We all would like to think that our child will never get sick.
When Addy first got sick at age 11, I was dumbfounded. I mean I knew she had anorexia. I wasn’t surprised at the diagnosis because I had known before the doctors and eating disorder experts. I was shocked because I had been careful. I had tried not to criticize my own body in front of her. We didn’t talk about weight or food being bad. We had forbidden Barbies and given her a gender neutral name. I had been aware of struggles of weight and I had made sure to read and be vigilant to the effects of an appearance driven society. But it happened anyway.
Addy has anorexia and she has since she was 11.
Her anorexia has morphed over the years from anorexia to bulimia to back again and included exercise addiction, self harm, depression, anxiety, fear of borderline personality disorder and OCD.
Throughout the years following her diagnosis, I pleaded with God and the universe and then cursed them both wanting to know why. Why my Addy?
To tell her story and our story of anorexia and eating disorders attempting to kill my child will take me pages and pages and probably years.
But I wanted to start at the very beginning. Was there anything about Addy as a baby or a young child that could have told me she was going to be sick? If I had it to do over again… Could I have done better?
Eventually in the process of getting Addy the treatment she needed, I would end up in parent support groups. Moms and dads sharing their same wonderings. What could we have done differently?
Even though it had been explained to us that this is a genetic disease of the brain- The most world renowned researchers in the field of eating disorders at UCSD Hospital showed us slides and brain scans and medical papers that proved our children had a disease that they were predisposed to have by their genes, we still wondered. Biology had given our child this disease and yet a lot of the moms and dads in the room questioned even blamed ourselves.
We found similarities. None of our kids were just alike. There was no magic correlation. But we found little characteristics and qualities that seemed to run through many of our very sick children.
I sold my Volvo sedan- the boxy kind- because I had a goal of buying a white iron bed before our third anniversary. The teenager who bought the Volvo (sold at a very reasonable price) actually called me a month later and asked me to buy her a new car stereo with speakers. I declined. Teenagers.
With my Volvo money, I purchased a traditionalish bed frame from Smith and Hawken back when they had a catalog that came in the mail. It was a garden catalog but for some reason it had this beautiful white iron bed in it that I had to have. I still sleep in it today. 19 years later. We put the bed together in our freshly purchased home on Bellefonte in Alexandria VA. This was the first home we had bought and it was an adorable brick house with a great back yard that backed up to a church and what really sold us was the big pumpkin that the realtor had put on the front porch. I was hugely pregnant when we closed.
See we had been living a mile or so away in a old stone rental house with sweet red shutters that had a small heart carved our of each one. One day, I returned from an OBGYN appointment and the firefighters were walking out our front door with those crazy gas masks on. Everybody was fine. Chad had been home with the kids. Addy was 1 and a 1/2 and Tuck was 6 months. The furnace in the basement had caught on fire.The firefighters had quickly put out the fire which had been contained mostly in the furnace itself. I rationalized irrationally that we had to move immediately. I couldn’t bring home a newborn to the unsafe house. It was a ridiculous idea. The house was in a great location across the street from a playground and so close to the King Street Marta Station. It was a lovely old house but I was 9 months pregnant and I wanted our own little safe house. Chad bought the little yellow brick ranch on Bellefonte with the big pumpkin out front and we moved in two days before BeBe was born.
His parents helped us move. They were visiting from San Diego and as soon as they left to fly home I went in to labour. Beatrice Freeman arrived with a head full of dark hair. Finally a baby that looked like my family. Maybe people would stop asking me if I was their nanny. The house was cute and clean and so livable. We got a Claire Murray light house rug that covered the entire living room floor and a somewhat antique camel back sofa that I had slipcovers made out of ticking so that we could take off the cover and wash out the baby spit up. Ohh- And I had one of those yellow upholstered rockers from the new Restoration Hardware Store. This was 1999- so Restoration Hardware was the bomb and not even called RH yet. It had funky hardware items and a few furniture items. It wasn’t all gray and fancy/dull yet. I rocked a lot of hours in that chair with a baby nursing away.
I had April Cornell pillowcases and mix matched bedding that featured a quilt my mom had made me in High school and a big down duvet that Chad required. The bed was hugely fluffy because Chad was accustomed to sleeping on a feather bed that was like a layer on top of the mattress and under the fitted sheet. It was quite a laundry ordeal when one of the babies had a buppy (our word for poopy) diaper that leaked. But it did make me feel like the Princess and the Pea. The bed was in the master which was a tiny room on the front of the house with a wooden framed window looking out on a no leaf Dogwood. BeBe came right before Thanksgiving and we ended up having lots of snows that winter. That bed got a lot of use that winter with two toddlers and a newborn to snuggle.
Fresh squeezed babies out of the warm tub wrapped like a burrito in a towel- the stretchy kind that come from Carter’s with a sewed up corner to put their little head in. Awwhhh. I fiddled with their hair and turned those angel feathers into a sticky up curl right on top.
Addy was sitting on the bed with baby Beatrice and I ran to give Tuck his turn to be the baby burrito straight from the tub. We were interrupted from our snuggle and throw onto the bed. Addy was screaming and pulling newborn BeBe towards her. It took a minute for me to register why she was panicked. She was blocking a spider from getting her baby sister. She was, well I can’t say terrified, but Addy had always been scared of crawling bugs. Instead of escaping the scene of the monster, Addy was protecting her baby from the spider.
I knew that Addy had such a high sense of empathy from very early on. Her first sentence was “I hode you.” She meant- Mama let’s hold each other and snuggle. And her first question was “Happy do, Mama?” She asked at 14 months- How are you, Mama? Are you happy?” And she asked me often as a sweet little toddler “Happy Do, Mama?” I can’t get over it even 22 years later. Before she walked (she was a late walker- 17 months) she would wonder how I was doing.
I don’t really remember wondering how my mom was doing until I was an adult. I think I thought my mom was fine. It was her job to be fine. Aren’t all the moms fine. They are here to take care of their children- not have feelings. But my Addy could feel all the feelings. Spoken and Unspoken.
A gift and a curse. Such a little girl to be that sort of conduit or vessel or love. It is almost akin to being magical or psychic. Tuck could read at age two and I saw how gifted he was. I saw his other worldliness. I saw him deconstructing words and assembling meaning from pages of type. It was easy to recognize my babies were special. Of course, they are my babies and of course, I think they are special. I had a sense of awe about them. We know our babies gifts. Their light ready to shine from under the bushel.
Addy’s empathy and the way she noticed things about people was uncanny. When she was four, we had a babysitter who was young and from Russia. She had an amazing body and an easy and forward sense of style. Addy copied Tatiana right after her first visit. Addy changed clothes thirty times a day. She was rarely satisfied with her clothing. She came out of her room imitating Tatiana- short shorts, tank tops layered on top of each other so that it had multiple straps on her shoulders. My four year old was pretending to wear a bra and allowing the strap to show under her tank top.
Her clothes changing and hair doing was extreme and constant. She didn’t like what I chose or how I did it. But she was dissatisfied with her own choices, too. It was as of nothing was good enough most of the time. So she would end up wearing the same few outfits over and over. No coat. She was always hot and even warm to the touch.
That year around Christmas, I was half way up a ladder helping Chad put Christmas lights on the roof. Addy looked up at me, “Mama, is there another baby in your tummy?” She knew before we had told anyone.
As empathetic and connected to others as she was, it was strange that she rarely cried. She hadn’t cried at her two year old immunizations or the subsequent check ups either. She didn’t really cry when she would fall. Her pain tolerance seemed really high.
She was a late walker, as I mentioned, not because something was wrong with her legs or her hips. She just wasn’t going to walk until she had no chance of falling. Is it possible that she was born a perfectionist? She hadn’t just been an easy baby. She had been miraculously wonderful and dreamy. She rarely cried. She was a little tiny sunshine.
Like the other stories we heard from parents of kids with anorexia- Addy was highly empathetic, had a high pain tolerance, anxious, helpful and sweet and never one to be worried about. She was a perfectionist and a striking beauty. She has a brain based disease that we could not cause. Nothing happened to make Addy’s brain starve her body. Addy’s brain was predisposed to have this disease. But somehow these similarities were reassuring. Sharing these early memories of our sweet babies before the disease was a gift. To go back in time and remember, hey my child used to be happy and eat hot dogs. We weren’t always this scared of the horrible consequences of an eating disorder. To remember that there had been a child before the disease- our child wasn’t the disease. She was separate from the disease. We would rely on that knowledge for years to come. And the idea that our children didn’t choose this disease would be a key to working toward wellness.
It would take me years to understand and I am still overcome by the disease when I dive into our history and our present with the disease.
Did Addy’s empathy bend her towards anorexia? We know that anorexia usually has precursors of anxiety and depression. But this idea that what makes you different is what makes you special and gifted and a light to the world- can that gift also be the thing that contributes to your illness.
*This is just a start of my story into anorexia. I have written about it before but I hope to conquer some fears and grief deposits. This will be messy. But if I don’t start I never will.