I am not what you would call an avid reader. I have had points in my life when I have read more than others: autobiographies, factual books about real life abuse and fiction too. I have also read books written by parents of disabled and autistic children. Recently, completely by chance when browsing online, I came across a book written by the mother of a daughter who has the same diagnosis as my son, James – Wolf Hirschhorn Syndrome. Raising A Rare Girl is written by Heather Lanier.
Heather is a poet, essayist, teacher and speaker. She is an Assistant Professor of Creative Writing at Rowan University, New Jersey, USA. She has written two award winning poetry chapbooks as well as being the recipient of a Vermont Creation Grant and an Ohio Arts Council Individual Excellence Award. Personally, I have only admiration for someone who has achieved all this whilst parenting two children and writing a memoir about parenting and disability.
Raising A Rare Girl starts at the beginning: Heather’s pregnancy and her subconscious desire to create a Superbaby. Throughout the book she gives us some background story about her relationship with her husband, Justin, and also her own childhood and upbringing.
Fiona’s Arrival
Within the first few pages Heather has given birth to her daughter Fiona, or ‘Just a whittle peanut,’ as the midwife described her. We then go on a journey with Heather and her family through the first seven years of Fiona’s life, by which time they are a family of four as sister Petra has joined the fold.
There were many times when I was reading that I resonated with Heathers experiences and there were a lot of similarities between Fiona and James. They were both tiny when born, 4lb 12oz and 4lb 10oz respectively. Both initially scoring well on their Apgar tests which, as Heather describes, was created by Virginia Apgar in 1952 giving the new born baby a score to determine whether they require immediate medical intervention. Both struggled in the coming months (and years) to feed and gain weight. Heather talks of the all-consuming feeding regime, two hourly feeds and expressing in between. One feed session pretty much blending into the next. I remember it well. Inevitably our baby’s genetic status was to determine their size and growth irrespective of how many calories they consumed. I recall too how new born baby clothes did not fit for many months. Again, James and Fiona’s ongoing growth pattern is comparable. At 3 months Fiona weighed just 7lb and James only 6lb 9oz. Smaller than the average new born baby.
Diagnosis
One significant difference is that Fiona was diagnosed at just a few months old whereas James was two and a half years old. Fiona was born 15 years after James and during that time great advances had been made in the genetics field. James was diagnosed in the UK and Fiona in America but inevitably the outcome was the same. Both had some genetic material missing from the short arm of chromosome 4. Hence the diagnosis confirmed as Wolf Hirschhorn Syndrome, otherwise known as 4p- (4p minus). Heather talks very honestly of ‘never having felt so distraught as in the months after Fiona’s diagnosis.’
Following Fiona’s diagnosis Heather and Justin found themselves overwhelmed with regular hospital appointments and therapy sessions. After a particularly stressful hospital appointment to check out Fiona’s kidney function Heather said, ‘Mothering Fiona was turning me into a different kind of woman.’ I laughed at that whilst understanding entirely what she meant. Parenting does, of course, change all of us. Like Heather, I have often found myself in situations where instead of quietly recoiling into the corner which I may have once done, I had to find the confidence to speak out, ask questions and challenge authority. Ultimately, we are primal beings and we will do what is required for the sake of our children.
As I read about Fiona’s first seizure my heart began to race as this too is a moment in James’ life I can recall only too well. I can see it played out before me as if I am watching someone else. I was alone and bathing James when it happened. It was just a few weeks after he had open heart surgery. I can see myself running around with him wrapped in a towel summoning an ambulance and then, as Heather described, I too carried my bundled and unresponsive baby to the ambulance. For both, it was the first of many seizures.
The Future Is Uncertain
Heather talks eloquently about her concerns for Fiona’s future. What would Fiona do as an adult. Would she be an adult. Would she be happy and would her life have meaning. She talks honestly too about the impact on her life. Would she have to give up work. What would their lives look like. These are common questions in the mind of a parent of a significantly disabled child. I had them too. As a parent you go through cycles of anguish, grief, longing and acceptance. That does not mean you do not love your child. It’s a process you go through. It’s normal in the circumstances.
There were moments in Heathers book that moved me to tears but others that made me smile. On Fiona’s first birthday she stuck a candle in a container of carrots because it was Fiona’s favourite food. I remember how I’ve stood candles into ice cream and jelly due to James’ inability to eat anything of more substance. Eventually we progressed to a gateau which finally resembled something like a birthday cake.
I shared Heather’s apprehension at attending their first Wolf Hirschhorn conference and I recently wrote about this having attended our 11th conference just a few weeks ago. I understood when she wrote about the gift of feeling ‘normal’ in a room of other Wolf Hirschhorn families. Heather said ‘the real learning began’ in the times between the speakers when families had time to talk. This is my experience too. This is when you get to chat about the day-to-day stuff with the people with whom you share a bond, it’s strangely comforting.
Shared Experiences
There are many moments Heather talks about in her book that I have shared: going for your amnio with your next pregnancy; the realisation that as baby number two arrives your first born still needs the care of a new born, maybe more; wondering if you will be able to meet both your babies needs. There was a moment Heather describes which instantly brought a picture to my mind that I have of James. Heather was nursing her second daughter, Petra, while Fiona was rolling on the floor attempting to reach a ball. Like James her physical developmental milestones were delayed, but she was determined to reach this orange ball that was out of her grasp. She rolled and sat and rolled and sat and rotated until she had that ball in her grasp and then when she did, she threw it across the room, only to begin the process again. I remember how at 14 months James had only just learnt to sit, still a little precariously. Legs splayed out in front he would balance himself by resting on his ball and if the ball rolled away, he went over too.
I cried when I read about Fiona’s first day at kindergarten. It evoked in me memories of times I have left James. Similarly, first day at nursery, first day at school, first day at respite and more recently when James moved into his own supported accommodation flat. It doesn’t get any easier whatever their age. I understood when Heather questioned how she could leave her child who could not speak her name, how she could let her go, how she could ‘trust that the world would catch her’ she said. Trusting is such a hard thing to do. I felt for Heather when the school principal asked her how she was on that first day as she fought back the tears.
I rejoiced when Fiona’s speech therapist addressed the 100 children at school on that first day. Having first said ‘Good Morning’ with actual words she then went on to ‘sign’ Good Morning but she didn’t stop there. She went further than that in explaining to the children there was a third way to communicate. She introduced the children to Fiona’s communication system as Heather goes on to explain. What the speech therapist did that day was to say that Fiona’s form of communication was as valid as any other. She was demonstrating that Fiona was a valued member of the community.
Motherhood – The Hardest Job of All
Heather describes becoming a mother as ‘an apocalypse of the heart.’ I don’t think there’s a mother out there who doesn’t understand what she means. At times it feels like your heart is ripped apart so badly it physically hurts, and nothing can ever quite prepare you for that. In addition, you have a child with extra needs and medical complications. You are your child’s voice, they will need you and may always need you, they will depend on you like no one else ever will. They are unlikely to ever become totally independent. Motherhood is surely the toughest and yet most gratifying role many of us will experience. That’s not to exclude Dads – it’s equally tough on them too.
Unfortunately, I am no literary genius…. unlike the author of Raising A Rare Girl. I do not possess the ability to articulate my thoughts and feelings in the way Heather does. I wish I could. I admire her for that. But when I read her book I wasn’t thinking of the plaudits Heather so obviously deserves for her writing – I was reading it as one mother reading the story of another mother’s experience, a rare one that we share. It wasn’t always an easy read as it led me to reflect on some difficult times in my life but I also remembered the good times, the things that made me smile and laugh. You have to have humour. Thank you, Heather.
In the process of writing this review I have contacted Heather Lanier. Firstly as a mother whose children share the same rare syndrome, but also to let her know I was reviewing her book. She was happy for me to write about her book and to share this. We have been in touch a couple of times but, unfortunately, the last time we were in contact Heather informed me she and Fiona both had covid. I was able to share some information with Heather about James’ experience with Covid. I hope to be in contact with Heather in the future and will update everyone then. We wish them a speedy and uncomplicated recovery.
