TheRaceForGrace.com

Hi Dear Friends,
It’s been a while since I’ve even had some time to sit down and write about Grace and our lives here at the Reddington compound. Last time I wrote, things were not going well for Grace or for David and me. Things are a bit improved for Grace in terms of the frequency of the pain episodes. She is not having three episodes a day but she is still having them and yesterday, she did have two. David and I are doing better mainly because we prayed for strength and help and have once again received both of those things through the many hands and hearts of God that are all around my family every day.
Living this life often seems a monumental and hopeless task and if I wasn’t living it myself, I’d say…impossible. It’s exhausting and heartbreaking and frustrating to witness such a beautiful little child be so severely assaulted daily by such a vicious disease. However, Grace’s life is also a beautiful suffering which like a thorny rose bush, produces the most exquisite and sublime blooms~ unsurpassed in beauty by any other flower in the garden. I do know that the roses Grace’s life produces are plentiful and perhaps they are still just buds, promising to continue to open slowly, in their own time, to reveal the deeper beauty of what lies inside…the velvet petals carved with perfection, the layers of beauty unfolding and releasing a fragrance that can be detected upon mere passing. There is perfection in Grace’s suffering as she brings love and strength and faith into all those who cross her little garden path.
Grace is spending days in school, which doesn’t ease her suffering, but gives me time to spend with Lily (2 yrs.-the youngest of my little flowers). We’ve been working on the yard and actually doing some real gardening. I went to the nursery last week, not sure what to buy and there was one beautiful “Peace Rose” just waiting for me. My mother cared for a Peace Rose in the house where I grew up so I instantly knew it was meant for me and my garden. So, I bought it along with another classic red rose bush and I have been meticulously tending to them daily and getting pricked each time I reach in to remove a dead leaf but the buds are there ready to bloom and I can’t wait to smell their fragrance. Spending time in the garden, I have been able to recover some energy and strength and organize the things around me so that when Grace does return home from school, I can provide the help she needs more effectively and with a more peaceful heart.
As usual, Sam, Ben and Meg are also flourishing in this thorny garden we live in and they manage to produce many of their own garden variety flowers. They are compassionate and understanding children and manage to get by often on their own, taking good care of themselves and each other. The bottom line is…it all gets done. We are still a joyful family with our ups and downs and we are aware and thankful for times of peace within our home and family when Grace is not suffering.
As for the Race for Grace, I just received a phone call yesterday from the Pier Village Shops in our town of Narragansett, who have been collecting donations all summer long and are now ready to present us with a check. That will bring our total for 2008 to well over $120,000!! So, basically in 18 months time, Race for Grace has raised a QUARTER OF A MILLION DOLLARS!! Now, that is amazing.
David and I will be attending the Boston Festival of Food and Wine on October 23 to celebrate the lives of all girls with Rett Syndrome. It is a very special night, painstakingly organized, promising to be a delight for all who attend. I went with my dad last year and spent much of the evening in awe and I ended up standing next to a young man who bid $15,000 on a Red Sox package in the live auction. It was incredible to see, feel and participate in the energy there, supporting a cause that is so dear to my heart (and letting other people do the work!!). There is information at www.rettsyndrome.org if anyone is interested in joining us.
Well, that’s all for now. Don’t forget to stop and smell the roses ~ and think of Grace!
Love and God Bless,
Tara

Before any of you good people come to see Grace at Hasbro, she is now home again.
We are kind of on the “U-turn” plan and will bring her back if things don’t stabilize or improve. Unfortunately, all treatments and medications are trial and error at this time so there is no crystal ball and this territory is certainly unchartered.
I’m in between brushing teeth and reading books and trying to normalize things for everyone.
I’ll keep you up to date.
Thanks for the prayers, emails, calls and visits. Grace certainly does bring out the very best in people and in the words of another wonderful Rett mommy who is dear to my heart…”she may not be able to speak but she says so much”. Thanks for listening.
Love,
Tara

Hi there.
Quick update. But before that…I’ve been inundated with emails and offers to help with kids, food, shuttling, and of course the endless stream of prayers for Grace going up at a good clip.
THANK YOU!! THANK YOU!!
Well, Grace is still at Hasbro and still having her severe pain episodes. Doctors, pharmacists, specialists, nurses, etc. are all working extremely hard to help Grace. It’s been a long week (and it’s only Wednesday!). Ben had his eight birthday Monday on Hasbro 5 and got an ear infection and fever for a gift!!! He was a good sport about it though. The birthday bunny snuck into Grace’s room and miraculously (literally) left a slammin’ black shiny acoustic guitar for him. That was no small deed to accomplish but Ben couldn’t have been more deserving along with the rest of my kids who have been so helpful, understanding and patient as our lives once again explode into controlled chaos as we shuffle and shift around to cover everyone’s needs.
Yesterday, my mom survived breaking down on the I-95 during rush hour with most of my children in the car with her. Luckily, my dad was not too far from them and was able to arrive in time for a quick rescue. Poor Lily is only 2 and a bit unraveled but we are reading extra books tonight and she had an extra long soak in the tub giggling with sister Meg so we are currently achieving some stability on the home front.
Friends and family have been graciously signing up (and being assigned) for Grace’s meal shifts. So once again, in a seemingly hopeless and heartbreaking situation…we manage to pull through with help love and support from all around us. I continue to pray for one main thing…HELP and I can’t say I haven’t gotten any so for now, prayers are being answered. For the big picture…I try not to look at it. It truly is one day at a time with Grace ~ and often one minute at a time.
Love and Faith,
Tara

Hi Friends of Grace,
I just wanted you to know that Grace is currently in the hospital for testing, observation and management of severe pain episodes. These are episodes that have been plaguing Grace for two years and at this time, they are intense, frequent and causing her quality of life to be extremely poor. Typically occurring a couple of times a week, they have been occurring 3 and 4 times a day. I would equate her episodes to be equal in terms of the exertion and the pain that a woman experiences during natural child birth (and I’ve had five so I know). As a family and with Grace’s doctor’s, we have decided to try her on liquid morphine to alleviate her suffering.
Although, we still have no answers and the morphine only relieved her pain for a short time, I do feel completely wrapped in the commitment, concern and care that the doctors and nurses at Hasbro have for Grace. So far, there has been no effective treatment and Grace continues to mysteriously suffer a great deal. I don’t know what I’m praying for anymore ~ just that God steps in soon to help her in whatever way that may be.
Everybody wants to help her and everyone is doing as much as they can to find a way. For you all…I ask the same thing as usual ~ keep her close to your prayerful hearts as often as you think of her.
I’ll keep in touch.
Love,
Tara