Tell Me About it Thursday

                                                Labels, Diagnosis and What Next?

I was talking to another mother last week (Hiya Shaz if you are reading!) and we were discussing what it felt like for us when we first got the diagnosis of Wolf-Hirschhorn Syndrome.
Because Ryley wasn't officially diagnosed until he was 2 years old, it was actually a huge relief for us. To finally have a name, to be able to share an identity with others, and to be able to move forward gave us a sense of peace.
Shaz agreed that for them, even though they recieved the diagnosis much much earlier, they also didn't feel devastation, they just wanted to move forwad.
For us, the label didn't change Ryley.
It didn't mean he was WHS.
He was still Ryley, the one we loved and were proud of.
But for us, at least, there was an explanation why he wasn't quite the same as others.
I wrote something when he was about 2 and 1/2 and you can read it here: 100 posts-Glimpses of the past. It remains one of the most emotional pieces of writing I have ever written.

So while the diagnosis itself was the easy part for us. The whole "there is something wrong" thing was not easy at all.
There really is nothing like hearing those words.
You don't want to believe them at first.
You tell yourself that everything is fine. Maybe it was a mistake. And anyway, modern medicine is marvellous.
You cry.
You get angry.
You really don't think this is bloody well fair.
But you go on loving your baby.

Personally, I am not a huge fan of labels. I think it is easy for people to get caught up in labelling someone and then suddenly there becomes an expectation placed on that person, and then you wait for that label to be correct.
Does that make sense?
So in the case of WHS. The literature tells us that most people with WHS don't walk or talk. Now if we had sat back and not bothered trying to encourage Ryley, he wouldn't be walking. He can't talk, but he can communicate pretty well in other ways. Even though we have been told he will never talk (due to damage in his brain caused by stinkin' seizures), we won't give up. We will keep giving him the chance, encouraging him to get that brain of his to do what he wants it to.

Labels can be useful if you want to learn things.
The label of WHS, at the very least, means that we can connect to other families, and can give us some insight into the things to look out for.

I guess the things that affected us pre-diagnois were because of the labels that were being placed on Ryley. I had all these medical professionals telling us what was 'wrong'. He had PHPV, he had hypospadias, he had failure to thrive, the list goes on. These were the things that upset us more than diagnosis of WHS. The focus was on Ryley being globally delayed, and, some of the focus was on me, as a young Mum, who must have done something wrong during the pregnancy, or who wasn't taking good enough care of her son.
So many judgements being made by so many different professionals.
It would have been better to put us in a petri dish and poked and prodded us with some tweezers or something.
I felt to bloody exposed!

So, I guess, some tips for the 'What Next' bit.

Everyone is different. Everyone copes differently. Everyone's experience will be different.
  • Trust your instincts. Your gut feeling is usually right, though it can be proven to be wrong! If you don't want a certain test done, or disagree with something someone says, speak up.
  • Ask questions, get a second, third, fourth opinion until you find someone you can trust.
  • Remember that your baby/child is still that little being that needs you to love and protect them. Enjoy them for who they are. They might not be doing the things they are 'supposed' to be doing, but that is ok. Just keep on giving those opportunities and do the best you can. That is all any parent can do.                                                                                                                                       
  • Have someone with you at this appointment if you can.
  • Surround yourself with people that care and are supportive.
  • Acknowledge those feelings of anger, hurt, frustration, devastation. This is a very stressful time. You will grieve and this is normal (and these feelings re-emerge all the time, and this is also normal).
  • Think about how you want to share the diagnosis. Who you tell, and when, will have a huge impact on how you cope.
  • Talk with others in your situation if you can, and when you are ready,  because there truly is nothing like talking to another person who 'gets it' (although it can be confronting at first).
The What Next bit
This will always depend on who you are as a person. Some people like to jump straight into therapy, others like to take some time to understand and come to terms with things. There is no right or wrong way. Be comfortable with you the choices you make. You know your child better than anyone, and you know your capacity to cope better than anyone.
Don't ever be afraid to seek support from people.

So this ends my first week of TMAT. Feel free to comment and let me know what you think. Would love feedback. How was this process for you?

Next week the theme is "Acceptance of People with Disabilitys" as suggested by Melissa. Great topic idea!
Feel free to make suggestions!!


  1. What a great post! Thanks for sharing. I also read your 100 posts, it was extremely insightful and very well written. We are already struggling with the questions from strangers and haven't decided yet how to answer them. Thanks for your great advice!

  2. Thanks E.
    Hilary-glad you liked the post. I think my 100 posts is my most fave thing I have written. Hope you are all going well xo


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