Nicole’s Journey

Our story started with Mikey being wished for with every birthday candle blowout , every shooting star, every prayer in every religion ! Ten years and thousands of dollars later , I was pregnant!! Perfect pregnancy (after a scare the first month). Amazing baby shower with 100 people , it was all I dreamed of. That was until they had to deliver my son by an emergency c-section almost 2 months early.

It was the happiest yet saddest day of my life. I didn’t get to see my son, touch him or hold him. They took him away to another hospital and all I could do was hold his picture til I was released. That was the hardest thing ever, until I saw him laying in the NICU, fighting to stay with us.  I thought that was the hardest of times.  Little did I know what the upcoming years would bring. Numerous hospital trips, surgeries, medications.

The first few years , they blamed his delays on being a preemie.  By age 2 he didn’t walk, age 3 didn’t eat and age 4 didn’t speak. His first diagnosis came, that was Autism Spectrum NOS. At age 5, he was officially diagnosed with RTS, Rubinstein Taybi Syndrome, a very rare syndrome.  We were told he likely wouldn’t walk, wouldn’t talk, wouldn’t be ” functional”.  My heart broke again.

Fast forward, he is a very sweet 11 yr old with big blue eyes, blonde curls and a smile that brightens my everyday . Medical issues still run his life. He sees 13 specialists out of town. He has nursing services, more medical equipment in his room than a hospital.  John Heinz Rehab has been his second home for years now for therapies. But he is walking, starting to feed himself and has some speech! Goals become reality and we just learned to never count this child out!

He has much to teach me! If it wasn’t for him, I wouldn’t have met the amazing people in our life who got us this far… And if it wasn’t for him, I would not hold my favorite title as mom!