Mending Matthew

By Della Grant

“Mending Matthew” is the story of a child’s first ten years of life, ten years he was not supposed to have. Born with severe Foetal Alcohol Spectrum Disorder, he has suffered major cranio-facial deformities, a defective airway, respiratory problems, cardiac problems, renal issues, and significant brain damage.
It is also my story: of my relationship with this child, as his foster mother, then as his guardian and advocate; my ongoing battle to keep him alive despite the medical odds, and the multiple barriers and failures within the systems meant to support him; all against the background of my own disability.
Matthew’s short life has encompassed more pain, tragedy, triumph and humour than most people experience in a lifetime. As well as multiple major surgeries and hospitalisations, he has achieved many things deemed impossible by the experts.
The story is also a warning to the community as a whole, doctors, other professionals, and particularly pregnant women, of the risks and responsibilities of alcohol consumption during pregnancy: Australia lags well behind other developed countries in its recognition, research, and attitudes towards Foetal Alcohol Spectrum Disorder. In the current debate around the alleged over-diagnosis of ADHD and Autistic Spectrum Disorders, FASD deserves a prominent place.
There is little hope for Matthew, and children like him, until the Australian community accepts responsibility for the challenges associated with their lives.

• Language: English
• Publisher: Della Grant
• Release date: Apr 8, 2012
• ISBN: 9781476093666

Book preview

Mending Matthew

By

Della Grant

Published by Della Grant at Smashwords

Copyright 2012.

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.

Prologue

One of the most depressing things about living in a gritty area of the city, is watching the children. Rather than play, they simply roam across concrete and bitumen. In my inner-city neighbourhood of Sydney, in the late-Eighties, I regularly found hypodermics discarded in the one tiny local playground. In the house on the corner, a man was shot dead by police, as one scene in the ongoing tragedy of racial violence. I once saw a boy, no more than eight years old, being wrestled into a police car. The generalised anger and alienation was palpable in the air around us.

My husband and I decided never to have children and subject them to this terrible world, and he took the appropriate permanent measures to prevent this from happening.

We moved from the city to a rural acreage in Queensland, and suddenly, the air seemed cleaner and brighter. We were surrounded by green space and wildlife.  We decided to foster children, knowing that there was a huge need, especially for people who would take special needs kids. Once we started, we discovered we loved nearly every minute of it; and that we were quite good at it too.

So, buoyed with confidence and optimism, we reversed our decision and our vasectomy so that we could have both biological and foster children in our family. The biological part did not pan out well, although I managed to stay pregnant with quadruplets for about two months. While disappointed, it did not devastate us as it tends to do with other couples that fail at the In-Vitro Fertilisation programme, because we were lucky enough to have children in our lives anyway. Besides, I am a fatalist - it seems to me if we were raising quads, we would not have the two wonderful sons that we have. Plus I would probably be in a rubber room by now.

We have had fourteen children over a period of seventeen years: some for a few days only, some for several years. Some have had disabilities, some were able-bodied; and they ranged in age from six months to seventeen years. What an experience, what a ride! I doubt whether many biological parents have experienced the challenge and diversity that we experienced within our family.

Each of my kids deserves their own story to be told, but I will start with one who is still with us and whose early life encompassed such pain and abandonment that he should not be alive. In my thirty-odd years of working in the disability sector, I have never encountered a child who has beaten such incredible odds.

Nature has heaped cranio-facial deformities, brain damage, medical problems, learning disabilities and behavioural issues onto this one child, as if testing the absolute limits of a human baby. His life, from the first impossible breath, has been one of such struggle that most people cannot even begin to imagine.

The journey that he and I have made so far has been wonderful, frightening, exhausting, exhilarating, painful and even hilarious. I think that he has survived it better than I have. For me, it has been a battle for a child's right to live the best life he can, despite nature, politics and the medical profession. The journey is not yet over.

This kid drives me nuts. He is the most stubborn creature on two legs, he is annoying, egotistical, demanding, defiant .... and through all that, always amazing.

Always Matthew.

Chapter 1: Initiation

Do you still want a baby? Is two too old? the caseworker sounded like she was smiling on the other end of the phone. Was she kidding? It was a done deal before I told my husband, Trevor, and even before we laid eyes on the baby.

After ten years of being foster-carers to a multitude of little damaged lives, we were finally going to have the opportunity, the privilege, of parenting a child who had miraculously escaped abuse at adult hands. Or so we thought. We did not realise then that terrible damage can be done in other ways too.

My husband and I had been together for thirteen years at that time and had decided not to have children of our own. After a change of heart, and six abortive and devastating months on the IVF programme, we gave it up with relief and went home to enjoy our foster-children: fourteen of them over time. We live on a small acreage nearly thirty kilometres from a tiny country town in central Queensland - an ideal place to raise kids and animals.

Trevor had come to Australia from England decades before, with Romany ancestry and upbringing. I am third-generation Australian, a city girl transplanted to the country, and I still suffer from symptoms of transplant-rejection from time to time. I have bipolar disorder, and I still believe my husband is a masochist for wanting to live with me. Our relationship is good, and we are friends and workmates: partners in most things, which is so much more than I ever expected in my life. Such long term relationships are almost unheard of amongst people with my level of disability.

We met in nineteen eighty-nine, while I was running a programme in Sydney for young adults with physical disabilities: I hired him as our bus-driver. He was the best driver we ever had and the clients adored him. One evening I invited him over to dinner to say thank you for some work he had done on my car. Having experienced my cooking, he decided I was on my way to starvation, so he never went home!

Um. … I need to tell you something, I started, nervously. I have a problem…

Yes, I know – you can’t cook! replied Trevor, wrinkling his nose in the direction of my kitchen.

No, not that problem … I’ve had manic-depression since I was a kid, I rushed it out. It’s called Bipolar Disorder now … you know, mood swings, that sort of thing.

Everyone has mood swings, Trevor seemed confused.

Well, it’s a matter of degree really … when I was really depressed, I used to hurt myself … try to kill myself … I trailed off, embarrassed. Trevor looked appalled. It’s okay, I haven’t done anything like that in years, but you need to know … I thrust a brochure into his hand. He scanned it minutely, and I held my breath.

I don’t see that this makes any difference, he announced finally. You are still you, and that’s all that counts.

Sometimes I might not seem like me though, I warned. As long as you know it’s only temporary. He nodded and smiled. Relief flooded me. I dreaded this conversation, with my long history of sabotaging relationships when I was unwell.

I get high sometimes, too, and do really dumb things … say stuff I don’t mean, I added, to be sure he fully understood. I explained about the medication I took, especially the lithium.

I guess life won’t be dull then, he observed, dryly.

We bipolars are never boring! I retorted. And time proved me accurate.

Trevor’s younger brother, Richard, was born with Spina Bifida and Hydrocephalus. In the nineteen-fifties, treatments were not sophisticated enough to keep this little boy alive beyond the age of seven. Sadly, Trevor’s childhood memories are tainted with that terrible loss.

My involvement with disability began when I was fourteen, and I found an after-school job helping a wheelchair-bound woman around her house. This experience, combined with my own personal journey through adolescent-onset mental illness, created within me a passion for social justice.

With both of us having long-term interest and experience in the field of disability, our stated preference when we began to foster was for children with special needs. Then we realised that all foster kids have special needs. The scars were external, internal, or often both, but we never met the myth of the normal foster child. All had been damaged both by the situation which brought them into care, and by the child protection system itself.

At the time of that momentous phone call from the Department, we had been caring for our older boy, Tim, for eight years, and had managed, against the odds, to successfully adopt him after nearly five years of trying. Tim was, and is, severely autistic, intellectually disabled and epileptic. He is also totally non-verbal, and was so terribly abused in his early childhood that I have never seen a more vulnerable human being in my life.

Tim is Indigenous, with his biological mother coming from the Kalkadoon people in Western Queensland. This was the reason we had so much trouble with the adoption: we are so politically correct in this State, that it is apparently preferable for a child to sit in an institution for its whole life than to be fostered, adopted or even just cared for by parents of different racial origins. It took the direct intervention of a prominent politician to achieve adoption.

That portentous voice on the phone - a worker who had known us for the whole ten years, and who had given us tremendous support over time, informed me that the baby had some problems. Nothing was insurmountable, I thought. Vaguely, I heard small jaw, tracheostomy, developmental delay but that did not sound so bad. She also explained that the biological mother was Indigenous – a Koori woman. What the hell, we had done that before, hadn't we? We hurried into the large regional town, ninety kilometres away, to the hospital. I remember my heart pounding so hard that I had trouble breathing as we ascended to the Pediatric ward in the lift, and I thought that if I collapsed, at least I was in the right place!

I will never forget our first sight of him .... a tiny gnome-like creature, with stick arms and legs, and the face of a little old man, but one with the hugest blue eyes that I had ever seen. Looking at him, I realised what short jaw meant exactly - it meant no lower jaw or chin visible whatsoever. Jutting out beneath where the chin should have been was a plastic tube: the tracheostomy.

Just as we were getting used to seeing that alien object protruding from his neck, a nurse brought in what I later came to know as a bolus feed: a tube plugged into the Percutaneous Endoscopic Gastrostomy (PEG)in his stomach, with a large syringe full of what looked like milk on the other end. In fact, it was a special formula - a whole dietary food called Pediasure. The child was unconcerned about this inconvenience, and continued to play and interact with us. Although he could not speak, due, we thought, to the tracheostomy, he was sociable, engaging, and seemingly very bright. Of course, we fell in love instantly.

Subsequently, we were gradually filled in on the details. Matthew had been born with major medical problems and cranio-facial abnormalities, not just a short jaw. He had a bilateral cleft lip, a cleft palate, laryngeal clefts, micrognathia (small jaw), aglossia (no tongue), a malformed epiglottis and airway, heart defects and renal problems. Basically, the lower half of his face was missing.

He had spent the first two years of his life in hospitals, had had several major surgeries, and, prior to the tracheostomy, had regularly stopped breathing. To this day, we still meet other parents at various outpatient clinics who describe being ushered out of the Pediatric Intensive Care Unit while staff resuscitated the baby Matthew, and I go cold at the thought of him not being.

During those two years, Matthew had undergone surgery to repair his cleft lip, the two holes in his heart, to create the gastronomy, and the tracheostomy. He had several other smaller procedures as well.

By the time we met Matthew, he had developed a chronic Pseudamonas infection in his lungs and airway, quite common in people with tracheostomies; and was severely malnourished and underweight at eight kilograms at nearly two and a half years of age. He had spent approximately three months at home with his biological family, which contained nine children altogether. Despite their love for Matthew, they had a severe shortage of resources of every kind. The parents felt unable to cope, and also unable to ask for assistance, so the situation became critical for Matthew.

We know for certain that his biological parents felt guilty and hurt by their decision to relinquish Matthew into care, however they saved his life by doing so. I cannot even imagine what it would be like to have nine children, more than one with special needs, and then to cope with Matthew's care on top. Although we offered contact to the family periodically for the first three years, most of them rejected it due to their own pain and guilt around the situation.

Although we were in a hurry to get Matthew home and out of the institutional environment, it was made very clear to us that we needed to undergo an apprenticeship period first. And just as well. We did not realise it, but caring for this baby was going to be intensive care nursing, not ordinary parenthood.

The nursing staff on the Pediatric ward was rather mixed in their attitudes towards us as we eagerly fronted up each morning for our tuition. We recognized the old negative chestnut attitude about foster-carers generally, we had the ones who obviously doubted our ability to do the job properly, and we had those who adored Matthew so much that they were overly protective of him, which was understandable given his terribly malnourished condition. So we set out to win them all over. We were consistent, persistent, and keen - we did not have to feign these things, we were impatient for Matthew to come home. We also felt that we were building a strong bond with this small person, who was not going to find it easy necessarily to get used to a family instead of an institution.

Oh. So you’re the new foster-carers, said one nurse, clearly unimpressed. Well, I hope you last …

Of course we will! I stated, despite an inner quaking. Could you show me how much of the suction tube to insert into Matty’s airway again, please? I felt like a remedial student, and she sniffed.

Any more than this and you’ll choke ‘im, she responded, demonstrating a length of about six centimetres. I imitated her movements, and she gave a reluctant nod of approval. The suction pump hissed with satisfaction.

I suppose anyone has to be better than that mother of his … the nurse walked out, her misgivings obvious.

When Matthew was finally discharged, this particular nurse handed me a bag of baby-clothes outgrown by her own son, and an envelope of photographs of Matthew at various stages of his difficult babyhood. These nurses all cared so much about Matthew, particular during those tough times for him when he had no one else there. We knew their reservations about us came mostly from their protective instincts.

Our expertise with tubes and pumps increased. We were drilled on preparing his feeds, administering his feeds, flushing the PEG, cleaning the equipment. We learnt about something called dumping the hard way, poor kid. Dumping is the effect of putting the feed through into his tummy too fast. This causes a sort of shock to the bowel, as his stomach does not store food, and, in extreme cases, can affect the heart and cause death. I said to someone, Hey, he looks a bit woozy!