“Life is not what society trains us to think it is. It is so much more. The diagnosis of our children with FA is not something we want, but something that steers us into the direction of finding in life what others may never understand. “
As quoted by my Connecticut friends- Tom & Caroline Hopkins – parents of a young daughter with Friedreich’s
So many people will never understand the true meaning of these words. You don’t necessarily have to have your life challenged to know what the words mean. There are some who naturally get the “true meaning of life” but there are others who will never get it. I try to use this example when I push the girls to enjoy life and be grateful for what we do have. Because of this understanding we live with extreme compassion (sometimes way too much for those around us) and with that compassion comes the will to fight, to survive; if you will.
I had the pleasure of working in the FARA office last week with Jen and Felicia and the great new person, Lynn! It was encouraging to see how big FARA really has grown while still keeping the big heart that we have always given it. I feel that this is the one thing that has kept us above the rest! This is a group of people with diverse backgrounds (heavy hitters as they say) but who are all extremely kind, compassionate, accepting and with an undying desire to work with everyone! How proud I am to be part of this incredible group of people! I’m actually not sure how I really got here!
Boy! Those girls can pile on the work!
jen-always busy working for that cure!
The important part of the growth besides the obvious push for a treatment is the awareness that has been brought about. I can not tell you how lonely it was in 1995 when there was nothing……the isolation was almost unbearable, the unknown scary. We are not quite where we should be as a society. But with our open hearts I am optimistic that one day we will as a society treat all people with dignity and respect. How easy it is to judge someone on their looks rather than take the time to listen, be patient and really see what is inside someone to see their true beauty! AND… the more we try to overcome the prejudice the better we become as people.
- felica and lynn hard at work!
Besides working in the office I spent some great down time with both Felicia and with Jen and Alan and their beautiful sons, Garrett and Luke. It was such a pleasure to be part of these kind and loving families. It gives me such insight as to why the mechanics of FARA work so well. Obviously people who are so content and happy on the inside just can’t help but bring that joy outward. Their homes are true testament to the generosity they exude. I was made to feel comfortable and felt so much at home with both families. I was even able to feel comfortable as I joked with Alan and his obvious compulsive behavior with frosting on a toaster strudel.
Who does this? only Alan!
But really, a wonderful experience and I feel like I did something worthwhile with my time by helping out with the clerical stuff. I am also proud to know that these people have touched our lives and continue to do so everyday.
famiy roots begin when two people fall in love.
to be this happy in the morning says something
I also had the exciting adventure of a life time as Felicia scouted out the bike shop that Holly had set up in advance to help with the purchase of “THE BIKE”! It is presently locked to my ankle-a little hard to get around the house like this but I will get used to it-! We got lost at every turn, backed into busy streets and laughed so hard we cried. We got to the bike shop with two minutes to spear- but low and behold! We got the bike! It sat at Jens for the week and then once again my dear friend Felicia delivered it to me in Connecticut. Now I just wish she could also ride it from Portland to Seattle in March. hmmmmm i wonder if I could somehow arrange that? 
Be sure to take the time to get to know your friends a little better today. You will be the better person for it!
And maybe develop a bit more passion for life by stepping into someone else’s shoes………
A big day and a fun adventure !
In Love and Peace
Mary
Life is like a sunny day at the beach!
How easily we get comfortable with our lives. I don’t know about anyone else but I am always running on high speed, it’s just the way I am. So two weeks ago, AFTER getting over the bike theft and losing my ipod while doing a three mile training walk, I was commissioned by the girls to run out and pick up some food for them. Our good friend Erica was hanging out at the house and they were all suddenly very hungry. I was snacking on the best clementine when I ran out the back door. As my foot hit the ramp all these memories came to me of the previous two years when I slipped on the black ice that always forms on that ramp! But I hardly got to think much longer than a second when BAMMMMMM down like a ton of bricks. For that one split second as I was going down, I thought………..Jeeze I hate to let this clementine go, but how will I land with this clementine in my hand……..and actually I really didn’t have much of a choice to hold onto it as I hit that ramp with a vengeance. After I looked around to be sure no one witnessed such a stupid clumsy act I took a minute and waited for the girls to come to my rescue, then another minute and then….OH what the heck they aren’t coming………..so I gathered myself up and stumbled back in the house to find out why no one came out. The noise was loud and my gasp was louder! As I walked through the door very disheveled the girls all sat there at the computer completely unimpressed. I guess they had faith that I would find my way back in!
Anyway……as always there is a lesson here. Although I spent the weekend icing and with my arm in a big bulky splint I can honestly say it pulled me back into a great realization. A humiliation if you will, for these times are so important to reflect on your life. Even for me, someone who lives with two girls who are constantly challenged with physical limitations! When my arm was in a temporary cast I couldn’t write, eat, grab a glass, cut my food or even blow my nose very easily. I was able to do these things but it was a challenge. I really believe that more of us should experience these temporary bouts of challenge. Not to say everyone should go out there and take a serious fall but maybe if we all tried to at least reflect on what it is like to live outside our perfect worlds once a week it would give us more insight to appreciate what each of us has. And have patience and understanding for those who are not so lucky. I know this experience taught me to appreciate how easily simple tasks are for me.
SUNBURN!
sam's sixth ice cream cone!
one of the more tender moments of the trip!
We are now in sunny Florida! Thanks to some of our loving relatives and great friends we headed down to warm and ice free weather so the girls could move about and enjoy some outdoor freedom. It has been just so great! We have been relaxing and really not doing anything specific. Just enjoying life with good friends and appreciating the fact that we are here. I had hoped to get in some serious bike riding but the old hand isn’t quite up to it yet. That hasn’t kept me off the stationary bike however and I am working my way up to two hours a day on the stationary bike while keeping my balance with a bad bulky hand!
Quick update on the bike theft! The police feel it’s a done deal; we will probably never see that bike again. However, the rescue efforts from so many have been overwhelming and Jack and Laura have forgiven me (not that they were mad to begin with). It is overwhelming to find how many wonderful friends and kind and caring people I have in my life…..I am blessed for sure! I have a bike from Lauren’s son (he’s grown out of it!) and when I get back it will be tuned up and ready for riding. Don’t worry! It is presently inside my house-out of harms way. My kind and generous friend and dedicated scientist Rob has sent me a bike lock which I will use to lock the bike at night to my ankle! Thank you one and all for your kind offerings and constant encouragement which helps me to look at life though my rose colored glasses!
Stay warm and remember kindness keeps your heart open!
With Love and Peace Always
peace out!
Mary
5:56 pm on February 11th, 2009
Love and Peace to you too! Love me
6:18 pm on February 11th, 2009
Actually aunt Mary, the frosting on my toaster strudels looks waaaay better than Alans…
6:48 pm on February 11th, 2009
Hey Mary -
Thanks for the link. Hi to Sam and Alex! We’re just starting out in our FA journey, but “kindness in all things” has taken on a whole new meaning for us, though we’ve a long way to go. Fortunately for us we’ve got our FARA family to help us along the way. Our loneliness was deep and dark as well but short lived, as we found FARA soon after Grace’s diagnosis.
Tom Hopkins
5:32 am on February 12th, 2009
Can’t wait to see your bike Mary…and how you move around the house with it! LOL Love your blog and look forward to reading each entry!
Love ya, Suzy
6:26 pm on February 12th, 2009
Hay nice blog mom
7:34 pm on February 20th, 2009
Dear Mary
So nice meeting you at the Spa yesterday,, I am back home in Southampton and have just read your entire Blog,,,,,Well Mission accomplished,,,,You have inspired, touched, and enlightened me… I will continue to keep you and your family and friends in my heart , on my mind , and in my daily prayers,,,,,You are a role model,,,,,have a super duper day,,, With much respect, Pat
7:37 pm on February 20th, 2009
PS I need to know how to donate to your bike trip?? thanks Pat
6:47 pm on March 3rd, 2009
So Mike tells me 1400+ people view your blog — this is excellent!!! I love reading your posts