Tags » Rare Disease

The Day We Joined a Family

Two years ago, we received the phone call we had waited almost a year for. We were in need of answers. Our beautiful daughter had been hospitalized almost every month. 754 more words


Stop the Reeling!

My body feels like its been hit by a MACK tuck. January seems to have been emotionally difficult for me so far, particularly this past week has been quite distressing with extremely harsh PH realities hitting a helluva lot more than a… 1,725 more words


Diagnosis Day

Why we choose to celebrate the day Micah was diagnosed. 1,851 more words

Daily Life

Last Christmas I Gave You My Heart 

​Well, technically speaking, last Christmas I tested my heart.

I know I shouldn’t go on rollercoasters, but I miss them and love them and I went to Winter Wonderland… anyhoot, definitely my last dose of fairground adrenaline. 474 more words

Looking Back...There's Just CF

I love looking back at the pictures of Harrison when he was a baby but so many of them are in the hospital with his PICC line and he’s so underweight and frail looking it makes my heart ache. 388 more words

What defines you?

I have a tweet pinned on my Twitter profile that’s been weighing on me lately:

“Brain Tumors don’t define me”

But, you know what?  They… 290 more words


A New Normal

“These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.”

1,583 more words