A New Kind of Normal

It came as a total surprise that there was a Baby A and a Baby B. It was a total and fabulous surprise. There were ultrasounds every month that showed two normal growing babies. It progressed to 35 weeks and a “c section” and the anesthesiologist were my new best friends. That was the day that changed our lives forever. Our lives and are family became complete. That day also brought us in touch with more hospitals and doctors than I ever imagined I would meet, with little people in my life.

Twin daughters Madeline and Elizabeth were born that chilly Fall day. Madeline was born with a heart murmur and Elizabeth was born with Goldenhar Syndrome. I delivered in a hospital that had no Neonatal Intensive Care Unit (NICU), so Maddie and I stay in the hospital where I delivered our twins. Liz was transferred across town to the hospital that had the NICU, at least we were in same town for a few days. 8 days later Liz was transferred to University Hospital-Upstate NY in Syracuse, 90 miles away from our home. Dad became a resident at the local Ronald McDonald house (for the next 108 days) and I stayed at home with Maddie and tried to resume working. Elizabeth had a jaw distraction early on a scary looking device that would help her jaw bone extend further than it currently was. She had her tongue surgically sewed to her lip to give her a better quality of air flow. She was in a drug induced coma for 20 days. It was 20 days that we ran on autopilot. She had to have a feeding tube. Another scary foreign object to contend with in my fragile little angel who struggled almost every day for her first 3 months of her life.

Our friends, family and faith gave us the strength to get through each day. And literally some days it was a struggle to look at the clock. What I did to overcome that feeling was to give myself benchmarks and get through one hour at a time. I was not used to staying home, not having my own money to spend or my own independence. It was a little overwhelming.

When Liz got to come home and be with her twin sister, our lives changed yet again. It felt like we had a revolving door that was open to a number of great therapists. My schedule that was once filled with professional sales appts was now filled with therapists, drs and tv to entertain my darlings. My life was not my own! One word of advice to anyone who has heard this diagnosis, hang in there. Don't be hard on yourself. Don't set your expectations too high. Get through your day one hour or one half hour at a time. It WILL get better. It will be good again. You may be looking at things now and think your lives will ever be normal again. Guess what? It will be. It will be a new kind of normal but it will be normal. You will have great times of happiness. A few of extreme anxiousness. Some of anger or frustration. But document it. The good, the bad and the ugly. Your kids will love to see it later. The pictures, take a million. And print them. It will validate where you came from and how much you have accomplished. You won't be sorry. You may not want to look at the pictures or stories now but trust me your child will at some point. It has done our children well to see how things were and how they have evolved. As they become grow and change these memories will seem like a lifetime away but they have made you all who you are and they will make your stronger. Talk about it. There are groups that can help. FACES put us in touch with some great people and our family is here for you! Sharing our stories and listening to yours. God has been good to me and I am grateful.