Getting nothing done?

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.

I have a list. I work from my list. I check things off my list. I even have a master list and a daily list. And an online list.

I'll take Blessed, with a side of MPS

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 wouldn't wish that on anyone.

But when balanced against the blessings and miracles and wonderful people that MPS brings, then again, maybe I would.

If I could reorder our world, would I create it any differently?

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.