TheRaceForGrace.com

Dear Grace Fans,
First of all, thank you for increase in prayers for Grace and please don’t stop yet! This winter has been a long one for Grace and my family. Her recent hospitalization yielded some interesting finds but not a whole lot of what to do for her information. In viewing her brain activity, it was observed that every time Grace moves, her movements (even slight) causes immediate electrical activity in the brain- like an epileptic discharge. These continuous discharges seem to “back up” in Grace’s brain leading to a full out overload and an explosion of screaming, torment and misery. This cycle does not occur in “normal” brains nor with most girls with Rett Syndrome. It is unique to Grace.
Grace has always had unusual physical strength and ability for a girl with her diagnosis. It is because of this strength and ability that she suffers. Her brain is not capable of “driving” her body, therefore, sadly, her body drives her brain and the process for Grace is exhausting, painful and perpetual.
What do we do about it? Well, a cure would be nice but in the meantime, we are continuing to work to understand how we can introduce new meds, change her life and manage her days better in order for her to be comfortable. This is no small task and it’s been 4-1/2 years of searching for a way to help her but we are not giving up.
Speaking of a cure… It is still reachable. Although there is no Strollathon this year (thank God!!), the Race for Grace is still an open fund and desperately in need of donations. Research is continuing and it is aggressive. Rett specialists all over, including Grace’s doctor have conviction that it’s not a matter of IF the cure will be found, it’s a matter of WHEN.
On Sunday, May 15th, the Hopkinton Police Department and Ashaway Fire Department is hosting their 5th annual Race for Grace Softball Game at Dow Field on Rt. 3 in Hope Valley, RI. There is a steak fry to follow at the fire station at 2 pm. This is all an effort to raise funds and awareness for Grace. It is really one of the only Race for Grace fundraisers going on at this time. In lieu of attending the strollathon this year, I am asking that you consider attending the game/steak fry or at least donating if at all possible to the Race for Grace.
Also, the eve of the “would be” Race for Grace this year, on May 27th, there will be a live, luminary (candle lit) Rosary at 8pm in the same parking lot of the Race for Grace. This event is not a fund-raiser, but a true faith raiser and it is called: “grace for Grace”.
I hope that this email finds you well and feeling blessed.
Please continue to keep Grace in your thoughts and prayers as she battles through each day.
Peace,
Tara

Dear Race for Grace Supporters,
I feel like I have been underground for quite some time. Race for Grace plans have been at a bare bones minimal this year. Life has taken over. Work, house, kids, family have all taken precedence over anything extracurricular and unfortunately Race for Grace has landed in that category. I am writing today to remind you of the Race for Grace on May 29th and call out with a desperate plea for help to make it a success. I am unable to do this on my own. This entire Race for Grace experience has always been a collective effort ~ combining supports great and small. This year, I ask that Race for Grace be YOURS. It isn’t the Reddingtons that are hosting it this year. It is all the Friends of Grace that have sustained the fundraising, faith-raising and inflated spirits for the past three years. As you know, this is the fourth and final Race for Grace and my lofty goals for promotion, fund-raising, letter writing and soliciting have fallen short this year.
This week, during spring vacation, I have had the bittersweet experience of spending a week alone with Grace for the first time ever. David and my four other children scooted down to Florida for a much needed break. Unfortunately, family vacations that include all of us, are not a possibility with Grace. She is too fragile to travel and we have had to recognize and act on the need to divide and conquer. This was the week that I truly experienced how silent Grace really is…how locked inside her mind she is. She began the week content and became progressively agitated as I once again began the frustrating and desperate process of diagnosing what is bothering her. Doses of strong pain meds is the last resort. She’s tormented by something and perpetually exhausted. After being up for less than 6 hours this morning, Grace had already fallen asleep 7 times by 1 pm. She wakes with a jolt and a pounding heart. She then burns most of her fading energy and falls back to sleep, often through fatigue, tears, and screams.
I woke up from sleep last night, alone in the house, listening to Grace struggling to cope with her tormented state with her breathless panic, knowing she was seeing something or hearing something that terrified her. Who knows what she experiences. As usual, there is no “fix” for her. I can’t tell her it’s going to be ok, because for her, the reality is…it’s not going to be ok. She is gripped by something greater than her body’s ability to fight back. I prayed for her and begged God to bring her peace and comfort. I don’t know how long it took for her to fall back to sleep, of if she ever did, but by morning, she looked like she had been through a war and she has. She continues to battle this war on her own, with the glimmer of hope that someday, maybe someday, that miracle we work and pray for through Race for Grace will be realized.
So, what do I ask of you at this time? We need cash donations galore, participants, auction items, raffle items and lots of motivation. If you are coming to the Race for Grace, please try to find as many people to sponsor you as possible. This is done by basically letting people know you are running/walking/strolling in the Race for Grace and ask people if they would be willing to sponsor your participation with a donation. We also need participants who can likewise find their own sponsors. Going back to the ‘10 for 10’ from last year ~ if each of you asked 10 people to participate and those ten people each found 10 sponsors…that’s a lot of research money that could lead to ‘saving Grace’ and many other girls suffering from Rett Syndrome.
If you cannot attend, please consider finding sponsors anyway and send in those donations via mail or online. If you are not in Rhode Island or even in the US, please find a way to rally support for Race for Grace by sending out letters and emails to as many friends and family as possible. More than any other way you can help, we need to continue to storm heaven with prayers for Grace so that she finds peace and is released from her torment. Grace needs you more than ever. Please let her inspire you to work harder than ever this year to make it a great event where we can gather together under one unifying element: GRACE.
It has not been easy to ask anything of any of you over the past years as I’ve prepared and fought hard to make Race for Grace a success. I can only humbly thank you for making it what it has become and recognizing the value and importance of coming together to hope, love and support such a worthy cause. Race for Grace is five weeks from today. We could see that as either a little time to prepare or plenty of time to gather momentum, support and donations from all over the place.
Please forward this to as many people as possible as it is the final plea from Grace and the Reddingtons to make Race for Grace a beautiful and successful event one last time.
God bless and peace in your families,

Dear Grace Fans,
I have been out of touch for so long, I don’t know where to begin. We are coming off the heels of a very special Christmas for the Reddingtons. I pray that you all have a blessed New Year and I hope that my letter finds all of you in a state of peace and faith that despite the heartaches, trials and stresses of life, there is a great plan for us all. No doubt, there are times in life where it is hard to imagine a “great plan” evolving while we are drowning in sadness and chaos but I have come to believe it and feel it and trust it. I hope that you too can grow in this way and perhaps Grace and her life could be a small part of your journey.
I am still working full time. David is also working full time at night. This has been the busiest time I’ve ever experienced in my life yet I have a peace deep down that sustains me through the daily hustle. The peace comes from the trust in the greater plan and I have confidence that my family is journeying along the road that will lead us to that place in time where we will have peace not just in our hearts but also in our lives.
Our home has been permanently and beautifully Grace-proofed thanks to a tremendous secret fund- raiser organized without my knowledge and despite my forbidding threats to not have one. The fund raiser was called “A Safer Place for Grace” and some incredibly dedicated friends and HUGE fans of Grace were able to make our dream for a safer home a reality. We have struggled with a little girl who has incredible mobility and hand use but no cognitive control over her body. Living with Grace has been a very stressful and constant source of risk and danger for her and our family.
We are now living in a home that allows Grace to be independent and safe and I no longer have to wish away her mobility because I can’t manage it! A grant from the state I had been working on fell through in the spring and our hopes died along with it. David and I looked up and said, “Ok, God, if we have to stay in this house like this….” and that is when He took over and things started happening without our knowledge.
The happy ending is that we cleared and moved out of our house on November 30th and Woodmeister Master Builders (who donated $30,000 of the project cost) came in and completely changed our home from chaos and cramped to clutter-free, safe and graceful. It was absolutely the BEST Christmas gift for my whole family and especially Grace who can now live freely and safely in her home. THANK YOU to everyone involved!!! God always takes care of the Reddingtons.
Race for Grace Strollathon 2010 will be the fourth and finale! There is not much pie left in the slices of my life anymore. I cannot devote time that I don’t have so I will need your help to create the best, biggest and most successful Race for Grace EVER!! We have raised $362,000 in 3 years. I have no doubt that together, we can sail past $500,000. As long as Grace has Rett Syndrome, I will Race for Grace in my everyday life and the many little mini-events that happen all year long. The Race for Grace is not ending, but the big Strollathon event will be the last one. My children are very disappointed but there isn’t any possible way for me to keep it going without taking away important time from my family. It is set for Saturday May 29th, 2010. I hope that you will come, bring as many friends as you possibly can and help me and Grace get the word out one last time.
Grace continues to have her good days and bad days. She is in school full time and continuing to touch hearts and change lives whenever she encounters people. I wanted to be able to share some lessons I’ve learned from Grace in time for the New Year that is upon us. For 2010, I hope that you can incorporate some of Grace’s best advice into your own lives. She lives simply and experiences feelings in their purest form. When she’s happy, she’s happy. When she’s sad, she’s sad. Grace doesn’t incorporate bitterness, resentment, guilt, regret, or other complicated emotions into her experiences. She lives in part, the way we should all live…for the moment. As her mother and her voice, I once again have tried my hardest to get her message out to you. I hope you are inspired by her ways…

Grace’s Simple and Profound Lessons:
– Look directly into the eyes of everyone who comes before you
– Find something to love in everyone (yes, everyone!!)
– Cry when you are sad or in pain
– Laugh when you feel silly and enjoy a good giggle
– Scream when you are mad
– Don’t hold onto old hurts (either from years ago or moments ago)
– Don’t worry about the “what ifs”
– Be willing to approach new people
– Don’t be afraid of people who are different
– Everybody needs to be loved
– Eat slowly Savor good tastes (smack your lips if it’s really good)
– Smile when you snuggle in your cozy bed
– Be thankful for simple moments TV does nothing for you
– Fall asleep in someone’s arms
– Do a chocolate dance when you eat it
– Smile when you wake up
– Laugh out loud
– Hide and seek is fun (no matter how old you are)
– Touch the faces of those you love
– See the angels around you
– Remember that no matter how much it hurts inside or out, God is with you always.

Merry Christmas and Happy New Year!!
Love,
Tara

Race for Grace 3rd Annual Charity Softball Game

When: Saturday June 20, 2009 ~ 10 AM
Where: Chariho High School, Switch Road, Wood River Jct., RI

See the Ashaway Fire Department try for a major comeback after being slaughtered (sorry guys) by the Hopkinton Police Department two years in a row!! These guys play for Grace. They play with their hearts and souls in an effort to “make a difference” in Grace’s lives and the lives of girls suffering from Rett Syndrome. Please come and join us and see David throw the first pitch. Grace and the rest of the Reddingtons will be there cheering on the guys (she has no favorite team ~ she loves them all!!)
Music, food and refreshments
It’s another wonderful day to celebrate Grace. Hope to see you there.
Bring your friends and family for a fun time.

THANK YOU FOR THE BEST DAY!!!
Today was truly amazing!!
Grace is still clearly doing “God’s work” ~ David
Race for Grace 2009 as of this point raised $90,000!!! There are still some donations coming and events planned that have not taken place yet. We will definitely clear $100,000 AGAIN.
God Bless you and GRACE each day.
Lots of Love from Grace and Reddington Family

Hi there Friends of Grace!
Just an exciting reminder that we beginning the 10 day countdown to Race for Grace 2009. We are all so excited here and can’t wait for the day to arrive (although we do need every moment of the next 10 days for final preparations).
Now is the time to give a final push and beg, scrape and scrounge up those last minute donations ~ 10 for 10 friends, small businesses, etc. It’s never too late to rally supporters, participants and donations for the Race for Grace.
My house is a mess, kids are neglected, can’t see my basement steps because there is laundry all over them… We spent a long day in Boston for Grace’s appointments yesterday and life is completely crazy, but we’re ready (or at least we will be ready in 10 days!!). It was an important time to go to Boston, though. With all the excitement of Race for Grace and the fun we have planning it, it is a reminder of why we are working so hard. Grace continues to progress through this awful disease with no treatment and no cure. She has gotten weaker and lost weight, is still having seizures and the reality is, she will continue to develop new “issues” and endure tests and medication trials to make things better but never fix anything. Her life is riddled with suffering but somehow she continues to smile. It’s AMAZING. I am going to attempt to remain peaceful, thankful, and hopeful that Race for Grace 2009 will be another day jam-packed with love, faith and fellowship. Please join me in my prayers for a Grace-filled day.
We will be setting up on Thursday and Friday next week if there are any last minute drop offs or raffle/auction items.
We still need a good enthusiastic crew for “take down” and clean up. We will be running the event from 9am until approx. 12:30 pm when music will end and announcements of winners, etc. will begin. Our goal is to begin clean up at 1pm this year…an hour earlier than past years.
We’ve had INCREDIBLE support this year from so many corners of RI and beyond. There are so many many stories of people, businesses and children that have been “zapped” by Grace and have gone to great lengths to raise funds and awareness and basically to let Grace seep into their hearts. It’s so healing for me and my family to be at the receiving end of all the stories and inspirational efforts surrounding us and Grace.
Thank you for forwarding these “Friends of Grace” emails to your own “friends” and pushing hard to make this event another huge success. It is only through the ever-widening circle of Grace that we can create such a powerful experience for us all and we are giving Grace a full and purpose-driven life by acknowledging the gifts she gives us.
God Bless you and GRACE and see you in 10 DAYS!!!!!!!!!!!
Love,
Tara

Hi there!
Tomorrow is May 1st!! I’m just finding that out now. We are on the final stretch for Race for Grace. Food donations are coming through. Thank you to everyone for responding to my desperate plea in the last email. I think Grace knows that you are all out there working for her big day because, although delicate and a bit tired, she’s smiley and content these days.
We are still collecting donations for silent auction (items valued at $100 or more). Please let donors know that they are welcome to display business info., small banner (if provided) and business cards at the Race for Grace. Larger donors will get a live “shout out” by the MC at the event. Corporate and business sponsorships over $500 will need to be received before May 10th in order to get company name/logo on the t-shirts.
I always go through a phase of “oh no!!” before the race and then the people around me reassure me that it will all work out and it will. It always does when Grace is involved.
The Narragansett Little League dedicated their season to Grace Reddington last Saturday, who led the parade and Meg threw out the first pitch (right into the glove I might add) IT was an amazing morning. Thank you to NLL!! There’s a lot of buzzing going on in our community. Another busy but wonderful time of year for me and my family.
We are hoping to get an official crew of volunteers this year for “take down” duty. Usually it is a small crew at the end of the day breaking things down and cleaning up. It would be so helpful if we had an official team for that this year. Please let me know if you are available and I will forward your names to Russell Tellier, the project manager, MC, traffic and logistics coordinator of the event (no pressure, Russ).
We will be setting up at St. Veronica on Thursday (5/21) and Friday (5/22) so if there are any last minute auction items or drop offs, please feel free to bring them then. We cannot accept donations on the day of the race. Well, we can but we can’t use them
I think I’m sounding more positive and less desperate than the last email and that is mainly because once again, Friends of Grace have rallied to hold us up and keep us going!
So, Race for Grace everyone. I’ll keep you posted. Thank you so much for all the work work work. It’s going to be a phenomenal day.
*Don’t forget about the Rosary for Grace at 8pm (on Race for Grace night ~ May 23) at St. Veronica Chapel. We have beautiful white bags that have been decorated by children for Grace. The bags will be light up with candles in the shape of a rosary and the prayers will be led by Fr. Taillon of St. Thomas More Parish/St. Veronica Chapel. It really will be a beautiful way to give thanks and end the day. I hope you can muster up some energy to come back for this prayerful evening. You will walk away filled with GRACE.
God Bless Grace and YOU TOO!!!!!!
Love,
Tara

Hi Everyone!
We’re down to the final month until the 3rd Anuual Race for Grace (31 days exactly).
So many of you have taken it upon yourselves to launch an enthusiastic and successful “10 for 10″ campaign. The awareness of Rett Syndrome has really grown. There are so many people who know what Rett Syndrome is and are committed to helping find the cure now more than ever.
I do believe strongly that the Race for Grace will once again be a day that is overflowing with generosity and love.
Every year I get concerned that we will not have “enough” (food/drink) for everyone but I continue to have faith that it will be a day similar to the gospel about the “loaves and the fish” where the multitudes were fed and there was plenty left over.
That being said, I still have to do my part and collect some loaves and fish on my own. If there is anyone who can seek out food donations (fruit, sport drinks, dry snacks, etc.) I would really be so grateful. We still have time for businesses to secure a spot on the very popular Race for Grace t-shirts. Corporate donations will be recognized at the event with live “shout outs” banner displays (if provided) and company name/logo on the t-shirt. Also, free web advertising on the Race for Grace website.
Race for Grace has always had a feeling of abundance: abundance of food, faith and love. I hope to continue to see the abundance of all those things and more. It’s been an extremely busy year for David and I (actually an extremely busy 3 years!) and we rely on your help to secure donations of food, auction items and corporate sponsorships. As much as I do not want to do this Race for Grace event year after year, if you lived with Grace, you would realize why we have to do it. This is a progressive disease that doesn’t stop attacking Grace so I can’t stop fighting back either.
If any of you can help us out in any way, please contact me as soon as possible. Everything is tax deductible (goods and cash). All proceeds go directly to the International Rett Syndrome Foundation and as usual, if you participate in the Race for Grace,you get to walk away knowing you were part of something wonderful and that feeling is FREE!!!
Hope to see you and many many of your friends and family in a month at the Race for Grace.
I’ll be in touch and keep you posted. This is the final push. Please push along with me.
Thanks and God Bless,
Tara

Dear Friends of Grace,
It’s been a while since I’ve written and I’m finally ready to give an update. I’ll start by saying March was an extremely difficult month for Grace and our family. She experienced severe exhaustion (mainly from night seizures) which caused tremors, instability, and a general shut down and collapse of her energy and strength.
There was a point last month where I wasn’t even sure if Grace would live to see the month of April. I can say that now because she has shown a steady improvement over the past 2 weeks and it has been a blessing. When you hold your breath and think you know what your witnessing and prepare yourself and your family for something like Grace going home to heaven, it becomes easier to talk about now that things have gotten better. I also can’t help but think of all the people in our church and beyond who heard that Grace wasn’t doing well and spent more time on their knees and in prayer on her behalf. I do believe that God heard those prayers and that is why she is still here.
The fact that I have made peace with letting her go and David and my children have also made peace with it, makes her presence here even more significant and beautiful. David says there are people that she hasn’t reached yet and I have no doubt now that he is right. Grace’s life and story and how she inspires people continues to surprise me on a daily basis.
One week from today, David’s grandfather, at 93 years old, died in David’s arms. The last three words he heard on this earth were David’s words saying, “I love you” as they looked into each other’s eyes just before he died. David told me it was the greatest gift that he could have given his grandfather. As a family, we all celebrated his funeral mass and burial on Saturday. It was a beautiful day and a reason to celebrate. “Big Papa” as he was called by his fifteen great grandchildren (and one little great great grandson) was someone to celebrate. From 2 daughters, he created a strong, prosperous family and we all were able to enjoy his life and legacy. May he rest in peace.
Two days ago, on Monday, I had the amazing privilege of witnessing child birth. My beautiful friend, Liz, who I met through the Race for Grace asked me to support her in labor and help her with a natural delivery. I was overwhelmed at that thought that I might actually see a baby born and what a incredible gift Liz gave me on Monday (at 2:47 pm) to see the miracle of life that never gets old. David stood by me for all five of my children’s natural births and he said it was amazing every time. He’s right. To see a woman give all her strength and all her emotions and all her body to her tiny child who is just coming into the world was the most beautiful experience. God bless Jacob David and keep him always close.
In one month’s time, I have experienced a broad range of emotions and experiences and some profoundly simple events: life and death. They have shaped me, taught me, strengthened me and reminded me how delicate life is and that we are all together in the fragile existence of life. A woman in my neighborhood was at work one day and making chemotherapy appointments the next day. People come into the world and they go out of the world. Every life has a purpose. Every encounter leads to another. Our lives are not meaningless and random, nor are they meant for our own enjoyments. We are here to give back. We are here to grow and help others grow. I have certainly done a lot of growing over the past month and my hope is that I continue to grow and learn and never think I’m done learning what God wants of me.
I thought I knew what God’s plan was last month but how foolish of me! No one could ever know what God’s plan is and thank goodness for that, because I have no doubt that we would mess it up.
Race for Grace is in 6 short weeks!! I can’t wait. Thinking for a time that there would be no Grace at the Race for Grace, I now have greater appreciation and renewal for her life and her journey. I am beginning to think that she may actually out-live me!!!
www.theraceforgrace.com has been updated and looks beautiful. Thank you Paul for all the hardwork. Please take a peek at it. It has everything you need to raise awareness and funds for the Race for Grace. I will be receiving a shipment of beautiful “God Bless Grace” pins for everyone to wear so I’ll let you know when they are in and feel free to stop by to grab some. All the sponsor forms and collection brochures arrived yesterday so I have plenty of those. If anyone would like a bunch, let me know. We only have a few weeks to really get people committed to coming to the event so please spread the word.
Dress down days at your local schools, banks and businesses are a great way to raise money and get people involved. Please let me know if you need any literature or anything from my end. Race for Grace will be a wonderful day to celebrate life and Grace.
Our pastor, Fr. Taillon at St. Thomas More (St. Veronica Chapel) had asked me (last year) to plan a rosary the evening of the Race for Grace 2009. It will be a luminary rosary with white bags all lit up with candles in the shape of…you guessed it…the Rosary! Fr. Taillon will lead this beautiful evening and we ask that you come and bring friends to share in a Rosary for Grace. Father ordered a bunch of rosaries, so even if you don’t know how to say the Rosary or you don’t have one, please join us. It will be a prayerful and peaceful way to end a day filled with grace.
God Bless Grace and YOU too!!
Peace,
Tara

Hi again Friends of Grace,
Today was a pretty uneventful first day home after 10 days in the hospital. Seizures are hopefully going to continue to lay low. Grace seems content to be home, although she is very wobbly when she walks around. She’s tired and drowsy and looks like a little panda bear with dark circles under her eyes, but the beauty is still there, along with the quiet suffering.
It’s hard but I am trying to get back into Race for Grace fundraising gear. We don’t have a lot of time. I can’t help but be amused at the notion that Grace spent “10″ days…not 9 or 11, but 10 days in the hospital! I think she wanted to contribute to the 10 for 10 theme. I also think if we could think of contributing in terms of $1 for every day she spent in the hospital we could raise a quick and easy $10 from every person involved. Please continue to build the momentum of the Race for Grace 10 for 10 campaign. If you haven’t already, please forward the 10 for 10 request to as many friends and family as you can. Many people ask who to make checks payable to.
Donors can:
*donate online at www.TheRaceforGrace.com
*check out the Race for Grace Causes Facebook You have to join Facebook but it is simple and a great way to stay in touch with Race for Grace updates)
*send check to:
Race for Grace
34 Old Pine Road
Narragansett, RI 02882

Thank you again. God Bless GRACE!!!

RACE FOR GRACE 2009 ~ Saturday May 23 ~ 10 am ~ St. Veronica Chapel ~ 1035 Boston Neck Road ~ Narragansett, RI 02882 ~Registration starts at 8:30 am