This is the transcript from a devotional I led today at MOTS at LCBC. Lately I’ve been studying the importance of remembering as I prepare to write again. I’m not … Continue reading Gratitude Requires Effort
Category: Hope
Why I Don’t Mind Tough Times
I had a realization this week that surprised me, so I’m sure it will surprise you. I don’t mind when times are tough. Note that I didn’t say I like … Continue reading Why I Don’t Mind Tough Times
Limits Bring Freedom
If you’re like me, you don’t like being told what you can and cannot do. I think it’s something with which we all struggle and it’s likely because we are … Continue reading Limits Bring Freedom
Pursuing a Companion Bill in the Senate
I had waited nearly a month for today’s meeting, but it was worth the wait. As you know by now (and if you aren’t aware, you can catch up here), … Continue reading Pursuing a Companion Bill in the Senate
God Always Provides
Two days ago I wrote this about how unexpected expenses (this week being a $413 car repair) keep eating into our budget and making things so tight for us. I … Continue reading God Always Provides
Disappointment or Gratitude
Lately we’ve been hit by multiple unexpected expenses that have thwarted our efforts to be “gazelle intense” and become debt free. It’s been discouraging, to say the least. Each time … Continue reading Disappointment or Gratitude
Scars
I remember the doctor asking me if I would be okay with an eight inch scar on my forearm. I was seventeen, after all. Most teenage girls would probably stare … Continue reading Scars
Krabbe Awareness Month: Day Twenty-Six
South Carolina passed a bill after this image was created, so they will begin testing in the next 1-2 years.
Indiana expects to begin testing in 2020.
Pennsylvania will hopefully be testing by next year. We have a bill in the legislature (HB 730, numbered for Tori’s birthday) that will make screening equal throughout PA, and Krabbe will become mandatory. If you live in Pennsylvania, please contact your state representatives/senators and ask for their support!
It All Works Together for Good
Today was one of those days where everything made sense, once again. It was a day filled with non-coincidences (meaning that God was clearly at work because there’s just no … Continue reading It All Works Together for Good
Krabbe Awareness Month: Day Twenty
Because Krabbe is an autosomal recessive mutation, the chances per pregnancy are 25% that the child will be affected, 50% that they will be a carrier, and 25% that they will be unaffected. That may seem like a low chance that a couple would have an affected child, but Dr. Escolar told us that she often sees repeats in families.
On diagnosis day we were told two things in the same minute: Tori had Krabbe and was dying, and that we shouldn’t have more children. We were devastated.
Thankfully, we found out about IVF as an option to have healthy children and our twins are not even carriers of Krabbe. ❤
There is HOPE for families like us to have more children, whether through IVF, adoption, or foster care. Krabbe doesn’t have to mean the end of your dream of having a family.
Even So, Joy 