If we are friends on Facebook you might have come across a post providing you with a glimpse of what our now 1 year old, Robert Cruz Gomez is facing. See, Rob was born with a RARE congenital disorder. I will not bore you with all the medical terminology, the only way to describe is that Rob was born with an overgrowth syndrome. Picture this, at birth his right leg had and continues to have a length discrepancy of about 1 inch longer than his left; two of his toes are infused making it look like a big mass; and he has an extra pinky toe. By two months of age, we started noticing that his leg and thigh looked a little thicker in girth than his left. By 4 months of age, his right buttocks started becoming more bubbly and fuller than the left. The RARE condition is unknown and one of the two possible procedure recommended by his medical team of 13 specialist carries a high probability in aggravating the overgrowth, thus having our little one have multiple hospital stays and surgeries throughout his childhood. The second option is amputation. I'll share details of both procedures a little later. However, It's a decision a parent should never have to make "in the best interest of the child." I write that in quotes because that is what I hear every time we meet with one of his specialist. A phrase that makes no sense to me. How can we, as Robbie's parents, make a decision in his best interest when neither road you pick no one knows where it leads or what the consequences could be. I CAN NOT In good faith or in the best interest of my baby boy, be part of a decision without a fight, without exhausting every possibility, no leads or doors left unopened, and obtaining multiple opinions from medical professionals outside our insurance coverage.
We are overwhelmed, at times we are physically here but not present. No one seems to be home. I am writing this blog to let go and Let God. I want to let go of this anger, confusion, frustration, feeling of hopelessness, the sleepless nights, the anxiety, and sadness that I carry and try to mask. I want to be accepting of my family's new reality; I want hope; I want to smile and really mean it. I want for things to be easy again. It's been a tough year for all of us. Explaining to Samantha the challenges her little brother is facing and trying to answer her questions about his condition is frustrating and overwhelming when we ourselves have no answers.
I want to use this blog as a platform to educate, raise awareness, provide resources, but most importantly to keep everyone up to date with Robbie's progress and how your donations are being spent. A few weeks back we held a fundraiser to cover some medical equipment and other medical expenses our insurance will not cover. Originally we raised the money to provide him with leg braces to assist in walking and to prevent other complications that may rise as he learns to walk. To our surprise, a week or so before his 1st birthday Robbie took off walking. He started walking as if he had been walking forever. Mind you, with the length discrepancy he has a limp, his steps are a little off, but none the less HE IS WALKING. So now what? Well, he won't be needing those leg braces anymore instead, Robbie will be getting his first pair of shoes. That's right folks, his very first pair of custom made shoes at the age of 1.
I'm going to leave you with a whole lot of cliff hangers ..... come take a walk on the RARE side.