May Day

Dear Mr. Hughes: This letter is to inform you that after reviewing your daughter’s account we have determined that you overpaid the account by $270.00. Please see the attached check… Sincerely, Valley Home Care. Received today, May 11, 2012. I know. Sylvie’s birthday is tomorrow, May 12. She should be turning six. She is not turning six. She will never turn six. We will never know what it’s like for Sylvie to be six and do the things that six year old girls do. We initially turned down invitations but my parents implored us to do something—anything—so we not be on total lock down although my initial gut instinct is that I do not want to be reminded of our loss by seeing Sylvie’s friends. I love them today, tomorrow, every other day. I say that with gusto however last year, two of my friends came over before school with their children who had made cards and brought sparkly pinwheels which was so endearing and sweet and of course I cried right in front of them. I was very glad they came even though I was trying to shut out the world. In addition, I try not to cry in front of my friends’ kids. When I was playing with Samantha on Monday afternoon, I had a hard time not saying to her, “Sam, it’s Sylvie’s birthday on Saturday.” I kept looking at her and I think Sam noticed I was a little tongue-tied. And when Ryan was having a hissy fit and throwing a toy at Bella yesterday, I looked at Samantha and said, “You know, I remember when you and Sylvie would fight like that,” and she looked at me very seriously and replied, “I remember that too. I remember.” Naturally, the Jewish cemetery is closed on Saturday which is troublesome but we’re not going to effect any change, so we went on Thursday and today and did whatever rituals people like us, who have lost children, do on that special day. One day when Spencer and Ryan are older, we’ll bring them but the one time I brought Spencer and he ran around like a crazy person, I can only imagine what it would be like to LOSE your child, let alone TWO at the cemetery--No thank you! In addition to planting flowers and cleaning up some of the debris, I brought some special treats. I think sophisticated Sylvie would definitely have moved on from sugar-free cheesecake and cupcakes to French macarons so there I was armed with a 4-pack of cupcakes from Crumbs and three berry macarons from Sook. My fingers gripping my bounty crushed one and imagined Sylvie yelling at me, “YOU… YOU… YOU RUINED IT!” She would definitely have said that to me. I suppose that tomorrow we could go to Paramus Park and ride the Merry Go Round with Spencer & Ryan although we’d look like a family of psychopaths crying and the mean lady who sells the green single-ride tokens rubs me the wrong way. She never ever smiles. If I went every day for a month which I am proud to say, I haven’t done, but if I did, I don’t think she’d acknowledge that I was a regular customer. Fortunately Spencer and Ryan have no idea what the Disney Store is. May we not have to enter it for years to come. I don’t have a new Sylvie slide show because well, I don’t have any new pictures of my child who is no longer here. I’m sure I have around a thousand photographs that have never seen the light of day and I may try to dig up some birthday images. I am constantly reminded of Sylvie when I hear a new song or old song that’s new for the moment. I guess I could make a mix and if I was tech savvy, upload it to iTunes. I made, with my yoga teacher, a great mix that we played in celebration of my 40th birthday that included Ryan Adams “La Cienega Just Smiled,” Elizabeth Mitchell’s “You Are My Sunshine,” Dan Zanes “Smile, Smile, Smile,” Nada Surf “Always Love,” Blind Melon “No Rain,” Mazzy Star “Fade Into You” among others. There were too many Patty Griffin songs for me to narrow it down to one although “Up to the Mountain- MLK Song” and “Oh Heavenly Day” come to mind. So if you’re looking for a new playlist, there it is. And yes, let’s not forget that Sunday is Mother’s Day. My friend Stacie said that you can never take away that I am mother to a very extraordinary little girl, in addition to Spencer & Ryan. There’s the spiritual side of me that: 1). Believes in the survival of the human spirit (trust me when I say that I have personal proof), 2). Sends intentions out to the universe and 3). Give thanks to my own spiritual guides on a near daily basis. Michael is not such a fan of those things because he thinks they give false hope or justify our loss. I think it has nothing to do with hope but empirical evidence that there is some other guiding force out there that if you are open to it, will send you messages. This has nothing to do with religion. I’m not sure where religion fits into all this actually. Perhaps over the next 40 years, I’ll figure that part out. That being said, Michael and I wholeheartedly agree that it was not Sylvie’s time to depart and that modern medicine or the common decency practiced in modern medicine was not practiced on November 28, 2009. The court of public opinion would tend to agree with us which is very different from, say, the State of New Jersey, so balancing science versus spirit is very challenging to me. In my yoga class Tuesday, the teacher asked us to say aloud yet silently an intention. I always dedicate my practice to Sylvie and I always have an intention. Mine was, “I will not rush today.” I already know what today’s will be. “This is as good as it gets.” Sylvie is my pseudo-imaginary friend. I am a forty year-old woman with an imaginary friend who is her deceased little girl. You can’t make that up. In Spencer & Ryan’s music class, there is a little boy with a compromised immune system disease. His mom has no idea that we have gone to fundraisers for her toddler. That Michael is in the bone marrow/ stem cell database because of her son. She has no idea that the face of the mom with the crazy twins sitting across the room is literally the face of her living nightmare. A visitor to their Facebook page and blog. Two weeks ago in class, my first real encounter, I admit, I tried to look away because I was obsessively staring at them alternating with wanting to cry. But then Spencer began running in one of his flailing out of control feet-don’t-fail spirals … right into their laps. She looked horrified. I WAS horrified. They left class to wipe every trace of Spencer germs off of them and trust me, I KNOW what that means! I tried to switch class the following day. Fast forward, he wasn’t there this week. Instead he had a central line inserted, began chemo and is having a partial stem cell transplant because they haven’t found a perfect match and he may otherwise die. So on Sylvie’s birthday, please send your intentions out to the universe, eat a macaron, light a candle for her and also for Ezra.