Medically Complex Marriage

"I don’t think it’s nice to talk badly about people behind their backs. Which is why I’ve asked my husband for his blessing to publish this article.  Here’s the thing, I’ve gotten so many comments and messages about how strong we are as a family, and I can only imagine it looks that way in the one or two pictures we have on social media together as a couple..."

Baby Number Two?

"...The questions I have to ask myself regarding having a second child are daunting. The questions I have to ask our doctors about our future in general are daunting. There are lots of worries, hopes, and concerns when raising children, but throw multiple chronic illnesses in the mix and the future looks a lot scarier..."

First Time Medical Mom

..."Terrified doesn’t even begin to describe what I was feeling. But here I was, a parent for a few short days in an exorbitant amount of pain and responsible for a baby I’d met for about 30 seconds. At this point, I had never held my son or heard him cry. I had no idea what he felt like, what he sounded like, or even what he looked like. Yet, I was supposed to give permission to a complete stranger to administer drugs that would put Oscar to sleep for surgery — this mystery Oscar who I yearned to see, to touch, to hold— this mystery Oscar with a mystery diagnosis, my son..."

I Can't Give You Everything

"...Soon after [his birth], I would be handing him off to surgeons, specialists, nurses, and therapists -- all who presented me with more information than I could have ever dreamed of in the realm of development. It became very clear early on, that I had no clue what I was doing. These people had multiple degrees, continuing education, and practical knowledge in how to raise children like my son, but I was a blank slate..."

Play Dates. It's Complicated.

..."This was the first time we were around a child who was developmentally appropriate for his age. I suddenly felt like a ton of bricks had been dropped on my head. This little boy wanted to play with my son, but all he could do was lay there. He wasn’t sitting yet, and he hated being on his belly. His delays were suddenly glaringly obvious — a new feeling for me. So this is where we are supposed to be? These seemingly simple milestones seemed so, so far..."

The Purge

"...I stared at my closet full of hangers and bins of my pre-baby clothes and accessories that I kept in the event that I would ever fit into them again. And while many clothes were quite close to zipping,  I found my inner Joan Rivers saying, "just because it zips doesn't mean it fits..."

Social Networking

"...I help my newfound friend take down her booth over discussions of therapies, independent mobility, frustrations, hopes, fears, birth stories, and hospital visits -- peppered with some dark humor, of course. What a delight! I can't tell you how good it felt to talk about these things as normally as most other people talk about topics like teething, or chasing after their crawling baby, or how their baby is starting to talk already..."

This is Thirty

"...I'm a spotted, dirty haired, half- of-my-legs shaved, tipsy mess, but I couldn't be happier. I'm surrounded by people I love, and indulging in some of life's greatest pleasures - cheese, wine, and cake. My home is filled with laughter, good music, and good people, and that's all I could ever ask for. If this is thirty, I'm quite alright with that..." 

Happy MothER's Day

"...

It's somewhere around 1:00am, and I'm a ball of confusion and sleep deprivation. I'm nervous thinking what the test results will be, meanwhile, I've apparently given consent for a test that's going to affect kidney function, and I feel like one big failure of a mother. After a long pause while our technician calls in for test results, we finally have an answer..."