Our precious Ethan was born July 9, 2007, weighing 5 pounds and 6 ounces and measuring 17 inches long. He was our third son and we were so excited to be adding a new blessing to our family. Ethan has two older brothers, Taylor who was 10 at the time and Landon who was 3, who were anxiously and excitedly awaiting his arrival. Our lives changed drastically that day, and what was suppose to be one of the happiest days of our life suddenly felt like a bad dream. Within hours of Ethan’s birth, he was rushed by ambulance to a NICU that was an hour away.
Ethan spent 21 days in the NICU, as we waited to find out what was going on with our sweet boy. We were so blessed to have a radiologist, that very first night in the NICU, who had recently read an article about Rhizomelic Chondrodysplasia Punctata and he helped point the doctors and genetic team in the right direction. Within a weeks time, we had a preliminary diagnosis of RCDP, Type 1. It truly felt like our whole world was falling apart and we could find no one who had ever seen or heard of this disease that we were faced with. Ethan was not able to eat enough by mouth so once we received the RCDP diagnosis, the decision was made to place a g-tube to make things easier on him. Looking back, I have to say that it was one of the hardest but also one of the best decisions that we ever made for our boy. Doctors discharged Ethan when he was 3 weeks old and told us to take him home and to love and enjoy our time with him because he would never live to see his 1st birthday.
That first year was a blur and we felt like we were living on borrowed time and in the midst of that immense grief, we still had two other children to take care of and endless appointments, with what felt like every specialist known to man. Ethan endured several surgeries that first year…..g-tube, nissen fundoplication, cataracts and ear tubes. He had physical, occupational and speech therapy each week. He wore glasses or contacts, hearing aides, he was fitted for foot braces and hand splints and through it all, he never stopped smiling. Somehow, we made it through that first year, BY THE GRACE OF GOD, and when June rolled around we were so thankful and grateful to start planning Ethan’s 1st birthday party and to be able to celebrate the first of many milestones that doctors said Ethan would never reach.
Ethan has overcome so much and proved so many doctors wrong. He is a little, but mighty, warrior and we have loved watching him grow into the sweet boy that he is today. Life has certainly gotten easier over the years and we have been able to settle into a comfortable routine. Our older boys adore Ethan more than words can say and are always willing to help out in any way needed.
We have watched our sweet boy endure so much in his life but he is forever smiling and never cries, even when he is sick or in pain. He may not be able to roll over, walk or talk but he loves life and he teaches us daily what is truly important. Each day with Ethan brings us so much joy and we cherish every moment that we have with him. We are so thankful that God chose us to be the family that gets to love and care for sweet Ethan and we never plan on limiting the life that God has planned for him. He is the greatest blessing of our life and even on the hardest days, when worry and fear overwhelm us, we are forever grateful and know how truly blessed we are.