On the 7 year anniversary of Cal's diagnosis

August 2, 2019

 

 

Seven years ago, the doctor came into our hospital room at the Children's Hospital of Philadelphia and pulled up a chair and told me :"We think your daughter has a disease called metachromatic leukodystrophy or MLD." D-day comes around my birthday and so this period from June 26th to the 5th of July, when David Wenger would confirm the MLD diagnosis, is challenging to say the least. 

 

But each year, as I meet newly diagnosed families, I get to tell them how Cal was not supposed to be here now, that no one could have been more terrified and overwhelmed than I was, and yet, here we are somehow doing things and living a life that seemed impossible seven years ago. 

 

Hearing your child has a life-limiting illness will be a metamorphosis, and you will feel as if you are dying. And, in a sense, you are. 

 

You see, the person you once were will cease to exist. 

 

And as you come to understand what this disease means, you will need to change on a cellular level as you go through each thing your child will never do: how she will never walk, or say "I love you" or play soccer or go to attend college or live on her own. And you must mourn these things.

You must cry for the parents of healthy children who seem blissfully unaware of their good fortune.

 

You will be so filled with rage and grief about how easy your life used to be, and how hard it has become. You might wonder if it would be better to die with your child. You will lose friends and family who don't know what to say or how to help. This nervous breakdown might last months or even years. You might lose 20 lbs, or, gain 40 (and in my case, I managed to do both). 

 

Then, one day, after months or even years of pain and anguish, you wake up and realize you have this choice to make, to be overwhelmed by this disease or find a way to make beauty and joy and happiness in what is possible. This is not easy. And the secret to getting through this for many people, myself included, was the epiphany that the only way to save myself was to help other people. So here we are.

 

Pat told Cal today how she had proven all the doctors and experts wrong, she had defied the odds and done things no one could have guessed or can even explain. And here we are, seven years later, transformed, but not hopeless. 

The rage has been replaced with gratitude and we are in awe of the way Cal has inspired so many people to be more loving and gracious and wise than we could have imagined. 

 

These days, a good number of my best friends are the parents of terminally -ill children. My best friends face realities on a daily basis that the parents of healthy children would see as their nightmare if they walked in our steps for just an hour. My friends are fearless, not because they are never afraid, it is just that they understand courage is nothing more than getting up each and every day and getting through breakfast and then lunch and then dinner and doing it all over again: fear only has power over us when we succumb to it. 

And yet, these people who have faced the fact that their children will not grow up are the most remarkable people because they have proven to me that your life goes on even after the worst thing happens. Indeed, there are triumphs and hope and miracles waiting for all of us....even after the doctor comes into the room and tells us what we don't believe we will have the strength to endure.

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