I first met Whalen, Blake’s dad, just after Blake was diagnosed. It was summer, just before our Annual Connect Conference scheduled in Pittsburgh, PA. Whalen rode his bike from Florida to Pittsburgh. Red-faced, he arrived- tired, hot, and smiling. From that day on, Whalen and Allison were committed to help Blake and every other boy. We met often – conference, marathons, and in Washington.
We lost Blake last week. While showering he fell, fractured his femur and died. We are all asking questions – why are we losing boys so young? what is happening, what is the sequence of events – is the heart giving out, did the fracture initiate a cascade of events? what do we need to learn about these young hearts? what should we do, what could we learn, how could we be more proactive and would that help? How would we know?
When we learn that we lost one of our own and so young, there are no words. It hits in a place some of us never realized existed. Our hearts are broken, we are outraged, but more than that, we want answers. And the truth of the matter is that we actually do not know the sequence of events, nor do we have any answers.
There are many reasons that could cause our sons to die early. They range includes infections, pulmonary events (choking, embolism, respiratory arrest), cardiac events (arrhythmia, infarction)...and the only way we could ever learn about exactly what happened is by autopsy. And that word is so difficult, much too big to fit into our heart and mind.
And when our sons “look so good,” it is impossible to know. And because they are living with Duchenne, they may not know what our definition of ‘feel good’ means. How many times have people said this about your son. And how many times have you choked up, knowing Duchenne hearts are not so strong, Duchenne bones are not so strong, Duchenne muscles are not strong. Our sons faces are photographed on the cameras of our soul; those beautiful faces and eyes that radiate a wisdom many adults would be unable to comprehend and along with that external beauty, we see a fragility, unseen by most, but visible to those that love them.
In fact, the ‘he looks good’ should remind us that external beauty does not provide a full picture. It is the inside that counts, that makes the differences, sometimes between life and death. And we have a lot to learn about heart, about bone, about muscle… and we will.
I have a dear friend who always responds to the ‘how are you’ question in this way…I’m fine and thankful, because in the next 5 minutes everything could change. Life is not a dress rehearsal, appreciate the time you have and use every moment.
God Bless Blake and every other young man that has touched our lives for only a short time. Our fallen heroes. God Bless all of us who will miss them every day of our lives.
(Click here to read Blake's obituary