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Living with a Diagnosis

20th July 2017

Receiving a diagnosis of anything is difficult.  We have to process what is being said to us, make sense of it and then come to terms with it.  There is very little certainty with any diagnosis; there’s probability, but that’s hardly to same thing.

In the last 2 years we’ve heard at least 6 different diagnoses… 3 for Enfys, 2 for Macsen and 1 for Anwen.  Needless to say it’s been tremendously difficult to deal with each of these.  To be honest I don’t believe I have fully accepted them yet.

Acceptance of a diagnosis takes time. 

I don’t recall ever going through a period of denial.  When Enfys was diagnosed with Di George Syndrome (22q) I was relieved.  I do remember crying because I knew there was something ‘wrong’ with her and I wasn’t being a crazy, neurotic mother.  Instead of feeling sad, I started thinking about ways to help her.  I discussed it with the oldest two children, I answered their questions.  18 months on and we’re living the life.  We’re enjoying raising our perfect Rainbow.  She isn’t average, but neither is a Rainbow. 

Knowledge isn’t always power.

Just last week, Dyspraxia was mentioned in regards to Macsen’s speech delay.  After consulting Dr Google, I am now analyzing every movement Macsen makes and trying to figure out if he is clumsy; whether he enjoys imaginative play; and worrying that his temper tantrums are just normal threenager behavior. 

It’s always good to know and understand something, but this can sometimes cause more unnecessary worrying.  Dr Google sometimes gets it wrong with unrelated anecdotal evidence.

Feelings of Grief are normal

This doesn’t often go down too well with people who don’t understand what it’s like to be given a diagnosis of ‘different’.  A person never enters parenthood expecting to be told there is something ‘wrong’ with their child.  I’ve heard a few special needs parents say they felt a sense of grief after a diagnosis.  I can’t say I’ve felt grief as such, but I do wonder what Enfys would have been like if she didn’t have 22q.  Would she be less introverted?  (I don’t know) Would she be walking? (Probably) Would she be bigger? (Maybe)

In some cases, acceptance comes from grieving for the loss of the perceived ‘normal’ child you could have had.  To me, Enfys is ‘normal’, she’s not ‘average’ but she is normal.  She has favourite toys, favourite films, favourite foods.  She loves to have a bath and loves cwtches.  There are foods she doesn’t like; things she isn’t keen on doing.  She doesn’t, however, follow the rule book. 

Looking to the future

A diagnosis is always uncertain regardless of what the actual diagnosis is.  Sometimes looking too far into the future can do more harm than good.

When Enfys was diagnosed I wanted to know what she will be like as an adult.  I wanted to know every detail.  It took me a while to accept that we just don’t know what the future will hold for her.  It took me even longer to realize that, most of the time, we need to take each day as it comes.

Arm yourself with scenarios, by all means, but don’t expect to see them… don’t expect them to be your life.  Enfys, at almost 2, is a totally different child to the one I expected to have.

1 Comment

  • Reply
    Clare
    7th August 2017 at 8:57 pm

    What a lovely article. All kids are so different and I know we all want a “perfect” child, but this happily does not exist. They are normal kids with normal likes, dislikes, fears and joy.. Just enjoy her and take each day as it comes, that is all we can do with any child. 🙂 xx

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