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:

My (un)Planned Son - Part 2

When we brought Case home, we were incredibly thankful that he seemed healthy and completely recovered from the breathing problem he had at birth. Of course, I consistently asked his pediatrician and other doctors later whether PPHN would cause any lasting complications or whether he was expected to be healthy. All healthy, they assured me. No lasting problems.

But there were always these little things.

Pardon the Interruption....

So I have to step outside of telling the story for a minute and jump into real time. Real life. As some of you know, yesterday I was enjoying the day, celebrating my brother’s birthday with him in Miami Beach. I had come to Florida to speak at an internal conference of Shire HGT, the pharmaceutical company that makes Case’s Elaprase drug, as well as the intrathecal idursulfase that he is receiving in the clinical trial. After the conference, I met up with my brother to walk around Miami Beach, talk, and just enjoy the weather and the scenery.

Chris (my husband) called at one point and started the conversation with the words, “I have bad news.”