A Life, Distracted

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 weather. We clean (or not). We cook (maybe not well). And the cycle continues.

What is wrong with that picture? Aren't all those things necessary, or at least not terrible?

Is there a downside?

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 so little left of you to enjoy the child that is still with you.

I was reminded by wiser MPS mothers at the beginning of this journey that Case did not change. He was the same the day before he was diagnosed as he was the day after. His outlook, his love for his family, and funny antics did not disappear in one day. Wise, wise women.

But in some ways, MPS actually made him...

Praying for a ram

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 in the street, the grocery store, wherever, could see right through the walking facade and see my heart melting away. But still, God held me together. He held me together with assurance of His past faithfulness and His promises. I quickly felt the need to be physically surrounded by those words, those promises.

and the Birth of Another...

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.

Death of a Dream...

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 that I knew exactly what Case had. He had Hunter Syndrome. I was sure enough that that is what we told those around us. God had made it clear to us from the beginning what we were facing.

That is not to say that we took it calmly. That we reacted with extraordinary acceptance and peace.

From Birth to Diagnosis: Video

Last year I had made a video for the school and Case's website which explained the symptoms, tests, and procedures he'd had in his first several years of life. However, this time I wanted to chronicle my memories of Case's first two years as I was experiencing them at the time - joyous, fun, crazy, stressful, but full of life. Life without the weight that MPS eventually brought. Here is my effort with several caveats: