My dear friends,

Your beautiful child left this earth only a few days ago. Or maybe for you, it was a few years, but it feels like it could have been yesterday.

No words

There are truly no words worthy of this letter. Nothing today or next week or five years from now that can soothe what I can only imagine is a broken spirit.

[This is part of my 52 Letters in 52 Weeks series (read all of the previous letters).]

It is no wonder we are asked to view things through the eyes of a child. Eyes as wide and beautiful as theirs no doubt saw the love and possibility in the world, while our jaded parent eyes see the danger and brokenness.

We see it because we are blessed with a perfect child, only to be told that they are broken and endangered.

You met that danger with a passion and a love that is borne from the fire – from fighting every step of the way, from loving every hour of every day.

We are not meant to lose our children

No doubt you have repeated this phrase over and over to yourself. It upsets the natural order of things for children to die before their parents. That’s why, in addition to the grief, there is an unshakable feeling that it’s just wrong. That’s because it is.

A bouncy baby boy should grow into a precocious toddler who should grow into a curious boy who should grow into a mischievous teenager who should grow into a responsible adult who should tell stories to his aging parents about love, and life, and the bouncy baby boy that he has then fathered.

It is that weighty anticipation that paralyzed me seven years ago, when Case was diagnosed with MPS II / Hunter Syndrome. Soon after, I began meeting child after child affected by MPS. Some were young, but many were older, already severely impacted by the disease.

I watched them struggle to focus on my new face. Their soft hands, often curled into stiff positions, wrapped around my fingers. Unlike Case, who at two years old was still bouncing off the walls, these children sat still, gazing at me, the wall, their mom, and then often drifted off to sleep.

“These too. These are my children.”

God’s love for these children, for my Case, for your child, seemed to grow that day and each day after. It grew in the hearts of people who loved them and selflessly cared for them. It grew in the many lives that were changed because of them.

It grew in our willingness to sit and love and grieve together.

No, we aren’t supposed to lose our children. But in the daily and painful act of losing, we gain a love that will never slip away.

A love as calm and fierce and steady as the fiery sun rising each morning.

They had little to give, if gifts are only tangible and physical. They had little to say, if words are only spoken aloud.

But they gave so much. They spoke words imprinted forever on many hearts. And they loved. Oh, how they loved.

And it is those gifts, those words, and that love that remains with us.

But your love and therefore, your grief, is as unique as your child’s face and personality, his or her fingerprint that still remains on the world, or possibly their messy handprints on the wall that makes you pause each day. A wall that may never be cleaned.

Your child will be remembered

I replay my moments with your children. Sweeping them in my arms. Their laughter. And then, when their laughter faded away and my reward was a light in the eyes, a sloppy kiss, or even just a light touch of their hand.

Their bond with you was so distinct. So noticeable. And you loved them with a raw and fierce love.

I can replay the days we filmed Project Alive over and over, watching children run and laugh. Our efforts to get our children to hold a sign that now, might seem empty to many of you.

But while we’re trying to save them, maybe, just maybe, these children are saving us.

Alive

Yes, that’s what you wanted. That’s what we all want for our children. We want to hug them and hold them and give them a life that is stolen day by day until that theft is complete.

And even when it is, it will try to keep stealing your joy, your memories, your moments, because death is a fierce and bitter opponent.

My prayer

I’ve reached a point again where my words are insufficient to convey my sorrow. But my prayer for you is that you will have no regrets. My prayer is that you will bask in the love from a little soul who was pure in spirit and complete in purpose. My prayer is that your family will grow both in strength and tenderness. My prayer is that your hearts remain broken open rather than broken apart.

That you will continue to feel the love and support from a community that you will never leave and that will never leave you.

Maybe the children are saving us,

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Last modified: April 12, 2017

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