As we have enjoyed the past few days here in New York with our leukodystrophy family, what has struck me more than anything is the love that radiates from each and every person.
Each and every one of us are in similar situations: our children are dying or have passed from horrific diseases. We are broken people, often unsure of what even the next hour may bring.
Under these circumstances, you would expect to see constant tears, depression, sorrow, despondency.
However, what we have seen is the exact opposite.
These parents have chosen to make each day matter. They have chosen to make sure their child truly lives the fullest life possible. They choose joy.
I love watching the moms and dads with their children, showing such love, patience, devotion, and selflessness toward their precious gifts.
But what has impacted me even more has been watching these moms and dads with the other affected children – not their own – because it is evident that they love these children nearly as deeply as they love their own.
I have been trying to capture moments between parents and their babies or the babies of others specifically for this post, and here are a few that I managed to take:
I have loved observing all of this , but I have especially loved watching the fathers – both with their babies and the babies that belong to others. They love holding them, talking to them, getting pictures taken with them, and loving them. They are so gentle and tender, they are completely involved in their care, and the love that radiates from their faces is indescribable.
There is beauty in the broken if you choose to look for it.
No parent chooses to have a child with special needs, but that shouldn’t change how they love their child.
The parents we have been with this week make a daily choice to love their children selflessly, joyfully, and abundantly. They choose to give their child the best possible life they can have. And they are an example we all should follow.
Even So, Joy 
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