Posts Filed Under Special Needs

Child Whispering

posted by Momo Fali on October 6, 2011

When my son was little, he was sick a lot. He used to get bacterial infections as often as I buy purses; which is to say, all the time.

Before he was a week old, he got a UTI, then there was pneumonia, strep, antibiotic-resistant strep-pneumo, mastoid infections (betcha never heard of that one, have you?), eye infections and two ear infections for good measure. I hate to leave out meningitis, but I will, because it was viral.

He’s had eye surgeries, two different sets of ear tubes and removal of his tonsils and adenoids…all in an effort to curb the infections…and more than anything, to stop them from traveling to his little, malformed heart. He has spent, roughly, two out of his nine years on antibiotics.

As he’s gotten older, and with each successive surgery, things have gotten better. But, that doesn’t mean that I ever let my guard down.

Just last week, my friend Bean was talking about how amazing a mother’s intuition can be. She trusted her instincts and got her son help when he needed it, because she just KNEW something wasn’t right. And, as far as I’m concerned, intuition saved my daughter’s life.

On Monday of this week, my kids didn’t have school. They were playing a game in the living room, while I was in the kitchen, when I heard my son cough. It wasn’t a fit, he didn’t throw up from it like he used to…it was just one, single, solitary cough. Cough.

But, I knew it wasn’t right; my gut told me so. Because of his history and because of his heart disease, I had set out to call the pediatrician’s office first thing Tuesday morning. My husband thought I was crazy. He said, “What are you going to tell them? That there’s nothing wrong with him?” because, really, there wasn’t.

Then I came to find out that five kids in his class had pneumonia.

I got him in and his doctor prescribed an antibiotic, but it hadn’t kicked in before last night when his cough and fever worsened. He was curled up in my bed, kind of weepy, when my husband walked in and knelt beside him. He rubbed our son’s head and said to him, “I sure am glad you’re on that medicine. You’ll feel better soon.”

To which I snarkily replied, “Wait…what? I thought there was nothing wrong with him.”

My husband shot back the snark and said, “Yeah, yeah. You’re the child-whisperer.”

Then my son, who obviously understands motherly intuition wearily lifted his head and said, “No she’s not! She’s my mom!”

Exactly, buddy. Exactly.

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For Bean

posted by Momo Fali on September 18, 2011

Roughly 11 years ago, my friend Bean and I found each other. The details of our early friendship are long and sordid and involve way more than anyone, other than the two of us, would find amusing. Just know that we had known each other for years, yet barely acknowledged one another, then one night, in the light of a full moon, we bonded over a single Zeppelin tune.

Okay, I don’t know if that moon thing is true, but the way we connected…my mind sees it that way And, the Zeppelin thing? Totally happened.

I was at a point in my life, with a young daughter, where I was looking for friends whom I truly respected and I felt like that about her. So, a few months later, I sat down to discuss being friends with her. I ASKED her to be my best friend like it was a business transaction. Weird, right? Only, it wasn’t. Nothing has ever been weird with us.

We used to talk. A lot. Every day, actually. We were pregnant for our sons at the same time…due just three weeks apart. And, when mine was born seven weeks early, she listened as I cried over what was happening to him. She heard me as I wept over not knowing what the future would bring. She comforted me, and when she couldn’t comfort me, she would just quietly BE THERE.

Her son was born nine weeks later with two collapsed lungs. Was I there for her? Not like she was for me. I had a nine week old, very sick baby. Did she understand? Of course she did. She has always understood.

She is always there for me. I love her a lot. Through every bit of the ups and downs of having a special-needs, medically-fragile child, she has been a rock.

Almost three weeks ago, her son came down with…something. Fever, vomiting, cramps and other symptoms that made it seem, at first, to be a run-of-the-mill virus. But, it didn’t go away. He kept getting worse.

A few nights ago, he was admitted to the hospital and we have come to find out that it’s not just a virus. This boy who was a typical, active, healthy nine year old just a few weeks ago, is now fighting a battle that no one saw coming. Just like that, my best friend has joined me in the ranks of being the parent of a child with medical problems.

And, now it’s my turn to be what she has always been. It’s my turn to hold her hand, and listen, and comfort her and quietly BE THERE.

I kind of hate her for giving me such big shoes to fill.

Sweet Dreams

posted by Momo Fali on August 21, 2011

When my husband and I got married, we were just starting out career-wise. It had only been two years since he graduated from college (and three years since I dropped out).

We needed…everything. Within one year of our wedding, we bought a washer, dryer, car, dog…oh, and a house that needed to be completely renovated and furnished. And, just shy of our one year anniversary, I got pregnant. Hindsight, people. At the very least, get a home that’s move-in ready.

When I say that our house needed to be renovated, I’m not exaggerating when I say we had to gut it. With the exception of the some wood floors and some of the walls, everything has been replaced. Wiring, plumbing, windows and the roof (twice), just to name a few things. The fence, patio, new kitchen and three new bathrooms seem so minor.

To say the least, we didn’t plan well. Life went and threw a wrench into things when our daughter was born more than 10 weeks early. I quit my well-paying job and became the mom and caregiver of a fragile, 2 lb. 9 oz. baby on a heart monitor. But, hey! At least my cabinets were pretty!

Guess what? Preemie stuff is expensive, yo’. And, three years later, we had another one! With congenital heart disease! For roughly 13 years, I have been able to open my wallet and see dust settling where the dollar bills should be.

This means that nothing gets replaced. Ever. This means that I have been driving the same car for 14 years and sleeping on the same mattress that my sister used when she had my first nephew. He is getting ready to turn 26. I know, gross, right? What’s a girl to do?

Well, a girl can have really awesome friends, that’s what.

See, my friend Casey found out that I have been taking an Ambien and putting myself to bed on our couch for quite some time now. Thirty year old beds don’t have a lot of support and, apparently, my back wants that. My back is so needy.

When Casey heard about my predicament, she sent me a message and said, “I am going to make it my mission to get you a bed.”

Then she did.

She entered a photo contest and won me a new, Serta bed. I love her.

Not just any bed, either. It’s beautiful, and soft, and supportive and it has an adjustable base so that I can sleep sitting up and my husband can lie down, because that’s what old people do! As soon as it gets here, you will all have to suffer through pictures of me showing you this. I apologize in advance.

Recently, we had to break down and get a new washer. My children are also needy. They’re always wanting clean underwear, and stuff.

My husband and a friend lugged the old machine to the curb and within minutes a man had pulled up in a truck and asked for help loading it. Minutes! I had no time to prepare. I had to watch as my washer bounced down the street in the back of a pick-up as I thought of all of the poop, pee, vomit, Thanksgiving turkey drippings, baby food and every other thing that machine had helped me clean.

I have to admit, I shed a tear.

But, when the mattress goes away for good. I’m totally going to throw a slumber party.

Keep Your Pants On

posted by Momo Fali on February 28, 2011

Despite the uncertainty that comes with having a child with medical problems, there is always one thing that is constant with my eight year old son.  We never know what he’s going to say or do.

Most recently, this has come in the form of him telling his sister, “I love you!  Sometimes.”  And, let me just tell you how much a 12 year old likes hearing something negative from her brother.  Wait, scratch that.  Let me tell you how much a 12 year old likes hearing anything from her brother.  If I got paid for listening to squabbling, I’d be driving a Bentley.

On one hand, I feel like I always need to be on my toes, but on the other I find myself appreciating the boy’s honesty and lack of couth.  It has to be freeing.

The other night, we had two other couples and six kids at our house when my boy came in the living room to tell me that his leg hurt.  I pulled up his pant leg to his knee, but he complained that the pain was higher.  He didn’t appear to limping or bleeding, so I told him we would look at it when he went to bed.

But, he didn’t want to wait.

Before I knew it, he had turned to face all of our guests as he said, “Hey everybody, this is going to be funny.”  Which is when I saw him reach for his zipper.

One thing I didn’t think I would have to tell my second-grader is that it’s not okay to pull your pants down in public.