The five stages of grief or are they the five stages of change? Does it matter?

Just the other day I saw a posting about this open letter on a forum.

Open letter to parents facing a diagnosis of down syndrome

I thought it was very good, as did most people who responded, but this particular comment from J caught my eye.

I thought the letter was good but I so wish people didn't refer to "grieve for the baby you thought you were going to have". To me you grieve when someone dies and I never felt my baby died. I certainly felt fear and I went through a re-adjustment process and it was a tough road with lots of tears and fears but it was much more about getting my head around this new life we would now lead (Holland instead of Italy Welcome To Holland by Emily Perl Kingsley) and not about grief or death.

These responses from S and A got me thinking as I have experienced both being told my son had Down’s Syndrome and then his loss a few months later .

S said - You make a really good point, so I looked up the definition of grief online. As I thought, although it's commonly associated with death, it's not exclusive to it. The definition is "keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.".


And the five stages of grief, according to the Kubler-Ross model on Wikipedia, are:


Denial - "This can't be happening." (Maybe they got the diagnosis wrong)
Anger - "Why me? Who is to blame?" (Did I do something that caused this? What caused it? What's to blame?)
Bargaining - "Just let me live to see my children graduate" (Just let me child not look *too* like the others / so long as my child's not *too* delayed)
Depression - "What's the point?" (My child isn't going to achieve very much anyway, so what's the point of fighting everything?)
Acceptance - "It's going to be okay." (My child brings so much joy, he is happy and beautiful, and, besides, academic success doesn't guarantee happiness, so it's all okay.)

A said- The 5 stage of grief are equally used as the 5 stages of change


The change ones go:-


Denial - "I'm sure I parked my car here"
Anger - "Oh **** some **** nicked it"
Bargaining - "If I just go away and do xyz, when I come back it'll be there"
Depression - "Oh **** it really has gone"
Acceptance - "I guess I'd better call the insurers"


The model can be applied to all sorts of behaviours and not just grief and it's a very useful one to help new parents understand what's happening to their feelings and emotions.

These got me thinking about whether or not I went through the same kind of feelings after being told that Daniel had Down’s Syndrome and after losing him and actually I did. The thoughts that went with each were different of course, but the underlying stages were the same.

Down's Syndrome diagnosis

Upon getting the diagnosis I definitely went into denial, immediately thinking they must be wrong. Back then I knew little about Down’s Syndrome other than people with it looked different and were born to older mothers (I said I knew little), so my reasoning was as it was my 29th Birthday, I was way too young ergo it must be a mistake.

Then I pretty quickly realised that although we needed the blood test results to prove it, they were unlikely to have said anything unless they were sure, so it must be true in which case what had I done to cause it? I remembered having a couple of glasses of wine at Christmas before I knew I was pregnant and taking some Paracetamol for a headache – could that be it? But that seemed a pretty extreme result for such small actions, especially when I knew mums who had smoked and drunk a lot more than that throughout their pregnancies and had perfectly healthy babies. That left me with some kind of payback or divine retribution for past misdemeanours, but I was fairly convinced that if I’d done something bad enough to warrant such a severe punishment, I would at least be able to remember it.

I think I got to the bargaining stage fairly quickly as we got the diagnosis of his heart and bowel problems at four days and then it didn’t matter what was wrong with him as long as they could do something about those so that he would live. He came through his colostomy surgery and was transferred back to our local hospital to grow before they could do his heart surgery and the bargaining changed to a waiting game. Depression followed pretty quickly on from that as we fretted daily about his lack of weight gain and it began to look as if he would probably be in hospital for the first year of his life, but then the decision was taken to do a temporary heart op.

I remember being terrified that he wouldn’t come out of theatre, so when he did I finally began to believe that everything was going to be ok – acceptance. Little did I know that just a few weeks later I would be going through the whole process again.

Losing Daniel

This time the denial came when we arrived at the hospital after a call just after midnight. We knew that it was bad for them to have called us because so many times we had been told “we nearly called you but then he picked up”. But even as we drove through the early morning fog, me sat in the passenger seat with tears streaming down my face it never crossed my mind that by the time we got to the hospital he would be gone. I couldn’t comprehend what we were being told, we couldn’t possibly have been through all that we had in those 14 weeks for it to end like that. Even when I saw him and held him, it didn’t seem real and I just couldn’t get my head around it.

Next came the anger, although not anger as such but a need to understand what had happened, how just when everything had seemed to have turned a corner and he was finally gaining weight and getting onto lower oxygen levels that it could all change so quickly and dramatically. We even agreed to a post mortem to get answers and I was so frustrated when it didn’t prove anything conclusive, all they could offer me were suppositions of what may have occurred. I wanted facts!

I don’t really recall much in the way of bargaining, there didn’t seem much left to bargain with to be honest. This terrible unthinkable thing had happened, my son had been taken from me and I just wanted be given some form of understanding of why my family and I had had to go through all the heartache only to lose him at the end. It all seemed so very, very unfair.

Then came the depression, it was bad and I think the only thing that got me through was knowing that our eldest who was still only 18 months needed me. He was still a baby, his world had been turned completely upside down for the past 3 months and he could not manage without me, so I had to go through the motions if only for him. I have to confess that as far as I was concerned my husband just didn’t feature at that time, we dealt with our loss in our own different ways and at different time. It was only when we realised that that was what was happening and were able to accept that that was a normal process, that it didn’t reflect either of us feeling or caring any less than the other, that we were able to share our grief together.

And finally the acceptance that we couldn’t change anything, the worst imaginable thing had happened, it couldn’t get any worse and we had no option but to move forward with our lives.

It was hard and it took a long time, in fact sometimes I still think I go back through the depression and acceptance stages occasionally, usually around Daniel’s birthday and anniversary. For a long time I felt guilty that I didn’t bond immediately with him after birth like I did with his big brother, I thought it was because of the Down’s Syndrome, but eventually after the birth of number three I accepted the truth. Partly it was because the birth of your first is different because you don’t know what to expect, but mainly because my first was easy and straightforward whereas Daniel was face up which made it more painful.

Then I had a retained placenta, so instead of lovely cuddles and natural bonding, he was given to his dad and all focus was on me. I ended up in theatre and by the time I came round, he was in Special Care. Before I got to see him again we had been given the diagnosis, so when I really got to hold him properly for the first time, it was a surreal situation with alarms going off everywhere and me in a wheelchair with a drip in my arm. Hardly the best scenario.

Strange how emotions can playa round with your mind and make someone who is normally quite logical think the most illogical thoughts. I mean in moments of depression and sadness in the past, I have wondered if we lost Daniel because I didn’t love him enough, didn’t accept him and for one fleeting moment actually thought about leaving him in the hospital and going home to my ‘perfect family’ without him. Yet for years on his birthday or anniversary I have written poems about my feelings and surrounded myself in constant reminders of him by becoming involved in the Down’s Syndrome world, which clearly is not the most logical thing to do in those circumstances.

So yes, finally I have acceptance. Acceptance that my reactions and feelings at diagnosis were ‘normal’; that we might have made different choices had we known how things would pan out, but that we did what we thought was best for both our children at the time. And most importantly that I did love my little boy with all my heart, I was just too scared to acknowledge it in the beginning because underneath I was terrified of losing him.

And finally acceptance that he gave me the greatest gift that anyone could give me, the passion and desire to try and use my experience to help other families and perhaps that was the reason for it all.