“You find peace not by rearranging the circumstances of your life, but by realizing who you are at the deepest level.” ~ Eckhart Tolle
Today, I sat on this beach…the wind was warm as the sun shone down on my face with just a trace of the cool fall air hinting at what’s to come. I had come with everything I would need: coffee, kleenex, a playlist dedicated to my sweet angel, a swimsuit, a hat, a blanket and the journals started for the minis when they were only 5 weeks old in my tummy. I was prepared to cry, to embrace every emotion that I had been waffling in and out of for the past week. Since posting my “An Angel Among Us” post last Wednesday, texts, calls, emails, comments and FB messages have poured in with words of comfort, love, support and everything we would need to be reminded that we are not in this alone. For the first few days, I could not respond. I felt frail, sad, drained and overwhelmed by everything: I also knew I needed time.
If there is one thing that I have learned in the past 3 years, which have taught me more than I ever thought I would know about myself, I need time to process. I am good in chaos. I take charge, create solutions, make things happen. I push the emotion away and let work and initiative make me feel like I am processing when all I am really doing is burying the emotions. Last Tuesday, as I read the same white paper that I posted for everyone here about Angelman Syndrome, tears poured from eyes, my body wracked with fearful sadness, and my solution DNA strand told me I would need time away from work. I would time away from the outlets that could distract me and make me feel like I was processing, which would only delay the inevitable. So I took the time. I put away my blackberry. I shut down. I cried when I needed to cry. I read every comment, message and text and silently thanked each person for their love and support but I could not respond. It’s all part of the process.
Today, as I sat on the beach and cried and let the wind and sun wash over me, I thought of all the texts, comments, emails, calls, and love that have poured in over the past week. I thought about the day I got the news and where I was, and how, in its own way, it was perfect, for I was with friends who whisked me away to have a glass of an appropriately named wine, “Whispering Angel.” I thought about the amazing team of people that surround us, all fighting along side of us so that E will progress and grow and surpass any and all expectations. In that moment I realized you are all my angels. E is not the only angel that has been diagnosed in this situation, it seems you have all been diagnosed as angels for me and our family.
With all of you in my heart as I sat down on the beach, I looked to the sky as I listened to my playlist and I prayed for grace and peace. The grace to find and see grace within our future and within myself. I prayed for a sign that I would have this grace, that I can find it within me so that I can accept this new label and put it away. Why Grace? Grace, for me, is a word that in many ways conveys peace. It’s a state of being. You can’t make it, or try to be it, it just is. E’s middle name is Grace. There are 4 Graces that surround E. My Grandma Grace who looks down on us from heaven and who I love beyond time and space. My own very special mom, and E’s Gigi whose middle name is Grace and loves her and us beyond measure. KSP’s Grandmother whose name is also Grace and recently met E for the first time, and of course little E. Emma Grace. Four Graces.
2 and 1/2 hours into my time at the beach, I looked back to the sky. It seemingly changed before my eyes. I had found the moment. I felt in my heart that E was not bound by her diagnosis. That a white paper would not define her future or potential. That I was meant for this. That while she is my angel, I am hers. She was given to me for a reason. This diagnosis, for a reason. Everything leading to this time, preparing us for the opportunity to show the world just what is possible. I knew then it was ok to leave, and while I had planned to spend the whole day alone healing, I went home to take my little E for a walk in the sunshine.
In a spontaneous moment tonight after a meeting with a dear friend, I decided to pick up a bottle of wine to celebrate my new peace. I wanted a bottle of Oregon Pinot for obvious reasons (I am from Oregon…and am a little bit proud:)), so I popped into Bristol Farms to pick up a bottle. I scanned the shelves but strangely could find nothing, until I found this…it was the only bottle of Oregon Pinot on the shelf.
“Four Graces” from Willamette Valley Oregon. My sign. Of course I bought it, not even to really drink it, but more just to say, “I get it, ” “I’ve got this.” This week has been about finding peace in random places. In seeing the signs. In recognizing that E is not the only angel in our lives, but rather one of many who love, care, support and provide guiding lights in this journey that has been winding, scary, joyful, loving, sweet, confusing, hopeful and full of happiness.
As of today, the circumstances of our lives have not been rearranged and I know, as of today, while I would not have asked for this, I feel peaceful. Full of Grace. I know me. I know her. I know our strength. I know what’s possible and what’s not impossible. So thank you angels for everything. For all of your grace to help keep us, me, going. And, to know that no matter what, you are with us, watching over us and bringing more peace and grace than we could have ever imagined.
Thank you for making today and everyday the past week, ‘anewfavoriteday,’ even when it was sometimes hard to see through the fog of a label. As of today, our only label going forward will be one of “what can be,” “what’ s possible,” and “I never thought that could happen.”
Much love, grace and peace,