Over 18 years ago, I found out through a blood test and amniocentesis that my second child had Down syndrome. Back then, there wasn’t much in the way of the Web, so I went to the library. I found one book that talked a bit about children with DS and had a few pictures that weren’t really flattering. I didn’t feel I had much to turn to in the way of sweet stories, adorable photos of adorable kids and babies, support systems, etc.
That did start changing when I had her. I found out about Band of Angels, which at the time was creating gorgeous calendars featuring models with DS shot in lovely settings. We were officially entered into “early intervention” programs where we lived and she got help with physical and occupational and speech therapy and so on. I got involved in a local Arc.
But for so long, my daughter was little, a child. She was cute, she was the poster girl for the UCP Center’s yearly fundraising campaign. She was a doll, just lovable and outgoing and friendly.
And it’s kinda funny, because for a while now, there’s been more online awareness of younger children with Down syndrome. There are plenty of groups and cute photos that circle social media. But not a whole lot in the way of adults getting attention. (But now there is the A&E reality show “Born This Way,” that follows young adults with DS living their lives, so that is cool progress.)
In short, it was relatively “easy” to have a child with DS. It wasn’t a whole lot different than raising my other children.
She had a great time this spring playing in a local softball league for people with disabilities. SO cool.
What started a change was her adolescence. She hit 14 and started puberty. She got a period. She learned about wearing pads (and not to talk about them all the time in public). She became a teenager. The moodiness that’s hard to talk through, as I have done with my other teen girls; the periods; the observations about cute boys or about seeing her sister or friends at school dating or holding hands or kissing … it wasn’t something I was really prepared for. It wasn’t so “cute” a time as when the DS kids are younger and still sporting the adorableness of babies and preschoolers. So there’s not as many pictures, not as many inspirational stories circulating Facebook and the like. For me, my new situation parenting a DS teen was kind of uncharted territory.
And that’s become even more so now that she is 18. She’s legally an adult today. But unlike my older adult daughter, she doesn’t have a driver’s license, can’t help out driving herself and younger sisters around; doesn’t run errands for me; doesn’t babysit. She needs a bit of babysitting/supervision herself still. She’s emotionally and mentally really more like a 7- or 8-year-old in a lot of respects. But she’s bigger and developed and has a menstrual cycle. It’s harder to discipline her. She’s moody and just mumbles loudly or trounces off to her room and slams the door if I try to tell her, gently and kindly, that she should be nicer in how she speaks to her 9-year-old sister, for instance. I can’t really talk her through things.
In short, it’s not so cute anymore. It’s NOT not that different from parenting my other children, like when she was little. Don’t get me wrong: she is bright in many ways and really helpful and can be incredibly sweet. She’s pretty great. But it’s now really evident that she’s different. She has Down syndrome, and it’s obvious.
We’re getting her a state official I.D., not a driver’s license. We’re talking about some programs that she can do post-high school, next year. We’re starting to think more about what kinds of things she may be good at, what she will enjoy, for work-type opportunities, for socializing, for living arrangements. This is a whole new ballgame.
That story a parent wrote a few decades ago about embracing a new reality called “Welcome to Holland” seems to be hitting me now. The writer compared having a child with a disability as planning (during a pregnancy) on going on a “fabulous trip to Italy.” But then the new reality hits, and you’re going to Holland instead. In the past 18 years, especially, I’d say, the first 12 or 14, I was kind of going to Holland with Marissa, but I still had plenty of experience in Italy, with my other three children, for sure. And then with Marissa, I was kind of in Little Italy in Holland. Now, though, that feeling of visiting Italy at least through restaurants or guidebooks or seeing pictures on the Internet has dropped away. It’s hit me that I’m really in Holland.
It’s OK, just as the story goes. But I didn’t see it coming. Or I kind of did but now it’s hitting me. And I’m going through another adjustment period. And there’s not a lot in the way of cool or cutesy memes or stories or photos going around online — but, like I said, there is “Born This Way,” so that’s a good step in the right direction. Maybe I’ll start seeing more of that. And my sharing my experiences will prompt others to share. Or I’ll just start finding others’ stories more, seeing them amongst all the other stuff that’s online.
So here I am, my cruise ship permanently docked in Holland, at least with one of my children. I’ve got ships in Italy with the other three. It can be jarring a lot of the time to switch between the two countries. But I’ll make it work, and it’s a new adventure.
So we visited a few weeks ago, and talked for a while. She is fantastic because she’s very thoughtful and discusses the issues with me, asks probing questions, revisits assumptions, etc. We’re partners in my care, and I really feel she’s very knowledgeable, and she’s sensitive as well. That’s a biggie. She said to me that perhaps I’m not really on the bipolar spectrum at all. All she could say was that I’m just my own thing. So there might not be either a diagnosis for whatever I present as yet, or because mental health really is so varied and unique to each of us, maybe there isn’t or won’t be, if that makes sense. All we know is there have to be some kinds of ways to help me with some kind of existing medication so I can function better. So she said she’d try something, a medication that psychiatrists sometimes use to help with that part of mood. It’s a seizure medication used off-label in this way. She tried me on a very small dose, and I actually do feel it’s helping. My life is still CRAZY BUSY!, but I feel a little less like I have to work hard to manage my mood even while I’m managing my life. So I’m feeling hopeful and a little happier, just to have an extra tool in my arsenal, and to know that my practitioner is really awesome at her job.
Five years ago, when our oldest was a teen, it was announced that Prince was adding a last-minute concert in Fresno, near us. As soon as tickets were available, I pounced. I bought them for me and my husband and my teen. And we partied like it was 1999 (only it was 2011).
I’ve decided I’m going to make reading this book a once-a-year activity. Body of Truth is just that helpful. When I read it a year ago before it was even published, I dog-eared pages as I devoured it in just a day or two. I made my husband read it. THIS, this, is what everyone needs to know. I read it again this week in a day, dog-eared more pages, and considered making my husband read it again.
But since many diets fail in the long term, my goal right now is to work on the whole me, not just a number on a scale. After my oldest daughter’s wedding last year, I fell into a bit of a depression. I was grieving her “loss” (much as it was joyous and we gained so much, it really was a loss for her to move out permanently and to be “someone else’s” now too). With other things that were going on in my life, it was simply easiest to fall back into well-entrenched habits of eating to soothe myself. Now, I am going to work on more effective ways of really taking care of me. I plan to write in my journal regularly (lost that habit a long time ago: thanks, parenting), try some new fun physical activities and even make my weight loss a matter of prayer. I might even include some help from 12-step programs.