September 5 is Pierre Robin Sequence (PRS) Awareness Day!
These babies are rare (between 1 in 2,000 to 1 in 30,000). They go through a very rocky roller coaster within the first year (and some for their whole lives!) — Namine herself had a tracheostomy until she was two years old, and a g-tube even longer. They have many challenges ahead of them, from difficulty breathing, multiple surgeries, and just plain facing the complete unknown. Every day is a new challenge for these babies, kiddos, and their parents.
If you love someone who is rare with PRS, please share to raise more awareness. No #icebucketchallenge, just spread the word. Please take a moment to help spread awareness for our strong kids!
Last night Namine’s devotion was about purpose, and about how God’s people in the Old Testament were not heroes. They were not model citizens, they were imperfect, flawed. Just like us. When I asked Namine what gifts God has given her, she shrugged. “I don’t have any,” she replied.
“That’s not true,” I said. And I told her a story:
“Before you were born, we found out about your caudal regression, and your Pierre Robin, and your heart. Some of Mommy’s doctors told us that you would be very sick, and that we should give you up.”
In truth, they suggested abortion. But that’s not a discussion I’m willing to have with a six year old.
Namine looked at me wide-eyed, but said nothing. I continued: “But we didn’t want to give you up. We wanted to keep you. Even though we had never met you, had never seen you, we loved you.”
“I want to keep you too!” Namine exclaimed. “We’re a family, and we love each other, no matter what!”
I nodded. “That’s right. And even though you’ve been through so much, we know that God has a plan for you. He has a purpose for you.”
“Because when you were little, when you still had your trache, Aunt Lydia met a lady who was going to have a baby, and her doctors thought her baby had caudal regression, just like you do. And just like some of Mommy’s doctors many years ago, these doctors were telling this lady to give up her baby.”
Namine gasped. She started to ask a question, but I held up a finger to indicate that I was not done.
“You know your Aunt Lydia has a bunch of pictures of you on her phone. Well, she showed this lady pictures of you, and she told her all about how strong and wonderful and awesome you are. And do you know what?”
“That lady decided to keep her baby. So you see, my little love, you have a purpose. You can tell other people about yourself.” (That’s called advocacy, kids.) “Even though you’ve never even met them, you’ve already told people about yourself. You can tell them how much we love you, and you can tell them how much God loves you.”
“I’m glad God loves me,” Namine said. I agree. I am very glad God loves us.
If you cannot speak like angels,
If you cannot preach like Paul,
You can tell the love of Jesus;
You can say he died for all.