Blink of an Eye: October 2013

Wednesday, October 16, 2013

Dear Ryan,

Dear Ryan,

Happy Birthday Sweet Baby Boy! Although you would be six years old today, you will always be my baby boy...my little one...my first born.

As the years pass since loosing you, I must admit that the pain I feel, while still real and raw, is no longer constant, but rather an ebb and flow throughout the days. Reminders of you are all around us, whether in actual items, friends going through similar losses, or Noah innocently talking about his "big brother Ryan". I think and wonder about what you would be like. How our life would have been different with you in it.

I long to hold you in my arms, feel the weight of you on my body, and smell your sweet aroma. I love you, baby boy. Happy Birthday!

Love,

Mama

The Story

Our son, Noah Stone Jackson, was born with a very rare genetic disorder called Fraser syndrome. Among his many challenges are one “hidden eye”, a narrow trachea (which required him to have a tracheotomy), an imperforate anus (which required a colostomy), difficulty swallowing (which required a G-Tube for feedings), the fusing of his vocal chords (which means he may never speak), and club feet (which are being corrected with braces). Our family is on an amazing journey together. We are learning to walk along this path that God has planned for us, trusting in His infinite love and wisdom. We are taking each day (or each moment) as it comes and relying on each other, our friends and family, and our God for strength. We have a long road ahead of us filled with several more surgeries, lots of recovery, countless hours of therapy, and many trips to specialists around the state. Every day brings us challenges but they pale in comparison to the smiles and cuddles from our little man. Noah is our son, a true gift from God, and we cannot wait to see where this adventure leads.