TheRaceForGrace.com

Dear Friends of Grace,

It’s been a very long time since I’ve written to you all. I think possibly a year, maybe longer. It’s not for lack of things happening around here. My family is growing. Kids are great. I am now the mother of a teenager and my “baby” is happily enjoying Kindergarten! Grace is still fighting hard to maintain function of what she can still do. She is still walking. She gets tired a lot quicker than she used to. She doesn’t have much stamina. She is still beautiful and there are moments when she takes my breath away. She is still full of love has many bright moments of joy in her life. She is in school full time at Narragansett Elementary school and is surrounded by the most incredible staff and peers who find endless ways to reach out to Grace, accept her, and include her in their daily lives.

We have not made any communication breakthroughs with her so when the tears fall, I still don’t know why. I go through the list of what it could be and do my best to help her but with Grace, sometimes my best isn’t good enough and the tears continue to fall mysteriously. Sometimes I think for Grace, she must have those days where it just sucks to have Rett Syndrome. It has robbed her of so much. Then I pull my head out of those negative thoughts and remind myself of all the blessings that have come along this path of what we thought would be nothing but devastation.

As I look back over the last five years since Rett Syndrome entered our lives, I can certainly see many blessings. Most of those blessings are in the form of people who have come into our family’s orbit and managed to support us, comfort us and put up with us in our chaos and disorganized systems. I don’t make it to parent nights at school for my kids. I don’t attend most of my children’s athletic games and I have come to rely on wonderful friends and neighbors and at times, even “familiar strangers” from our wonderful community to provide rides and support to my children. All these people have been blessings in our lives and new people enter our hearts all the time.

As a family, we continue to pray daily for that miracle for Grace. In my five year old daughter Lily’s words as she prays… “And for Grace to have no more Rett Syndrome”. My children all still believe that Grace will not always have Rett Syndrome. I know that too, whether she is healed here on earth or whether it occurs on that day she goes up to heaven and is healed and finally becomes free.

I am trying to stay healthy and strong. Grace is nearing 60 lbs and still requiring full hands on care…needing to be carried, lifted into the car and in out of the tub and her bed and wheel chair, etc. Since finding a new strength I am also going to participate in the Tough Mudder Event at Mt. Snow in Vermont on May 5th. I will be surrounded by my closest friends, and we will be working to complete the 10 mile, 30 military style obstacle course in honor of Grace. Our hope is to raise funds for the Race for Grace since I no longer host the Strollathon anymore.

I have decided to challenge myself, push my limits (mental and physical) and raise awareness, faith, hope and of course funds for Race for Grace. I hope that many of you will consider sponsoring Team Race for Grace with a donation of whatever you can give. I am sure that during the Tough Mudder course, I will be aching and tired (and muddy!!) at times and wanting to quit, but I will not quit. I will personally do this for Grace. I know my team members will also push themselves for Grace.

Please continue to pray for Grace as she struggles in her daily life. If you are interested in seeing a video of Tough Mudder, visit www.toughmudder.com.

I ask that you please forward this to any of your own family and friends who are Race for Grace supporters and may be willing to sponsor our team. As usual, any checks or donation can be made out to “Race for Grace” and mailed either directly to IRSF * 4600 Devitt Dr.*Cincinnati, OH* 45246 OR you can mail to Race for Grace* 34 Old Pine Road* Narragansett, RI* 02882

Attached are the official letter verifying Race for Grace as an official part of International Rett Syndrome Foundation and also a tax ID letter for tax purposes because all donations are tax deductible.

As always, please keep Grace in your hearts and prayers. God Bless you and have a safe and happy spring- a time of HOPE!!

Peace,

Tara

Grace is 7 today, Happy Birthday!
Love and Hugs from Everyone.

Why don’t you buy Grace a Birthday present? Please consider a donation…..

Donate at the International Rett Syndrome Foundation’s website (select Race for Grace RI as the Program Area)
or
Send check to (pay “Race for Grace”)
Race for Grace
34 Old Pine Road
Narragansett, RI 02882

Grace is 6 today, Happy Birthday!
Love and Hugs from Everyone.

Why don’t you buy Grace a Birthday present? Please consider a donation…..

Donate at the International Rett Syndrome Foundation’s website (select Race for Grace RI as the Program Area)
or
Send check to (pay “Race for Grace”)
Race for Grace
34 Old Pine Road
Narragansett, RI 02882

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,

Grace and Tara featured in the International Rett Syndrome Foundation Annual Appeal

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

For you mountain biker enthusiasts and those of you who have adventurous kids…There’s an event coming up Saturday October 3 at Diamond Hill Park in Cumberland. “Take your kid mountain biking day” If you know any families that would be interested, please pass along the information.
Donation to participate is $5 and all proceeds will benefit…you guessed it: The Race for Grace!! Click on the flyer below for more details.
Hope you can pass along the information on this event to friends and family that might be interested.

On September 26th please bring your coins to BankNewport’s Narragansett branch on Point Judith Rd to raise money for the Race for Grace.
“The people running their coins through will receive 100% of their money, the donation will come from BankNewport.”
Many thanks to Jennifer & BankNewport for supporting the Race for Grace.

I know in my house, counting coins is a task that often get neglected until it is a monumental effort to dump out the coins and start counting and rolling. Bank of Newport in Narragansett is hosting a free coin counting day and the bank will make a donation based on how much money is counted in their coin counter on that day. PLEASE take a trip to Bank Newport on Point Judith Road in Narragansett on Sept. 26th and bring all your unrolled change. It’s quick, easy and YOU keep all your money (most coin counters charge 7%) and the bank will donate to the Race for Grace. It’s a great way to raise some Fall Funds for the Race for Grace at no cost to you. AND you gain access to what our family calls “Fun money”…extra money to do something fun.
Tara

Hello Tara!
My name is Jennifer Jurczak and I am the branch manager of BankNewport’s new Narragansett location on Point Judith Rd. I was wondering if you would be interested in partnering with us to do a fundraiser which would benefit The Race for Grace later this month. I know that the race is not until May but I am hoping you would still be interested!
Our branch has a coin counting machine that is always free for our customers to use. We are going to have a Coin Counting Day on September 26th where the machine is free for everyone! What we do is partner with a local non-profit and then the bank will make a donation to the non-profit based upon how much coin is run through the machine that day. The people running their coins through will receive 100% of their money, the donation will come from BankNewport. We have had good turnouts in the past with this event and would love to work with The Race for Grace!
Thank-you!
Jen
Jennifer Jurczak
Branch Manager / Officer
Narragansett Office
tel: 401-782-1089
fax: 401-782-8523
jennifer.jurczak@banknewport.com

Grace is 5 today, Happy Birthday!
Love and Hugs from Everyone.

Why don’t you buy Grace a Birthday present? ….

Please consider donating $5 in honor of her 5th birthday to the Race for Grace cause on Facebook
or
Donate at the International Rett Syndrome Foundation’s website (select Race for Grace RI as the Program Area)
or
Sponsor a drug in honor of Grace with the Rett Syndrome Research Trust (select Grace Reddington from the list)
or
Send check to (pay “Race for Grace”)
Race for Grace
34 Old Pine Road
Narragansett, RI 02882

Hey Race for Grace fans!
Grace is turning 5 years old next Tuesday (7/28). She can’t play with toys and doesn’t need anything except a cure for Rett Syndrome. Please consider donating $5 in honor of her 5th birthday to the Race for Grace.
Ask you friends and family to contribute. Let’s make Grace’s 5th birthday one to remember!!
God Bless her and you and thanks for 5 beautiful years filled with GRACE.
Tara

Donate at Race for Grace on Facebook