TheRaceForGrace.com

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 Friends of Grace,
I know my letters have gotten farther and fewer between, but that’s not for lack of things happening around here. Grace is just emerging from another rough patch. It seems that she always leaves something behind every time she goes through a difficult phase. She spent over a week with her silent tears and perpetual sadness and when she finally “came back”, it seemed she was a little further away from us. It’s hard to explain, but there are more periods of vacancy in her eyes these days and it’s hard to know if it’s permanent.
I just returned one week ago from my own vacancy. I traveled to Ireland and from there, traveled to Bosnia/Croatia to Medjugorje, a small village where miracles are reported to occur-miracles of physical and spiritual healings. My sole purpose for going was to pray as hard as I could for Grace. One week before I left on my journey, I was home folding laundry.
It was another frustrating Saturday for me where I was once again home for the weekend, catching up on laundry, kids, cleaning and Grace after working all week. Grace was not having a good day, which unfortunately has been the norm lately. My mother came over to support me in my quiet misery and gently commented that I don’t seem to spend enough time praying anymore. I snapped back at her, “Then HE better make time for me to pray because I have NONE!” (Accusingly pointing my finger toward heaven). A few hours later, I got a phone call from a friend inviting me to join her on a pilgrimage to Medjugorje and that she would be leaving in 6 days. For those of you who have never heard of Medjugorje, it is most similar to Fatima, Portugal where the Virgin Mary appeared to three children.
I originally had plans to spend vacation week with my children in New Hampshire, but after hearing I had an opportunity to go on a trip and pray for Grace, they gave me their blessing. David was supportive from the moment I told him I was thinking about going. He said he would make it work even though he was scheduled to work that week because it was a coveted school vacation week and he is never able to get that week off. I felt that God had personally invited me on this pilgrimage and I couldn’t refuse the invitation. The next day, my mother came over to babysit so I could go to church and she handed me a prayer card that she had meant to give me the day before. It was a picture of the Virgin Mary and it said, “Medjugorje”. I booked my ticket. I was set to leave in five days.
David went off to work that Sunday night and called me a couple of hours later telling me that miraculously, the week had opened up and he would be able to take a vacation. Another blessing and another confirmation that it was meant to be.
During the next few days, I had to get to Boston and apply for an emergency passport. Getting through the traffic and the lines at the passport office was another miracle. I said goodbye to my children Thursday night and left for work early Friday morning with my suitcase in the car. I went to Logan Airport in Boston straight after work and by 3 o’clock, I was on my way.
Arriving in Medjugorje with a hope-filled heart and a suitcase full of prayer requests from friends and family, I was overwhelmed. I had never left my children or even David before. I was a strange feeling but I had no doubts that I was where I needed to be. During the week, we visited the local church, an orphanage, a recovery community for boys with addiction, and climbed “Cross Mountain” and Apparition Hill where the Virgin Mary has appeared to 6 local visionaries. During the week we were completely emersed in the peaceful pulse of this war-torn community of devoted and prayerful people.
There was such an incredible sense of holiness and peace in the places I visited as I realized how many other millions of pilgrims stood where I stood for all their million different reasons and brought their despairs, hopes and faith to these same blessed grounds. Wherever I went, I brought Grace with me. Whenever I prayed, I prayed for her. At one point, as I stood on the Apparition Hill, and begged for help and healing for Grace, I realized with such certainty that it wasn’t Grace that needed the healing after all. It was me. I was there for my own healing of a different kind.
Well, I received it. It was as if the tank of fumes I was running on suddenly got filled up. I felt a pouring of grace into my soul and deep inside, there settled a deep sense of peace, renewal and clarity.
As much as Grace’s body is often in a tormented state, her soul is not tormented. But so many of us do have tormented souls. We are tormented by our worries of tomorrow, our regrets of yesterday, our “what if’s” and “should have’s.” All too often, we focus on what we don’t have or we get stressed over the situations we find ourselves in, instead of accepting our circumstances with faith and confidence. If there’s one thing Grace does, as you all know by now, it’s live in the moment.
I realized that I must never stop being thankful for Grace and the gifts that she has given me and given so many people. It is because of Grace and her suffering that I have come to connect so strongly with God and with so many of you, her faithful friends. Some day in heaven, Grace’s broken body will be restored and more perfectly matched to her beautiful soul. My faith assures me of that. I know her healing will come in God’s time. For now, despite her tears, my spirit feels very strong.
In church this morning, Monsignor Halloran talked about coming in on the Block Island Ferry years ago before digital technology. He recalled that in times of heavy fog, the captain would shut down the motors so he could hear the fog horn and get his bearings. I was so blessed to be able to go to Medjugorje and shut down my motors. I heard God’s call to me loud and clear and I have now turned back on my motors and maintained my bearings. Now that I am back from my incredible journey, I have to stay on course and continue to follow the messages from my pilgrimage…work, prayer, service, love and gratitude for everything we have at all times…even our sufferings which strengthen us.
I will end with reminding you that Race for Grace Fourth and Final is set for May 29th same time and place as usual ~ 10 am, St. Veronica Chapel, Narragansett. I haven’t done a THING for it yet, but my faith reminds me, it will all get done. Hoping for the biggest and best turnout EVER!! I ask for now only for your prayers that the event will be a huge success and Grace will have another opportunity to reel in more souls into her circle of love.
Peace,
Tara

Dear Friends of Grace,
I’ve gotten so many inquiries lately about how things are going here with Grace and the kids back in school and me working full time. Things are quite different. David and I pass for a few hours each evening and he’s off to work. He has a job for another 16 months so we are going to make this work as best we can for now. We also had to say goodbye to a very important part of our family. Many of you had the honor of meeting Jack, a twenty year old “Friend of Grace” who became her care giver and official “Best Friend of Grace” without a doubt. He wasn’t an outsider in our home. He was an insider and a dear member of our family and was with us almost every day for five months. He left for Army bootcamp the end of August and we have missed him terribly. He and Grace have given us all the inspiration to never give up, work hard and fight hard every day. Failure is not an option for Grace, Jack or the Reddingtons.
I transitioned back to work with a rough start just days after Jack left, but finally feel like the turbulence is settling down. I felt much like a veteran soldier returning to “normal” civilian life after fighting a war for three years ~ a war of tears, screams, seizures, deterioration and isolation among other things. I knew nothing other than life in my home, with Grace and my family and the constancy of the crisis management that we’ve had to deal with since diagnosis day. A year ago I would have called me working full time impossible. I also remember working with a Down’s Syndrome child 3 years ago. The parents had no other children and I wondered how they could manage a child like him. He was a sweet and beautiful child, but a lot of work. I never thought I could have dealt with Rett Syndrome either, but we’re doing it. When we are given a task, we have to accept it and do it as gracefully and willingly as possible. That’s all any of us can do.
Having to adjust to so many changes, so quickly has been very challenging not devastating, but definitely testing our perseverence and faith.
When you have literally zero time to focus on anything but survival for yourself and your family, it is quite a transition to let go of that way of living and begin to live a life that is completely separate and different from what has become a familiar existence. I am not a quitter. Because of Grace and the life I’ve been blessed to live with her, I am stronger and more determined to “complete the mission.” You learn to complain little and appreciate lots when you live with someone like Grace.
I’d say, Lily and I struggle the most. I struggle with trying to keep up with the demands of Grace’s needs at home and working out some sticky issues at school (trying to fit it all in) and Lily who’s a dainty three year old is trying to cope with missing her mommy. She’s always had to make do with the mommy time she had, but now especially, there’s very little time left in the day. Last night, I was trying to get her settled into bed, with all her belly aches and questions, while Grace was screaming on my hip, I was hurrying out of the room and Lily says with a very brave little voice, “But Mommy, where do I put my tears?” That’s the hardest part about life right now…knowing that my children need something from me that I can’t give them. It’s a tough one to cope with but I’m doing my best and praying more than ever for more time, more strength and more grace to get it all done.
I’ll end on that note and thank you for all the continued prayers, support and encouragement that really does get me through each day. Please always remember Grace in your prayers and Jack too, her best friend.
Thanks for all the continued support of our family and Grace.

Love from Tara and all the Reddingtons

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

Hello Golfers for Grace!!
Although we are in the midst of Race for Grace planning, but I wanted to send out this information about a charity golf tournament that will benefit Grace and Race for Grace on Monday June 1st, 2009. The Oil and Heat Institute of RI has chosen Grace Reddington as the recipient of this year’s charity golf tournament.
There will be two charity holes to benefit IRSF. Our family will be there with Grace for the dinner. If anyone is interested…the link is below.
Thanks and hope to see you all on Saturday for the big….
RACE FOR GRACE!!!!!!!!!!!!!!!!!!!!!!!!!!!
Tara

The 13th Annual OHI Charity Golf Tournament is scheduled for Monday, June 1, 2009 and will be held at Kirkbrae Country Club in Lincoln, RI.

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 there loyal friends of Grace,
Lately, I’ve been asked one question more than any other…”What’s up with the Race for Grace?”
We’ve been so busy keeping us all together, the Race for Grace has once again snuck up on us and is a short 3 months away. After the first Race for Grace, I vowed to never stress myself again by leaving only 3 months of planning time. Oh well. My intentions are real but it hasn’t worked out yet.
I guess I’ve also been stalling and wondering how I was going to begin asking people for money this year when David and I don’t even have extra money for Race for Grace this year.
We are tightening our belts around here. We are trying to line up resources and supports because the reality for us is a possible layoff for David. At this time, we are uncertain about the future, but we need to prepare. Every time David calls me from work, I am prepared for him to tell me he’s on his way home and his job is gone and hence, our health insurance for all seven of us. Once again, we have no where to go from here other than our faith and to trust that we will not be forsaken and God will take care of our business as usual. Despite many blows to our lives and family over the years, we still recognize the overwhelming balance that the blessings have brought to our lives.
That being said and you all now knowing where we stand, I have an idea for Race for Grace.
This idea requires more from you than writing a check and I am asking you to take a little extra time to dedicate to Race for Grace this year. I am hoping that every person that reads this letter can motivate 10 friends to commit to finding 10 people in their lives that they can ask to donate $10. My thought is that most people have $10 these days for a good cause. Even David and I have an extra $10.00!! Thank goodness.
It’s the 10 for 10 campaign. It sounds simple and as my old college professor used to say about certain statistical methods, “It’s quick and dirty” meaning fast, accurate and effective.
We all have three months to accomplish this task. Speaking of statistics, I was a teaching assistant in college for research statistics so I know well that only a certain percentage of you will actually do this for Grace. But I also know that if even half of you participated, we would end up with a very successful Race for Grace once again.
I completely agree that it’s just easier to just write a check of course. But Race for Grace isn’t just about money. It’s about awarenss. I will get pins, pictures and informational handouts available for anyone. We all know 10 people. Those 10 people that we know all have 10 people in their lives that they could flash a picture of Grace at and ask for $10. I know that all of you would give me $10 toward Race for Grace if I asked you directly!! You have all been so supportive towards Race for Grace. There are 250 of you all in this email file, which is amazing. But the ripples of 250 people reaching out to 10 friends each and asking those ten friends to reach to their ten friends…We are actually talking about reaching possibly $25,000 people and raising $250,000!!! Just by asking some friends to collect a mere $10!!
The National Democratic Committee called my house last week and asked for a standard contribution of $135. I told the woman that I truly do hope Obama can fix this mess and my prayers are with him, but we are a charity case on our own and we weren’t the most promising household to gain contributions from. She then went on to ask me if I would consider a lower level of support $75 I said,”No.” She then proposed their lowest level of contribution for $35, and I just laughed and told her good luck and have a great night. Gotta admire her determination. I aspire to have the same determination for my own cause.
So here’s the plan…print off a picture of Grace (file attached), make sure you can explain Rett in a basic way and find those 10 committed friends who will find 10 people to get the $10 from and we will all meet to celebrate at “Grace’s Big Party” on Saturday May 23, 2009 for the Third Annual Race for Grace.
Myself and the committee members of Race for Grace will be looking for corporate sponsors and working as hard as we can to raise money for Grace and plan another wonderful day. We are going to have a “quick and dirty” Race for Grace this year too. We are simplifying. We are going to have a DJ, as much donated food as possible, the 5 K event and plenty of spirit which will never run out even in this economy. We are rich in spirit and thanks to Grace, we always will be!!
Please let me know if you need anything from us to help you in your search for 10 for 10 for Grace.
God bless you all!!
Love,
Tara and the Race for Grace Committee

Check www.theraceforgrace.com soon for downloads, pictures and information to help you get ideas on how to find your 10 for 10 and how to make the best “Gracery List” possible!!

Dear Friends of Grace,
I wanted to write an early December letter before everyone explodes into a busy, holiday mode. I just spent some time enjoying and reading the pictures and messages from the 2008 “Grace Light” bags that were lit and displayed to spell “GRACE” in St. Veronica’s parking lot after the last Race for Grace. There are many times when David and I feel that we are alone with our suffering child. Reading those bags reminded me that we are not alone. I am thankful that so many of you remember her in your family prayers and ask that you never tire of sending up those prayers for Grace.
In the last update on Grace, I was pleased to tell you all that Grace was doing well and perhaps had turned a corner and reached that state of peace that they speak of in Rett. My fear was that it was only a reprieve and unfortunately, my fears were realized. We are back into the unexpected bouts of sadness and crying from Grace. She is tired and her eyes are heavy but not from drugs. It’s from Rett and the battle she fights every moment of her life. She is breathing differently now- heavier and with more effort. Watching her continually and slowly go downhill is very hard for all of us. Grace penetrates so deeply into my heart and soul with her tearful eyes and pleading look that begs me to help her and the reality is…I can’t.
We are a busy family but in a very different way than other families. While many families are busy for more typical reasons, we are busy with the basics. We take care of Grace first and foremost, feed and clothe our children, keep our “shelter” clean and decent and we take care of each other. It will never feel “normal” to take care of a child who is so fragile and requires such intense care. I will never get used to this lifestyle. Packing her up in freezing cold (she can’t make her own body heat) and bringing her to the town tree lighting last Sunday was a huge undertaking but we did it and I am so grateful for that experience. Seeing all those frosty faces covered in hats and hoods from Narragansett and beyond was a beautiful and strengthening experience for our entire family. When they announced, “Grace Reddington and Family are here to light the tree” and the shivering crown sent up a robust cheer, I was instantly warmed by the spirit of love and dedication to Grace that so many of you have given us.
As you know I just started up the “Keep Grace in your Spirits” campaign for liquor stores. I was asked recently how I find the energy to come up with new ideas and keep raising money. The answer is very simple. I am no different than any of you. If you look at your child or even spouse (someone that you love very deeply) and imagine that they are struck by a disease of destruction, silence, fear, and suffering…then imagine what you would do if you found out that there was hope to find a cure. You would fight hard and never give up, even when you are tired and want to just stop and rest. You would never stop asking God to help even if you wondered what He could possibly be waiting for??!! While you only imagine such a tragic scenario, we live it every day. Last night while Grace once again sobbed helplessly in my arms and tears streamed down my face and David stood by watching, we realized with certainly that this isn’t going to get easier. It’s always going to be hard with Grace. Everything is hard with Grace. It is never going to be “ok” with me that Grace suffers. Acceptance is different from complacence. It’s never going to feel normal. As much as I “tie off” my emotions like a tourniquet, they are still there. It aches deep down inside every day but I leave it deep down and keep it far away from the surface.
In it all, and somehow miraculously, Grace continues to be a gift. Her sufferings and dealings with Rett Syndrome has proven to me how much people care and has restored my faith in humanity. She causes people to dig deeper and come together. “Grace” means “gift from God”. I can clearly see and feel all the joy and love that is entwined with the pain and sadness. I know that someday when we all go to heaven, the mysteries of life will be revealed. It will all come together like a puzzle and only then we will understand why things had to be the way they were. The most amazing thing about Grace is that in all her hardships, she still finds reasons to smile and giggle. What could I possibly complain about when I live with a child who spills over with joy simply because she is surrounded by family and friends who love her?
I have four other “normal” children who have their Holiday wish lists like most kids across the world. Grace has no interest in material things…toys, electronics, TV, etc. so she doesn’t have a wish list, but I have no doubt that if she could have something this Christmas, it would be peace. If peace does not come to Grace this Holy Season, then on her behalf, please work hard to bring peace to your families and homes. If her little life inspires deeper love and a deeper commitment to peace, then you have received her gift to all of you.
May God continue to strengthen and bless you all during this special time of year.
Love,
Tara

Hi Everyone!
Things are going pretty well for the Reddingtons. Grace is still doing better…not great but definitely better and that has been a blessing to us all. As you know she suffers from a disease called Rett Syndrome, I on the other hand suffer from a disease called,”How to Raise Enough Money to Find a Cure for Rett Syndrome”!! ha ha ha…Like Grace’s disease, it is unstoppable and progressive. It plagues me day and night and through all four seasons – not just the Race for Grace season of springtime.
I’ve been in survival mode all summer and fall and haven’t had much time to come up with any new ideas however hard I try to think of them. When Chris Wilkens) from Narragansett Town Council stopped by my home the other day and asked if Grace would be the honorary “Lighter of the Tree” at the Narragansett Festival of Lights, I got rejuvenated and felt a new surge of excitement and hope…the perfect sentiments to have this time of year.
So what’s my point, right? Well, I am launching a new campaign called “Keep Grace in your Spirits” and I have created really lovely collection bins to put in liquor stores locally (or even not so locally). The idea not only sprang from my personal disease of curing Rett, but from Bonnet Liquors which is at the top of my road. They have had a beat up (not at all lovely) old bin at their cash register since last spring. Every 6 weeks or so, Paul (owner) dumps off a brown bag full o’ cash. It is wonderfully simple and uplifting. My personal theory is that it may feel a bit like penance when someone splurges on a bottle but follows the urge to share some of the change to sweet Grace – thus keeping “Grace in your Spirits.”
Please watch for them when you visit a liquor store, and if there isn’t one there…maybe you could ask if they are interested in keeping “Grace in their Spirits.” I will even customize the bin for their store. Anyone who has a liquor store that may be interested in participating please let me know and I will make up a bin asap. There is nothing involved, other than providing a space to place a bin on the countertop and let Grace do the rest of the work. I may need some elves to help pick up the money intermittently if I can’t get to them all, but I assure you there is nothing more gratifying than dumping out a bin of much needed money for Race for Grace and knowing you lent a hand in finding the cure that someday will grace us all.
Peace and Joy to you this blessed season.
If anyone needs a giggle…here’s one for ya…. http://www.youtube.com/watch?v=XD32e7CFZzE
Love,
Tara

Hi Everyone!
I’ve been out of touch for a while basically waiting for some news so forgive me for dodging some of you lately. Columbus Day weekend I found a lump in my neck and quickly went to get an ultrasound. They discovered that there were 2 and I went immediately to get a biopsy. 16 years ago I had a malignant tumor removed from my thyroid so we were suspecting more of the same.
Well, that same weekend, it seemed that the chains of suffering that Grace has been living with for 3 years just fell off. It was like a “trade” – me for her. It’s actually what I’ve been asking for anyway. Most parents agree that they would take their child’s suffering instead of watching them suffer. Anyway, I prayed over and over to just give me “something” instead and give her a break.
I found it kind of peculiar that the exact same time I found my lumps, Grace just stopped suffering. I never worried a bit about myself though. David knew I had been praying for this and he said seriously, “What did you pray for??!!” Well, it was a request of suffering for suffering…mine for hers. Anyway, I didn’t know what was in store for me so I didn’t send out any updates. They day of the biopsies was intense. It took 13 needles plunging in and out of my neck to get the necessary samples. Despite the pain and discomfort, it was in many ways a wonderful thing to lay there myself and not have to stand on the sidelines watching Grace go through another pain episode or another procedure. That actually gave me joy. I prepared myself for whatever God wanted me to do but am happy to tell you at this point that the biopsies were negative and I don’t have to do anything but keep an eye on them.
I’ve been put to so many tests over the years. Many times, it seemed for us that when things were really bleak and hope was far away, just continuing to trust and say “Yes” to God was the test for us. At this time, we all are relishing in Grace’s peace and contentment. She is quiet and at times withdrawn, but she is happy. She’s not being tormented. She’s not taking major pain meds and we are actually decreasing some of her existing meds and phasing them out slowly.
Life seems to be taking a turn for us. We are starting to feel…”normal.” I haven’t felt that in a very long time. And of course normal for us isn’t normal for most of you but we’ll take it! I look back and wonder how we were all able to keep up the pace but we did it and now we are enjoying a bit of reprieve from all the chaos. Now we can finally deal with just plain old Rett Syndrome. As devastating as Rett is, it sure is nice to experience a more typical course of it. I never would have guessed I would be thankful for “normal Rett Syndrome.”
Grace continues to get more beautiful. Her smile brightens our days, her giggles are hearty and there is finally peace in her eyes.
Today, I am immensely grateful and we will truly have another blessed Thanksgiving. I’ll always be thankful no matter what happens. I have faith, peace and joy in my life and all around me. There isn’t anything that can take that away – not the economy, not health issues, finances, basically nothing. Once you have that embedded in your heart, it can’t be removed ~ I wish you all those 3 things: Faith, Peace and Joy today and always.
Love,
Tara