It’s More Than a Birthday Celebration


This is my birthday week!  I love birthdays and I love to celebrate them… Life is such a gift and I think your special day should be celebrated.  This year I will be home on my actual birthday for the first time in a while, and it’s on a Friday! YAY happy birthday to me!   Having said that, there will always be another reason that I will be thankful for on my birthday for years to come…

First I need to tell you that last week my children came home from school with their report cards and proudly exclaimed they got good grades!  I am always astonished because I feel that I do very little to contribute to their success. In reality it’s the teachers at their schools prepare them for this success, something else I’m so thankful for.  Having said that I hope that I have taught them to respect their teachers and peers as they attend class without me.

This year’s report card day though holds a little extra emotion for Carter and me.  If you have followed Karli’s story, you will know that she was born 4lbs 9oz and spent her first 11 days in the NICU (the angel’s wing).  From the moment she entered this world she has fought so many issues; starting at birth with her weak eyelid, reflux, kidney reflux, and other diet related issues.  On top of all that, she started school a year late due to difficulties in getting her potty-trained.  2018 is the year her speech and friendly behavior have to be addressed.  Karli has had a joy about her since the day she was born which lights my world every day, but unfortunately she also has be labeled with things such as having no boundaries, wild, and last year an over friendly trusting nature.  The combination of all of these items led to a recommendation that my daughter be tested for William Syndrome.  It was one of the most trying times in my life, more so than any other struggle I had overcome in the past.

When reading about the syndrome, it state that she may not be able to have a normal life, hold  a challenging job or be able to care for a family of her own.  This was heartbreaking, and was very hard thing for me to know how to parent. One of the major concerns was for her heart as heart disease is a common symptom of the syndrome.  Just after we heard this news, Karli woke in the night crying of pain in her stomach.  I rushed her to the ER at midnight not knowing what was wrong, and all the things I had researched racing through my mind. Thankfully it was nothing serious – but it did make my fears for Karli feel more real.

Our biggest fear was that we would somehow lose our joyful little girl because her body and mind would begin to deteriorate or that we would actually lose her because she had an increased likelihood of being abducted by a stranger because of her over trusting nature, a symptom of WS…  My Karli’s JOY was a symptom! It was just too much to bear.  I remember one of the sweetest things Carter has ever said was… “well, we will just leave, we just go away from all people and it would be just our family there” This too was a scary thought for me as I love interacting with people but it was perfectly timed statement on his part.  Like the comment, “are you ok?” 15 years earlier that made me want to spend more time with him…

It was really hard to parent in the following weeks. I didn’t know when to discipline or what expectations to have for her.  What to sign her up for and what to keep her away from completely.  It was a couple weeks before engineering week and I was so sad.  The vision I had for my daughter was very different from the ones the doctors, teachers, and the World Wide Web were proclaiming as her fate.  It was one of the most humbling times, and I relied on my faith in god more than ever before… Believing Karli didn’t have this but also seeing how extremely likely it was based on her symptoms… But… we had great faith as a family, extended family, and friend network that got us through this time.  Thankfully, the results for Karli came back negative and she did not have to be labeled with a syndrome.  The label is what would have been the hardest… not the struggles.  We can get through many difficult times – I am proof… but we must have HOPE and FAITH.  I am extremely thankful for both of these traits in me and as you can see I have a lot to celebrate during my birthday week this year.  Thank you for letting me share my story with you!  I look forward to hearing yours when you need to share it!