Adalyn Grace

Our sweet little miracle was born on May 2, 2015.

During my pregnancy, we had discovered some severe anomalies within her little brain. We knew there was a large chance that she wouldn't survive. There were so many prayers offered on her behalf!

She was born crying, breathing! She was a miracle right from the beginning....she could hold her own. She came into our world creating the most beautiful wave. For a moment...we wanted so much to pretend everything was perfect.

However.....we knew it wasn't. A few days after she was born, a MRI confirmed some of our worst fears..

Almost every aspect of her brain was affected in some way, except for her brainstem. She was missing her corpus callosum (the part of your brain that communicates between both sides of your brain) and her septum pellucidum and a portion of her cerebellum. The ventricles in her brain were far bigger than normal, some were filled with fluid, and others were filled with cysts. Her cortex was far too smooth....in a normal brain it should have ridges. She had bi-lateral cleft palate and lip. She did have a left eye, but it was too small to open very often. She also had hemi-vertebrae of two of the vertebrae in her thoracic spine.

As far as a diagnosis, the closest we will ever get is called Acardi Syndrome. A severe form of Acardi that effects every aspect of her brain. However, there is no definitive test...If it were Acardi Syndrome...it would be among the most severe documented cases.

According to science.....she wasn't supposed to live. Yet she did!

We were able to have 6 months and 11 days with our perfect little miracle. She knew nothing but love. She had the strongest and most noble spirit. Adalyn was faced with giant mountains. Each day was a fight for her. She developed seizures at 1 month old....seizures that became their own fierce monster. By the time she was 6 months old, she was seizing over 100 times per day.

Through it all, she endured with such grace. She gave us smiles, squeals and beautiful days. She taught us that strength isn't defined by physical abilities. In fact, I am now convinced that the strongest of souls lies in brave little babies like her. She taught us that there truly is power in love. Goodness how she exuded the most brilliant love!

She changed every part of our hearts. Each and every day of my life, I will feel grateful that I was able to hold such a perfect soul.

Adalyn slipped back into heaven on November 13, 2017. It was quite easily the most devastating moment of my life.

It is difficult to live with a part of your heart in heaven. It is just as difficult to face each day without her. However, we strive to live each day better because of her. She continues to teach us to live "purposefully."

Adalyn made me a mother. She has taken us down the hardest road we have ever walked.... Yet, I would never trade away one moment I had with her. She has brought some of the most incredible people into our lives. I have learned what it is to mourn with others. I have learned empathy. Hope. Faith. And what it is to live with a broken heart.

I believe that someday, I will get to hold her in. my arms once again. One day there will be no more tears or sorrow. Just the purest joy!

We love you always and forever my sweet Addie baby!