Shared Sorrow

A week ago, we lost one of the children in our PIGN group. It's odd, in ways, to have such a visceral reaction to the death of someone you've never met. Yet I know the other PIGN families feel the same way. We love and care for each of the children in our community because we have a connection that spans language differences, countries and cultural differences. There are literally families around the world grieving and praying for this family.

Her death hit me especially hard because this little girl is right around Teddy's age. They had the same wonderful smile when we first met this family virtually. Yet she was far more severely affected, and the seizures caused such regression for her. Her family loved her fiercely, prayed for wisdom to make the best decisions for her and did all they could to ensure she had the best quality of life possible.

What amazed me, time and again, was this family chose to embrace this diagnosis. They adopted their sweet daughter, not knowing her diagnosis but knowing full well that her life would be like a rose ... beautiful yet painful. As much as I love Teddy, and I do, I can't imagine choosing the challenges that come with the blessings. And, yes, there's so much joy, connection and grace that we'd miss, so I'm glad God knew best when he blessed us with Teddy.

Teddy is currently quite healthy, yet there's never any guarantee with these children with PIGN. Although he could have a medical emergency, and we fear seizures the most, the reality is that his greatest threat is his lack of safety awareness and love of all things dangerous. It's no secret his guardian angels get quite the workout. (Yes, I said angels. There's no way that child doesn't have multiple angels keeping him as safe as he is.)

There's really no point to this, other than sharing our grief. We all know the saying that no parent should bury their child. The unfortunate reality is that a disproportionate number of parents do bury their PIGN children. There is no cure, and there's no treatment. 

So, we shall continue to support one another. And we will continue to fundraise for exploratory treatment in hopes that we, collectively, can give exactly that to one another ... hope that we will stop burying our children. If you want to make a donation, you can do so here: CDG CARE (givelively.org)