Skeletons, Black Sheep, and Trauma

Every family has it's share of dark secrets, trauma, and black sheep.

Sometimes those traumas and black sheep are highly subjective, dependant on the time and place in which they occur. Medical knowledge, cultural practices, societal expectations, and environment all play a tremendous role on what we as individuals perceive as being shameful or traumatic. Take for example a male growing up with the need to dress as a female. Traditional Samoan culture has embraced this phenomenon and has a place in their culture for these people. A male with the same need growing up in the Southern states of the USA I can not see as being quite so accepted. The repercussion of these differing attitudes to an integral part of the self are manifold.

Some skeletons are open secrets, widely known within the family's adult membership, and discussed, yet still causing some discomfort, regret, and sorrow, and not openly shared outside the family. Such as the atheist within a family that hold a deep faith, or the person who finds faith despite their atheist upbringing.

Trauma can be a deeply personal experience, or experienced as a family group. Trauma resulting from an individual experience or inflicted by an outside influence. Loosing a baby during gestation, is an intensely personal trauma, that in our culture has a tremendous impact on the expectant parents, but seems to have little impact on the wider family and certainly none to the wider community. Loosing a family member to an individual who chooses to fire indiscriminately into a crowd in a movie theatre, is a traumatic experience that every member of the family will feel, and shared by the wider local community, the nation, indeed by the world at large.

My family is no exception when it comes to Skeletons, Black Sheep and Trauma.

Growing up, I experienced my own share of trauma. On a regular and deeply personal basis.
Alcoholism
Drug Abuse
Emotional Neglect
Physical Abuse
Sexual Abuse
I resolved to rise above this, and ensure that when the time came for me to have children, I would make every effort to ensure that these traumas were not perpetrated upon them. Thus far I have been able to uphold this. With every passing year, my boys grow stronger and more confident in and of themselves. With every passing year, I know I can relax a little more, confident that as solid a foundation as possible has been laid, which will in turn enable them to turn away from abusive behaviours.

These skeletons are social diseases. In a sense they are avoidable. With conscientious parenting, I am able to undo many of the negative affects of my childhood within myself.  Making the difficult, yet very necessary decision to cease all contact with my parents, is thwarting the build up of similar negative consequences for my children.

Some traumas are not so easy to evade. When my husband and I were discussing whether to have a family or not, an essential consideration for me, was acknowledging that two of my cousins had an undetermined neurological condition that resulted in pervasive developmental disorders. Initially it was determined that my cousins would likely not live more than 10 years. The younger of the two nearly doubled that, and the elder tripled it. I am grateful that when I visited the Netherlands in my early twenties, I was able to visit them both in their full-time residential care unit. Although undetermined, it was obviously a recessive genetic condition. There were no known genetic markers, no ability to pre-determine whether I too was a carrier, or if Carl would be, because the condition was undetermined. We acknowledged the odds were very slim, however something to be taken into account. We decided that the risks were minimal, and worthwhile. Should we have a baby that exhibited similar symptoms, we would deal with it as best we could. We may have had to move to the Netherlands, where the health care available exceeds that which is available here in New Zealand, however we would deal with it. We had numerous miscarriages. One of my coping messages to myself was that perhaps these babies I lost were afflicted, and my body rejected them as a preventative measure.

Our children are now 6 and 9 years of age. All signs indicate that they are free of this condition.

Some traumas and skeletons are so deeply buried, that no-one knows they are there. No-one suspects the existence. Then some random event brings it to the fore.

Approximately 8 years ago my mother fell off a ladder. Since that time she experienced chronic muscle aches. She began to walk in an odd manner, especially up inclines, or when carrying things. Getting in and out chairs became an intensely laborious process. For some time it was assumed that this was a result of some nerve damage or freak occurrence from the fall. However when it became clear that this was not improving, and in fact becoming more prominent, various tests were undertaken in an effort to determine what was causing this.

Multiple theories were explored and tested for. In mid June I learnt that a diagnosis was finally reached. Mum has late onset Pompe Disease. A rare, recessive genetic degenerative Neuro-Muscular condition. Our entire extended family needs to be tested. My maternal grandparents were unwitting carriers. Mum, and every one of her siblings have a 25% chance of getting this, a 25% chance of being completely free of it, and a 50% chance of being a carrier. Each of their children's probabilities will be determined by which category they fall under. Obviously, with Mum having it, my odds are a little more clear...

I made an appointment with my new GP. Not exactly the type of appointment one wants to make for a first visit with a new GP, but not making an appointment was not a consideration. I recently moved to a new district that falls under the Auckland District Health Board. ADHB having had a rather large number of patients that were not eligible getting public funded treatment, have asked me to prove that i am eligible. While I entirely respect that this is a necessary process, I would rather frankly not have to go through this right now. I just want to get an appointment at the genetics clinic, so I can be tested to see if I am a carrier. There is also a possibility that as this was silent for unknown generations within mum's family... that this is also the case in dad's family. Sure, the odds are pretty low, but not impossible. It is equally possible that if I am carrier, purely from mum, that this may be riding along on the back of Carl's genetics.... again, fairly unlikely, but not impossible.

This has been proven rather dramatically in the last week, by a second Pompe Disease diagnosis within the family.This time Infant onset Pompe Disease.

Just typing it has me in tears.

I've been crying off and on over the last two and half days, since learning this. Within the space of 2 months, two family members have been diagnosed with this previously unknown (to me at any rate) condition.

Over the last two and a half days I have been wishing that my children were not home schooled, simply because their constant presence has meant that I have not had the time and the privacy to be able to fully release my grief.
Grief for my mother.
Grief for my cousin.
Grief for my cousin's spouse.
Grief for my cousin's baby.
Grief for my cousins' siblings.
Grief for my Aunt and Uncle, the grandparents of the baby.
Grief for my Aunts and Uncle, the siblings of my mother.
Grief for all my Family.

I have always been better able to process my thoughts and feelings by talking them out with someone. With my boys ever present, there is no opportunity to discuss this with the one person I most wish to discuss this with, my husband. We have had a couple of opportunities to briefly chat on the subject, when the boys have been occupied with a movie. I think he knows that I am deeply affected by this. He has always had a more objective view on such things... I suppose most men do (?!?). This is the best avenue available to me at present to attempt to express some of the thoughts and feelings I am experiencing.

Thoughts, questions, feelings, ideas, and other things that are foremost on my mind, in no particular order:

??? Am I a carrier, and might I too have adult onset Pompe... it's only a low possibility, but not an impossibility

?!? Am I a carrier, and could Carl be one too.. again, a low possibility, but not an impossibility... and...

?!? What would that mean for the boys... particularly the one whose legs get so tired so quickly when walking... (which is certainly the main reason I am worrying about this as much as I am)

??? How will mum manage on her own, when she will need to be in a wheel chair and on a respirator / life support machine.

?!? What does this mean for my current no-contact relationship with my mother

!?!  I had always planned that when they were older and more sure of themselves, my boys would get to know their maternal Grandmother... Now there is a sudden undetermined time limit (which I realise there always is, it's just been dramatically highlighted by the current situation)... do I have the right to deny the boys the opportunity to know their maternal grandmother?... and...

?!? Am I strong enough in myself to be able to withstand the inevitable emotional and psychological stress in the event of re-establishing contact with my mother.


These thoughts enter my head at unexpected times. I worry, I grieve. All internally. I can not express these immensely scary thoughts and feelings to my boys. I have a responsibility as a parent to ensure my children are exposed to the full spectrum of life at developmentally appropriate times. At 6 and 9, and with so many unknowns, this is not the developmentally appropriate time to expose them to this information.

A little over a year ago, a friend who I have known for a very long time now, confessed to me that, now as an adult, she marvelled  at my ability as a teenager to keep my inner turmoil and trauma to myself, and not share it with her or her younger brother, both several years my junior. She commented that it gave her a valuable insight to the importance of protecting children from horrible things that were completely beyond their power to fully comprehend, or be able to do anything about. Essentially preserving their innocence until such a time as they had the emotional and cognitive abilities to be able to deal with such things. I value that she shared this with me so many years later. I never had the luxury of being protected from knowledge that I was developmentally immature for. Knowing why she sees it as important and valuable, empowers me to not share this with my boys prematurely.

First, I need to be tested. If I am a carrier... my children will also need to be tested.

That will be soon enough to expose them.


August 2nd 2012.
A few days after this post, some of the high emotion had drained, and my ability to think more logically started to re-surface. My understanding of genetics, and particularly recessive genes is at high school science level. I don't believe that changes the reality that as my mother has Adult onset Pompe disease, she has both recessive genes. Therefore she has ONLY pompe disease genes to pass on to her chldren. Therefore my sister and I MUST be carriers, and my children consequently have a 50% chance of being carriers themselves.

I still have not heard from the genetics clinic as to when I have an appointment, however The ADHB have informed me that my elligibility srtatus has been updated. Note they say updated, but not what status it has been updated to. It ought to be Status: Elligible...

Waiting PAtiently is a trait that needs development, I suppose I should be grateful that I am getting another opportunity to refine this?