Omniscient grace

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 lets us hear the fights and the early morning wake-ups lest Case wander outside, opening the garage and front doors, as he's wont to do.

Who am I? I am...

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:

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.

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.”

My (un)Planned Son - Part 1

Now, this child was entirely unplanned, you see. This was a go-back-to-the-calendar, count-up-the-days, scratch-your-head, then sit-down-and-freak-out unplanned.

I’ve had to work to forgive myself for the next part.

My (under)Planned Son

So our second son was not really planned, or really, not expected to happen so soon in several ways. I mean, it takes 4 years for the first one and the second just decides that he’d really like to join the party as soon as possible. As many women know, it was quite difficult to chase after a crawling, then walking, then running child when you are sick, tired, then hugely pregnant.

My (over)Planned Son

After having four miscarriages, I relished being pregnant. God knew what He was doing much better than I did. Even the bad parts of pregnancy were like music to my ears. The sick and throwing up part – just a bonus. I understood that the sickness came from the pregnancy hormones that rage through a woman’s body. And to me, the more sick I was, the less likely I was to lose this baby as well.