Welcome to Our House - The Analogy ©

Having a baby is special. For some, it’s a lifelong dream, for others, a wonderful surprise. Either way, many of us have thought about taking this journey and whether it’s planned or a pleasant surprise, we all have preconceived ideas about what our child will look and be like. But what if it isn’t what we planned or expected? This is a short story I have written for parents who have or are expecting an exceptionally special child.

Welcome to our House – An analogy

After many months of dreaming, you finally decide it’s time. You are going to build that perfect house of your dreams. You have saved and saved, and now it’s time to put your plan into action. You find a wonderful, perfect piece of land in the city. It’s exactly what you are looking for – because it’s the plan that everyone talks about. You envision the all brick house sitting on luscious green grass, surrounded by a white picket fence. Inside is a marble foyer leading into a family room with beautiful oak hardwood floors. Granite lines the kitchen counter tops and there is an island sink in the middle. Upstairs has four perfect bedrooms and the master bedroom has an ensuite bathroom and an enormous walk-in closet, of course. It’s truly a dream come true, and it’s only a matter of time. You purchase the land and think to yourself, in nine short months, you will have it all.

But suddenly your agent calls to tell you, the land is not properly zoned, and the city has not approved it for building your perfect home. They have instead, given you land in the country, where an old country home sits. You are absolutely devastated, your dreams vanishing right before your eyes. You know you can’t back out now, you need a place to live, and despite it not being what you wanted, you know that somehow you will manage and that you can continue on.

You tell everyone what has happened, and everyone is disappointed, some even offering their condolences. You know that everyone else has a nice city home, and that was what you had planned, but you have to come to terms with the fact that you must learn to live in the country.

You go to see the property every month until closing and something funny happens. You start to fall in love with the place. The air is fresh, it’s peaceful and serene. There’s a pond on the land, and the house, though not a new all brick home, is quaint, and has lots of hidden potential. You soon realize it’s not a awful place, it’s just a different place. It’s slower paced than the city, less noisy and flamboyant, but it’s beautiful none the less. And in the process, you soon realize you may even get to meet some new and wonderful neighbours.

Its closing day and you suddenly find yourself full of anticipation, but you are still a little worried. After all, it isn’t what you had originally hoped for, and the house may need some repairs. But you are determined to accept it, and tackle everything one step at a time. You open the front door, and suddenly you are thrilled with what you see. The house is lovely, and has lots of character. The rooms are smaller but it’s decorated with beautiful attention and detail. The kitchen has marble instead of granite, and the bathroom has a soaker tub instead of a Jacuzzi. There isn’t a walk-in closet in sight, but the rooms all come with an indescribable view. Somehow, you just know that it was always meant to be and that this is now home.

This is my analogy of what it will be like for people who discover that they will be caring for a baby with Down syndrome. For us, it is not a terrible place to be, it is a journey full of surprises, milestones and discovery like any other child. And as the story suggests, sometimes it’s only a matter of ‘point of view’, and surprisingly, once you have been there, you don’t want to be anywhere else. The journey, like all others doesn’t come without some bumps in the road, but once you find your way, it’s all about the place you discovered, in most cases - quite by random chance
Author: Sandi Graham-McWade, Copyright
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Sunday, October 10, 2010

My Journal - Week 60 (10Oct10)

What do I think?  What do you think?  It's all about acceptance....

I think for the first time in a long time I realized I needed to write constructively as opposed to happily.  This at times can be hard for me because in all honestly, I am normally an overly happy person.  Sometimes being "overly happy" gets me labled by others as a person who tries too hard, other times people are intimidated by it and don't believe I am genuine.  Either way, hand in hand with being "Overly Happy" comes "Overly Emotional".  It's such a weird mix because being a very happy person shouldn't mean that I am exclusively wrapped up being too emotional.  With this in my personal life it is hugely contradictory to my professional life.  Being a police officer is often regarded as being tough, hard and or strong.  To me though it simply means, having the ability to turn on and off emotion, think deeply, reflect and refrain from allowing things that would otherwise compromise or destroy a person in that position.  The conflict for me is I don't often "refrain" from feeling.  In my personal life I find it hard to use that ability to seperate myself sometimes.  I seem to forget to apply the strategies learned to protect myself emotionally and as a result I might ignore the many things that I should know not to take personally.  Easy to do in a uniform.  Not always easy to do without one.  I would like to think at the end of the day being a creature of feelings who tends to bruise easily makes me a better product all around.  I can say; that description above is just a result of my "genetic" make up.

Why all this?

I wanted to write about why I advocate but  I wanted also to write about the truth of the matter and why I seem to be so different.  Perhaps it might help someone, maybe it wont - but it's there regardless.

Only moments ago I read some comments (as I do daily) from one of my support groups.  I read about how one mother struggles with coming to terms with her new "popularity" in advocacy (she never asked to be in her position and doesn't know how to do it but has decided that she must come to terms with it.)  She has over 7000 blog followers.  Then in another completely different message, a different mother writes how she can't seem to come to terms with the acceptance of her son's Ds despite his being 4 months old.  In reading those messages I then notice there are the people who answer or comment.  They are people who support mostly they are ones who have been through the hurdles, some who have come to terms with a diagnosis and then some who still struggle daily who can relate.

Some people might find this odd but my acceptance of Hunter's diagnosis challenges me every day in a different way - knowing that I hardly had acceptance issues with Down syndrome after we had learned about our son's diagnosis.  I am sure people might wonder why it challenges me to know that I accepted his diagnosis, the thought might not make much sense.  Isn't that what every person in my past position wants?  To be okay with acceptance?  Of course it is - but it isn't that I am not happy with my acceptance, I am sometimes puzzled by it.  I know I can explain it all away by saying there are just some out there that reach that point quicker and easier, others instead explain it because I am special or heroic.  To me, it's neither.  I had a chance to look at the bigger picture and I was okay with the reality.  A part of my personality allows me to see things in black and white when I need to, and other times it allows me to see the grey.  That is an ability that is useful to me.  It's that ability that pushes me and makes me want to dig deeper to figure out how I can possibly help those who aren't there yet to reach that point of acceptance.  The reality is, I know I can't make anyone accept anything, it must be a personal journey.  But hopefully I can learn new ways to help them get there with acceptance.  To me that is a huge part of being a support system which often comes along with advocacy.

My friend Jenn (who I now no longer just refer to as Hunter's EI) had told me a year ago that even though there were families out there who had older kids with Ds, not all had yet accepted the diagnosis.  There were many who still struggle with it and that there are all kinds of levels of acceptance.  I knew this but it was the extent that I was surprised by.  I somehow believed that people who "fell" into this role (and not by choice obviously if not adopting) - of being a parent of a child with a label of some sort (for lack of a more completely accurate description) all come to accept the circumstance and subsequently their child and further their own personal role.  After being told this I realized there were not just two groups that people could fall into - Acceptance vs. Non-acceptance.  My discovery then became that there were:  Those who accept a diagnosis either immediately or nearly immediately (less common), those who find there way with acceptance after some months (more common), those who take years to accept (rarer) and those who never ever truly accept (an unknown number).  I concluded (in the case of Ds) that it is obviously easier to fall into the shorter length categories if you "choose" by either adoption or Amniocentesis to have a child with Ds.  This is simply because at some point you "want" to have a child knowing she or he is coming with Ds.  This may not necessarily be how the choice started but at some stage you ultimately make that choice.  The later two categories in dealing with lengthy term acceptances seem to happen when it is an unknown surprise.  Humans are not generally good with surprise, change or the unknown.  Especially when it's a perceived negative surprise, change or unknown situation.

I think if there were a way to learn "acceptance" by reading a manual or taking a constructive course, perhaps many more people would fall into the easily/immediate acceptance group.   The truth of the matter is, that kind of thought is ridiculous.  There is a reason why the majority of people take time to accept a diagnosis.  There is a process (just like everything in life) regarding acceptance.  If anyone has dabbled in psychology (my own experience is limited to my university course Psych 101) they would say it's all easily explained away by this concise 5 stage model known commonly as "The five stages of Grief" or more scientifically known as the Kübler-Ross model.  The stages are:
  1. Denial - This can't be happening, not me.
  2. Anger - Why me?  It's not fair....
  3. Bargaining - I'll do anything if.... Just let me do this and....
  4. Depression - I'm so sad.... What's the point....
  5. Acceptance - It's going to be okay.  I can deal with this.  Everything will be alright.
The thing is, there is no time limit on any of these stages and sometimes there are no defined orders of how people arrive at the stages.  Ultimately though, often it is said that in order to achieve true acceptance, one must have experienced all (or nearly all) of them to some degree.  Kuber-Ross is said to have mentioned that some people may not deal with all but have had to deal with at least two.  The model isn't just for death (which is what this model tends often to be applied to) but all aspects of life.  Life loss, work loss, chronic or terminal illness, disease, tragedies and disasters.  The more important part of my posting this is because the stages, while popular and good to know, are normal.  This is why it is so important that people who are going through grief with a diagnosis need to know it's okay.  It's also okay to get stuck in a stage.  It's part of life.

When I look at this model, I know I felt and dealt with every stage except bargaining.  Albeit that my dealings were short and quick (literally most of them in a few hours and one stage revisited over time) they were there.  The denial came in a few different stages.  When the phone call came, I honestly believed my geneticists had the wrong number.  Then I believed or hoped that the report was incorrect.  I revisited the denial in a way when I started looking to learn if Amniocenteses were 100% accurate or seeking out people to learn if an amniocenteses could possibly wrong.  Anger was definitely without a doubt was where I spent my largest portion of time, despite it being brief.  I wanted answers and no one could give them to me.  In my head - there had to be a reason, it couldn't simply be random... I never really believed in co-incidences.  So, being fuelled with "there must be an answer" I spent so much time researching how Down sydnrome could occur as opposed to what Down syndrome was all about.  (That came later)  I have to say, in researching that way, it inadvertently gave me something I never realized I would take away from doing so, knowledge and a different perspective on Ds.  I got to learn the medical side of Down syndrome, the genetic side of Down syndrome but not the face of Down syndrome.  For me, at this point being "black and white" gave me a much different perspective of what Down syndrome was all about.  Since I was angry it was easier to understand it medically as opposed to emotionally and possibly as a result I was able to deal with my emotions since I had such an abundant amount of medical information as opposed to emotional information.  I don't think many mom's who find themselves researching do so the way I did.  I think the majority of people out there research with emotion, which leads them to blogs or personal stories.  No one way of researching is better then the other, and there isn't a right or wrong way to learn.  I just realized I saw a different side to Ds then many do or did.  In part I got the cold reality of medical facts.  Definitely no personal positives with that kind of research though.  Maybe in that way I was able to expect the worst knowing that hoping for the best was coming.  After all the research, or in between researching I felt "Depression" but not a true depression.  I was sad, but I never wondered "what was the point".  Somewhere I knew that there had to have been a reason, and with reason there comes a purpose.  Since I never believe things are just cooincidential,

I had to face the fact that there was only one way for me after that.  Acceptance.  I never talked myself into it, I actually concluded and believed it.  I believe people get "stuck" in stages because they talk themselves into a stage or out of one.  Maybe it's a matter of someone else trying to talk them out of one before they are ready.  The wish I have had since this advocacy begun was that if someone had the choice to know about their child having Ds that they took the time to learn and know what it was really all about.  I wish they could go back to basics and experience the value in seeing the positives.  People who advocate can only say so much before others think they are trying to convince them of something rather then explain and educate about it.  If it were only a matter of saying if you saw it (the situation) for yourself, you wouldn't need to be told.  A simple truth but only an idealistic view in that if it were true we'd never need to support or advocate.


3 comments:

  1. I think this is a great article (http://www.pediatricservices.com/prof/prof-15.htm) that describes how the grieving process isn't made up of stages and they don't go in order always. Here is an excerpt:

    "Grieving is an unlearned, spontaneous, and self-sufficient process. It consists of states of feeling that provide the opportunity for self-examination, leading to both internal and external change. The grieving states that facilitate separation from a lost dream are as follows: denial, anxiety, fear, guilt, depression, and anger. The word "states" is used, instead of "stages," to emphasize grieving is not a step-by-step process that evolves through discrete stages. This depletion of what a parent goes through is a presentation of theory, not irrefutable fact. It is meant to help people find their own ways of dealing with the unspeakable. I look at it as a map, not a recipe. A recipe tells people what to do if they desire a particular result. A map, on the other hand, is one person's partial impression of reality that can be used by another lo help them get to where they wish to go.

    When theories of grieving are used as a recipe to produce acceptance, two false premises are inflicted on parents. The premise that grieving should move through a specific order is flatly inaccurate. A consistent pattern is not evident in people dealing with loss! Worse. when people believe that they are supposed to grieve in a certain way. they often end up thinking they are doing it wrong. Secondly, the concept of acceptance is totally unfounded. In almost twenty years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgment. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it. Any use of grieving theory as a recipe is strongly discouraged."

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  2. I completely agree with this statement! Thank you "Sweet Pea's Mommy". I loved this and this is probably what I was more accurately trying to say. I hardly believed that the Kubler-Ross model was effective in explaining stages - as it does imply that you must overcome one before moving to the next - and yet in the model her work clearly states (to cover that query) that it doesn't always operate that way. So true. I think this is very important for me - this website you have given to help me support others when talking about "states". It is a word that accurately describes a moment of being - rather then specifying that one must go from moment to moment in a preset order. It is not about the amount of time being there or whether we make it out of on area AND move or make it to the next.

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  3. I now also realize that it is much easier and better for me NOT to use the word acceptance so much (as the term implies different things for different people - it's open to interpretation) I hope that my post didn't make anyone think that I believe that people are supposed to grieve in a certain way - in actuality it was supposed to represent that I believe that people don't all grieve in the same way.
    In looking for an appropriate word to use, I took the term acceptance from the actual posts in the other support boards and I continued to use it. I however believe the appropriate word is acknowledgement as you said (and maybe for me like the others who had used the word many times in the past) it had become something that we are used to saying - a catch all or something we were expected to arrive at. I too have had many losses and I think at the end of the day the term acceptance or acknowledgement might have different meanings for different people just as there are different levels in each.
    I do agree with your comment though, believing grieving SHOULD follow a theory or recipe OUGHT to be strongly discouraged. I don't think anyone should or in actuality does follow anything. I do believe that people naturally feel these things and that might be why the "model" was created, albeit sometimes inaccurate. People are individuals and that means that we feel things individualistically. To lump us all together or allow others to think that we all feel things in a certain way or in preset manner or "stage" would change the definition of being individuals!

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