Wednesday, February 17, 2010

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.


  1. Very well said. I have tried endlessly to explain to family and friends why parents on the SS Prematurity are different and how we have been changed forever to our very core because of the challenges we and our children face and will continue to face. I posted about it a while ago at in December of 2008 under the title "Why Are We Different Than Other Parents." My conclusion is that are very, very different because we spent weeks and months wondering if our children would survive to the next day.

    Eliza has been to over 4,000 hours of therapy and has had to work to achieve every milestone (even the "easy" ones). I realize that this hard for "normal" parents of "normal" kids to wrap their minds around, but the answer is not for them to act like our childrens' achievements are trite or to minimize our concerns.

    What they don't realize perhaps is that you and I would be reduced to tears if our kids ate a crappy, Happy Meal.

    You're not whining, you're being honest. Honest is a good thing.

  2. VERY well said. I'm so sorry for the insensitivity in your world. As a mother of a normal child (she's as textbook as they get) and the challenges that come with normal children - I truly can not fathom how you do what you do. I've actually said it out loud to Sarah - "How is she doing it?" Sarah says you're surviving because you're Nancy. :)

  3. I agree with Kelly's saying that you're surviving because you're Nancy. When I think back to the Summer of 1997 and Governor's School, I remember quite a few people. Who have I always remembered the most and the most about? Nancy Speas. Nancy who was from Brentwood and played the tuba and whose phone number was all in the corners and who treated my six-year-old niece who came to visit like she was a princess and talked to me even though I was a hick from a hick town and didn't know anybody or anything about anything, and...and...and....

    I can imagine wanting to be normal now and making things as easy for Becca as they possibly could be. But who else on this planet could do what you're doing? Nobody. Nobody because only Nancy Speas Hill could be so unique as to rise to this particular set of challenges. And only Nancy could be so handle anything so UN-normal. Loves and hugs, chick. Seriously. Loves and hugs.

  4. Thank you for this glimpse into what your not-normal life is like! I can't imagine.

    Regarding books: Kate loves the touchy-feely books we got her (Monster and Kitten) and I'd like to get Bunny for Easter and a few other things. Should I e-mail you or order off your website?

  5. Jessica - I just sent you a facebook message with details. In general, though, you can either order directly from the site or e-mail me at Thanks!

  6. You know what's funny, though? To us this IS normal. I think it's all those other kids and families that are out there that are strange. Taking a baby to the supermarket during flu season??? Now THAT'S crazy!:)

    I think what frustrates me the most... Okay, wait, the two things that frustrate me the most are

    A.) Pity, simply because just because my kid is different doesn't make him worthy of pity... But also,

    B.) The fact that we aren't supposed to complain about our children. Do you ever sit in a group of mothers like the group you went out with the other day, and they're all complaining about tantrums and food preferences and allergies and general mischeviousness, and then you complain about how your special needs child does x, y, or z, and then they tell you that you should just be thankful they're alive.


    Oh, that's right, because the other mothers have nothing at all to be thankful for.


  7. Beth Dixon tuned me into your blog a long time ago, but I've just been a lurker until now.
    The only thing I can think, and hope, is that maybe people say this in a weird attempt to make you feel not so alone or overwhelmed. To make Becca "fit in" with kids who have not had such challenges. (This makes sense the way I'm thinking it, but I know my words are not conveying well.)
    My 3 kids are all "normal," and I am thankful, but I think everyone is entitled to their gripes. Especially moms who have gone through and continue to go through experiences like yours.

  8. Breaking 5' is overrated. Love you--thanks for sharing.

  9. Okay, so the DARE officer at my school told me I was in danger of being a drug addict become I had low self-esteem. Or at least that's how my 10-year-old self heard it. That really helped my self-esteem, too. :-)

  10. I think we all had the same DARE officer and this may be a reason that he was gone after my fifth grade year ;)

    I enjoyed this post, Nancy. I admittedly get annoyed when other moms don't understand the precautions we have to take due to the kids' asthma, so I can HARDLY imagine the feelings you have. So thank you for sharing.

  11. Great post!! It got me thinking about what I've been feeling lately. I dont expect ppl to understand what the life for a micropreemie/preemie or their parents is really like... but what I cant stand is those who cant accept reality. When you discuss the severity of the situation and they respond "everything will be fine" or "she'll outgrow it" all the time. Im sorry ppl but not always do we get the fairy tale ending and thats ok.

  12. I am the mom of two healthy "normal" children.

    While some mom's may be trying to downplay what you go through I think most are just trying to say something nice to lighten things and not make you the one that is different from everyone else. In their own way they are probably trying to be inclusive.

    Since growing older and having kids I've had friends who have adopted, who have kids with autism and who have a child with special needs due to developmental problems.

    The one thing I've noticed is that moms tend to group together with other moms who have similar children and challenges. Not because they don't care about other or think they are better, but because it's easier to understand and relate to someone else who knows what you're special journey is like.

    The other thing I want to say is probably not going to be taken well, but I know that at times my friends with kids who have special needs seem to downplay my experiences as a mom with a "normal" child.

    Yes, I didn't have to worry through pregnancy or wait on placement. I don't have appointments to endless therapies or fights with insurance, but that doesn't mean that everything in my experience as a mom or with my kids is easy. It doesn't mean that I can't be frustrated or tired or have days when I need sympathy. And on the other hand it doesn't mean that the accomplishments I want to celebrate of my kids aren't just as amazing as the ones of the kid that struggles harder to get there.

    But, without meaning to, I've often had moms of special needs kids downplay all of that because my children are "normal"

    I am not saying that there isn't a very big difference. I can't imagine the many things that parents of kids with varying needs go through.
    But honestly no one can understand what someone else goes through.

    I just want to offer some perspective.


  13. I agree; motherhood is HARD, no matter what your circumstances! And everyone ought to have the space to celebrate their kids in whatever way is appropriate for them. And you're right, nobody every truly know what another person experiences. I try to be a good friend and celebrate milestones, pregnancies, etc with friends, even on those occasions that the celebration reminds me of my own pain. But I love their kids, too, and am excited for them! And the good friends celebrate back...even if they don't *truly* understand why I'm so excited.

  14. I'm a grandmother of a tiny baby and he and his mother are going through everything you documented, the eating issues, the numerous appointments, the therapies. Celebrate every milestone. My hat's off to you and all that you are handling. There are others who understand.