“Your daughter’s brain growth worries me a lot.” Our lives were forever changed by those words. We learnt that our daughter Maeve would have a simple, possibly deadly nervous disability just four days previous to her birth. She was identified with lissencephaly, a disorder in which the brain lacks the normal wrinkles and edges essential for growth, at the age of just a few hours. We were informed that the lovely baby in the incubator in front of us would have to tolerate lack and suffering for the rest of his life.
After a week, we unfolded that Miller Dieker pattern, one of the simplest types, was the cause of Maeve’s lissencephaly. Rarely do children with this condition survive past the age of two. I kicked with how to love a baby whose lifetime would be so passing and how to be happy while preparing for sorrow. As we took care of our early, weak newborn, it seemed as yet the world had vanished its beauty.
We increased new strength from having Maeve with us when she returned from the NICU shortly before Christmas. We made the choice to value each moment and construct our own version of normal. We took her out to eat, on road trips, and to the beach. The doctors warned that she might never reach the landmark of smiling. Her entire face would light up, making us happy.
Maeve began hydrotherapy when she was a few months old, and she soon came to love the water. Some of our best memories were made while swimming together.
We made sure she had everything she enjoyed, including ice cream, music, time spent outside, and all the light-up toys a fresh girly girl could desire, because we knew her life would not last long.
Maeve skilled her first attack at six months. She recurrently stopped breathing for days, and we were ready to say goodbye. The most agonising pain we had ever skilled was witnessing her sorrow. Luckly, medicine was able to reduce the attack, and she started to get better.
Maeve gave me her final smile before long after her seventh month. That invaluable smile was taken by epilepsy, and I sobbed its loss every day. Attack, respiratory infections, and hospital stays filled the ensuing months. However, Maeve was charmed by the hospital mobile above her cot, held all the time, and enclosed by love. Every morning, nurses even came to check on her attire.
We threw a huge party to celebrate her first birthday. She safely slipped down a slide into my arms and took her first swing. Despite the problems, we were content because we were a family.
Maeve was our ideal child. She was never rebellious or frustrating. She sparked endless love. Every day spent with her was a gift, even as we wept the future she would not have.
Her health began to worsen once more around her first birthday. Her breathing was loaded by attacks, but thanks to incredible medical help, we were able to care for her mainly at home while enjoying costly family time and even making a final trip to the beach for Christmas.
Maeve breathed her last breath in my arms on Valentine’s Day of 2018. Even still we miss her so much, her life is still greater than her death. We all got acknowledge from Maeve to value each instant and love more fully. The simplest and most beautiful thing in the world was to love her.
If I could give my former self any advice, it would be this: even though it’s difficult, the joy and love will always beat sorrow. Our extreme, amazing, delightful gift was and always will be Maeve.
