TheRaceForGrace.com

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 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

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

Dear Friends of Grace,
So Grace is 5 years old as of yesterday (July 28), thanks to God. The first two years of her life were very happy and “normal.” The past three years have been quite different as you all know. She’s been faced with a vicious assault on her body and mind. She’s fought long and hard to survive her daily and often momentary battles. Through it all, her spirit has remained strong, so strong.
Over the last three years there have been many times when things got so bad for Grace, I have prepared myself (and my family) to “let her go” – not for my sake but for hers. After celebrating her fifth birthday and seeing how radiant and beautiful she continues to be, I cannot help but find comfort in allowing myself to believe more and more that she is not going anywhere. She’s a survivor. She’s a little comeback kid. She has dipped so low in her health and strength so many times, but yet she rises out of the ashes on every occasion. She’s amazing.
I always wonder what the next possible lesson from Grace could be for us all because I have learned so much from her already in these 5 short but LONG years. The notion that “quitting is not an option” has never been so crystallized in my mind. When I’m carrying her and my arms are burning, I cannot put her down. When she’s vomiting her meds and looks exhausted, we have to clean her up and try again. When I don’t want to get out of bed but I can hear her yelling out “mommy” in the early morning, I just get up. There’s nothing I wouldn’t do for her and in her name. I realized lately that I can scrub my bathtub for her. I can wash dishes for her, cut the lawn for her, suffer through my own meager discomforts for her, pray even when I’m too tired for her.
She pushes me, challenges me, shapes me and makes me want to try harder, work harder, push harder to get it all done and I will…for her. I am going back to working full time in one month. There are some changes in our home that will be challenging and some heartbreaking. My head and heart is full of wonder and concerns about my family life, my children’s needs and Grace. David will be working nights. I will be working days. Only through the grace of God will we figure it all out and still maintain love, peace and order in our home. Through all the hypotheticals that could drive me crazy, there’s only one central theme that keeps me going…we will do it all for Grace and it will be all right. If it wasn’t for Grace and all the comforts and strengths that she brings to my heart and mind, I couldn’t do it.
I am so thankful for her life and the ability through our faith to transform our family’s biggest heartache into our greatest source of strength. Race for Grace is an incredible experience and it is truly a way of daily living. Learning to accept and accomplish all your menial annoying little tasks and even the great big ones…for her. It’s one of the greatest lessons I’ve learned from Grace. I don’t just do for her. She does so much for me…for us!!
Thank you for continuing to ride this wave of Grace with us.
Continue your prayers…for her.
Love,
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

Dear Friends of Grace,
Grace is doing her best to fight this great fight. She’s extremely wobbly on her feet, one of her ankles is caving in, her hands, arms, head are all tremoring and she looks a bit “Katherine Hepburn” these days. She’s tired. Her life is hard every minute.
Although her body lacks the ability to regulate things that we all do automatically without thought or effort like swallow, breath, sleep, walk, talk, etc., she does do one thing with perfection and independently and that is LOVE. She loves indiscriminately and without limits. To me, that is something we all fail at. Grace loves you no matter what size, smell, color, or disability you have (inside or out). She has mastered or actually was born with this ability that very few people in this world ever achieve.
Despite all the struggles of Grace, I had an amazing day today. I went to the Community College of RI in Warwick. As I was walking up the cold, shadowy entrance, I saw a beautiful set of eyes looking at me. It was Grace. Her photos were on display. There was a table with posters, handouts, Youtube slideshow playing on a laptop, and a passionate young lady there named Amanda with Steve (a wonderful Friend of Grace) rallying support for the Race for Grace and telling anyone who would stop at her display all about Grace and Rett Syndrome. I was blown away. I met one of Amanda’s professors who was on fire with energy for Grace and she told me she showed all her students the Youtube video in all her classes to raise awareness about Rett, Grace and the suffering in the world around them. She’s opening their eyes and teaching them so much more than French.
I met a young man, Jean, from Rwanda. He stopped to meet me. He had a light in his eyes as he listened to me talk about Grace and how she’s like an oyster, under attack, but she found the strength to fight back and form a pearl amidst the devastating assault on her body. I could tell he understood. We shook hands and he walked off with a smile. His teacher told me his story. He was 13 when without warning, his village was in the midst of the breakout of the Tutsi Genocide and his his parents were each from a different “side” and he lost his entire family in the devastating tragedy. He ended up leaving his village and dead family members, walking alone a distance from approximately RI to NY and somehow, miraculously, found safety. His journey was long, devastating, exhausting yet he endured. He has been forming a pearl ever since. He is not so unlike Grace…rising from the ashes of devastation and making something beautiful. I know I will see Jean again someday.
Most people in this world suffer from the yesterdays and the tomorrows. Many forms of mental illness would cease existing if those two crippling fears disappeared and people stopped looking into the past and fearing about the future. Grace and the incredible young man from Rwanda I met today live in the moments of today. They love with all their heart. They serve those around them. They teach lessons that no one else can teach. We need them. We need their experiences and their strength and their pain. We need to look at them and wonder, “Could I do that?” Every single human being on the planet will be attacked like an oyster someday. Some people will undergo several attacks. It’s up to us to whether we surrender, become crippled with fear, become angry, fight to survive or simply accept what we cannot change and decide to make a pearl. The attacks are a necessary part of life. Without them, we would be shallow, empty vessels.
I’m headed for bed and hoping Grace will sleep tonight but I couldn’t go to bed without sharing my day with you. I’m spending most of my life trying to fill my tank with the lessons of Grace and the lessons of the inspiring people I meet throughout my life with Grace. Every life counts and every suffering can bring strength.
Be strong. Be thankful and fill up with grace wherever and whenever you can.
Peace,
Tara

Dear Friends of Grace,
I think of you all so often and feel negligent when I know I owe you an update. God bless you all for following our journey along with us. It has been quite an incredible journey. David and I have been looking back lately at how far we’ve come. Grace began deteriorating approximately 3 years ago, when we started to notice regression in her speech and behavior. The random episodes of screaming that eventually came to be a continual part of her life and suffering began about 3 years ago. Three years ago, I was preparing to give birth to my fifth child and wondering how in the world I would manage a new baby AND Grace plus the other 3 children!
Three years ago, if I had a looking glass into our future, I probably would have gone into an unrousable state of shock. Thinking back on how many nights I would put Grace to bed and like a sleeping giant, I knew that at an unexpected and dark hour in the night, she would wake up screaming and David and I never knew if we would have the ability to help her stop. Often times, only large amounts of potent drugs pumped into her body against her will would help and often even that was only temporary and the cycle would begin again.
So many people wonder how I survive (more…)

I’ve wanted to share Karly’s website with Race for Grace friends…this is a 23 year old girl with Rett who through technology and facilitated communication, can share her thoughts with the world about herself and Rett.
It’s absolutely amazing. I want you to learn more Grace and Karly and other girls with Rett Syndrome. Mental Retardation is not part of their disease. Dr. Andreas Rett always believed this. They are intellectually sound but trapped in a body with a brain that is so terribly broken and the worst part is they know it’s broken because they are smart. I remember when Grace understood everything I said when she was 2. She would do what I asked her to do, follow little commands and laugh at appropriate times when things were said in her presence, so I see more clearly now that yes, she is smart. My friend used to say that she thought Grace was one of those super intelligent kids that just don’t talk. Think Stephen Hawkins. If it wasn’t for technology, he’d be forgotten in a nursing home somewhere. It’s a disease of the body and movement with many medical complications but not of the intellect. In some ways, it’s more heartbreaking because I feel so sad for her to have to live knowing how disabled she really is. In other ways, it’s refreshing because now when I wonder if she undertands what I’m telling her, I just assume that she does and I keep on talking to her.

Karly’s website – Inspired by Love

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

Dear Friends of Grace,
My entire family unplugged from reality for two weeks and we just returned a few days ago. The boys spent two weeks in Freedom, New Hampshire at a gem of a summer camp called Cragged Mountain Farm. David and I spent two weeks with the three girls at my aunt and uncle’s cabin on a lake in Maine.
It was quite a trip. First five days rained like mad and the only reason we go to Maine is to enjoy sunshine, boating, swimming, etc. The hardest part about the rain was the fact that we had just dropped off Sam and Ben at camp for the first time and there were no nightlights, no mom and dad, soggy sheets and homesick tummies. I could hardly sleep at night knowing without a doubt that they were struggling. I kept wondering why I had left them there and wanted badly to go back and pick them up.
Well, I didn’t go get them. I didn’t get any tragic phone call from camp and luckily David and I NEVER have an opportunity to enjoy boredom so we began to relax in the soaking rain after a couple of days. Grace had her ups and downs just like at home. She would go from happy to screaming and miserable throughout the days. Meg was enjoying lots of attention and we watched some girly movies, ate chocolate and painted toes and fingernails. She and Lily were having fun being girls and sleeping in their new cozy beds at the cabin. Hiya (our one year old black lab) had the most fun. Right from the start, she discovered minnows in the water and spent her days tracking and pouncing on them to no avail ~ rain or shine. I couldn’t help but admire her relentless pursuit and her shiny black coat.
After five days (more…)