Time. Time moves on, so quickly. The days go by, and tomorrow I stare in the face of four months without the physical presence of Anna in my life. The dream that I keep waiting to wake up from becomes more of my reality, and it is scary, lonely, surreal, to navigate through life without her.
Many times I do not know what to do with myself. I keep busy, I love my work and it has been a wonderful distraction. I have put jogging back on the calendar. I make plans to keep me out of the house, which may explain the moving boxes still lining the downstairs of the new apartment. But I have to keep going. When I stop, it is difficult. To start again, I ask, "Is this what Anna would want for me?" Many times, I look at Gabe's face. I kiss his forehead. It bring me peace. I could only kiss Anna's forehead near the end because of the equipment and the tubes and the masks; they were all in the way. I feel his forehead and I close my eyes and it is the closest I am able to get to kissing her. They have the same soft skin. I look into his eyes and it is the closest I am able to get to looking into her eyes. They have the same shape, the same sparkle, their souls shine through. Pure. Wise. Deep.
We all talk about Anna. Sometimes the words are saturated with sadness. Other times, full of hearty laughter as we share a favorite memory. A roller coaster. I long for her, always. Longing. It adequately describes my feelings for her. I long for her touch. I love her. I cannot have her.
This week, we bought a real Christmas tree; the house is filled with pine. It is a lovely thing to come home to. Gabe also asked for a mini-tree for his room. He decorated it with mini-lights, his special ornaments, and placed it beside the picture he has of him and Anna on his shelf. Next to the Franciscan cross. Next to the Snow White figurine because that was the first princess movie they enjoyed together. On the other side of that is the Nativity he built and put up on his own this year without any help from mom or dad.
On Gabe's tree, I found he had placed one of Anna's ornaments in the center. The Arielle ornament, from the Little Mermaid. He picked it because, at the end, the Little Mermaid had superseded Beauty and the Beast as her favorite movie. She loved Prince Eric, and when we would tease her about it, she would laugh and giggle. A little crush on the prince, I would say, and she would give me that famous smile.
A few weeks ago, on Nov. 8th, Manny and I co-chaired the 4th Annual Reverse Rett Gala in New York City. If you ask me why we stuck with it, I will tell you: staying home and away from it would have been more difficult than attending. There is a double loss I have suffered. The first and foremost, my daughter. The second has been the loss of our daily support system and life as we knew it.
Caretakers who took such wonderful care of not only Anna but our family (and me) are no longer there, filling my house with their love. While we stay in touch, it will never be the same. I do not come home to Anna, or Taryn, or Ruby, or Lilia. Lord how I miss them. Their presence. Their love. The laughter. The joy. The friendship.
Doctors who became extended family we do not see like we used to. The texts, the e-mails, the calls, the shared concerns; they helped us carry the Cross. I want to see them. In my crazy mind, I want to load up the wheelchair and pack the heavy diaper bag and I want to drive to Montefiore and head to the fourth floor and see them. I even want to sign in to the registrants desk and pay the co-pay. Just to see them. The routine of it all. What had become normal. I feel displaced. Dropped into a life that the rest of the world seemingly lives. Work, eat, sleep, exercise, pray, play. No Rett Syndrome and all that comes with it? Is this what this is? Normal? I am so not used to this.
The Rett community. Especially Monica, Rachel, Erika, Jeff and Sara, Kristy and Roger, the GP2C friends. We are forever bonded. We will move beyond Rett world. But we will not move beyond our friends and extended family. It does not serve us well to do that.
A month or so before the gala, Monica asked if I would speak. After a few days of thinking about what I would say, I said yes. Below are two videos. The first is the video shown at the gala. There is a beautiful, touching tribute to our Anna at the end. I tend to think my technical skills are pretty good, but I could not figure out how to download the video from RSRT and upload it to Blogger. Below is the link.
The second video is for our friends and family who could not be at the gala. Forgive the shakes, our dear buddy Hannah recorded it via iPhone. Apologies it has taken almost a month for me to get this together. Revisiting it is difficult.