Every Child Is A Different Kind Of Flower, And All Together, Make This World A Beautiful Garden

Every Child Is A Different Kind Of Flower, And All Together, Make This World A Beautiful Garden

This quote really speaks to me and resonates with our family’s journey raising a child with special needs. I truly believe this pertains to ALL children but is particularly meaningful to parents raising children with various disabilities and medical challenges. There is a science and an art to gardening.  Some flowers need lots of sunlight, while others thrive in the shade.  There are certain flowers that are resilient and hardy and need very little water or care, whereas others need to be watered daily and require plucking and pruning.

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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.

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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. 

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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.

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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.

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