Grace’s gift December 10
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