A Primer

The longer Stella is in my life, the less she becomes defined by what she can't do. She simply is who she is, and I am still discovering what that person is like. So much so that sometimes I am a bit gobsmacked when we are out in public and some stranger points out in a shocked voice, " ... but she is not ___". [fill in the blank. walking, talking, drinking from a cup].

Most people, I think, mean well. Our society doesn't do a very good job at all at including those with any kind of differentness, let alone disability. At any rate, for those interested, here is a primer of what not to do.

(1) "But she looks normal!". Ah, yeah, thanks, I'll just start sewing a Scarlet "D" for "disability" onto all her clothes. I have to stop myself from replying, " ... but so do you!"

(2) Crying. This has only happened once, when I briefly mentioned why Stella had so many appointments, this casual acquaintance started to cry. I said that Stella was taking longer to reach her milestones, not that she was dying.

(3) "What did you do [to cause this]?" The geneticist has assured me that it was most likely nothing that I did while pregnant that caused Stella's disability, but some people seem unconvinced or want to share their most heartfelt theories with me ("it's all those ultrasounds!"). Ummmm, I'll be sure to tell Dr. Schorr that she can turn her research grant in now.

(4) "Oh, I'm so sorry". Sorry for what? That I have a beautiful, happy daughter? She's doesn't need your sympathy, and either do I. We need you to treat her as the person she is, but with a bit more patience because things take her a bit longer.

(5) Send a copy of the "Holland" article. Oh, how insightful. And no, it's not like finding yourself in Holland, it's like finding yourself in Afganistan. You didn't want to go to Afganistan, you would rather be in Spain, but here you are and you can appreciate the rugged beauty of it, but frankly, damn it, it's not Spain. Navigating the medical labrynith is more like a miltary campaign that it is like touring the countryside of Holland. There is this sappy the-disabled-are-closer-to-god crap that I find a bit weird -- everyone is flawed in some way, but it is more apparent in some of us than others.

Ring the bells that can still ring. Forget your perfect offspring.

There is a crack in everything. That is how the light gets in.

--Leonard Cohen ("Anthem")

Guilt, with a side of Worry

Today at Stella's development checkup, her locum/pediatrician Dr. Cassie suggested to me that I probably caused Stella's ACC by not taking enough folic acid. Lack of folic acid is linked to mid-line defects, she pointed out. I countered by saying that I had started taking pre-natal vitamins before I got pregnant. She thinks that because Francis has a high palate (apparently this is a mid-line defect) I should have know to take 6 mg of folic acid daily. This is roughly 5-6x the recommended dosage. She topped all this off nicely by telling me that, as a parent of a special needs child, perhaps I shouldn't be working. (Um, this isn't a decision to be made by myself and my husband? This isn't a decision that I revisit, oh, let's see ... daily?!)

To be honest, I am just gobsmacked that I could have caused Stella's disability. As it is, I spend many night laying awake wondering if it was the beer I had to celebrate Laura's new job, or the sushi I had with Maria, or if Francis kicked me in the stomach at just the wrong time .... I think that I will always wonder.

I think that I will always worry. I worry about Francis (is there something wrong that he wets the bed at night? should I be worried about his fine motor skills? are we doing a good enough job controlling his eczema?) but I worry even more about Stella. (Are we doing enough therapy? The right therapies? Why are her ears always infected? Is there an allergy I am missing? Is she getting enough sleep?) You know those job applications for McJobs? The ones that ask you to list your "personal interests and hobbies"? Well, mine is worrying about my kids. Why enjoy them when you can worry about them instead?

My other big hobby is guilt. Obviously others do not believe me that I am doing an excellent and complete job with my guilt that they feel that they have to contribute. I get the "what are you doing working since you have a child with special needs" a lot. A lot. I guess it doesn't matter that this is really a decision to be made between myself and my husband. Or that Stella loves, and I mean loves, daycare. (Oh, so of course I then feel guilty that I hadn't been socializing her enough before daycare ...). Or that I have invested, oh, 6 years of university, 3 years of professional certification and over 10 years in a career. (Not that that is reflected in my salary, unfortunately. Probably more a reflection of what a crappy negotiator I am.)

Hey, people? I've got the guilt and the worry thing covered, OK?

Fast! Like Batman!

Look at my boy! Here he is at his very first downhill ski lesson! I am actually surprised how much he enjoyed it -- he doesn't like to turn or to stop (a bit of a problem for others on the hill) -- he likes to "go whoosh, down, Mama, fast like Batman". (How he knows who Batman is is another mystery).

I really want to enroll him in the "Jackrabbit" kids cross-country program next year , which is supposed to be excellent. Actually, if Francis grows up and never straps on a pair of skis again, I would be sad but it would be OK. I just want to communicate to him that exercise is an important (and fun!) part of daily life, and to value the outdoors. Look at him in the picture above! How could I not be a Proud Mama?

Speaking of how I am a Proud Mama, Stella has made some milestones. She can clap her hands in delight now, and waves hello, albeit ham-fisted. She can suck by herself from a juicebox straw -- we are on our way to drinking from a cup. She is learning to turn pages in a book. She can push up on her hands when she is on her tummy. (I am hoping for crawling in the next 6 months). I believe that being at daycare has been good for her -- getting to know other caregivers, and more importantly, seeing what her peers can do. Stella appears to be very socially motivated -- which is a very good thing since ACC very often manifests in Autistic-like behaviours.

Am I not the luckiest Mama ever? How proud I am of my poppets.