Amazing Grace.

It’s painful for me to write about my daughter, Gracie, considering our “predicament.” If I even barely open the door for thought, I will crumble. I can handle everything regarding ALS…but that. However, considering today is her birthday, her 19^th birthday, a day that I did not think I would see, I thought maybe I would share Gracie with you.

 

Gracie was born a great big fat baby. She was basically a 10 pound toddler the first day of her life. She would gorge herself on milk and then power vomit. Baby bulimia? She was all rolls and blubber. Her little feet were so puffy that it looked like I had injected them with silicone. She had like five chins. She was the cutest thing I had ever seen. Like a baby doll. I started to question my choice of the name Grace, though. Could this fatso represent the name? It’s such an elegant name. Grace and cankles don’t really go together. Luckily, her fat phase faded and she has been an elegant swan ever since. Little did I know, stupid me, or maybe I did know that the name Grace was the most fitting name ever imagined for this little butterball.

Gracie is the same person now as a young adult as she was when she was little. Reserved. That is the perfect word for her. Reserved. Literally, the complete opposite of me and Celine Dion. Gracie does not like to make waves or have any focus on herself. After two weeks of her summer job this summer, she received a promotion with more responsibility. I asked her if she asked for a raise. Her response was, “No, that would be rude.” She has never gossiped (boring) or been involved in any sort of confrontation with a friend. Never. She has the same friends since elementary school and makes new friends easily. Gracie is kind, supportive, giving and present towards her friends. She minds her own business and never judges. Even if she doesn’t know it, I think her motto might be: To Each Their Own. She is not a big fan of taking “selfies” and for that, I commend her.

 

I promise you, I can take no credit for this. This is who she is. This is how she was born. This is her character. In having this type of child, my job has been harder as her mother. She is sensitive and delicate. If I even look at her funny, she will have tears in her eyes. I have spent the last 19 years defending Gracie’s shyness. Don’t get me wrong, Gracie is no shrinking violet. She will absolutely stand her ground, but very passively. Sometimes Gracie’s character can be judged incorrectly. I don’t know how many times I’ve told her, “Your shyness turns to rudeness.” She is not very forthcoming because if Gracie were to express her feelings… It might destroy her.

 

So, having her mother be sick is a cruel blow to this fragile yet brave flower. We have been up and down, backwards and forwards, laughing, crying, screaming with frustration, fear and desperation. There is no rulebook titled How to Behave When Your Mother Is Dying. Not even a trained psychiatrist could crack Gracie’s armor. Gracie does not want people to know or talk about my… malady. She doesn’t want people to treat her differently. She did not even tell her boyfriend or her friends at school that she has a mother who is sick. Gracie’s new best friend at college, Beatrice, was coming to our apartment in Paris for Easter brunch. Gracie has known Beatrice since the first day of college. Gracie told Beatrice that I was sick…at the last minute…as they were riding up the elevator to my apartment. Awkward?

 

Grace is intelligent, funny, witty, cultured, well read, independent, honest, responsible, upstanding, loves animals and children and has a moral compass that would make us mortals blush. She has never thrown a fit, slammed a door, pouted, or yelled. Wait, she did throw a fit once at the polo field in Santa Barbara because she wanted to change her dress…for the third time. She has conducted herself as a lady...almost her whole entire life. She’s always been extremely feminine…loves makeup, jewelry, nail polish, and fashion. She carried a purse to kindergarten with 42 lipsticks and a passport. She wants to receive her degree in art history and work at Vogue.

 

Now, don’t get me wrong, Grace can be a bit of a bitch… But only to me. She rolls her eyes at me, huffs at me, tells me I'm most likely undiagnosed bipolar, embarrassing, rude, not funny, loud, self-centered, and hates my hair, my blog, my decorating, my style, my shoes, my shirts, my hats, my makeup, my perfume, and my jewelry. Oddly, she wears my shoes, my shirts, my hats, my makeup, my perfume and my jewelry on a daily basis and asked me to decorate her apartment. Sometimes she will not answer my 250^th phone call of the day. How rude! Sometimes I think that she is separating herself from me before the inevitable. This is been a sore spot for us. One day, last year, I was pushing her and pushing her to talk to me about her feelings. She just sat there, stoic. Then finally she burst out crying and confessed to me, “Do you know how hard it is to have my mother unable to put her arms around me and hug me?” I saw a pain so deep and foreign that it terrified me and I finally understood that my way of coping is not necessarily Gracie’s way of coping. We both decided that day that we were not going to open this wound, and that we would get through this way our way…through denial and laughter.

What kind of mother have I been? Let me see… The word overprotective comes to mind. I admit it and I don’t care. Gracie had a fever once of 100° and I called the ambulance. The ambulance! She has only needed a Band-Aid once in her life, and we still talk about that “horrible” day. When she suggested that she be homeschooled in Paris, I was thrilled because I knew I would get to have lunch with her every day. I still check on her at night when she is sleeping to make sure she’s breathing. Now that she is older, I still call her every day and remind her to take her birth control pill, not talk to strangers, stand up straight, read a book and budget her money. Her polite response? “Shut up.” Poor Gracie, I followed her to college, for God’s sake. My friend Yolanda always tells me that I need to let her fly out of the nest. I know that Yolanda is right and I will let Gracie fly but I will be flapping my wings as long as I can right behind her.

 

My heart is broken. It can never be mended. It’s not about me. It’s about Grace. The thought of Gracie going through life without me makes me lose my faith. My faith in everything… Religion, humanity, medicine, etc. The only solace that I have is that I know I have raised a strong girl. I have told her over and over to go forward…boldly go forward. My demise does not define her and will not obstruct her future. I have also told her with absolute certainty that it is imperative after I pass away that she calls Teresa, the Long Island Medium, for a reading and I will absolutely “come through.” And I will most likely tell her that she needs to iron her shirt. We have already discussed our secret word so that she will know it’s really me. She looks at me like I’m crazy, but she will thank me later.

 I don’t have any advice or any answers for this. There aren’t any. All I know is that I am lucky. I am lucky that I was blessed to have this child in my life for one day, let alone 19 years. So, whoever you are up there, thank you. Happy 19^th birthday, Gracie. Love, your overbearing mommy.

 “If ever there is tomorrow when we're not together… there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think  but the most important thing is, even if we're apart… i'll always be with you.”-Winnie the Pooh