Tag Archives: guest post

Praying for more tomorrows {a guest post}

Hello, lovely readers! I asked my sweet friend Brook to share a little about her son with you today. And here’s what she had to say —

I can hardly describe Gabriel to you. He’s too close to me: My very heart.

I can tell you that close friends say he’s a spitfire and too smart for my good. I can also say he’s persistent, perceptive, funny and full of energy. He has his mama’s eyes and his papa’s smile.

He also has Cystic Fibrosis — a genetic, life-shortening, chronic illness.

We put a lot of work into keeping Gabe as healthy as possible. He eats six high-fat, high-calorie meals a day accompanied by pancreatic enzyme replacements because his body doesn’t absorb fats and other nutrients properly. He does chest clearance twice a day to keep the mucous in his lungs from settling in and creating inflammation and scar tissue. He uses a nebulizer and inhaler to thin that mucous and dilate his airways. And when he gets a cough, we ramp into overdrive to keep everything moving.

So far, so good. He’s almost exactly two-and-a-half years old.

I know that over time the symptoms will take a toll. It’s pretty likely he’ll develop CF-related diabetes. He’ll always have to focus to keep his weight up. Eventually, his lungs will have borne the burden of too many coughs, too much inflammation, too much scar tissue, and they won’t be able to support him. Whether this happens when he’s 20 or 50 is anyone’s guess. The median life expectancy for someone with Cystic Fibrosis right now is in the late-30s.

Which is amazing, really. Thirty years ago, CF kids didn’t make it through elementary school. Newborn screening leads to early diagnosis and early intervention. Modern therapies have made it possible to keep patients healthier longer. And there is amazing research being done right now to treat the disease at a cellular level, helping the CFTR protein function as it should, which keeps that mucous from getting all sticky and problematic in the first place. I’m hopeful.

And I worry. He’s my baby; how could I not? I pray (and pray) for more tomorrows. But I know he’s not mine to hold onto, not really. So in the between-times, I cherish him. He really is amazing.

The Cystic Fibrosis Foundation uses donations effectively and efficiently to support promising research on a number of fronts. Please consider donating. Please consider Gabriel.

May is Cystic Fibrosis Awareness month, and Brook would like to see at least 30 people to donate to the Cystic Fibrosis Foundation in honor of Gabe. This family is so dear to my heart. I wish you could all meet them; I know you’d love them, too. If you have a few (or several) dollars to spare this month, I hope you’ll send it to CFF.

– Nichole

The summer I learned my mom was unique

Our very first Summertime Rewind guest writer is Rockford’s cousin McW. She is more fun than a hole full of hornets, she has more adventures than anyone else I know, and she and I shouldn’t be allowed on the streets without a navigator.

Like, a real-person navigator. Not a machine.

She’s getting married this Fall, and I can’t wait to go to the wedding.

Philippa Willitts photoWhen I was asked to write a guest blog post, I made a list of my favorite childhood memories. Then I laughed. These are not your typical shiny happy memories. Apparently, my favorite memories are those moments when you went “WHOA.” and saw the world a bit differently.

Like when I realized I had purchase power! Adults will take my money even if my mom isn’t around! What did I do with this power? I bought mice from the pet shop down the street till my mom had to go tell them to stop selling me anything alive.

But the request was a summer story, and here is the first one that came to mind:

I was around 7 years old the summer I became aware of the concept of diversity. Now, I am not talking about racial diversity. I had already moved a few times across the country and have always had friends of color. My first boyfriend — in kindergarten — was an exceptionally charming black boy who gave me a vending machine ring to cement our bond … until he asked for it back 2 days later. But that is neither here nor there. The diversity I saw for the first time that summer was of a type where they APPEARED the same, but had HIDDEN differences.

McW at Busch Gardens, 1986.

I’m talking about mom diversity.

Until that 1985 summer, I had no idea that every mom wasn’t really the exact same. I assumed that ALL moms shoved silly putty into their kids-with-tubes ears and tugged on dry swimming caps over dry heads. I thought all moms had Chinese paddles (which were really sorority paddles with Greek letters) that hung on the wall as perpetual reminder of the consequences of being bad. I thought all moms handmade their daughters pretty matching dresses for both the daughter AND her doll. And so on.

Nope. Not even close.

And what was the vehicle for this awareness, you ask? Hornets.

To be more specific, a hornet’s nest explosion onto a pack of neighborhood kids adventuring thru the woods behind our suburban Virginia development. In the moments leading up to our transformation into a pack of insane screaming panicked children, we were pioneers. Ranging in age from 1st to 5th grade, we were “headed west” in single file. Then, one after another, despite the painful screaming reactions of our predecessors, we EACH stepped onto the same hornets’ nest. Eleven of us. One kid steps on it, goes berserk and runs off … we all look around and, not seeing any threat, move one step forward in line. Rinse and Repeat. Eleven of us.

The screaming children poured out of the woods and onto the street as we sprinted for our homes, terrifying our moms with our murderous screaming. We reemerged onto the cul-de-sac a couple of hours later as battle-worn soldiers; each kid covered in the evidence of our moms’ diverse remedies for bee stings.

It was amazingly enlightening.

There were kids with giant lumps of baking soda paste on each welt. Kids who smelled like the vinegar they were forced to marinate in for an hour. Kids dipped in 137 bottles of chamomile lotion. Kids covered in Band-Aids for “scratch prevention.” kids with Vaseline globs. It was a cornucopia of pastes, globs, smells and miserable-looking kids. I remember looking around and having that “whoa” moment where my mom became a distinct and individual mom who clearly knew what she was doing (and was forever loved for her aversion to glob-related remedies) and other moms became suspect. All of the other homes became curiosities; who KNOWS what other differences go on in there!

Even though I may have looked at the world a little differently from that point, my family would attest that I also learned NOTHING about preventing “hornets’ nest” situations in my life. Anyone wanna head west? Single file of course.

Note: I would like to point out that as injured kids; we did not evaluate the effectiveness of the pain relief. Only the smelly, gross or embarrassment factor. My brother and I won on the grounds of being the LEAST smelly, gross, or embarrassing — although who knows if we were in less pain or not!

P.S. For anyone who came here looking for how to treat a hornet sting, the Mayo Clinic suggests ice, pain relievers and a topical antihistamine for mild reactions. If you’re having a strong reaction, you probably shouldn’t have read this far. Get out of here and call 911 if you’re having a hard time breathing.