Random Thoughts

I was on my way home tonight and found myself listening to a story on NPR* about survivors of childhood cancer. In a blink, I was back in those terrifying days when J had had her prenatal diagnosis, and again after she had her emergency surgery at 5 weeks of age. It’s amazing how that anguish is still so near the surface for me. I don’t know that I’ll ever be free of it. J didn’t have cancer. And she’s grown to be a delightful, bright, and happy little girl. So it may seem odd that I was so struck by the stories I heard today.

I was absolutely struck by the conversations the host was having with the parents of children who had survived childhood cancer only to go on and develop life-threatening illnesses or developmental problems. The doctor being interviewed talked about the importance of after-care and follow up throughout the lifespan of the survivor. But in the next breath, she talked about how many children cannot face going back to the hospital for this much-needed care. They can’t face the IV poles and the needles and the sterile hallways and the environment in which they battled their disease. They suffer physical reactions to the sights and smells of the hospitals, which often leads them to abandon the very important regimen of lifelong care and awareness. Although I have never faced cancer myself, or with my children, this story hit very close to home for me. Before going through our experiences with J, I would have listened to that NPR story and thought that anyone who would disregard recommended treatment was just irrational and weak. However, having stood at the bedside of my very sick child for a week in the hospital, I understand. I understand the chill that must permeate those survivors and their families. I understand the desire to turn one’s back on a painful experience and shut out everything that serves as a reminder of difficult times. I know what it’s like to come to tears just driving past the hospital where bad news was delivered and a mother’s worst nightmare came to life.

I don’t take my children for granted, and neither do any of my friends with children. I don’t neglect their needs for the sake of my own comfort. If one of them should ever have to endure something as horrendous as cancer treatment, I would stay with them always, no matter the fear and pain it may cause me. It’s just what parents do, in my opinion. Up to this point, we have been blessed, having been given two healthy, developmentally normal children. I think it’s that fact that is sometimes taken for granted. I don’t go about my daily life thinking about the normalcy of it. I do spend a fair amount of time worrying about what may come tomorrow, or five years from now. Throughout two pregnancies, I worried and prayed for healthy, typical kids. As I watched both grow through toddlerhood, I was vigilantly watching the developmental milestones and charts. I worried that somewhere along the line, something would go wrong and my kids would be “different” and not as perfect as everyone else’s kids. I’m not exactly sure whose kids I was referring to. Furthermore, now that my kids are here and growing, I realize they’re far from “perfect,” but they are who they are, which to me is perfection itself. And the worrying continues anyway. Worries about accidents and illnesses and fears...and all sorts of things that have nothing to do with anything but the will of chance and circumstance.

It occurs to me that, as a society, we value perfection in our children. I certainly did. I was so worried before J was born that she wouldn’t be “perfect,” and that she would suffer with some lifelong disability that would somehow diminish her worth in this world. Without getting political about it, ending the pregnancy wasn’t an option for us, and as parents we believed that we were to be gifted a child, and perhaps a child that came with the tremendous responsibility of a life-altering disability. What I have learned and lived since then is that there is no “perfect” child. To me, my kids are perfect. To my mom-friends, their kids are perfect. To the parents of the children I serve, many of whom have genetic, congenital, or syndromic disabilities, their kids are perfect. Something I couldn’t understand before I was a mother is just how overwhelmingly powerful the maternal instinct is. That instinct to protect, and love, and encourage, and guide, and shelter from heartbreak and pain.

I know, and work with, some amazing parents of children who have different abilities. Who have to use alternative means to get around or communicate. Who “look different” and think differently, and perceive differently. These children present tremendous challenges, and I can only begin to understand a fraction of what their lives and their upbringing entails. When I watch those parents who are skilled in managing their disabled child, I feel quite certain that I could never do it myself. But who knows what tomorrow holds? That’s the pure uncertainty of choosing to love and desiring to raise children. It’s not about having “perfect” kids. It’s about constantly striving for “perfection” as a parent, realizing that there simply is no such thing, and going about life being thankful for the gifts we’ve been given.



*A sidenote about my NPR addiction. Last week I was in meetings with the special education director in one of the districts I serve. We were running a little late getting from one meeting to the next, so he offered me a ride in his truck, and I took him up on it. It was raining, and even though there was only about 100 yards between the buildings, I was grateful for the offer. When he started the car, some hard rock station out of Columbus started blaring at me. He laughed and said he was sure that “wasn’t my style.” He asked what I normally listen to. I told him NPR. His exact response? “NPR? That sounds boring! Isn’t that, like, news and stuff?”

Freakish.

I gave A a language test last week. The average standard score for kids his age is 100. He got a 148. I’ve heard that scores on such language tests can be loosely aligned to IQ scores, but whatever. I just thought it was funny that he thought it was so much fun to do. Weird. He asked me if we could do it again just yesterday.

I do realize that this language test was just that - a test of his receptive and expressive skills. Much to D’s chagrin, we don’t have a cheap and easy way to assess his math skills (the cheap and easy way to assess language skills being that I’m a speech pathologist and can pretty much do the language thing in my sleep...plus I have access to any number of language tests every day...). Even much more to D’s chagrin, he is my child too, which means he runs a 50/50 chance of totally sucking at math. Case in point:

Tonight at dinner, A said, “Mommy, think of a number between....1...and...10.”
me: 4!
A: uhhhhhhhhhhhh...
me: Is my number bigger or smaller than the one you’re thinking of?
A: ummmmmm, smaller!
me: 6!
A: Smaller!
D: 7!
A: Smaller!
me: 9!
A: uhhhhhhhhhhh...
me: A, what number are you thinking of?
A: SIXTEEN!!

Just Because It’s Hard Being a Registered Republican in a Swing State

I heard this today on the way home and nearly wrecked the car because I was laughing so hard.

You go, girl!

I was cruising through my daily blog-fest, determined to do it quickly tonight so that I can set up my sewing machine in the newly created computer/desk/guest/sewing/crafting room, when I came across a new link on a college friend’s blog.

It led me to the Central Illinois Food Allergy Network (CIFAN). My roomate, and one of my dearest friends from college, has begun a network of concerned and supportive parents and professionals who in some way are touched by food allergies. Sarah has a little one who will soon be 3. I remember talking with her in the early days and months of his life, when he had a seemingly uncurable case of eczema. She asked for hints on getting rid of cradle cap, and did I find it strange that he seemed to have cradle cap...well...kind of all over? I encourage anyone who visits this blog to please click the link here to go to CIFAN and read Sarah and Sam’s story.

I think that the severity, prevalence, and seriousness of food allergies is often underestimated by people who don’t deal with them. I must admit that in the early stages of Sam’s ordeal, I wondered what Sarah was getting so worried about. And then I heard about her journey with Sam and all that she was faced with. And the life changes it meant for Sarah, Nate, and their families. Going to the grocery store is no longer a quick and easy task for her. Leaving Sam at preschool means educating everyone who has contact with him (and worrying every moment he is out of her sight). Visiting relatives can be a stressful, worrisome thing. There’s no “just eat a peanut butter and jelly for lunch” for them. And, as a mom, I know that Sarah worries about any effects the allergies and the “differences” have on Sam. For my family, the reality of food allergies has hit even closer to home now that A has a friend at school with severe allergies to eggs, barley, soy, and other things (Think those allergies don’t mean anything? Imagine being a preschooler heading to a birthday party with friends, and being unable to share in the birthday cake and ice cream. Try going through a week without eating your favorite cereals, breads, and snacks because they likely contain enriched flour. Furthermore, imagine being the mother of this child who is becoming more independent and heading off to school, where you cannot be with him to check everything he eats, drinks, and plays with at the craft table...).

Sarah is an amazing person, something I’ve known for 13 years. She’s goal-driven and unstoppable and committed and loving. She’s also really, really smart. Even more than that, however...she is wise. She comes by that naturally. I can say that because I know her parents. And her sisters.

And so it really shouldn’t surprise me that Sarah and Nate’s struggles with Sam’s allergies have led to the creation of this organization. And it doesn’t surprise me. It really makes me stand back and watch in awe. Such a committed mom turning her frustration, worry, and uncertainty about the future into something so positive and necessary. I wish I were more like that!!

When we went through our third triemester of J’s pregnancy and the first few weeks of her life, having been told that she had a malformation of her brain, and then having that diagnosis miraculously turn false, I went through feelings of true anger and resentment. I had experienced the absolute height of worry, all because of a prenatal ultrasound that wasn’t entirely accurate (and we knew the possibility of that going in!). As the weeks passed with J, I read story after story about false ultrasound diagnoses that led to circumstances much less pleasing than ours, and I wanted so badly to save other moms the heartache that we had experienced. I had thoughts of springing into action and finding some way to educate others and locate resources and provide information. And then more weeks passed, and more life happened, and our story just became a little bump in our family’s timeline that we hardly think about anymore.

It’s those truly special, driven people who change their communities, their situations, and the world. Sarah is one of those people. And Sam (and Nate and baby H) is extrememly lucky that she takes care of him.

You couldn't even write this stuff!

The two funnies of the weekend (the first of which must be prefaced by the fact that D and I love the NPR show “Wait Wait...Don’t Tell Me”. He gets them downloaded onto his iPod every week and we listen to them whenever we’re in the van on long trips. The kids LOVE it. The start of the show is always met with groans by A.):

D was drilling J on her animals the other morning before we left for church. Just for good measure, I suppose. A was constantly trying to wiggle his way into their fun and give J the answers. D politely asked him to stop, and when he did, A looked at him and said, “It’s kind of like wait, wait don’t tell me!”

The other funny happened on Sunday afternoon, after church. Church had been a harrowing experience all on its own, with a maddening lack of nursery workers that caused us to have to take J into church with us (although her one redeeming cuteness of the morning was when she kept looking over the balcony to the priest and saying “FadderBill!! FadderBill!!”). Everyone was WAY ready for naps. But J decided not to take one, the little beastie. She rolled around in her crib for precisely 2 hours, at which time D and I snapped back into the real world and gave up on any hope that she would eventually go to sleep. We went in to get her up and found her sock-less and pants-less. I looked at her and, feigning anger, said, “J, where are your pants?” She looked frantically around the crib and said “Oh dear.”

They’re so entertaining that we hardly need cable!!

One of my best friends called me today. She is my person-I-don’t-see-enough-but-everytime-we-talk-on-the-phone-it’s-like-no-time-has-passed friend. I love her dearly. She is one of a very few friends I have who are the closest thing I have to a sister.

And she’s getting married!

She’s probably an unlikely friend, truth be known. We met as hallmates in college, before I realized my own conservative tendencies and before I realized that life’s too short to be judgmental. Out of my closest friends from school, she was the one I always expected would be married first. And now here we are, most of the rest of my close college pals having been married for 7 or 8 years, and she being excited about planning her wedding. It’s fabulous!! There is something about her having waited...having gone to school and lived her life and experienced many things in these years since graduation. I can’t imagine her having done anything else. And it truly does add a whole new dimension of excitement to her planning and dreaming and having the most beautiful day ever. She’ll never know how very much it means to me to have been asked to stand with her that day. That 13 years, one husband, two kids, a minivan, and (seemingly) a million miles haven’t changed our deep and enduring friendship.

I never think about my dear friend without remembering the night before we graduated from school. It seemed to me that all of my friends had plans. Some were getting married. Some were going on to graduate school. She was headed for a year of volunteer service in Washington. I had no definite plan other than to go home and job hunt. I was painfully sad. We talked on the phone that night until the early hours of the morning. We cried and worried that distance and circumstance would somehow change or diminish our friendship... and the next morning we held our diplomas, held one another, and said goodbye.

It’s been more years than I can really believe since that day. Our lives have changed so much since then. We’ve both completed graduate school and gone on to work in our chosen fields. We’ve both found the loves we were meant to find. I’ve become a mother. And she’s still the friend I would call at 3 o’clock in the morning if I needed to.

Here’s to you, my friend. Your joy at this time is my joy for you too. I can’t wait to share in your excitement and hope for the future. I love you and am deeply honored to share in that special day next summer.

Boys Will Be Boys. Or Something Like That.

Actually, I think on any given day I could supply a number of adjectives to describe boys. Most of the time I walk around stupefied by the whole race of them.

Here’s a good boy story. Yesterday I was talking with a woman who works with D. She has two boys, one of whom is in college (soon to graduate, I believe), and the other is in high school (also soon to graduate). We were marveling at the mess of crap we dig out of our washers and dryers after doing loads of boy clothes (yes, we’re two smart women; no, I don’t know why neither one of us ever goes through pockets before putting clothes in the wash). Anyway, I was laughing about having pulled a load of clothes out of the dryer and hearing a rolling, scratching sound coming from the inside of the dryer basket. I looked in and found a matchbox car rolling back and forth. That’s not to mention the thousands of coins, pebbles, crabapples, nuts/bolts, super bounce balls, stickers, tags, Legos, and small toy parts I find on a very regular (read: weekly) basis.

She was saying that she finds lots of coins too, as well as tons of other things that could only interest boys. Not long ago, she was doing her college-aged son’s laundry and found condoms! After making sure it was in fact the older boy’s clothes, and not the younger’s, I suppose she decided it was a good sign, at least, that there were condoms. In the long run, that’s better than not condoms, if you catch my drift.

Today I got an email from her saying that she found her younger boy’s iPod in the washer.

D told her it could be worse...she could’ve found condoms. Although condoms are much cheaper and they’re waterproof. But, he went on to say, he was unaware of any condom that could play 50 Cent or Ludakris at the touch of a button...

Yikes. I’m so not ready for a teenage boy. Here’s hoping he waits at least 20 or so years before he leaves condoms in his pockets. And if he doesn’t, here’s hoping he understands that finding them in the washer just might kill me, and that thought alone will make him feel bad enough to remove them from his pockets before he brings his laundry home for me to do.

Five.

Hey, pal. Today’s your big day!! You’re five today! To you it’s another year, another number, another something new. You’re bigger, smarter, and better at lots of things. This five fits you pretty well.

Do you know that before you came along, I wasn’t a mommy? You’re the one that made me a mother, and being your mom is one of my favorite things in the world. Every year on this day, I think back to the day you were born. It took so long for you to get here! We were so anxious to meet you. Two and a half days after we went to the hospital, you entered the world. The most striking thing about your birth, to me, has always been how your little eyes were wide open the moment you were born. It’s an image I remember so vividly. And it means so much to me now, because those wide eyes were just a glimpse at what was to come. To this day, your eyes are still wide open to the world…seeing, perceiving, taking it in, experiencing.

Something I have really enjoyed about being your mom lately has been how well I know you…and yet how much there is still to learn (and how you can really surprise me!). It may not seem like much of anything, but I loved filling out your paperwork for school and knowing your favorite color (green!), your favorite food (pancakes!), your favorite things to do (run! climb! read! watch movies!). I love experiencing your childhood with you. I love watching you learn new things. It’s still a new day every day to you. I could learn a lot from that!!

At five, here’s a rundown of everything it’s like to be you.

• You are reading now! Your dad and I are amazed at your ability to read. You still love being read to, and two stories every night before bed is your routine. It won’t be long before you’re able to do that all by yourself!
• You eat constantly, but rarely at meals. And you’re still so skinny that you have a hard time keeping your pants up.
• You like being outside but have a hard time remembering to stay in our yard. You love to play with J and L across the alley.
• You sing. All.The.Time.
• You’re in preschool and have made a whole bunch of new friends this year. It sounds like you like to paint and cut and play, but you aren’t into writing all that much.
• I won’t tell anyone, but you still really like to snuggle. And I really like it that you prefer to snuggle with me instead of your dad!
• You delight in teaching your sister all sorts of things, good and naughty.
• You have a seriously intense personality.
• The things you say all the time: “How many bites of this do you want me to eat?” “I’m hungry!” “But that will take forever!”
• You had a really hard time deciding what kind of birthday party to have and what to be for Halloween.
• You know no strangers.
• You can get seriously annoyed with your dad and me when we sing.
• When you’re brushing your teeth, you like to let the toothbrush hang out of your mouth while you play with everything within reach on the bathroom counter.
• You like movies and TV shows…especially anything on Nick GAS.
• You’re freakishly smart.
• You still nap…and have a really hard time when you don’t.
• You’re finally going to bed without a fuss…and staying there all night long.

It’s been a fun five years. Your dad and I were talking last night that it’s going to be just a blink of an eye before you’re grown up and leaving the nest. And yet five years ago, you were just a helpless, wide-eyed little bundle.

Thanks for making me a mom, Bug. On to the next five!!

(PS: I actually wrote this at the end of my work day. I had the joy of picking you up at the sitter’s, then bringing you home to a stack of birthday presents. In my life, I need more of the pure joy you exuded as you ripped open your gifts. Each one seemingly better than the last, each prompting a happy squeal from you. Enjoy five, pal. Enjoy your joy. Enjoy your childhood.)