“I have serious concerns about the development of your daughter’s brain”. The sentence that changed our lives, forever. Just four days before our precious daughter, Maeve, entered the world, we were told she would be born with a severe and life threatening neurological disability. At hours old, our daughter was given the diagnosis of lissencephaly. This meant her brain was smooth; it didn’t develop the ridges required for normal development. We were told that this beautiful and perfect baby lying in an incubator in front of us, was going to suffer and struggle for her entire, short life.
When Maeve was just over a week old, we found out the cause of her lissencephaly was Miller Dieker syndrome, one of the most severe forms of lissencephaly. Children with Miller Dieker syndrome are not expected to live beyond two years old. I struggled enormously with working out how to love a baby who was going to die. How to let my heart feel joy, when it was waiting to be broken into a million pieces. It felt like our world had lost color and happiness, while we went through the motions of caring for a premature, terminally ill newborn.
Maeve came home from NICU right before Christmas. Having her home with us gave us new strength and determination.
We decided to focus on our own version of normal, and celebrate every moment we got to spend with her in our arms. We took Maeve to the beach, on a long road trip to visit family, out for lunches and dinners, and loved her more than we ever thought possible. Maeve started to smile, and become extremely interactive. We were told she may never show any emotion, so this milestone was incredibly special. She smiled with her whole face, and our hearts filled with joy.
When she was a few months old, she started hydrotherapy, and we quickly realized being in the water was one of her favorite things. From then on, we took her swimming often, and those were some of our happiest times.
Knowing that Maeve’s life would be short, we made sure to fill her days with all the things she loved best. She ate ice cream, listened to music, spent time outdoors and had all the light up toys a girl could want.
At six months old, Maeve had her first seizure. For days, she would stop breathing; over and over again. We started to prepare ourselves to say goodbye. It didn’t seem like her little body could cope with the relentless seizures and seeing her suffer was the most painful thing we had ever experienced. Fortunately, with medication, we found some level of seizure control, and she started to slowly improve.
The day after she turned seven months old, we took her home from hospital again. I didn’t realize this at the time, but this was the day she smiled at me for the last time. Epilepsy took my baby’s smile, and that is something I grieve for every day. The next two months were filled with hospital admissions. Maeve battled respiratory infections and seizures constantly. Being in hospital was exhausting and emotionally difficult, but we also spent precious time together as a family of three. Maeve was never short of love and affection. She was held constantly and knew how much she was adored. She was fascinated with the hospital mobile that hung over her bed, and we filled her room with toys and music. Even in hospital, she was always dressed in her best clothes, and the doctors and nurses would come in each morning just to check out her outfit.
The weeks ticked on, and we planned a huge first birthday party for Maeve. We couldn’t believe how lucky we were to be approaching a year with our beautiful daughter. Life wasn’t easy, but we were happy, and we were together. Maeve was having physical therapy and music therapy, and her health had improved a lot since the winter. On her birthday, Maeve went on a swing for the first time, and even slid down the slide, safely into my arms. We had found our routine as ‘special needs parents’ and our life felt pretty close to perfect. Over the first year of Maeve’s life, we had come to realize her diagnosis did not define her. She was our perfect, content, serene, innocent little girl, and there was absolutely nothing we would change about her.
I always said that Maeve was a dream baby. She was never naughty, messy or difficult. We never felt frustrated at her, and she inspired boundless love and devotion. Of course we mourned for the future she wouldn’t have, but she was truly the most perfect girl in the world to us, and every day she was with us we felt overwhelming gratitude at being her parents.
Around the time that Maeve turned one, her health began to decline again. We tried new medications and alternative therapies, invested in specialized respiratory treatments, and researched anything we thought may help.
Seizures took over her little body and caused significant damage to the part of her brain that controlled her breathing. We had an amazing in-home hospital set up, with a lot of medical support, and were fortunate enough to be able to treat Maeve at home the majority of the time. This gave us priceless family time and memories, and even allowed us to take Maeve back to the beach for a Christmas vacation.
It is hard to describe the agony we felt at knowing that Maeve’s days were coming to an end, but our biggest focus was always on her life, and making it as comfortable, happy, and filled with love as possible.
On Valentine’s Day, 2018, Maeve took her final breath in my arms. We miss Maeve with a painful ferocity, and our arms ache with her absence. While Maeve’s physical presence is no longer with us, her life will always be so much bigger than her death. Maeve taught us, her extended family, our friends, and our community about the magic of life. We never took a single moment in her 444 days for granted, and we all learnt to love more freely, intensely and openly. Maeve changed our lives in ways we could never have imagined. When she was diagnosed, I couldn’t imagine how we would care for a baby with a disability, a baby who would need constant medical care and intervention, a baby who would never speak a word or walk a step. Well, as it turns out, all you need is love, and loving Maeve was the easiest thing in the world.
The one piece of advice I wish I could have given to myself and my husband, was that everything would be OK. Yes, it would be hard and painful, and heart wrenching at times, but the love and happiness would far outweigh the challenges. What made it OK was Maeve. Maeve brought joy and heart-bursting love to our lives. She was, and is, our proudest accomplishment. She brought light to our lives when it felt like darkness was all around us. She gave us strength, when we felt weak, and she gave meaning to our days. We would choose Maeve, and the life we had together, over and over and over again.
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