Some of the Latest

Oh, my, it has been a while, hasn't it? Holidays have come and gone, a new year has begun, and a bunch of other stuff happened, too. I'll get to that. First, I want everyone to know that we had a fun, busy, well-traveled Christmas. Some of you may have seen a picture looking similar to this on a Christmas card:

...and those who have children know that this is just one of about 100 shots. What nobody outside my immediate family knows, but to which this picture gives some evidence, is that neither of my children was wearing pants. There, I said it. Merry, merry, y'all!

 That is my happy boy, Ben. He's 20 months old now and still the sweetest little boy you ever met! I haven't thought of a good or easy way to say this, so I'll just get clinical.  Landy, Ben, and I went to the Genetics office at UNC for genetic testing in November, thinking we would all receive testing to discover the likelihood of passing on whatever genetic anomaly has caused Ben's periventricular heterotopia to possible future children or if John and Ben could carry that gene as well. We certainly didn't go expecting a diagnosis of any sort, but let's just say that we didn't get what we came to find.  After speaking at length to a genetic counselor, we were greeted by the doctor, who had reviewed all of the materials I had brought. (I have a sizable file including all of Ben's medical records, photographs, therapy histories, etc.) She sat down, gave us a smile, and said, "Ben has microcephaly. He will never be normal." I'm sure that she threw in a few other words and phrases here and there, but that's all I could hear. She and her words now live on Ben's Chances of Microcephaly Spectrum, she at one end, Ben's disagreeing pediatrician on the other, and his neurologist in the middle. He says it's just too early to make a diagnosis like that. Let me just tell you that microcephaly can be terrible. I don't want it. Since November, I have gotten up every day and worked very hard on accepting that this may very well just be, and most days I manage to enjoy my children, my friends, my husband, a book (ok, half a page of a book), a glass of wine (ok, 3 glasses of wine), or other things normal folks enjoy. 

BUT. I also have THOSE days. There are days when I just can't do it. I start to feel angry and resentful, and I focus on what other people have. On those days, I hate Jon and Kate and their 8 perfect children, I hate Dora the Explorer and her big fat head, I hate some perfectly nice looking lady in a waiting room who has a 14 month old who is climbing all over the chairs and pointing at everything, saying words, and I hate feeling that way. So I chase that all out of my mind. But. let. me. tell. you. I don't know if there is a worse feeling in the world than realizing that you are jealous of your own child. Sometimes, when John tells me something I can't believe a 5 year old knows, or when he asks me to time him as he runs up and down the hallway, I have to concentrate very hard to feel proud or playful instead of wondering if Ben will ever be able to understand or do things the way his brother does. PLEASE KNOW THAT I DO NOT FEEL THIS WAY ALL OF THE TIME, so please, I don't want anyone to show up at my door with a straightjacket and take me away. Not unless you're going to take me to a place where I can sleep and get spa treatments and then bring me back after the weekend. 

When I feel that low, I am forced to remind myself that although Ben might not be a normal little boy, he is a happy and healthy little boy. He has physical therapy, not chemotherapy. He has a neurologist, not a cardiologist. He has a cold that will go away, not a fragile immune system that leaves him vulnerable. I go to bed thinking about what he will be able to do someday, taking for granted that his someday is a long way off. While I sometimes fear what life will be for him, I do not fear for his life. 

I love you, Ben. 

I love you, John.

I love you, Landy.

I love you, friends.

 

Thanks for listening while I got all that out - I promise to lighten the mood next time!