Halfway through her pregnancy, my friend Ruth and her family found out that the baby girl, Pearl Joy had alobar holoprosencephaly (HPE), a neural disease with low chances of survival. Literally her diagnosis was 'not compatible with life'. I read each email from their family as the pregnancy progressed with hope and anger all balled up in one. I prayed, I cried, I fought back doubt, I wished for all things to be made new again, I embroidered God's promises on a square of a quilt for Pearl. And then she came. And then she lived. She lives still! She was born on July 27th at 12:07am.
Written before her birth, Pearl's father's words about her life, even if it was only in the womb, struck a deep chord in my heart.
"There is a weighty joy surrounding all of her life, but to deny the joy and only focus on the sadness would be doing her a terrible disservice. Like all of us, there is so much more to her than her weakness."
I am continually being amazed by the work of God in the lives of those He loves. (Even when we don't love Him back). I am in awe of the love and help and community poured out on this family. I am rejoicing in the reminder of who God is. In the midst of politics, controversy, trouble, strife and madness, there is a baby girl born to a family and in her birth, there is the boundless love of God poured out on not only their family, but the community where I live and on every person who has read her story. I pray my life may be poured out in such a way.
Phillipians 2:17 But even if I am being poured out as a drink offering upon the sacrifice and service of your faith, I rejoice and share my joy with you all. 18 You too, I urge you, rejoice in the same way and share your joy with me.
You can read more about Pearl in the following places:
A letter from her mother at my friend Amanda's website.
On her website where her father posts
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