By Joanne Stainton
As we approach the twins 4th birthday I can’t help but be reminded of all of the terrifying events surrounding their birth-the emergency c-section, ventilator setting, back to back PDA ligations, numerous blood transfusion, etc. But one event will forever stand out for me, the night our sweet 1lb 9oz daughter had a small bowel perforation at 12 days old-this event changed our family’s lives forever.
Since Kate was so small at the time, her body wasn’t equipped to deal with the trauma at hand and a few weeks later developed a brain bleed. I’ll never forget the call from the Neonatologist telling me her head ultrasound showed a Grade 3+ bleed. That day I thought my world had ended. The future I had imagined for our sweet girl was gone. She would most likely never walk, talk, go to prom or graduate like everyone else’s kids would. Our family went into a period of mourning. How can you find a bright side with all of this grief? A few months later, while walking to another doctor appointment, out of nowhere, Kate smiled for the first time. I’ll never forget fumbling for my phone to take a picture while I was a crying mess on the sidewalk. It was the happiest day of my life. That day was a turning point for me. While she would never hit any prescribed milestone, the ones she would hit would mean more to me than anything else. I don’t mean to discredit her amazing brother, her twin William. They are both a gift from God that I would never take for granted. But to see this sweet girl who had been through so much, smile like everything was just right, affected me forever.
At 6 months Kate was diagnosed with Cerebral Palsy. We were told she may never talk or walk or accomplish anything close to that of others her age. But that smile made me realize that I don’t care. As long as my little girl is happy and healthy that’s enough for me. I don’t see her disability as an obstacle she can’t overcome, more a reality that is to be faced with love and compassion. There are definitely days when the endless therapies and doctor appointments get to me. But she is a blessing given to my husband and I that we are so thankful for. We never imagined that our pregnancy would result in an emergency c-section at 25 weeks or that our sweet girl would be disabled as a result. But, faced with reality we know we are a stronger family because of it. The love and welfare of our family supersedes anything else in our lives and makes us so appreciative of what we have. We have also learned that perfect means different things to different people. We see our little girl as perfect where others would be terrified to be in our shoes and that’s OK because in the beginning we were terrified too. So we hope. We hope she is always happy. We hope that she continues to progress. And, most importantly, we hope she keeps on smiling.