We had the privilege of spending last week in upstate New York at the Krabbe Family Symposium sponsored by the Hunter’s Hope Foundation.  It is quite a blessing to be able to share life for several days with people who have walked a similar journey, people who know the searing pain of watching their son or daughter suffer, and many who have endured the loss of their beloved child.

We are moms and dads from all walks of life, with diverse backgrounds, who see the world from many different perspectives, but there is one beautiful thought that was so undeniably evident in the heart of each parent—that despite the intense heartache connected to loving a child with Krabbe disease, these children are the most amazing gift!

Each of these kids gives us a poignant, exquisite picture into the beauty of life and the gift of breath…

They stretch and grow the depths of our love.  They remind us what is truly important.  They feed our passions.  They reveal a grace that can only be found in weakness.  They render us powerless in a manner that builds our strength.  The souls of these children reach deep into the core of who we are and transform us.

In a world that might look into the face of one of these children with pity, we know without a doubt they are to be admired above all others.  Their frailty and brokenness, in fact, deems them worthy of greater honor, an honor that penetrates eternity wherein the blessedness of their souls will ultimately be revealed through the light of God’s Kingdom.

Tears flowed down my cheeks this week as I held the fragile frame of Trevor Aldrian, stroking his hair, brushing my hand against his soft skin, gazing into his penetrating eyes, and listening to his deep sighs.  It is as though the veil between heaven and earth was paper thin with each kiss of his forehead; I was holding an angel again—not a celestial being—but a special messenger of God.

What a gift we leukodystrophy parents have been given.  What an amazing gift!