5 Lessons Learned Since The Diagnosis

5 Lessons Learned Since The Diagnosis

One year…..One year since we received the call that would firmly change the projected path of our lives.  Early in the morning on January 11th, 2018, we received answers for our daughter’s developmental delays.  PURA Syndrome - the first time I would hear the name of this rare genetic condition.  Knowing provided answers, and a community, yet also leaves us with many questions, as is the case with most rare diseases.

Read More

Top Four Posts of 2018

Top Four Posts of 2018

I started this blog in May of 2018, about four months after Taylor was diagnosed with PURA Syndrome, a rare genetic condition affecting approximately 200 individuals worldwide. I wasn’t really sure what I wanted to do with it at the time, but I knew I wanted a quick way to update the many people who are very interested in Taylor’s life, and also wanted to bring awareness to my daughter’s condition and other rare diseases.

Read More

Kindness is a Higher Calling

Kindness is a Higher Calling

Chick-fil-A, would you like a review of a recent experience at one of your restaurants?  It would be my pleasure! Anyone who dines regularly at a Chick-fil-A is well aware that these folks know how to provide quality customer service.  It’s a bird, it’s a plane….NO, it’s your local Chick-fil-A worker!!!  Chick-fil-A sends people into the rain and snow to cut down on your drive-thru time, they will walk your food to your table and bring a high-chair for your child, they will ensure you have ample sauce, straws, your beverage is never empty, and your trash is cleared, and respond to your expression of thanks with a cheery “my pleasure.”  They are pretty much A-M-A-Z-E-B-A-L-L-S!

Read More

Third Time's a Charm

Third Time's a Charm

I’m so proud of my girl!  Taylor recently turned three years old and we had an amazing time celebrating her third birthday with family and friends. If I am being completely honest, this is the first of Taylor’s birthdays where I felt truly celebratory. Taylor’s first birthday was not a particularly joyous time for me.  

Read More

Coincidence or Sublime Plan?

Coincidence or Sublime Plan?

My husband and I recently decided we wanted to start the process of looking for a new home.  We have been living in a tiny two-bedroom condo for the last several years, one we bought shortly after the recession for an amazing price.  As I reflect, we weren’t even planning to buy the condo.  Back then, we were a newly married couple looking to move a little closer to the city.  We met with the previous owner, a sweet, recently widowed retiree, with the intention of renting. 

Read More

Together We Can Do Something Wonderful

Together We Can Do Something Wonderful

One of my favorite quotes is from Mother Teresa: “None of us, including me, ever do great things.  But we can all do small things, with great love, and together we can do something wonderful.”  Tough Like Taylor’s parents had an opportunity to travel across the pond at the end of June to attend the 3rd Annual PURA Syndrome Conference.  The conference was held in the United Kingdom at the Wellcome Genome Campus, home to the Wellcome Sanger Institute, which is one of the leading genomic research centers in the world.  One third of the human genome was sequenced for the first time on this campus, which provided the largest single contribution of any center to the Human Genome Project (HGP)……pretty cool stuff.  Way over my head…..but pretty cool.

Read More

Motherhood is Servanthood

Motherhood is Servanthood

Happy Mother's Day!  I can honestly say that I had not even thought about Mother's Day until two days ago and that is only because my husband brought up the (lovely) idea to take me out for nice child-free dinner.  Mothers and fathers deserve to be applauded and acknowledged on their respective days.  Parenthood is a 24/7 job, with few vacations or accolades.

Read More