Posts Filed Under Prematurity

Day 12 – Special Needs Sibling Saturday

posted by Momo Fali on November 12, 2011

Today I have a guest post up at Squashed Bologna.

Varda, aka Squashed Mom, hosts a wonderful series called Special Needs Sibling Saturdays where she gives kids, like my daughter, a place to be heard; a place where being the sibling of a special needs child isn’t different, it’s typical.

Come see me over there!

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Day 5 – Toothless

posted by Momo Fali on November 5, 2011

My son does everything slowly. Crawling, walking, talking, eating; it doesn’t matter what the milestone is, he hits it late.

He will be ten in May and just started wearing size six clothing and, up until tonight, he hadn’t lost either of his two, front teeth. Ironically, I suffered through watching Tooth Fairy with him just this afternoon. Dwayne “Rock” Johnson in a tutu. I won’t lie, it was painful.

As for my son, he’s pretty excited to know the tooth fairy is coming tonight. Also, shopping won’t be quite as tough this holiday season. I think I know what he wants for Christmas.

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.

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.