The Story of a Life

I am someone who subscribes wholeheartedly to the concept that the human body has the innate and miraculous ability to heal itself. Accordingly, I tend to lean more toward naturopathy, homeopathy, chiropractic and energy medicine rather than the mainstream allopathic model. I do not deny that there are times when I am very grateful for the existence of allopathic medicine but the natural approach is certainly where my heart lies. It is this penchant for the alternative that has shaped and moulded my journey over these past months since Michael’s ADHD diagnosis and which continues to urge me forward into yet undiscovered realms of this bewildering disorder.

I have made considerable headway in my quest for information and answers over the past months. However, what I most want to understand is; how did we get here? For months I have had the niggling feeling that if I can discover the answer to that pressing question then I will be able to discover the path for healing. I have pored over books, websites, blogs, magazine articles and newspaper articles trying to find the answer to my question but it has been stubbornly elusive…until now.

During the past months I have looked ‘outside’ for my answers. I was so sure when we found our brilliant naturopath last May that we had found everything we needed. Massive food intolerances, a changed diet and a myriad of supplements; there was my answer. Then the removal of refined sugar, food colouring and chemical additives were going to be the ticket to success.  A few months later the epiphany of daily exercise was going to be the last piece of the puzzle. All these changes have started the healing process but there has still been an elusive factor in this whole equation that has been hovering around my subconscious like a delicate butterfly not quite ready to land.

As I have been looking outside for my answers, not once did it occur to me that the most significant piece of the puzzle lay deep inside the profound and complex relationship between Michael and me.

Last May I heard of a doctor in Vancouver by the name of Gabor Maté. He has become renowned for his work with addicted adults in the city’s troubled east end and is an expert in ADD (Dr. Maté leaves out the ‘H’ for hyperactivity in the acronym ‘ADHD’ for simplicity’s sake). He has a very personal stake in understanding and treating ADD as he and his three children have all been diagnosed with the disorder. When I discovered Dr. Maté, I searched the list of his publications and came across a book entitled; Scattered Minds: A New Look at the Origins and Healing of Attention Deficit Disorder. The title of the book captured me because it sounded both informative and hopeful; there was action in that title. I searched for it at our local library only to find that I was in a rather long line of people waiting to read Dr. Maté’s work. I put in a reserve request and promptly forgot about it.

A few weeks ago I got a call that the book had come in and was ready for pick-up. We never know the moments of quantum significance at the time in which they are occurring, but picking up that book was the delicate and elusive butterfly about to come in for a landing.

I have been pulled into Dr. Maté’s brilliant narrative as if it is a page-turning suspense novel. His writing is so compelling I can’t put the book down at night and have been using my 4:30am wake ups to read this stunning book instead of my usual morning routine of meditating and writing. I feel as if Dr. Maté has been filling my soul with exactly what I have been hungering for so desperately; information, explanation and hope.

Dr. Maté asserts that ADD is a disorder of impaired brain development during the fetal, infant and toddler stages. He believes that ADD is the direct result of a sensitive infant being raised in a stressful environment by a tense, anxious and/or depressed primary caregiver (usually the mother). He believes it is the invisible stress around the baby which impairs the critical attachment relationship between mother and child and, consequently, normal brain development. He believes that if the brain does not develop normally, and the genetic predisposition is in place, then ADD is an outcome which is not only possible but probable. However, he also asserts that it is never too late for the brain to develop the necessary neural pathways for the healing of ADD.

I must insert a disclaimer here in defence of Dr. Maté; not once in his stunning body of work does he finger-point or blame. He asserts that the frenzied pace of life in our society and the complex relationships that form as a result are nobody’s fault. I am not reading Dr. Maté’s book thinking; ‘oh, so I am to blame for Michael’s ADHD diagnosis.’  Instead, I am reading it thinking; ‘I am beginning to understand how we got here, that we have the power to re-wire Michael’s brain and that there is hope!’

With hope in my heart and fire in my belly I began the somewhat painful process of looking at myself, my marriage, my parenting, my difficult relationship with Michael and our family. I felt that the safest place to start looking was within the genetic predisposition to ADHD that exists in Michael’s heredity. I knew once I visited the place in which I had no control ( the genetics) then I could more comfortably visit the place in which I played a direct role (the relationship between Michael and me).

After the intake appointment with our new naturopath last May, Sonya referred to Michael as ‘the perfect storm’. She explained to me that Michael had every textbook genetic predisposition toward ADHD; inflammation on both sides of the family (severe eczema, celiac disease, allergies and asthma), addictive predisposition on both sides of his lineage (alcoholism and drug addiction) and massive amounts of maternal stress from the day he was conceived. Sonya described to me how many of us have the genetic potential for ADHD, however, not everyone with the genetic predisposition develops this baffling disorder. She told me that “genetics loads the gun and environment pulls the trigger.” The trigger-pulling environment is where Dr. Maté has been pointing and I feel as if I am finally starting to understand exactly how we got here.

I am not nailing myself to the cross when I candidly admit that the healthy development of Michael’s brain has been profoundly affected by considerable and overwhelming maternal stress. My stress is why we are here and it is a long and complex story. But it is a story worth telling because I believe that there are many other mothers and fathers out there with a similar tale to tell and beautiful children they are desperate to heal.

Here is my story;

I grew up in a dreamy, safe and happy family. I had four grandparents who adored me, parents who loved me unconditionally, three siblings who grounded me and a community of friends and neighbours who made my life look like an episode from ‘Leave it to Beaver.’ I was loved and cherished and I had solid bedrock under me as I grew. Even as a young child I knew that what I had was extraordinarily special so, as a result, I took our life and romanticized it to the nth degree. In my mind we were the ‘perfect’ family with no darkness, sadness or skeletons. It was this illusion of ultimate safety and perfection that enabled me to convince myself that nothing bad could ever touch us. Looking back I can see that this is what I wanted and desperately needed to believe; that life was a happy fairy tale and I would grow up in the castle, marry a handsome prince who adored me absolutely, have beautiful children and live happily ever after. If anything ever came close to me that did not align with my version of my ‘perfect’ life I simply dismissed it and buried it deep in the back of my subconscious closet. Without going into chapters of detail I will say that I fought valiantly to preserve my fairy tale at every turn.

I expended great effort to sustain my fairy tale when I met my future husband at the age of 21. Simon was a sexy, dynamic and intelligent troublemaker when I met him in my final year of university. He was everything to which I was not typically attracted but I fell hard and I fell fast. Simon was not someone who would be painted as the namby-pamby prince in my little girl dreams so our relationship was not an easy one; it was very intense but it was never easy. Needless to say, when Max was born into our complex dynamic years later it made for a very difficult first 18 months. We came close to breaking up shortly after Max’s first birthday but managed to work through our most pressing problems. Part of the solution was moving our little family to Boston when Max was just shy of two years old. We had the opportunity to reinvent ourselves as a family unit and it was a simple and happy time just on the outskirts of Harvard Square; for me, the fairy tale life was back on track.

I was thrilled to discover that I was pregnant with our second child early in the summer of 2001. I was deliriously happy about a baby being born into our newfound version of perfection and on a sunny morning in late August, Simon, Max and I tripped happily off to our midwives clinic for a regular 14-week check-up. Our midwife asked me repeatedly to confirm my dates because she could not pick up the heartbeat. I was sent to the hospital for an ultrasound and there was no heartbeat; the baby had died. I was shocked and utterly devastated and early the following morning I underwent a ghastly procedure to remove the fetus. To this day, I am haunted by the loss of that child and the ensuing procedure during which, under considerable sedation, I felt as if the doctors were scraping out my soul and I was powerless to stop them. The aftershock of that experience was so devastating I felt as if the rug had been pulled out from under the very foundation upon which I was resting. The fairy tale was feeling a bit shaky.

Sixteen days later I watched in horror as the Twin Towers of the World Trade Centre fell to the ground. Simon had been in New York the previous day and had caught the last flight out of JFK the night before. Those planes had come from Logan Airport in Boston less than 11 miles from my home. The shock of my miscarriage and the unimaginably tragic events of September 11th shattered my tenuous hold on reality. Suddenly the world was not safe and everywhere I looked there was danger and deep despair. The fairy tale had come to a screeching halt.

We moved back to Canada five months later and I discovered I was pregnant with Michael. My reaction upon discovering I was pregnant was not joy or wonder at our blessing. Instead it was one of dread and fear. All I could think as I lay in bed at night was; ‘oh my God, what if I miscarry?’ During the first trimester our midwives did everything they could to reassure me but I was stressed and terrified of another devastating loss and another frightening hospital procedure.

This is how Michael’s brain started to develop.

I made it through the first trimester and breathed a deep sigh of relief. With wonderful anticipation, Simon and I went off to the 20 week ultrasound only to discover that there was something horribly wrong; Michael had a choroid plexus cyst in his brain which is a marker for a devastating genetic disorder called Trisomy 18. We spent a despairing Canada Day weekend waiting for our appointment with a genetic specialist at our local hospital. We were somewhat reassured at the appointment as the doctor walked us through all 60 images taken during the ultrasound. However, the doctor told us that the only way we would know for sure that the baby was okay was to do an amniocentesis. We were warned of the significant chance of aborting a perfectly healthy baby so we opted to wait and see. Needless to say, I spent the second half of my pregnancy feeling helpless, scared and extraordinarily stressed.

It is under these conditions that the second half of Michael’s fetal brain development occurred.

My first labour with Max had been complicated and after 36 hours of labour and a ‘failure to progress’ (I loathe that term, as if I was the failure!) I had no choice but to undergo a caesarean section. I was determined that it would be different with Michael’s birth and I had a careful birth plan in place with our midwives. I was hopeful that a natural birth would be effortless and I felt optimistic that I would be successful. However, Michael was nine days overdue and it was determined that he was starting to become stressed, so labour was induced. After a night of hard labour and an epidural, Michael’s heart rate was starting to drop during contractions. Disappointed and scared, I was whisked into surgery.

Halfway through the surgery I grabbed Simon by the arm and told him that I was feeling pain, that I was not frozen. Simon told our midwife and suddenly the air in the operating room became permeated with fear. It was a dream-like experience in which I was talking but could not make myself heard; I knew something was wrong but no one would tell me. In the chaos that ensued, an anaesthesiologist was rushed down to administer a spinal block (I was still on an epidural for labour, not a surgical delivery). In the confusion, the surgeon nicked an artery and I started to bleed profusely. I became gravely ill and don’t remember anything much after that except that I was paralyzed with white fear. The stress in the operating room was so thick I felt as if I was choking on it. I was certain there was something dreadfully wrong and devastatingly sure that my baby had died.

This is the stress, fear and uncertainty with which Michael came into the world.

I was in no shape to hold Michael once he had been cleaned up and wrapped in his little blanket. I was assured that he did not have Trisomy 18 and wept with relief. Due to the complications of the delivery Michael needed to be taken to the neonatal nursery for observation. Simon was allowed to carry him to the nursery and never once lost contact with our new baby boy. To this day, Simon and Michael have a very deep bond and Michael will often report that the only time he ever feels safe is with his dad.

I was in excruciating pain when I ‘came around’ from the surgery. I was in no shape to care for my new baby so while Simon was at home caring for Max, my mom leaped into the breach and stayed with me in the hospital for the four days I was in residence. In the haze of large doses of morphine, I can recall that Michael made direct eye contact with anyone who held him. He was the talk of the ward because it is not the norm for a newborn to make eye contact. We thought Michael was clever and gifted with this unusual display but I have since learned that eye contact in a newborn generally indicates a very high level of stress. This is how Michael lived his first few days of life; with a mother who was in excruciating pain and could not hold him except for very painful breastfeeding sessions. I remember him crying nonstop for the four days that we were in the hospital. Now that I look back on it, is it any wonder? Michael was presumably experiencing significant stress overload begun during his fetal development, compounded during his traumatic delivery and worsened even further as a result of the separation from his mother.

Once I recovered from the physical and emotional trauma of Michael’s birth, life calmed down and I enjoyed the next few months of Michael’s life. Max adjusted to being a big brother easily and life felt good; Michael was a happy baby with an easy smile and an adorable nature. When he was nine months old we went out west for a family reunion with Simon’s family. It was a fun trip and the weather was beautiful. I wasn’t feeling very well on the trip and I was having trouble breastfeeding but thought nothing of it until Simon jokingly wondered if I was pregnant. I vehemently denied the possibility but took a pregnancy test the morning after we got home just to be sure. The pregnancy test turned positive within about 3 seconds and I was white with shock. I had just barely recovered from Michael’s birth and here I was facing another pregnancy and birth so hard on the heels of Michael’s. My emotional world turned upside down and so did Michael’s. Suddenly I was sick, tired and less available to my baby who had not even celebrated his first year of life. I was also absolutely terrified of another botched c-section and carried that stress and worry with me throughout my entire pregnancy. The stress, which had abated somewhat from Michael’s earlier development, was back with a vengeance.

Zachary was born by scheduled c-section less than 17 months after Michael’s birth. It was an uneventful birth and I was in hospital for three days. Max came to visit but it was decided that Michael should not. At home, Michael was moved out of his nursery into a beautifully decorated new room to make way for baby Zach. The night we brought Zachary home from the hospital Michael spent a restless and sleepless night. We assumed that it was due to the excitement of the new baby. Never in our wildest imaginings did we think that he would not sleep through the night again for three torturous years (and even to this day Michael has trouble sleeping through the night).

The demands of breastfeeding a newborn, running after an exhausted toddler and keeping up with a five-year-old was beyond exhausting. I was so sleep deprived I would fantasize about medical conditions (like appendicitis) that might land me in the hospital far away from my strenuous reality. This stress and sleep deprivation created a barely liveable day-to-day reality and I was cracking under the strain. Needless to say, I was not emotionally available for Michael and any time I spent with him was strained and stressful. And as his behaviour became increasingly more challenging, the gulf between us widened and his estrangement from me became even more deeply entrenched.

It is six and a half years later and the stress has not lifted. We have lived in a house with considerable financial strain, mild to moderate marital strife, punishing sleep deprivation and the natural stress that comes from living as the only introverted female in a house full of alpha male extroverts. Imagine the inexorable strain for an already stressed and sensitive child. Is it any wonder that Michael has been diagnosed with ADHD? Except for about six months of his infancy, he has been surrounded by and immersed in unrelenting stress. He has been parented by an exhausted and thoroughly overwhelmed mother who has struggled to put one foot in front of the other every moment of every day. He has lived with a mother who has been desperately wondering what happened to her carefully constructed fairy tale and feeling crushing guilt and disappointment in the overwhelming realities of her life. And, as a result, Michael’s brain has not had the opportunity to develop the way it needed to.

So the question that has been plaguing me has finally been answered; now I know how we got here. This could be the end of the story and, quite frankly, until a few weeks ago I assumed it was; due to circumstances beyond my control, Michael is broken and will continue to struggle and suffer through the rest of his life.

Dr. Maté, however, suggests an alternate ending to Michael’s story.

So how do I do it? How do I re-write the ending of the story? How do I heal the damage that has been done? How do I foster an environment in which Michal’s brain can develop the neural pathways required to permanently rouse his sleepy right frontal cortex? According to Dr Maté, the secret lies in a calm, loving and gentle household with strong and devoted relationships at its core. And the most critical relationship in the healing of his brain is the attachment relationship between Michael and me; Michael needs to feel that when he looks for me I will always be there unconditionally with my arms and my heart wide open. That unconditional love is the secret ingredient which will foster the miraculous healing of my beautiful boy.

I opened my narrative by praising the body’s extraordinary ability to heal itself. What I am just coming to understand is that the guiding force behind that ability is love. When I look back over the past months of this incredible journey and take into account the enormous strides Michael has made, I can see that the diet has helped, the supplements have helped and the exercise has helped. But the factor that has put Michael’s healing into high gear is the deep and loving bond of intimacy and shared experience that has developed between Michael and me. I have fallen head over heels in love with my magic child and he knows it. I am learning to look at him through the lens of miraculous possibility. I am learning to pull him into me and hold all that he is in each and every moment. Michael is gently teaching me to love without condition. He is showing me that those little girl dreams are one-dimensional and lacking the vibrancy of life truly lived. And he is teaching me that love is truly the only ingredient we will ever need.

As is my custom, I will close my lengthy narrative in a state of deep gratitude that this miraculous child has come into my life to guide me and shape me as both a person and a mother. My heart swells almost painfully as I go to post this latest stage of our astonishing journey.

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3 Responses to The Story of a Life

  1. Paul says:

    Wow Katie, you absolutely blow my mind. Living in your sphere, but at a distance, nothing of this is new. However, the way you express it with connections and deep truths is so powerful. I am so glad the Mate has been a piece for you and if anyone can utilise his information it is you. You cause me to reflect on my Mom’s pregnancies and each of our paths by your deep deep honesty. What a gift you are for all us fallible humans. I love you very much

  2. Paul says:

    As always, Katie, thank you so much for opening your soul. Your thought’s about love reminded me of something I recently read by Marianne Williamson. She writes, “The power of love is perfect, creative, self-organizing, healthy, self-healing, and abundant. The power of fear is insane, destructive, violent, disease producing, and lacking. It expresses itself as an impostor self, perverting your true nature and making you behave in a way that is opposite of who you truy are. It is spiritually immature to underestimate the power of either of these two forces. Both of them are active, and both of them have thier eyes on you. One wishes you well, and the other wishes you dead.”

    The words are a bit harsh; however, truth isn’t always pretty. Above all else, let us choose love!

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