I really didn’t want to write this post. I’ve sat here, for the past 24 hours, trying to find the right words. I don’t think words can possibly convey what I’m feeling, but I will do my best.

I am a mom of two preemies. My daughter was born during an emergency c-section ten weeks early and weighed just over two pounds. My son was taken from me seven weeks too soon because his congenital heart defect was worsening in utero. He tipped the scales at three pounds, eight ounces.

Needless to say, I have spent a lot of time in hospitals. My daughter stayed in intensive care for her first five weeks of life and my son has had nine surgeries and has been hospitalized numerous times. When he was an infant, if he so much as got a cold they admitted him, partly because of his underlying health problems, but also because he was premature and very, very small. On his first birthday, he weighed just thirteen pounds.

When you have a child who is premature, small and sick you seek out other parents who are in the same boat. Especially those who can still manage to have a sense of humor about the awful situation into which they have been thrust; the kind of people who understand the lingo, and the acronyms and what it’s like to have therapists practically coming out of your rear end.

We know our children’s medical history as well as we know our own phone number…probably better. We know the ins and outs of the health insurance industry, our doctors consider us family and pharmacists become our good friends. Parents of preemies know what it’s like to feed your kid every three hours, round the clock, for their first year just so they can maybe gain a few ounces.

We watch our children fight and claw their way to milestones like little soldiers. We can commiserate and we understand each other, and every now and then we have to help pick each other up…because sometimes all the hard work and struggles of raising a preemie don’t pay off. Sometimes the soldiers just can’t fight anymore.

This is Maddie. She was 17 months old and was still fighting up until the very end, which came day before yesterday. My heart breaks for her parents. Parents who were just like me and my husband up until Maddie died.

We are not in the same boat anymore. My family is sailing along on occasionally choppy waters, while their vessel has been completely overturned.

I am giving thanks that we have been very fortunate and I will hug my kids a whole lot tighter tonight. In Maddie’s memory we will continue our fight. Rest easy, child. Struggle no more. You have fought hard enough.

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This morning my six year old son had an appointment with a psychologist. He was evaluated because we are searching for a diagnosis in order for him to continue receiving an hour of one-on-one speech therapy each week. Therapy which is completely paid for by our county.

Because his report card is perfect and because extensive genetic testing didn’t turn up a particular disorder, this is our last resort. Not that I want my son to be labeled, but those therapy sessions cost $250.00 a week and are extremely beneficial. I would hate to kiss them goodbye.

We certainly can’t swing an extra bill for $1000.00 a month. Not unless we want to give up something like oh, say…food. Without a diagnosis of some sort, speech therapy will be no more.

So I was pretty thrilled when I was filling out forms for the psychologist and read the question – Does your child ever make inappropriate comments to people such as, “Your sweater is ugly” or “You’re fat”?

Because if they’re judging him based on that? I don’t have a thing to worry about.

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My best friend, Bean, saves everything. It has been particularly beneficial when I want to remember something that happened years ago and need help jogging my memory. She will inevitably pull up her organized computer files and find whatever I’m looking for, then will resend me e-mails that I sent her in 2004 just so I can know which work-out tape I was using when it hurt so much that I called the instructor some very colorful names. Kathy Smith, you mock me with all that talking…and breathing.

Yesterday, Bean sent me this from August, 2002. My son was three months old and obviously having difficulty sleeping. I had sent her this e-mail, probably to vent as I so often did.

I don’t know what to do with him. He’s been aspirating on spit-up the past couple of nights, so last night I put him in his car seat to sleep, but he still did it. He doesn’t breathe very well in his car seat either. I can make sure he’s on his side so he won’t choke on it, but I can’t stop it from going up his nose, and understandably, when that happens he freaks out. He tenses up and won’t take a breath. I’ve heard him do it the past few nights and was able to get to him before he bradied (bradycardia…where his heart rate drops dangerously low), but he’s certainly not resting well and neither am I.

What amazes me, is that I had forgotten all about this period of time, but reading about it brought it all back. I now vividly remember his tiny body stiffening and the gulping sound he would make as he struggled to get air down his throat because his nose was filled with fluid. My, maybe, six pound, three month old probably felt like he was drowning.

I figure that I forgot these episodes because there have been so many other tough experiences with my son and it’s much easier and makes me much happier to remember the fun stuff. Which is mostly what I write about here.

But, that doesn’t mean I will ever forget the first time I stroked my son’s head, or the first time he was wheeled away from us for heart surgery, or when a nurse stood over him when he stopped breathing in the recovery room after a surgery three years ago and yelled in my boy’s face, “Don’t quit on me!”

Some things you can’t forget even if you want to.

But, I much prefer to think about the time when we were in Target and he ran away from me and yelled for me to “come chase him and pinch his butt”, or the time when he asked me if he could take a quarter to school for “Q” day and put it in the “little pocket on the front of his underwear”, or when he saw a woman in a red sweat-suit and called her “Santa’s brother”. I could never decide if it was worse to get insulted by a five-year old, get called a man, or be told you resemble a jolly old elf.

He once told a very much alive, elderly woman that she had “died” because she was old. He mentioned to our cable repairman that he looked like Santa, because of his “big round belly”. And, it’s a toss-up as to whether my personal favorite is the time when he told a masculine woman that she looked like “kind of a girl”, or when we were at the doctor’s office and he mistook two Muslim women’s head scarves for bandannas and called them both “pirates”.

Some things you can’t forget and never, ever want to.

These things that mortified me at the time, now make me laugh and remind me that despite everything this kid has gone through, he still has an amazing spirit and this gift of wit and sarcasm like none I’ve ever seen.

Which is why I’m glad Bean sent me that e-mail. To remind me not to sweat the small stuff, because my son has come so far. So very far. And, through it all he has chosen to make us laugh instead of complain.

However, none of this can make me stop calling Kathy Smith names.

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My ten year old daughter has always battled me at mealtime. She was born 10 weeks early and was fed through a tube for two weeks before I begged the doctors to let us try bottle feeding her. I have a home video of that first bottle and halfway through you can hear the monitor sound an alarm to let us know her heart rate was dropping dangerously low. Things have only gone downhill from there.

If she was permitted to exist on popcorn, chicken nuggets and Ho Hos there would be no problem at all. The girl is totally doomed when she gets to college. Let’s hope she continues to play three sports.

When she was a toddler she would pick at her plate and it would take her an hour-and-a-half to eat a meal. People thought I was kidding until they saw it for themselves.

After Thanksgiving one year, we even received a note from a dear great-aunt who told us how impressed she was with the way our daughter sat at her seat and ate her food, while her cousins left the table and played all around her. For an hour. We didn’t have the heart to tell her that it was only because there was turkey and, for crying out loud, she has to chew turkey 136 times before she would swallow a bite. At least it made us look like good parents. For once.

She was so picky in kindergarten, that she would come home with one quarter of her sandwich eaten, and nothing else. I could hear her stomach growling from three blocks away.

Now that she’s been around for over a decade, I have learned to work with it.

Tonight I made salmon, which is one of her favorite things to eat. As we always do, we went over our best and worst parts of our day.

And darn if I don’t have to work a little harder, because when I asked my daughter to tell us the worst part of her day, she didn’t hesitate in saying, “That this salmon has no flavor.”

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