Why? That is a word that is heard often in the world of rare disease. It’s a word that is often heard in life. Why did this happen to my child? Why him? Why our family? Why would a loving God allow something this terrible? God spoke to me through […]

Why? Why my child?

What item of yours would make you almost pass out of you lost it? Or what about if you left it in the waiting room of a hospital and went home? Or if you left it sitting on the floor of a building lobby, next to a display cabinet, and […]

Making it to the Lost & Found

I’ve never been a great writer, a creative writer at least. Oh, I liked legal writing. It was structured and formulaic. But the writing I’ve been doing this past year is anything but. It is raw. It is painful at times. When Case was diagnosed, and then when he was […]

I’ve never been a great writer

I was watching a TV show the other night where a mom had been kidnapped. The kidnappers wanted information from her and they were torturing her to get it. It struck in my mind the analogy to Christians who are tortured for their faith either in the past, like in […]

Raise your hand if you want to be an American ...

Sometimes it is difficult to know exactly what Case understands and what he doesn’t. But tonight, I wanted to catch his full eyes and see if he could really intake and comprehend that I love him and that God loves him. And then, I said “Case, who made you?” He […]

Who made you?

I had planned a thoughtful post, filled with the revelations I’ve been seeing lately, but to be honest, I am tired. I sit here after midnight, which is not unusual, looking at piles of paper for IEP meetings, taxes, e-mails and calls to be returned, paperwork for doctors to sign, […]

The blessings of late nights

I had decided that I had enough friends. We were preparing to move to a small town in Ohio, for only a year mind you, and I was content that I didn’t need to make any new friends. I had great friends from college and from growing up and I […]

The fabric of our lives … is not cotton

I don’t pretend to be a great writer. I write because it is my journal and my release, and I write publicly because I hope that somehow anything or something I say might resonate with even one single person. But sometimes I don’t really bare it all, those deepest feelings […]

Just another lullaby

Someone might see me at times and think, “Just who is that crazy lady?” It might be when I’m singing the Barney song and adding my own little dance or when I’m pulling the imaginary horn in a chair choo-choo on the hospital stage. I’m the crazy lady who’s learning […]

Who is that crazy lady?

Sometimes we learn amazing lessons about God from our children. Unconditional love. Instant forgiveness. Pure joy. But sometimes God uses our own words to our children to teach us. We have a baby monitor to hear our kids at night. All three of our boys share a room and it […]

Omniscient grace

Who am I? I’ve always had many answers for that question. At different points in my life and in different conversations, I would have said: I am … a perfectionist.I am … a lawyer.I am … an organized person.I am … a runner.I am … a cleaner.I am … an […]

Who am I? I am…

I often lie in bed at night and either think to myself or say aloud to my husband “I got absolutely nothing done today.” It is usually because something unexpected happened – a snow day, one of the kids is sick, several phone calls from case workers or insurance problems. […]

Getting nothing done?

I often say that I wouldn’t wish MPS on anyone else. The heartache, the initial despair, the sorrow that somehow something you did brought this horror on your family, the gut wrenching sobbing that makes you throw up before you ever get a normal breath back. No. Of course I […]

I’ll take Blessed, with a side of MPS

We grow up. We go to college (or not). We meet a wonderful person. We get married. We have children. We work. We play. We sleep (or not so much). We watch TV. We play video games. We Facebook and tweet. We talk incessantly about minutae, politics, the market, the […]

A Life, Distracted

Since Case was diagnosed, I felt compelled to find the bright side. That is not to say that I was happy and optimistic all the time – it is of course a process … to process. But, if you live in a cloud of “what ifs” and gloomy prognoses, there […]

Is there a downside?

On April 6, 2009, I realized Case almost surely had Hunter Syndrome. No doctor had confirmed it, but we knew. There is just so little that can hold you together at a time like that. Sometimes, I felt like I was falling apart. I felt like everyone who passed me […]

Praying for a ram

Sometimes it takes death to be reborn. Sadly, it took the death-expecting disease of Hunter Syndrome for my walk with Christ to be reborn. Let me back up. I became a Christian at a young age. Frankly, I don’t even remember all the details, but I’ve let go of the […]

and the Birth of Another…

When we first met with the geneticist at Vanderbilt, he did admit that he thought Case had a form of MPS, but he wasn’t sure what type. They had to get blood and urine samples to send off for genetic testing. Genetic testing that can take months. I assured him […]

Death of a Dream…