Part I

I've been mulling over this post for a while, and although my thoughts are still not completely "collected" on the issue, I thought I'd at least let you in on the process. I don't suppose one is ever really fully collected, if that's even possible. There's always learning and growing going on, and our family is on a journey. My understanding has evolved over time, as I have researched and read and listened and lived.

I think that I've always known that my first child was not normal, not even sort-of close to normal, from before she was even a year old. But God knows us best, and knows that if we knew the end from the beginning, we might not walk the path He intends for us because we'd be frightened. He gives us the pieces of the puzzle we need at the time that we need them, and saves the others for later. At any rate, much of what I thought at the time (and have thought all along the way) was just due to her having been adopted and just being different than me. She was also my first, and from what I've heard from many parents, the first one's the experimental one. I didn't really have any basis for comparison.

My entire parenting journey has actually, in some ways, been a journey of grief. Grief in gradual, imperceptible stages, but grief nonetheless. What are the stages of grief? Shock... anger... denial... bargaining... acceptance... are there others? I don't know. But according to Rick, these stages can be experienced in any order, even some stages over again, and I have found this to be true.

When someone experiences the sudden death of someone close, shock is almost always the first thing. With parenting and the journey of discovering just exactly who this little human being is becoming, shock isn't always first. That would imply that we actually found out something concrete and worked through it. No, we always had a vague notion that things weren't okay, but we spent ourselves on anger, denial, bargaining, and even acceptance. Shock -- sometimes heart-stopping shock -- has only really come as she has grown older and has begun exhibiting outward behaviors that are undeniable indicators of the illness.

Now I'm going to back up a little bit. I've been privately asked by more than one person to please stop blogging about this issue. My first inclination was to agree and to acquiesce. After all, it's embarrassing, right? Embarrassing to the family, embarrassing to her... it's unpleasant and it's not pretty; it's even scary for some people. It's not perfect or fun or happy.

I deleted every post about the subject that I'd written to that point, and I washed my hands of it.

Except that you can't wash this off your hands. It's always there. And it isn't going away. It's as much a part of our family as Alice's seizures.

Like Alice's seizures, however, Bipolar Disorder doesn't define us. It's just one thing we have to live with. But no-one has ever asked me to stop blogging about Alice's neurological condition. So what's the difference?

I mean, Alice's seizures occur in her brain, just as Martha's bipolar disorder does. In some ways, bipolar disorder can even be seen as a seizure as well, only this kind of seizure affects her emotional and rational centers rather than her physical centers. Both my girls have something catty-wampus in their brains, and it comes out in different ways. So why is one okay to talk about and not the other?

Thirty or forty years ago, even Alice's condition would've been a hush-hush thing. You didn't talk about people who "weren't right." You either put them out of sight in an institution or you kept them at home and didn't discuss the issue. You suffered in silence; after all, no-one wants to know when things are unpleasant. As you grew older, you joked with the cousins about "Crazy Aunt Edna," who talked to imaginary people, but nobody ever just came out and admitted that Aunt Edna probably suffered from schizophrenia.

Nowadays it can even be seen as "in vogue" to discuss physical disabilities... as if we're some sort of saints for adopting a child who we knew was physically disabled, or even better yet, that I'm a "SPECIAL EDUCATION TEACHER" who actually chose to WORK WITH disabled individuals. What comes to your mind when you read or hear the words "Special Education Teacher?" Do you envision a classroom full of wheelchairs and children with leg braces or hearing aids or white canes? How altruistic of me to do that sort of thing!

And how martyr-like of us to discuss having to take Alice to the neurologist and have MRI scans on her brain and EEGs and giving her doses of strong anti-convulsant medications every morning and night... and that her seizures are intractable and don't really stop happening even though she's on these high doses of medications... and that she continually experiences the visual phenomenon of everything getting smaller and backing away from her until she blinks her eyes and brings it all back to normal. What a sweet little girl to endure the monthly hormone shots at the endocrinologist to prevent her from going into puberty prematurely. You see, all these things aren't so bad to talk about because Alice herself is pleasant, sweet and gentle. She's a joy to be with. She's cheerful. Cheerful, joyful people are fun to be around, even if they have disabilities.

Not so much the ones that suffer from outbursts of irrational emotions, or the ones who swear or who are fascinated by sex.

You see, those are things that can also be mistaken for actual character flaws, those things that normal people sometimes do when they're misbehaving. Therefore, someone might think that we're bad parents or even bad people if they see her do those things.

Back to the issue at hand -- talk about our lives the way they are, or keep some things to ourselves? Being a confrontational, out-in-the-open kind of person by nature, it is my inclination to discuss things honestly and openly. In this way, I can possibly bring in the wisdom of others who might have experienced similar situations, and even more likely, I can educate my readers -- give them a glimpse into the world of families with disabilities of many types -- and in turn hopefully make it seem less scary, more frank and matter-of-fact, and less stigmatized.

I know that lots of members of my extended family from all over the country read this blog from time to time, to catch up with me and with my family. It is this fact which has brought the most trepidation in this situation... "Kris, do you really want the rest of the family knowing all this stuff?"... and my answer then has to be YES. I do. I want them to know, but not because I want them to pity us or fear her. I want them -- and everyone else -- to KNOW... to put real, human faces on scary, impersonal "disorders" like bipolar or epilepsy... and to GROW... to learn to see people all around them in a more authentic way, and even to come out of denial about the issues they themselves may be facing and hiding.

I have experienced the most personal growth when I have been the most honest with myself and have allowed God to show me the unvarnished truth about myself. If I go on pretending something doesn't exist, I never get to work through it.

So it comes down to TRUTH. And that, my dear readers and friends, is where I will begin this series.

Can you handle the truth?