Posts Filed Under Prematurity

Squeeze Play

posted by Momo Fali on March 29, 2011

When I was in high school, I used to starve myself.  It wasn’t to the point that I had an eating disorder, but there were times I would go days where the only thing I would eat was a piece of cheese.  That was only if I was feeling light-headed.

Somewhere along the line, I started eating cheese because it tasted good and not because it kept me from passing out.  Then I had sick babies and started eating cheese because the very act of chewing took my mind off of the thought that my children might not survive.

Then I realized that there were all kinds of foods I liked that I had never let myself eat before.  Stuff like mayonnaise, peanut butter and beer.  Those foods + A decade of anxiety eating = My thighs.

During this period, I’ve lost and gained the same weight over and over.  Every spring, some comes off and every fall more comes back.

Not this year.  It’s not budging.

I started bootcamp at the end of January and have lost a whopping two pounds.  Though, admittedly, I haven’t stopped that beer thing.  However, if my jeans would fit based on increased flexibility and range of motion I would look fantastic.  Why doesn’t the scale notice that?  Huh?

I think part of it is because some of my meds have changed, but more of it is because I’m turning 40 in June.  My body is saying it has had enough of this torture.  I deserve every bit of pain the instructor is inflicting on me as punishment for treating my body like a trash can.  George Costanza’s trash can.

So I will continue to plug along, squeezing in three, one-hour workouts per week in the grand hopes that someday I will no longer have to squeeze into my pants.

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Invisible

posted by Momo Fali on February 14, 2011

Since my son was born in 2002, I have had a lot of bad days.  Watching him get taken to surgery nine times, seeing catheters shoved into places that boys shouldn’t have catheters shoved, watching him get stuck for IV’s so many times that I’ve lost track and seeing him almost die twice will tend to make every day feel like a Monday.

There have been so many struggles that parents of a typical child can’t even imagine.  And before someone comes along and tells me how fortunate I am that my son can walk and talk, I will say that I know we are lucky.  I have spent enough time around children in the hospital to know that things could be horrifically worse.

But, there have been struggles.  It took 13 months before tube-feeding wasn’t an ever-looming threat and it was 18 months before he took his first step.  That was after weekly physical and occupational therapy appointments and more genetics tests than even the geneticists knew existed.

He is almost nine and he vomited while eating just yesterday.  He can’t button his own pants.  We found out last week that he needs hearing aides.

As a parent, you fight through these situations.  You modify his surroundings, you buy him velcro shoes, you cut his bites into little pieces.  You, quite simply, adapt.

But, there are certain challenges where there is no fix.

My son is not only medically different from his peers, but also physically, emotionally, behaviorally and socially.  He is tiny, quirky and the most unique individual I have ever known.  Most adults “get him”.  Most kids, don’t.

For the past six weeks, my son has been enrolled in a basketball clinic at his school.  This was more of a social exercise than an athletic one, as my almost nine year old weighs only 43 pounds.

Over the last month, my boy learned to dribble and bounce-pass and he learned to play one heck of a man-to-man defense.  He had fun. He tried his best.

He has no idea that I sat in the stands and cried this afternoon, because I watched every kid on the court look right through him when it came time to pass a teammate the ball.  My husband knew I was crying, as he sat detaching himself from the situation, but I told him that it was making me sad to watch and he replied, “I know.  It’s awful.”

I can’t fault the boys.  They’re young and they wanted to win.  They were smart enough to know that my son couldn’t make a basket.  If he was on the other side of the ball as a typical child, then he would have probably done the same thing.

But, he wasn’t on the other side of the ball and he is not a typical child.  I watched him holding his hands in the air, waiting for a pass, for over an hour.  He got a chance to dribble twice, when one of the parent volunteers TOLD the boys to pass it to him.  He loved those few, fleeting seconds.  I could see the pride in his face.

As a parent, you want your child to shine, not be ignored.  You want the world to see what you see; that inside the quirky kid is a funny, smart, gentle soul.  Okay, he’s obstinate too, but everyone does see that.

It is so hard to have a child like mine, but it is also very special.  It is a joy to see him succeed and to go places I never thought possible.  To me, he is a gigantic force in the universe.

But, to the boys on the basketball court, he is but a speck.

In a Second

posted by Momo Fali on August 25, 2010

My daughter starts middle school today, which makes perfect sense because about eight seconds ago she was a 2 lb. 9 oz. preemie who fit in the palm of her father’s hand.

Two seconds after that she was wearing pigtails and skipping and making me recite “The Three Little Pigs” over and over. Then she started reciting “The Three Little Pigs” and, somehow, even though it was only about five seconds ago, I have a 30 minute long video of her telling that story.

Oh my goodness, did that girl like to talk! One day, my left ear fell onto the floor and she just kept going…like she was waiting for the right one to do the same thing. Okay, I’m exaggerating. Slightly.

She was so smart. She still is. But, smart when you’re a toddler is different than smart when you’re eleven. She sang God Bless America in front of huge groups…hundreds of people…when she had just turned three. So, yeah, that kind of smart. Now, she knows geometry, which makes her smarter than I have ever been.

She has always had a big heart and a sensitive soul, but about one second ago she got kind of hormonal. That means that she’s SUPER sensitive, but doesn’t always show a sensitive side. So, she has no problem being mean to her brother and making him cry, but when I tell her to stop it? Her tears could fill a bucket.

I used to think we were so much alike, and we are in a lot of ways, but more and more I see her becoming her own person. Which scares me a lot. I knew what to expect when she acted like me. I even knew what to expect when she acted like her father. *cough* button-pusher *cough*

These days, she does her own thing a lot. It’s her music, her posters on the wall, her choices, her decisions. I hope she makes the right ones. Just saying that makes me want to lock her in a room forever.

Don’t get me wrong, she’s only eleven. She doesn’t have a cell phone, she still goes to bed at a decent hour, she can’t see PG-13 movies…except for Transformers because, duh, it’s Transformers.

She still needs her mommy sometimes, but I’m 39 and I still need mine, so that doesn’t make me feel much better. And, when I think about how dumb I acted when I started driving and then when I went to college…well, she’s just never driving or enrolling in higher education. That’s all there is to it.

Of course, that’s not true. She will grow up, despite my best efforts to keep her a child.

All I know, is that in a few more seconds my baby girl will still be my girl, but she won’t be my baby anymore. As much as I love seeing her grow, I really wish I could stop this clock.

What I Want

posted by Momo Fali on July 6, 2010

On July 4th, 1998, I found out I was pregnant. My period was a couple of days late and there was a huge jug of vodka and cranberry waiting at a party with my name on it. Late periods and vodka don’t mix, so I took a test. Don’t worry, friends don’t let friends’ liquor go to waste.

My husband and I had closed on, and began to renovate, our first house in February, 1998. We got a puppy in May and the pregnancy news came just before our first anniversary that August.

At the time, we both had great jobs. We both worked together for a successful local business. It was a mom and pop corporation…big responsibilities with a family atmosphere. It was intense work, but I enjoyed it.

Just before Christmas that year, my pregnant self said goodbye to my co-workers for an extended holiday vacation. I never came back to work. Our daughter was born 10 weeks early on December 29th.

One preemie led to two and that second one? Well, he came complete with problems galore. I stopped working in the corporate world and, instead, became a nurse, physical therapist, occupational therapist and occasional Heimlich provider. I walked around with a phone attached to my ear listening to a permanent loop of health insurance voice systems.

Two years ago, when my son was in Kindergarten, I was offered a unique opportunity to work at the school as a teacher’s aide during the hours he attended. It worked out great. And last year, when he was at school all day and eating in the cafeteria for the first time, I became a lunch lady. That Heimlich thing? Well, it doesn’t always work if you’re not there to do it.

But, now my son is going into the second grade. He has made advances we never thought possible, one of which is clearing food from his mouth before he chokes on it. My daughter will be in middle school and my mom recently moved back to our neighborhood after many years away. Clearly, I’m running out of reasons to hang out with my children all day.

As much as I would love to be a housewife, take care of my home and laundry, plan meals and otherwise be organized instead of chaotic all the time, those things don’t pay the bills.

We have been struggling for a long time. My car is 13 years old and sometimes the doors don’t open and the horn doesn’t work, which totally gets in the way of me telling people what bad drivers they are.

Our washer and dryer are not long for this world, our computers are starting to implode and the stove is like a hormonal woman and only cooks when it wants to.

I have committed to the school until 2011. Basically, I have a year. I have a year to decide what I want to be when I grow up. I am almost 40 and though I’m not afraid to go back to school, I just don’t know what I want to do when I get there.

I want to write, I want to design, I want to be creative. I want to be passionate about something in the way I have been passionate about my children. I want to be fulfilled.

I also want to pay the bills and I just don’t know if the two go hand in hand.