Birthdays to shame the diagnoses’
Updated: Apr 18, 2020
This week we celebrated Lydia’s 3rd birthday.
What a joy it is to watch her grow and celebrate as she had her favourite people around her, gifts to unwrap and toys to play with, all enough to tire her out for an early and full nights sleep. As I watched her play and enjoy that everybody had come together just for her I saw something I already knew to be true.
She is going to do whatever she wants to do.
Just as with my oldest daughter (and her Mum) that gritty, steely and sometimes stubborn determination to do that which they set their mind to is evident. I realised that that is true today and it’s been true for her whole life as her birthday caused me to reminisce of the years gone by.
You see I’ve sat in rooms with doctors who like to emphasise their importance, I’ve sat there while they’ve planned out my daughter’s future and her expectations. They like to call it “diagnosis” or at least part of it, and I’ve sat with dread as they told me the future without the aid of a crystal ball and I was shaken to my very core.
Now I look back on those times and laugh, oh how I over-estimated those doctors and how I under-estimated my determined little warrior.
It’s true that what the doctors had to tell us had some value in helping us to manage certain things and take care of Lydia but when given an inch they take a mile. They crossed the boundary from helpful informant to the bringer of doom and the creator of barriers all the while Lydia was in the other room just waiting for her time to make them look a bit silly – She will do what she wants to do.
The same week we celebrated her birthday we had to renew the blue badge for our van because frustratingly we only ever get 6 months on her blue badge. Usually I go to get it but this time my wife went down to the council office with the forms, now when I go down to do these things its mostly straight forward.
People don’t make comments to me and nobody feels the need to go into conversations and details – maybe I just don’t have a very inviting face.
However, my wife always seems to get more hassle than I do.
More questions are asked, more conversations are started, and more stupid and insensitive comments are made. Anyway, while getting the badge renewed we found out the reason for the 6-month long badge’s – on the application for her first blue badge filled out by one of the community nurses we have it said that she would not live longer than 6 months.
This was news to us, but this was more comical and frustrating than upsetting as we have now had to get 6 of those 6-month badges and the next one won’t have that time limit. Even a week of celebration is not without its frustration as the woman taking our forms insisted on having a number from us on how long Lydia is going to live so that she can administer a suitable blue badge, well….
How long does anybody expect to live?
That lady may not have made it through the afternoon if I was there when she asked these questions of my wife.
As time has gone on we have come to learn to take what is valuable and ignore what is not from the people we have to work and interact with. I’ll tell you of the first time I decided we had to do this – It was in hospital, our closest main hospital in the first few months of Lydia’s life and we hadn’t really left the hospitals with her yet since birth.
She was in PICU on a ventilator and not looking good, we were exhausted, emotional and confused. We were asked to come into a small counselling room outside the ward away from Lydia and here we sat with Lydia’s nurse (A particular nurse who had become very dear to us and who cared greatly for Lydia), the head Neurologist, her leading Neurosurgeon and the leading consultant on the PICU that week (A woman with the compassion of a hungry wolf).
They told us how things were hopeless, how we should stop trying and that they don’t think we should help Lydia anymore.
They gave us all the medical talk and all their expertise without much empathy. I realised – these people may be qualified but they’re unfeeling, and they may seem like giants in this room and we feel insignificant and helpless but that’s not true. The best person to make decisions about my daughter is not the cold qualified professional but the people with the most care and compassion for Lydia and that was us, that was me!
So, when the Neurologist, Neurosurgeon and PICU consultant had finished I said, thank you for telling me the things that you know about, now can you give me a few minutes to tell you what I know about? I took out my bible and read 1 Corinthians 1:27-29 which says:
God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; God chose what is low and despised in the world, even things that are not, to bring to nothing things that are, so that no human being might boast in the presence of God.
All of a sudden, these giants in their own habitat became like children as they were clearly intimidated and unaware of how to respond to scripture, I explained that though they seem strong and wise and though I appreciate the ways in which they can help, they are not in control.
God can use the weak things and the things that seem foolish to shame them and that with respect I thoroughly hoped that Lydia would shame these doctors who offered her no hope to make it past the end of the day (and she has).
From that day on I have asked for people to help in the way that they can and nothing more.
To you who has had a diagnosis or that are crippled with worry for the fortune tellers of doom I hope you take good help but don’t exchange it for joy. Enjoy your children, celebrate their birthdays, they will do what they want to do our job is just to help them to do it, not to worry about anything else.
Fire fly link: https://www.fireflyfriends.com/uk/blog/birthdays-to-shame/
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