Fear & Worry

“The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown” ― H.P. Lovecraft

There have been a few conversations over the past couple weeks that have got me thinking.

Last week, Fynn had a dental appointment. It was there that this exchange with the dental hygienist took place:

“How old is the baby?” She pointed to Mia, who was asleep in her carrier.

“Three months old,” I said.

“What’s her name?”

“Mia.”

“Is she healthy?”

I kind of stared at her for a second. I’m never sure how to answer this question. At this moment in time, she’s very healthy. She has a minor heart murmur. Does having Down syndrome mean she’s unhealthy?

So I responded, awkwardly, “Well, she was born with Down syndrome, but she’s very healthy.” I smiled a big smile to signal all was well.

“Have they talked to you about her teeth, yet?” The hygienist had a grave look.

“No, but I’m sure they’ll get to it. She’s only 3 months old,” I said as I tried to put an end to what was happening and kicking myself for bringing it up. Why didn’t I just hand her Mia’s chromosome analysis while I was at it?

“Well, sometimes their teeth come in crooked or they don’t come in at all,” she said knowingly.

I tried to hold it in. She was trying to be kind, but I’d had my fill of this kind of nonsense.

“I’ve heard that,” I said, “but it is the last thing I’m going to worry about right now. Besides, I know plenty of people whose teeth have never come in or have come in crooked. Like all of them, we’ll cross that bridge when we come to it.”

“Oh, okay. I suppose you’re right,” she said and went back to working on Fynn.

I know she was trying to be helpful, but what am I supposed to do with that information right now? Today? I can’t will her teeth to come in. Am I supposed to do some kind of “tooth rain dance?” Her teeth are going to be her teeth. Why is that something I need to worry about right now? There is nothing I can do about that at 3 months.

Thankfully for Mia and other people with Down syndrome, this is a highly studied population so we know what to look out for. However, sometimes there can be such a thing as too much information. Doctors don’t walk into every new mom’s room and hand her the Physician’s Desk Reference and say, “You should take a look at this, just so you know everything that could possibly go wrong.” Unfortunately, I got handed the manual of care for children with Down syndrome from birth to 22 years that the American Academy of Pediatrics puts out for DOCTORS by one of my pediatricians 24 hours after Mia was born. Well, thanks, I thought to myself, I’ll get right on figuring out how to talk to Mia about puberty. Good grief. That’s filed in the “unhelpful” category. It’s so much information to process. It’s great to be informed but some things can wait. Tell me what I need to know this week, this year, or even the first 3, but let’s hold off on dealing with birth control for a while, okay (and yes, that’s in there).

I want to be prepared, but constantly worrying about everything that could go wrong in the future could rob me of enjoying her today. Three months will turn into three years and then 3 decades so quickly, and I’ll have wasted my time with her worrying about the “what ifs” that may never ever happen.

At least I didn’t add her teeth to that list.

One other thing happened this week, and it hit me that I’ve been ridiculous. I was talking to Fynn’s OT about Mia. Fynn has a private OT and Mia works with Birth to 3 at the moment. It’s not that Fynn’s OT can’t handle Mia (she’d do great); it’s more of a cost thing. Right now, it’s more affordable for Mia to be in Birth to 3, especially as they add more services for her.

Well, I was talking to her about some of the great things that have happened – Mia rolling, her trying to scoot (that has mostly turned into her trying to roll both ways now), and just everything that has generally been going well – when I said, “She’s just been doing really great, but I know that one day she won’t be…” And I stopped.

Fynn’s OT was looking at me with a very serious look. “Why does there have to be a “but”? She asked me.

“I just want people to know that I understand that she, you know.” I stammered.

“Stop doing that,” she said. “From what you’ve said and from what I’ve seen here, she’s doing great. You have no idea what she’ll be able to do and neither does anyone else. Yes, it might take her longer to do things than other children, but that doesn’t mean she’ll never be able to do them. Believe in her.”

I smiled, “She’s doing great.”

“There you go,” she said.

I hadn’t even realized I was doing it. I was qualifying her success. I was ashamed. For all my talk about believing in her, I’d been selling her short and stealing her success. For crying out loud the CHILD IS CONSISTENTLY ROLLING OVER AT 3 MONTHS. She IS doing great. I couldn’t just be happy for her. I had to cloud it with my own worry and fear.

For all the things I can’t control in BOTH of my kids lives, I can control this. Both of my kids are doing great. They’re amazing. No “buts” or qualifications necessary.

It’s Friday, Nate’s home from traveling, and my kids are happy and healthy. I’m going to enjoy the weekend. Worry free, God willing.

Expectations

“Persons appear to us according to the light we throw upon them from our own minds.” –Laura Ingalls Wilder

I’ve been thinking about this for a long time – expectations. I’ll let you in on a little secret. I’m a little addicted to two things: blogs and forums. I read all kinds – for profit, personal, health. Blogs, blogs, and more blogs. Add in some discussion forums and I listen to a lot of strangers’ opinions.

After we learned about Mia’s possible diagnosis, reading them became more masochistic than really helpful. I mean, you either read someone’s really positive story or someone’s horror story. I’ve found that if you’re going to write a blog (especially a subject blog) then you have some pretty strong feelings about the issue at hand. It’s rather difficult to find a person with an average run-of-the-mill situation (run-of-the-mill doesn’t sell). Plus writers (good and bad) are fairly dramatic individuals just trying to tell a good story.

Which brings me to forums. Far worse than blogs, forums allow people to just say what they’re thinking – spontaneously. For good or bad, you get to read the immediate and not always well thought out impressions of your fellow human beings. Sigh.

However, it’s in these forums that I’ve discovered a paradox in expectations – especially as it relates to blog writers. Given Mia’s diagnosis, I’ve been gravitating to blogs about children and families dealing with disabilities. There are blogs I like and blogs I don’t. No use discussing that here. I mean, everyone has blogs/bloggers they like and those they can’t stand to read. What I have discovered is that some of the readers of these blogs have some very odd and inconsistent expectations for parents who have children with disabilities (maybe all humans in general). There is no right way to act or write. If the blogger is too positive then he or she “doesn’t know what they have coming to them” or is in “denial” or is “an amazing mother or father.” If the blogger is too negative then he or she is either “not dealing with the diagnosis well” or “being realistic.”

There’s no room for different experiences. People just see the blogger, and I suppose regular humans like me, through the lens of their own experience. If the reader or viewer had a negative experience with a child with special needs, then ALL people with children with special needs will have negative experiences. When they are shown something outside their own experience, they are suspicious of what they see. It’s only human to assume your experiences translate to others. That, of course, goes for positive experiences as well. It’s seductive to look at a positive situation and say, “That’s going to be me!” Well, not necessarily. Life has infinite possibilities.

In addition, readers assume that the blogger is letting them in on their innermost feelings. Blogging is not a private journal. You’re not reading a diary, just someone’s crafted thoughts. Some are more crafted than others. You don’t really KNOW someone unless you KNOW someone. Sometimes it’s not a good idea to trust the narrator, especially when they are narrating their own life.

I’m sure that extends to all of our family, friends, and acquaintances as well. We judge from a distance. How are they handling it? How do they afford it? Etc, etc. All very human and I’m guilty of that too.

With all of that said, I’ve never been more confused about how to act in my entire life. How am I expected to act? Am I doing or saying the right things? Which should I be? Positive or negative? I’m not quite sure how to be.

I’m not a naturally positive person. As I’ve said before, I’m pretty snide and sarcastic. However, I’m encouraged by things I see in Mia’s progress. I’m pleasantly surprised that she’s doing well and isn’t plagued by constant health problems so far. At this point, she’s doing the typical things that 3-month-olds do. I am always leery of the other shoe. When will it drop? However, being encouraged doesn’t mean I’m delusional. No more than having bad days means that I’m an emotional wreck all of the time. I’m gathering from the people I actually know who have children with special needs and my present experience (limited though it is) that life is pretty normal and boring. You still get up, go grocery shopping, watch TV, read books, have conversations, eat, and sleep. So, it’s just a life – an average, run-of-the-mill life. It does have its own special challenges, but everyone has their own special challenges.

In fact, sometimes I think I manufacture drama because life is supposed to be dramatic, right? Why isn’t life more dramatic? Shouldn’t this be more dramatic?

I’m just not sure where I fit on the spectrum of emotions. What kind of special needs parent am I? I have no idea. I spend my days being positive and negative, calm and anxious, frustrated and encouraged, happy and sad. To quote Walt Whitman, “Do I contradict myself? Very well, then, I contradict myself; I am large — I contain multitudes.”

I’m fortunate to have family and friends who are just letting me be, not questioning me too much, and allowing me to be a human full of contradictions. The support is awesome.

This morning I found myself lost in thought, worrying about one thing or another, and getting anxious and over thinking things. I looked down at Mia (who I was holding) and I realized she was smiling at me. She was just smiling at me with big expectant eyes. It reminded me that I need to worry less about what strangers may think or if I’m acting in the “right” way. I just have to be me. Live life. Love my people. Go with the flow.

And trust.

11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. – Jeremiah 29:11