Thursday, December 30, 2010


I watch the ripples change their size
But never leave the stream
Of warm impermanence and
So the days float through my eyes
But still the days seem the same
And these children that you spit on
As they try to change their worlds
Are immune to your consultations
They're quite aware of what they're going through

Turn and face the strain
Don't tell them to grow up and out of it
Turn and face the strain
Where's your shame
You've left us up to our necks in it
Time may change me
But you can't trace time

My Dad had a way of saying a lot with just a few words. When I would complain about the smallest change he would tell me, "It builds character." Once I became a teenager and figured it all out, my standard response became, "I think I have enough." Thankfully he repeated himself year after year. When I did not get accepted to my college of choice, the response was, "It builds character." When Donna and I were married and discovered that making almost no money meant we had to live in a crummy apartment, he repeated, "It builds character." When I struggled with my career, expecting the moon and the stars on day one, he told me, "It builds character." Over time, the saying became lodged into my brain to a point where I would tell myself, "my Dad always used to say..."

As I look back I have to laugh at some of the changes I used to be concerned with and those I celebrated. Sure, they may have been important at the time, but in the grand scheme of things they were insignificant. It wasn't until our first meeting with the CHOP team that I realized what the impact of change could really be. For the first time, I walked into a hospital as a parent and heard things parents never want to hear and saw things parents never want to see. Maddie's simple hair loss became Inclusion Body Myopathy leading to progressive muscle weakness and potentially life in a wheel chair. From that vantage point, changes took on a new meaning and even the smallest improvement was reason for celebration.

On December 10th, Donna and I joined the girls for their six month checkups at CHOP. During the four hour appointment the doctor, physical therapist, dietician, genetic counselor, occupational therapist, a few interns, and a representative from the MDA popped in and out to get updates on the girls. As usual, the girls were asked to perform a series of tests designed to measure changes. For example, our muscular neurologist tested their strength, completed muscle ultrasounds, and timed them as they ran sprints through the halls. The occupational therapist tested their fine motor skills, focusing on their daily tasks at school such as writing and typing; at home such as opening jars; and for Emma on the road as she is a few short weeks away from getting her driver's permit. I believe Emma had input on their report as the therapist explained how important it was that she receive an iPhone for Christmas. Hmmm. Finally, the physical therapist completed detailed strength tests focusing on a number of points including neck flexors, elbow flexors and hip flexors to compare the results vs. previous visits and standards for girls their age. Overall, the results showed improvement or stabilization depending on the test and their improvements from last summer.

Following our appointment, I had the good fortune to spend a few minutes with a friend sharing the events of our day. As I explained the appointment, he asked questions about the results, what they mean, and how they will impact their lives. For example, will their physical improvements now allow them to do gymnastics or become a starter on the softball team? As I started to explain I realized that people’s reference point is their own children and what they can do today (if they are still young) or once did (if they are now adults). Our reference point has shifted from what we once expected the girls to do physically (keep pace with Dad on a three mile run) to what we do today (run down a short hallway at CHOP for the doctor). We still have high expectations for the girls, but these have shifted from large physical changes to smaller ones.

During the conversation I also realized that while we share a lot on this blog, we have not focused much on the small changes we see and how important they are for the girls’ physical and mental health. Here are a few which I believe have built a little character.

- Emma and the milk carton: Before treatment, Emma could not carry the one gallon milk carton from the refrigerator to the kitchen island without using two hands. During the appointment she proudly informed the doctor that she can now do it with one hand. Sure this is only three feet, but it is her daily reminder that she has improved. This builds confidence day after day.

- Maddie and her neck: A year ago I helped Maddie stretch her muscles by pulling her across a six inch high foam roller while she lay on her back. As the roller past her neck, the back of her head hit the floor. I thought she was goofing around and asked her to pick it up. She said, "Daddy I can't." I then stabilized my daughter’s neck as she completed her stretch and felt a pain in my stomach. Is this what’s ahead for us? During our December appointment Maddie showed she cannot only lift her head, she can hold it up without support for 10 seconds.

- Maddie and the sit-ups: Before treatment, Maddie could not do one sit up. Doing sit ups may not be important as we get older, but for a little girl who sees others knock them out, the inability can be isolating. During her review with the doctor, Maddie proclaimed, “I can do three sit ups!”  Off she went to the floor, one, two, three, followed by cheers from the medical team.

2010 is coming to a close and will soon be in the rear mirror. As I look back over the year, I think about what we have overcome and what the year has brought for others. Some people saw great things such as new friends, new jobs, and new grandbabies. Others saw unemployment, loss of parents, and the deep pain that comes when you are told your child is seriously ill. My Dad faced more than a few changes in his time from new grandchildren, to children being seriously ill, and finally to succumbing from something none of us would have expected.  However, he remained positive.

While he is not physically here with us anymore, I know he is present each time the girls receive Lumizyme, each time they lift that milk carton, each time they hold up their necks, do sit-ups, and each time his son puts pen to paper to tell their story. If he was here, he would remind us that the good changes in 2010 can be seen in the girls’ faces as their smiles have returned, in their posture as they stand tall and strong, and in their souls as the character they have built through struggle has allowed them to believe in a brighter future. I guess he was right all along. While changes big or small can be tough to accept some times, in the end "It builds character."

Time may change me
But I can't trace time
I said that time may change me
But I can't trace time

All the best in 2011,

Credit: David Bowie, “Changes”