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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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.

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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!

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Tummy Time: Our Favorite Toys For Encouraging Gross Motor Development

Tummy Time: Our Favorite Toys For Encouraging Gross Motor Development

I have received a few requests to share some of our favorite toys for encouraging gross motor development. As a result, I’ll be doing a series of posts over the next week highlighting some of our favorite toys! The options below will work well for neurotypical children, as well as children with developmental delays.

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Give Thanks

Give Thanks

Thanksgiving is upon us!! We love this time of year.  Our family views it as a time to come together and reflect on the blessings of the last year.  2018 has not been the easiest year for our family, considering we received a diagnosis for our daughter, Taylor, which explained her significant developmental delays, but despite that, we are trying to approach life with thankfulness and gratitude.

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Loss of a Life Imagined: Grief and Chronic Sorrow

Loss of a Life Imagined: Grief and Chronic Sorrow

I like to put a positive spin on things….look at the bright side….make lemonade out of lemons.  However, there are some days when parenting a child with special needs is really tough.  Slow progress can be discouraging.  The inability to fully communicate with a child can be frustrating and feel lonely.  And, although I try to avoid it like the plague, I can’t help but compare my child to all those typically developing children running around in the world. 

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10 Tips for Supporting a Parent of a Child with Special Needs

10 Tips for Supporting a Parent of a Child with Special Needs

Not sure how to support your loved one who has a child with special needs?  You are not alone.  Most people are unsure about how to respond to a family when they receive a potentially devastating diagnosis.  You may not know what to say or how to help.  You may feel the relationship growing distant and not know why.  Although you may feel uncertain about what to do, there are many ways you can support a parent of a child with special needs, and let me tell you, we NEED your support….now more than ever. 

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6 Tips For Talking With Your Child About Disabilities

6 Tips For Talking With Your Child About Disabilities

We have all experienced it.....you are having an eventful shopping trip to Target (one where you claim you are going to buy sunscreen, aaaaand $175 later.....)  You have cleared out the store and are waiting patiently in the check-out line.  You look into your shopping cart and see your child staring, aghast at a person in a wheelchair and then loudly proclaiming, "Mommy, why is that boy drooling?!" 

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