I promised myself that when I started this blog I would be totally honest about what I was experiencing, that I would not self-edit — or even take into consideration my readers — who are now seven in number, I think.  Especially if I had the thought “oh no, I can’t say that,”  then I would definitely say it.

So I have a confession.  I have lost the will to cook.  I haven’t cooked but a handful of times in the last four months.  If I had it my way there would be no food in our house, we’d eat all our meals out.  I hate to be in the kitchen, I don’t want to know what’s for dinner, go grocery shopping, nothing.  I am eating at least, for a couple of months even that was hard — I just had no appetite.  

For those of you who know me, and if you’re reading this I guess you do — you know that I love food.  I am one of those “live to eat” people, at least I was.  I used to sleep with the Food Network on the t.v., I TiVo’ed Paula, Bobby, Giada, Alton, and Rachael and never missed an episode.  I planned vacations around food, where is there to eat, what can we try that we don’t have at home?  In fact, I don’t consider it a vacation if I don’t get to have breakfast in a restaurant.  My wish list was full of cooking utensils and my dining room is a library of cookbooks.

On the Sunday after Hope was born I was home with my mom.  Tammy was pulling her “shift” in the NICU, she was due home at five but didn’t make it back until seven.  I was so exhausted that I didn’t think to worry about her delay until she was home, and I failed to notice or wonder why my mom was suddenly leaving for the front yard to take phone calls.  When Tammy walked in she was visibly shaken.  I knew that her folks had visited the hospital for the first time since Hope’s birth and figured that had been emotional for her.  But there was something more.  She sat down and told me that the geneticist had just been in to see Hope.  That was the first time I ever heard about Prader-Willi Syndrome.

Tammy explained through her tears what it meant until I stopped her and asked simply, “is this going to kill her?”  She said no and we migrated to the computer, Tammy, me, my mom, and Aunt Lydia.  We googled Prader-Willi and clicked on the Wikipedia link.  I can be an extremely fast reader when I need to be.  I quickly scanned the relatively short article, as much in self-defense as for any other reason.  If I had been an animated character you would have watched my life just drain from me, head to toe, as I scrolled down the page and in that moment I remember thinking, “well, that’s it, no more food, no more cooking, it’s all gone.”

The next night Tammy and I had dinner at the cafeteria at the hospital.  I knew I needed to eat, only one week after Hope’s birth I had already lost twenty of the 29 lbs. I had gained.  As I browsed the selections I felt sick, I ordered a sensible and nutritious dinner and sat down at the table and sobbed — over pizza.  Why pizza?  Through sobs I told Tammy that I really wanted the pizza but was afraid to eat it, afraid the taste of pizza might make it to my breastmilk and that my week-old daughter might develop a taste for pizza.

I’ve had pizza since then, but even now there isn’t a bite I take that isn’t tinged with guilt and I really don’t enjoy food the way I used to.  And I have to admit that the very nature of Hope’s diagnosis has left me feeling a little slighted by God.  I mean of all the rare genetic disorders there are, this one feels like a personal affront to me.  I know that must seem ridiculous and selfish, but why give a foodie a kid with a disorder that is going to make food a threat?  That’s just mean.  I dreamed of Christmas cookies and making dinner with my girls, now that’s gone.

Of course people say my cooking chops make me perfectly suited to care for Hope, just as Tammy’s dedication to exercise does her.  I remember saying the exact same thing to Tammy that Sunday night.  Maybe it’s just a phase, maybe it’s the PPD, maybe I just needed a break.  In little ways here and there I’m trying to ease myself back into things, poor Tammy can’t be expected to work and cook dinner and shouldn’t have to.  But for now, my knives are packed.

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