When a doctor tells you in your eighth month of pregnancy that your baby will likely be “incompatible with life”, it tends to change you forever.  

You find yourself in the depths of despair and desperate for a miracle.  

Faced with the possibility of never holding the baby you’ve carried, loved and cherished inside you for eight months, your soul is rocked to its very core.  


It destroys you.  

That one sentence was spoken to me, and I haven’t been the same since.

My daughter, Ryleigh, faced unexpected, unknown challenges before her birth.  

It was suspected that my body was doing all the hard work of sustaining life for her.  

Her tiny heart, with a congenital defect, was conceivably beating only because of mine.  

Surrounded by “what-ifs” and a lot of uncertainty, she entered the world at thirty-seven weeks gestation.  

Her heart was beating perfectly on its own!  

Hearing her initial cry was the sweetest sound I had ever heard.  

It was melodic and magnificent.  

At that moment, I felt a sense of gratitude wash over me that I had never quite experienced.  

I wanted to weep and laugh all at once.  

I felt a spiritual growth and strong universal connection at the sight of this tiny miracle.  

While she stayed in the NICU for three long weeks, I learned patience.  

All I wanted to do was take her home to meet her big brother and start our amazing new life as a family of four.  

But, I learned to take things day by day, and to celebrate the good in every visit with her.  

Never wanting to leave her side, I attained strength.  

When she finally came home attached to a loud, beeping heart monitor, I started to grasp the concept of being brave.

At only a few weeks old, Ryleigh was diagnosed with a rare genetic disorder.  

In discovering that she would face a life of challenges that no one would be able to predict, I experienced grief.  

It was an emotion I had never experienced to this extensive degree.  

It was the loss of the dreams that I had for her that I grieved.  

They were taken away in an instant with a diagnosis that denoted limited independence and disabilities.   

After taking some time to process the diagnosis, my grief started to change.  

With a look into her soulful blue eyes, it hit me: she was a gift given to me.  

She was HERE.  

She needed me, and I needed her.  

We would attack the world together, head-on.  

Life would not be easy, but there would be no limits placed on what she could do.  

Slowly, I began to see that the twist our life had taken was becoming a journey that would make me a better person.

Gradually, I started to feel enormous waves of gratitude washing over me.  Every day I found myself thankful for something else in her.  

She was here with me, showing such determination, and enriching my life.  

I learned to celebrate every breakthrough she made in therapy, no matter how small.  

I learned to dig deep and find the courage to survive seeing her have gut-wrenching seizures.  

I learned to increase my vocabulary of medical terms and I can tell you all about motor planning, proprioception and nephrology like a pro!  

I am a better person.

I see other families going through the same struggles that we did, and I feel the greatest sense of empathy.  

I’m not sympathetic, but I empathize completely….feeling what they feel, because I’ve been in their shoes.  

I want to help others so much more and I am passionate to raise money and awareness to assist families.   

My heart is different now.  

It had been deeply wounded, but it has been thoroughly revived and transformed…..

Every giggle she gives me….every gorgeous smile…every tight hug melts my heart.  

I’m the luckiest Mom on Earth because I have her with me.  

I’m more fortunate that I could have ever imagined, and she has shown me to find great beauty in all things.  

She has given me a new lease on life, with an entirely new outlook and perspective.  

Trivial things are now unimportant, and I revel in the happy moments that life brings every single day.  

I appreciate everything more now and am grateful for all that I have.  

I’m a better person, because she made me better.  

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