But why the care packages? Why not raise money for research?
That's the well intended question that was asked of me in a Facebook group last week. Her child had also died of a Urea Cycle Disorder, and her passion is raising funds for UCD research.
I get that. I understand completely, but she's missing something.
What do we do while we wait in all of this reasearch to come to fruition with a new medication or a cure? What do we do in the meantime when there are real families who are on their knees on the cold tile floor of a hospital while their 1/70,000 ASL baby fights for its life? What do we do when the 36 weeks pregnant mama travels 6 hours away to a better prepared hospital to give her 1/2500 CDH baby a fighting chance when he's born. How about when a family is getting ready to watch a soccer game but instead makes an emergency trip to a hospital only to find out hours later that their three month old has the monster that is cancer growing in her brain?
I'm so thankful for all the people who have picked up a cause and lifted it up high for all to see. It's amazing to watch a family choose to take their hurt and use it to help others. I'm especially thankful for the fundraisers for UCD research, since my own sweet baby was affected by that mostly unknown disorder.
But it's not just UCDs. It's not just cancer. It's not just CDH. It's not just prematurity. It's not just birth defects.
It's real people. It's real families. It's because my heart is not the only heart that is hurting in this world. It's for as many of the hearts in the midst of the unknown as Luke's Legacy can reach.
And, most of all, it's Jesus. I just want to make sure that, even if the unimaginable happens, these families know that Jesus can carry them as they dance that sacred dance.
So, it may not make much sense to some, but we have our reasons.
We care for the hearts that are in the midst of pain, and we want them to know that Jesus cares, too.