Tough Like Taylor
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Tough Like Taylor

Tough Like Taylor

Tough Like Taylor

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Fighting for Change
Feb 12, 2019
Fighting for Change
Feb 12, 2019

Writing this post is really difficult, because it plays to one of my worst fears as a parent of a child with special needs.  The timing is ironic, as I literally just sat with a friend in a coffee shop over the weekend and shared this fear….that my daughter, Taylor, will be treated poorly or subjected to verbal or physical abuse, and that I will not know about it. Every parent fears this, but it is most concerning to me because my daughter is nonverbal. She would have no way of telling me what happened.

Feb 12, 2019
5 Lessons Learned Since The Diagnosis
Jan 13, 2019
5 Lessons Learned Since The Diagnosis
Jan 13, 2019

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.

Jan 13, 2019
Top Four Posts of 2018
Dec 31, 2018
Top Four Posts of 2018
Dec 31, 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.

Dec 31, 2018
Kindness is a Higher Calling
Dec 18, 2018
Kindness is a Higher Calling
Dec 18, 2018

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!

Dec 18, 2018
Standing and Walking: Our Favorite Toys for Encouraging Gross Motor Development
Dec 4, 2018
Standing and Walking: Our Favorite Toys for Encouraging Gross Motor Development
Dec 4, 2018

Last, but not least, here is a list of some of our favorite toys to promote standing and walking. Check out some of our other recommendations to encourage tummy time, sitting, and crawling. Taylor did NOT enjoy standing for a long time. I think she felt extremely unstable and she tends to be a bit cautious in general These particular toys kept her engaged and interested while in standing and really motivated her to be on her feet!

Dec 4, 2018
Crawling: Our Favorite Toys for Encouraging Gross Motor Development
Nov 22, 2018
Crawling: Our Favorite Toys for Encouraging Gross Motor Development
Nov 22, 2018

We’ve covered our favorite toys for encouraging tummy time and sitting, and now we move on to crawling. Crawling requires significant strength and coordination, as well as the ability to plan and execute movement, also known as motor planning. Crawling is going to improve core strength and postural control, as well as strengthen muscles in the shoulders, arms, and hands.

Nov 22, 2018
Sitting: Our Favorite Toys for Encouraging Gross Motor Development
Nov 21, 2018
Sitting: Our Favorite Toys for Encouraging Gross Motor Development
Nov 21, 2018

It will take several months to build up the strength and coordination for your little one to sit. I was so excited when Taylor was able to sit up (even propped) as it seemed to give her a new view of the world and she became even more engaged. The items that will be listed below were particularly helpful for us as Taylor made the transition to sitting independently.

Nov 21, 2018
Tummy Time: Our Favorite Toys For Encouraging Gross Motor Development
Nov 21, 2018
Tummy Time: Our Favorite Toys For Encouraging Gross Motor Development
Nov 21, 2018

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.

Nov 21, 2018
Give Thanks
Nov 19, 2018
Give Thanks
Nov 19, 2018

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.

Nov 19, 2018
Cultivating an Attitude of Gratitude
Nov 15, 2018
Cultivating an Attitude of Gratitude
Nov 15, 2018

Did you know that gratefulness is correlated with life satisfaction and happiness?  Those that take time to recognize and express thankfulness are less likely to experience depression and anxiety, and more likely to report general feelings of happiness and well-being. 

Nov 15, 2018
Third Time's a Charm
Sep 23, 2018
Third Time's a Charm
Sep 23, 2018

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.  

Sep 23, 2018
In The Storm
Sep 15, 2018
In The Storm
Sep 15, 2018

As Hurricane Florence, one of the largest hurricanes to hit the Carolina coast, inches closer to Charlotte, NC, it is obvious there will be record rains and catastrophic flooding in certain parts of the Carolinas.  Big storms always remind me of Matthew 14:22-33:

Sep 15, 2018
Loss of a Life Imagined: Grief and Chronic Sorrow
Aug 28, 2018
Loss of a Life Imagined: Grief and Chronic Sorrow
Aug 28, 2018

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. 

Aug 28, 2018
10 Tips for Supporting a Parent of a Child with Special Needs
Aug 16, 2018
10 Tips for Supporting a Parent of a Child with Special Needs
Aug 16, 2018

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. 

Aug 16, 2018
Coincidence or Sublime Plan?
Jul 30, 2018
Coincidence or Sublime Plan?
Jul 30, 2018

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. 

Jul 30, 2018
Together We Can Do Something Wonderful
Jul 11, 2018
Together We Can Do Something Wonderful
Jul 11, 2018

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.

Jul 11, 2018
6 Tips For Talking With Your Child About Disabilities
Jun 14, 2018
6 Tips For Talking With Your Child About Disabilities
Jun 14, 2018

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?!" 

Jun 14, 2018
Motherhood is Servanthood
May 13, 2018
Motherhood is Servanthood
May 13, 2018

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.

May 13, 2018
What is PURA Syndrome?
May 6, 2018
What is PURA Syndrome?
May 6, 2018

What IS PURA Syndrome anyway?  As we speak, researchers are attempting to learn more about PURA Syndrome; however, here are a few things we know about this rare genetic condition.....

May 6, 2018
Inspiring Response
May 6, 2018
Inspiring Response
May 6, 2018

It is difficult to put into words the amount of gratitude that our little family has experienced over the last two months.  From the moment, we received Taylor's rare genetic diagnosis of PURA Syndrome, we were treated with great care, love, and support. 

May 6, 2018
Taylor's Story
May 6, 2018
Taylor's Story
May 6, 2018

The day we found out I was pregnant, we were thrilled.  We were overjoyed with hope and promise for the future and were beyond excited to become parents.  I had an uneventful, healthy, and smooth pregnancy.  Taylor must have thought so too, because she was very comfortable in mama's belly. 

May 6, 2018
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Tough Like Taylor

About Tough Like Taylor

Taylor is a joyful and vivacious toddler who has a rare genetic condition called PURA Syndrome.  Taylor teaches us lessons everyday, especially how to be tough in the face of adversity. This blog is dedicated to telling her story, raising awareness, and inspiring hope. 

Read Taylor's Story.  About This Blog.  Facebook.  Instagram.  Back to Home.


toughliketaylor@gmail.com

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