturday the 31st of October our great friends Tony, Genevieve, Mat and Sandra ran a frisbee tournament called the Big Sky 9's. http://bigsky9s.blogspot.com/
This frisbee tournament involved 14 teams, 140 players, 10 hours of frisbee games and some concerted fund raising efforts. There is plenty of information on the Big Sky blog site listed above including some figures of the financial success of the day.
It was an excellent day and was a wonderful outpouring of love from the frisbee community to Stace and I. We are so grateful to the organising team, the volunteers who helped on the day and everyone who came to participate as players and spectators.
It was an amazing day, plus Stay's Allstars won the final.
On Sunday the 8th of November our little friend Leila Hutton organised a fun run fund raiser for Stacy and I. In Leila's words she had the idea for a fun run, expected that maybe 40 people or so would get involved and it would be a nice little day.
The reality was that it was a nice little day involving around 200 people, multiple donated raffle prizes, a delicious home cooked breakfast and 3km of hard but enjoyable yards around the Roma St. parklands.
Both events were always going to be successful as they were excellent positive events that Stacy and I could focus on and take strength and comfort from. What none of the organisers or Stacy and I could realistically had imagined was the quantity and magnitude of people's generosity.
On both of the fund raising days Stacy and I were overwhelmed by the dramatic gestures of kindness displayed by people who wished to help out in this difficult situation.
The events were amazing as a tool for easing the difficulties that Stacy and I will face over the coming time, and as an act of human kindness guided towards creating balance in our little world they were both incredibly successful.
Thank you to everyone who participated in the events. Thank you to all the people who made donations for raffles and personal donations to us. Thank you to Leila, Gen, Tony, Mat and Sandra for coordinating the events and providing an opportunity for people to express their support.
To everyone who has been so loving to Stacy and I, thank you very much. We feel like we are wrapped up in the community and very supported.
Tuesday, November 3, 2009
About 3 weeks ago I got a call from Brad who is the husband of Tawnya, my best friend since high school. Mike and I are the God-Parents to Audrey, their soon to be daughter. Because we live so far away I didn’t really get to be a part of Tawn’s pregnancy. I really wanted to see her pregnant, but it just didn’t seem like that was a possibility until Brad offered to fly me home to surprise Tawn at her baby shower. I couldn’t believe his generosity and of course accepted his offer.
I flew into Montana on a Saturday night and the baby shower was on Sunday afternoon. It was the best surprise ever!! I have a video of it that I will post once it is downloaded. I was only home for a whirlwind week, but it was so worth it. I was able to spend time with my family as well as help Tawnya with some preparations for the baby. It was a very special time and cannot thank Brad enough.
Fast forward to this weekend, on October 28, 2009 Audrey Rae Gilchrist was born!! I was sooo excited! Mom and baby are doing great. Then on November 1, 2009 my friend Lynsey who was due November 21st gave birth to her daughter Tavia Lili Gayton! I cannot believe both my girls came in the same week! I am so happy for both of them and thank God for their safe delivery.
Oh man Mike and I have had a huge weekend! I will post all about it very soon.
I thought I would leave you with a little preview. First picture is Tavia Lili and second is Audrey Rae. Soo cute!
Friday, October 23, 2009
Some of the things I took for granted:
Walking, sounds corny but it is amazing how much talent it actually takes.
Running, I only started running last year and really started to appreciate it. I see runners now and it makes me sad sometimes I cry.
Getting dressed. Who knew buttons, zippers, bras were so difficult. Thank God for my husband or I would be going commando in track suits everyday.
Showering, fixing your hair, brushing your teeth, writing, typing. All things I never thought twice about, now I wish I would have appreciated them more.
One thing that still frustrates me is opening doors, jars, packages. My mind is willing my fingers to just turn the bloody lid and my fingers are acting like selfish little two year olds saying " I don't want too!" Man they are so naughty at times. I think a lot of the breakdowns I have had in front of Mike are always about a jar. Who would have thought.
I am staying mostly positive but I do get sad sometimes and when I get sad it is usually because of these things. When did car doors get so heavy? Everyday it seems I am faced with a new obstacle, some days I say to God "Enough already!" other days I say "Is that all you got!" I have had a bit of a "Why me" past couple of days. I know this will pass.
I'll be OK (:
Thursday, October 22, 2009
Honoring Everyday Life~
We all know someone who keeps plastic covers on his or her couch in order to protect it. The irony is that many of these people may live their lives without ever having actually made contact with their own furniture! This is a poignant and somewhat humorous example of the human tendency to try to save things for special occasions, as if everyday life wasn’t special enough to warrant the use of nice things. Many of us have had the experience of never wearing a particular piece of clothing in order to keep it nice, only to have it go out of style in the meanwhile.
It’s interesting to think of what it would mean to us if we let ourselves wear our nicest clothes and eat off the good china on a daily basis. We might be sending ourselves the message that every day we are alive is a special day and a cause for celebration, and that we are worth it. There is something uplifting about treating ourselves to the finest of what we have. It is as if we rise to the occasion when we wear our best clothes and set the table beautifully, as if for a very special guest. We are more mindful of where we place things, what we are eating, and who is with us. Using the good china, eating in the dining room, and taking the plastic off the sofa might be an invitation to be more conscious of the beauty and grace inherent in our everyday lives.
If there are things you’ve stashed away for a special occasion—a bottle of special wine, a gorgeous pair of shoes, an antique lace tablecloth—consider taking them out of their hiding places and putting them to use tonight, just because you are alive now to enjoy them, and that’s a great cause for a celebration.
Friday, October 9, 2009
I have to say my first day back in the pool was a bit depressing. I didn't know what to expect ability wise, so I aimed to do 1000 meters. When I started to swim I found I was focusing all my attention on my right arm (gympie) how she couldn't quite get all the way out of the water, she couldn't pull. I, to say the least, was getting very frustrated and feeling a bit down, it was one of the first times it really hit me that this is all happening. I was so used to swimming coming easy that it was a real shock to the system. Then I pulled my head out (as my husband would say) and said to myself "Why are you only focusing on what is not working? What about the things that are!" After that I thought wow, my left arm is still doing great, my kick is strong, and my breathing is the same as it always was. It's amazing how strong the mind is and how it can dictate our feelings. I am really working on the PMA (positive mental attitude) I am certain it will see us through this.
I went two more times this week, each time with my friend Richard who is hilarious and almost drowns me because I am laughing so hard and lose all control of my body. It was great to have someone there. I feel that I look ridiculous in the water, Richard assured me I looked normal so that was a relief.
I will definitely keep swimming, I am sure I will keep getting stronger. Thanks for all the love and support!
Friday, October 2, 2009
I stumbled upon this today and thought it was fitting:
or you can smile because she has lived.
You can close your eyes and pray that she'll come back,
or you can open your eyes and see all she's left.
Your heart can be empty because you can't see her,
or you can be full of the love you shared.
You can turn your back on tomorrow and live yesterday,
or you can be happy for tomorrow because of yesterday.
You can remember her only that she is gone,
or you can cherish her memory and let it live on.
You can cry and close your mind,
be empty and turn your back.
Or you can do what she'd want:
smile, open your eyes, love and go on.”
Love you forever and always~
Wednesday, September 30, 2009
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
Tuesday, September 22, 2009
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
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
Hanging out with this muffin:
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
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
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!
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
Tuesday, September 8, 2009
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~
Thursday, August 13, 2009
One year ago today I married my best friend, mentor, playmate and my greatest confidant!! I know looking back that it was one of the greatest decisions of my life. He has helped me to become the person I am today.
Through thick and thin he has stuck by my side for the past 8 years and I cannot imagine traveling this journey without him. What I have realised in the past year is you can have a full and eventful life with someone without being that persons entire life.
Mike you are my husband, my rock, my happiness! I love you with everything I have.
Looking forward to the adventure ahead!!!!
Thursday, August 6, 2009
So last week at this time I had just returned home from a trip to Asia. Ohhhhhh how different a week can be. I had such a great time! I met up with my best friend Liz in Bangkok and then we did a week bike trip from Bangkok to Angkor Wat in Cambodia with a company called SpiceRoads.
Check out the trip we did here: http://www.spiceroads.com/cambodia/bangkok_angkor
This is the first bike holiday I have ever done and am really glad I did it however it most likely will also be the last. Something about a sore butt, getting up early, and physical exertion just doesn't scream Vacation.
I saw some amazing sites, got chased by wild dogs, explored spectacular ruins, biked over 300km's, had two snake experiences- one in our room, ate a silk worm, saved a child from drowning, had a ton of massages, spent an entire week lying on a beach while drinking Pinacoladas, laughed everyday, saw a ladyboy show and had an all around good time.
Wednesday, August 5, 2009
I have been following a few blogs, most are girls my age, married and all about living a healthy happy life. I find them very inspirational and maybe one day mine will be as well.
I have to get my head around what I want to focus on. At the moment I am feeling very motivated to get into great shape. There is no reason why I should not be in the best shape of my life. I have always been active however I have never had a body that I have been proud of. I am going to really start making myself accountable for what I put into my body. Easier said then done.
More to come....
Monday, February 23, 2009
Well I am officially 27! I had one heck of a week that included an airplane trip,green card petition, bad news from home, a birthday, a job interview followed by a huge job change, and a wicked birthday party to top it all off with!
What has changed in the past week besides my age you ask???? Well Mike and I are one step closer to his Green Card! That's right I had to fly to Sydney to enter his petition and we found out this week it was accepted! So we are on the right track!
I am no longer Captain Starlight....sigh.. I will miss Captain Courageous but alas all good things must come to an end. I have now taken a position behind the scenes. I am the new Hospital Programs Coordinator for Starlight in the Queensland office. So far I am really enjoying it, so fingers crossed.
I am looking forward to a great year filled with learning, reflecting, getting fit, and being positive! I know it will be a year to remember!
Tuesday, January 27, 2009
Weight that is! Not yet but I will. I am determined, inspired, motivated, ectttt..... I have always been active however after the wedding I think I gained a few pounds! Damn you Fiji, sweet, sweet Fiji!
Weight now: 149
Goal weight: 145 for now and then eventually 140 but we will see how hard it is to get to 145(:
I have been sweating it out running like a demon, I never run so now I am really getting into it. My hubby bought me a cool i pod arm band in bright green and my mom bought me an awesome Timex watch that does splits! Also once a week I am going to a group fitness program at a park by my house www.ashgrovefitness.weebly.com Dave puts me thru my paces!!
I stumbled upon a blog that I find very inspirational as well, she also has great recipes! http://ashisfit.blogspot.com/
Why am I doing this you ask? Well for many reasons:
I live in Australia where you wear swimsuits! A lot!!!
I am biking thru Asia with my best friend and I don't want to die from exhaustion.
I feel better when I am fit.
and last but not least I am sure that in the distant future I want to get pregers and I want to be at a good starting weight.
Those are a few of many reasons I have!
So here I go on my weight lose journey I will keep you posted on how I do. I thought I would leave you with a picture of me after my run today, sweaty as and loving it!!!!!