When I found out we were pregnant with a boy, I was over the moon. We had been blessed with a beautiful girl almost two years before but had longed for a boy, as I had had a younger brother who had died at the age of 8 3/4. My brother, Jonathan, had been diagnosed, through post mortem, with Pelizeaus Merzbacher disease (PMD).
Hugo Magnus was born on 9 July 2004 after an easy pregnancy and natural birth. He was slightly blue, very limp and with a noisy stridor, but absolutely gorgeous. ‘Isn’t he beautiful, he looks like Jonathan,’ was what I said to my husband, Ben. Little did I know that the similarities didn’t end there. Our fears were realised in November of that year, confirming that our little man had PMD. We had been through genetic counselling when we first married, but they were unable to provide us with much definitive information as the gene for PMD had not yet been found. Therefore, we had gone ahead and had our Hugo without much thought given to the possibility of lightning striking twice.
Hugo is an adored little brother to Jemima and older brother to Daisy. He is a happy soul who loves books, singing and music, driving in Mummy’s car and, of course, cuddles. He has taught us all so much about compassion, patience and communication. Jemima has proudly explained to complete strangers how her little brother can’t talk, but if you watch his eyes he will tell you what he is saying. He laughs the loudest at ‘Peekaboo’ games and gets very upset when he is left out of family activities, such as cooking and bath time. The mere sound of my car keys is enough to send him off, anxious to be taken on the imminent drive.
Life isn’t easy for our ‘Doo-doo’. He has a very severe scoliosis, which seems always to amaze medical staff. That, with his hypotonia, means we find pain management and comfortable positioning difficult to maintain. Hugo is unable to eat orally; he relies solely on jejunostomy feeds for about 22 hours each day. Weight gain is a real juggling act. At 10 months, Daisy weighed more than her older brother. Hugo is completely dependent on us for all his daily needs. He is unable to move without great effort. He adds a new meaning to the word ‘floppy’. We joke that our superhero name for him is ‘Hypotonia’.
Recurrent chest infections indicative to these children shape our family life between hospital admissions and soldiering on at home. The two girls suffer emotionally when hospital is thrown into the mix. Mum and Dad alternate nights with Hugo. The severity of Hugo’s needs makes his care all too time consuming for nursing staff, so we remain his only care givers. Ben and I jest that we laugh in the face of sleep deprivation – but, seriously, we are tired and we long to catch up on some of our sleep debt.
The family frequents Bear Cottage, in Manly, for respite time away from home. There we can shop, eat ice cream, and go to the beach and even perhaps the zoo as a family of five. We have a small group of special friends who love Hugo, as well as the girls, and have become part of our family. A couple of these friends knew Jonathan, but most are nursing friends who have claimed our little man as their own. Some say they suffer from Hugo withdrawal and need their regular Hugo fix. Others say that since knowing Hugo, they hold their own children that little bit closer. At gatherings, we often watch with amusement while some friends fight for Hugo hugs. He is much loved and enjoys all the attention.
I hope Jemima and Daisy will remember and cherish their time with Hugo, as I do my time with Jonathan. I am so aware of how tough it can be to have a sibling such as Hugo, but it can also be filled with love and laughter.
Ben and I strive to lessen the legacy of loss for the girls. We read books, communicate our fears and experiences, and hope the girls blossom from all this. I believe the gift of these children is to teach those around them wonderful caring skills. It has been said to me that having a sibling such as Jonathan or Hugo nurtures the next generation of care givers. I myself am a nurse and I feel that it is inevitable that my girls will themselves find their niche caring for others. We will endeavour to find out the girls’ carrier status when they are old enough to understand its full impact, and hopefully by doing this give them more choice for their future families.
Our life is about gathering happy memories. We won’t have Hugo for as long as we should. He is an angel just passing through. We cherish every day, good and bad. I know when he is no longer with us we will miss it all and long for anything and everything. Life is precious and, while we have Hugo, it’s about laughing, singing and watching the three kids interact, and just be.