This became a reality in the lives of our family three years ago, when our son Bowen lost the fight to this disease at 13 days old. We had no idea that Bowen was going to be born with ARPKD. We thought we would be adding another healthy child to our family. After he passed away, we were devastated, heartbroken and left with a lot of questions unanswered. Why was our child taken so soon and never given a chance? This is a question many parents in this situation have thought about. Even though we were only able to hold Bowen in our arms for a short while, he will hold a place in our hearts forever. Bowen may not physically be here with us, but the love we have for him still exists. What we do with the love we have for him matters.
Today is Pregnancy and Infant Loss Remembrance Day. We know children are a footprint in our lives. They are extensions of our hearts that walk all around this earth. The below poem written by Doreen Sexton beautifully depicts the footprint our children leave.
Some Children come into our lives and go quickly,
Some Children come into our lives and stay awhile,
All our children come into our lives and leave footprints
some, oh so small,
some, a little larger,
some, larger still.
But all have left their footprints on our lives, in our hearts.
And we will never, never be the same.
- Doreen Sexton, parent, Phoenix, AZ copyright 1988
A baby’s life is something so precious. Just because their lives have been taken too soon from this horrible disease does not mean they are forgotten. They indeed hold a place in our hearts that make a forever lasting imprint. Some lives may only last for a moment, but a memory lasts forever. In honor of all the babies who have lost their lives to ARPKD, today, light a virtual candle to remember those who have lost the fight, and help their memory live on. Even though our babies can’t be here with us, they will always be a part of our lives, just in a different way. Our children live on through us, leaving their footprints wherever we go.
This is a special day for many families in the PKD community. On behalf of the PKD Foundation, we want to send our deepest sympathies to all who have lost their children to ARPKD and ADPKD.
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