There I was, a 24 year old with a brand spanking new baby, I should have been overjoyed and ecstatic. I was already separated from my now ex husband so I was not only a new mom, but a new single mom. I got a call from my son's pediatrician saying he tested positive for cystic fibrosis on his newborn screening blood work. At this point Mikey was 13 days old. I knew prior to this call that something wasn't right, he didn't seem to be digesting milk properly and wasn't gaining any weight. I was familiar with cystic fibrosis from nursing school, so I was scared, really scared. I just hugged my baby and made the necessary appointments to figure out our next steps. Once all of his medications and treatments were thrown into our lives I thought, "thank goodness I'm a nurse". I was easily able to understand what I was doing and what medications I was giving him. I then realized I needed to change my negative thoughts into positive ones, and that God chose me to be the mom of a child with CF for a reason. He knew I could care for him and give him the most love he needs and deserves.
"He's my hero."
When Mikey was a baby, I was afraid to let him do almost anything for fear of germs and illness. I wanted to put him in a bubble. When he was in the early walking stage I didn't even want him to go on playgrounds because I had no control over how clean/dirty they were. Mikey had his first round with pseudomonas aeruginosa at a year old. I have been able to take care of his illnesses at home with oral antibiotics and increased treatments and for that we have been very fortunate. Since that first bacteria scare, I learned that I can't control everything. He needs to be a child first before anything else. Bacteria is everywhere and no matter how much I want to control it I can't. I now have the sweetest, happiest, most loving 3 year old boy any mom could ask for.. he just also happens to have CF. He loves race cars, trains, airplanes, and outer space (his vest is galaxy theme!) He goes to preschool, loves to play on his iPad, run outside on the playground, go swimming, play catch, shoot baskets, and play with his friends just like any other kid. He's not at the point yet where he knows he has an illness, but I hope he never loses his amazing spirit. He's my hero.
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