I’m sure this finds you in the trenches of unbearable pain that feels like you’re drowning over and over again, without any hope of coming up for air. I could say that I am deeply sorry, this isn’t fair and that your loved one does not deserve the hand they’ve been dealt. And each of those things are true. But as someone who has stood where you’re standing and also felt the soul crushing heartbreak no person should experience, I want to tell you something different. Yes, this journey will undoubtedly be hard, but God will cover you in ways you least expect. He will fill you with gratitude and competence and a spirit of resilience. You may lose some relationships along the way, but you will form bonds with those in this rare disease world that feel like family. Your loved one may face daily struggles, but they will also redefine what uncontainable joy looks like.

So right now, sit with your emotions, cry, work through your grief, anger and confusion. But please know, this pain won’t last forever. Make no mistake, your grief will forever come in waves. It’s a part of you now, but please don’t let it consume you. Eventually, you will come up for air again. And it’s there the Lord will provide you with strength and you will delight in the unexpected joys that lie ahead.

~ Karlita Blackwell
Mother of Ezra Blackwell (Born 10/8/16)


Dear Lord,
In a time of pain and uncertainty, we ask You to remind us that Your work is not done.
We know that in all things You are good and that You will redeem what is broken.
Lord, we ask that You cover those who are grieving and suffering with Your peace and restoration of the mind and the body.
Bless us with a spirit of serenity that only You can provide.

1 Peter 5:10

And the God of all grace,
who called you to His eternal glory in Christ,
after you have suffered a little while,
will Himself restore you and make you strong,
firm and steadfast.