Monday, September 24, 2007

Words from another Rett mom

There are many blogs that I check regularly and Grace's is one of those. Tonight my heart was touched by the words I read from her mother. I want to share those words with all of you! She had a two hour phone call with another Rett mom (probably like my calls to Bridget!) Here is what she says...

"Kathy believes that her daughter was once an angel in heaven and God was passing out “assignments” and her daughter bravely volunteered to accept life on earth with Rett Syndrome understanding what a tremendous job it would be but recognizing how important her life’s work would be to others. God warned her that it would be a very hard life, filled with suffering and pain but she only insisted that she could do it and God promised her that at the end of her difficult journey He would come and get her and reward her with eternal peace and happiness.

I knew instantly that this was also true for Grace as many people will testify that from the moment she was born, she had a look in her eyes- a “wisdom” many would say. She knew and continues to know so much more than we know. She knows what matters in life and where we are all ultimately headed.

Thank God I have Grace to keep me focused on what matters in life and in love. After absorbing all my thoughts, I began to admire Grace and recognize her courage and fortitude to keep going. She is not a genetic mistake. She is a beautiful creature preserved from the dirty waters of this world that we all drink from. Grace is knowledgeable in goodness and love and she is constantly in the company of angels as I’m sure God promised her she would be. I began to feel so inadequate compared to her and her strength.

As Kathy said, Grace’s role (job) in life is as important if not more important than many esteemed professionals who’s accomplishments are perpetually recognized in a spotlight. Every life has a purpose. As I further wondered why Grace suffers, the answer slowly became clear as I realized how her suffering and pain brings so many many people to God on her behalf to ask for peace and healing for Grace. Grace’s pain calls us to present ourselves before God and look deeper into our hearts and our own lives and also to look more closely at our own suffering. Of her many gifts, one is certainly perspective of what matters in life and what we need to be thankful for each day. Grace is stronger than I ever realized. She has to be to live her life. I will not allow myself to grow weary thanks to Grace and I will persevere with her as my guide.

As Kathy encouraged me, on the days when I am tired and discouraged and uncertain about having enough strength to take the next step, she said to turn around and look how far I’ve come with Grace. I have never felt prouder to be Grace’s mother. Having five children, us mothers aren’t supposed to have favorites, but my children all recognize as I do, how deeply carved into my soul Grace really is. She is in every fiber of my being and she fills me with incredible love and strength every day. That is no mistake. Grace is a gift and thanks to Kathy, I will spend the rest of my life thanking God for blessing me and my family with her."

As I sat reading her words over and over I found myself putting Brooklyn's name in where Grace's is. I believe that anyone that has been around Brooklyn for any amount of time feels the same way I do; she is nothing short of amazing!! I pray she continues to touch my life and many others for years to come. I remember when she was born thinking I now know what true pure love is. I think it is safe to say many people will learn that same love from her.



2 comments:

Anonymous said...

Hi Kelly,

We definitely agree with those who feel a strong connection between those with Rett Syndrome and the Angels. Both Laura and Lydia have important roles in our family, in our neighborhood, and in our efforts to help those in the Rett Syndrome Community.

We've recently coined a phrase to describe the role our girls play in our family. We've all heard of cheerleaders, right? We believe that girls with Rett Syndrome were entrusted to us to be "Cheer Spreaders"! They brighten our day. They are the bravest people we know.

Cheer Spreaders are not worried about wars, automotive strikes, financial crises, presidential elections, or the rigors of career changes. They face constant physical struggles, yet they smile each day. They teach us that what is important in life is caring for others as they themselves depend on others for every meal, every diaper change, every bath, every medicine, and every clothing change. They struggle to thank us with words, but we should be thanking them for the life lessons they teach us.

Cheer Spreaders Bravely endure unimaginable emotional pains in silence as their love for us grows deeper. Yes, Kelly, there is no doubt that these Cheer Spreaders were sent to us for an important reason.

They remind us that what is important in life is caring for and about others.

I'll be writing more about Cheer Spreaders in future posts at Rett Syndrome Magazine, but I wanted to share that with you here first. Thanks for sharing Grace's post and for your continued inspirations.

Greg Long

Kristin said...

WOW!! I am not sure what else to say. I love you guys so much!!