Lazy Labor Day

Labor Day, Monday, September 3, 2007: I think I rested all day. I think I talked on the phone. I think I read my MS for Dummies book and did MS research online. It's kind of a blur (literally and figuratively).

I know I read some stuff on the MS Society website about talking to kids about MS since they were coming home at 5pm. I missed Ruby and Zane so much. They only go away for one week a year and usually I really need the break when they leave, but I am DYING to see them when they return. I was scared, too. I was tired, achy, half blind, I had been tentatively diagnosed with a life changing, chronic, potentially (but not definitely) debilitating illness that has tons of unknown stuff connected to it and I was about to return to my full-time life as a single, mother of two young children.

I don't like the unknown. I like black, I like white, I don't like gray. Actually, I suck at gray. I like pretending that if I plan for every possible scenerio, it will somehow protect me from those worst possible scenerios. Even though I TRY REALLY HARD to live one day at a time, I would have trouble saying "no" if I had the opportunity to look into a crystal ball. I remember when preemie Zane finally came home from the NICU (I was at NEMC Maternal/Fetal Medicine for a month and he was in the NICU for 2 months.). I told my sister/friend, Christina that, for the last 3 months I had absolutely no control over my life. She chuckled and pointed out that I had NEVER had control over my life. I just realized it during the last 3 months. I have smart friends.
So, the kids came home. I went out of my way to make them a dinner they loved. (I have no idea what but it was probably pasta or hamburgers and ice pops for dessert.) During dinner, we did our best thing/worst thing routine where we go around the table and say our best and worst things for the day. The rules are simple: You have to have at least one best thing. If you have two worst things, you have to have two best things so you don't focus on the negative. Zane talked about going to New Jersey with his dad, Ruby, and his cousins, and going on water slide at an amusement park. Ruby's best and worst things were about vacatin, too. I remember her worst thing because it was hysterical. She was really looking forward to her cousin's pool which Cassie (who is Ruby's age) described as HUGE AND REALLY FUN. When they went out to the backyard, Ruby saw a small (not kiddy, but certainly not full-size, above ground pool) with water that only went up to Zane's waist. We have a big, in-ground pool at our condo so Ruby has a very different definition of HUGE AND REALLY FUN when it comes to pools. Ruby showed me her disappointed facial expression when she saw the pool.

When it was my turn, I told them that my best thing was them coming home and having dinner with them and that my worst thing was finding out I probably had MS--Multiple Sclerosis. I told them that I was having trouble seeing, but that the doctor thought it would get better. I told them I was very tired and needed to get extra rest. I told them I was not going to die of MS and it was not contagious. I told them I was still going to live to be a very old lady but that, unless someone really smart found a cure, I would have MS forever. I told them that I ordered some books from the MS Society Web site (Hey! Those still haven't come in!) and that I would find other kids for them to talk to who had moms and dads with MS. I told them that I was going to tell Daddy, too, and that they could tell whoever they wanted. I told them that I would answer any questions they had or anyone else had and if I didn't have the answers I would find them out. I think they asked for another ice pop. It was sort of anticlimactic.

We did our normal, nighttime routine. Bath, books, and bed for Zane first with lots of snuggling and back-rubbing to welcome him home. Ruby and I sat on the couch together and perused the kid section of the MS Society website. She played games, colored, and asked questions. Then I read to her, did some more snuggling, and sent her to bed.

Then, I was alone. With the MS.

I wrote the following email to Ruby and Zane's dad, my ex-husband, the man who I once loved and who loved me enough to reproduce and buy property together.

I have been diagnosed with MS--multiple sclerosis. I am seeing the best specialists (neurologist, neuro-opthalmologist, neuro-radiologist, etc.), reading a lot about it , getting my treatment/support team in place, and planning to talk to the kids about it tonight, Monday. I will tell them that I am not going to die from this, that I have no vision in my right eye right now, that I am more tired than usual, and that I have achey muscles but that those things will come and go and that I have the best doctors in the whole world taking care of me at Mass General. I am going to tell them that they did nothing to cause it, they can't catch it from me, and that they don't need to worry about me because I have lots of doctors taking care of me and friends helping me. I'm also going to tell them that there are books and movies about MS for kids whose parents have it and that I have ordered those.

I am telling you because the kids will probably bring it up and I didn't want you to be surprised.. If you have any questions, please ask me, not the kids. And please don't ask on the home answering machine. Thanks.

Julie

This is what we have come to. It may seem sad, but it works like this..or at least doesn't cause too much drama. Impersonal emails are the only thing that works when it comes to interacting with John. When I let down my firm boundaries, he rushes in and pisses all over my floor, if you know what I mean. We do not have what anyone would call an amicable divorce although I would like to one day. He has to stop being pissed off and mean first, though, and I have to stop being hurt and surprised when he is.

I hit send on my email, called Ken to say and hear "I love you" and tell him about the kids' homecoming, and then I went to bed.