On [Not] Being Normal

Warning: the blog post you are about to read could be interpreted as being whiney. While I am a champion whiner, please know that my intention to help you wonderful readers understand my experience of parenting a little bit better. You've been warned. :)

Recently, I have had several well-meaning mothers inform me that there is no such thing as a "normal" child.

I beg to differ.

I am well aware that each and every child on this earth is a unique individual, created by God and in need of an individual type of nurturing that respects his or her individuality. We're individuals. Got it. And yes, your child is very, very special. I'm not saying that normal kids are cookie-cutter kids.

But...claiming that there is no "normal" trivializes my experience of motherhood - and Becca's experience of growing up different. You see, if you say there is no normal, you imply that there is no abnormal. And while my child is no more special than yours, our life together is, simply put, not normal. I can't recall ever hearing a mother of a child with special needs saying that there is no such thing as a normal kid. We moms know all too well what it's like to be abnormal. And even excepting the extraordinary circumstances surrounding Becca's birth and the first 4 months of her life spent in a hospital, Becca is still not a normal child.

People accustomed to normal children simply do not get it. For example, I was at lunch with a group of friends the other day. They asked how Becca was doing, and I said that she was doing well. In fact, she's doing so well that she ate 3 whole, fresh strawberries at lunch the day before. I made this announcement with great bravado and was met with not congratulations, high fives, or exclamations, but...silence. When I explained that we have been in therapy 3 times a week for months in order to achieve such a milestone, they did warm up a bit, but they were nowhere near as impressed with my child as I was. Because they don't get it, even though they are lovely, compassionate people. Why should they understand? I didn't understand until little missy came along.

A normal child eats when she is hungry. A normal child loves to play with messy food. A normal child probably has to go to some kind of therapy at some point in her childhood, whether it's speech, occupational, etc., but probably not 5 times a week, indefinitely. A normal child has some quirks, but they usually don't interfere with basic life necessities. A normal child may be big or small, but is on the growth chart somewhere. You know, with a height that isn't so low that it's in the weight section and a weight that is in the box with the Abbott Nutrition advertisement. (Moms out there know what I mean.) A normal kid is allowed to be around other normal kids. A normal kid gets to make friends. And go play. And check out library books (not that there is any shortage of books in our house these days!). And a normal mom gets to drop her kid in the nursery while she goes to church, to the YMCA, to Bible study, to a mom's group, somewhere, anywhere, outside the house!

Normal is not:

• Trekking 32 miles round-trip for 4 therapies a week, in addition to 1 in-home therapy each week.
• Regularly travelling 80.8 miles round-trip to be seen by 6 specialists.
• Wearing 6-9 month clothing (yep, she's moving up!) 20 months after you are born.
• Not being able to bring yourself to let someone put a spoonful of food in your mouth no matter how much you want it because people shoved tubes down that same mouth for months and months.
• Not being able to function when you get something on your hands because your sensory system didn't have time to develop. Seriously, she f.r.e.e.z.e.s if her hands get anything wet, sticky, or squishy on them, though she is improving here as well.
• Not crying when you get your toddler shots.
• Having to quit your job and set your career aside because your child is too medically fragile to go to daycare. (But I'm really not complaining about this one. It kind of gave me permission to do what I secretly wanted to do all along. But having to do it is still unfortunate.)
• Then having to start a home-based business because you're having to tap into savings because you've had to leave your professional job behind (see above) and you can't afford the ancillary expenses of having a child with special needs (see below). [The business, by the way, is going well.]
• Spending beyond your means to special order food from California (most of which becomes very expensive dog treats), repeatedly fill the gas tank to make it to all those aforementioned appointments, pay premium for the few clothes that actually fit because you have an infant-sized--toddler-shaped child (thank goodness that the grandmothers help out here, along with copious amounts of hand-me-downs), purchase the therapeutic supplies and toy that the therapists "prescribe," and so on and so forth and so on and so forth. See why the break we got with TennCare is so important? And how we'd be s-c-r-e-w-e-d if we ever lost our health insurance (cough, cough REFORM, cough, cough).
• Evaluating every cough, sneeze, sniffle, warm forehead, inexplicable fussy time, or clinginess to make sure that this isn't "the big one" that you fear and secretly expect to come about.
• Counting your child's calories and nutrients -- and feeling her ribs when getting her dressed -- because if she doesn't gain weight, the doctors will cut a hole in her stomach through which food will be deposited.
• Crossing your fingers that your child will walk before her second birthday and doing exercises every day to boost the chances that she will.
• Becoming a mind reader because your toddler communicates even less than other children her adjusted age. Okay, all moms of toddlers have to become mind readers...but our mind reading phase is lasting longer than most. Thank goodness for baby signs!
• Pondering whether or not you should soon begin giving your child daily injections that you will have to continue for the next 12 years in order to give her a fighting chance at breaking 5'.
• Having to plan your life around your proximity to a major children's hospital because your child will need special care for years to come.
• Having to plan your life around your proximity to your high-risk obstetrician and a top ranked NICU (not just any NICU will do for Hill babies, we now know!) because of the high risk that you and/or your child could have very, very serious complications if you were to become pregnant again.

At the same time, though, Becca does lead a more normal life than many other children. We do expect her to eventually do all the things that other kids do. I mean, she probably won't be in the WNBA, but she'll walk, talk, run, go to school, make friends, eat, play sports, dream of being in the Olympics (I'm thinking ice skating or gymnastics - or both, but no pressure), go on dates (if she wants to), go to college (is she can), get married (if she wants to), make me a grandmother (if she wants to...I guess...but if I had to choose between this one and the Olympics, I'd go with the grandbabies, but not until she is settled in a quality relationship (preferably a marriage) and old enough and ready to be a mother herself. But I digress.). And right now she's not on oxygen, not hooked up to any machines, is able to get herself around, and is able to live at home. I know that we are a lot closer to normal than a lot of families. And I am grateful for it. And because I am grateful for it, I will not minimize their challenges by saying, "Oh, all kids have challenges and everyone has their own special needs."

I don't know; maybe I am complaining. I guess I am. What bothers me is not Becca (duh). What bothers me is not even the fact that we deal with all of these difficulties. She's so beyond worth it. What bothers me is when people think they understand and try to skim over the difficult bits of our lives. It seems like it's easy to do now that Becca is doing so well. She looks so good and strong, and medically, she is doing great. But there is far more to the story than meets the eye. Ans so when people miss that fact, like when they laughingly say, "Oh, there's no such thing as a normal kid!" (or when they question the decisions I make on behalf of my child - like whether or not to take her to public gatherings, etc. - but that's an entire post in itself!), I get frustrated.

Those of you who know me personally know that I have never tried to be normal. In 5th grade, I got in trouble with our DARE officer who thought my self-esteem was low because I took being called "weird" as a compliment. (Why he got mad at me for it, I don't know. My pastoral mind now has some questions about his own self-image!) I've never before wanted to be the same as everyone else. But frankly, since that first maternal-fetal appointment in April of 2008, that's all I've wanted to be. Normal. Someday we'll get there. If you are there now, please be thankful. And be careful what you say to those of us who aren't.