In which I talk to 300 doctors and none throw tomatoes

Posted on Nov 15, 2012 | 17 comments

2010 photo of May I used in the speech

Maybe the doctors of the world are really as polite as they seem. Or, maybe today’s speech went well!

For any doctors visiting Mama Lewis for the very first time: welcome! And, erm, don’t read the sections labelled: So-called experts and Dealing with Doctors. Very boring. Snooze-worthy.

In all seriousness, you might start with the Highlights page. It’s a “best of” of the first year of May’s life. Or, watch the video of May using her walker for the first time, this time with sound (There was a wee bit of technical difficulties, where I failed to use a computer correctly. Thankfully, using a computer is not an essential part of my livelihood or anything).

For the rest of you, here is a little taster of the speech:

As doctors, I know you don’t want me to stop working with my daughter. You don’t want me to give up all hope. You want me to stimulate her and attend to her needs and development. But, here is the thing: we patients believe you. Yes. It’s a fact. We have been taught our whole lives that you speak the truth.

So, when one of your colleagues told me: “Your child is essentially blind. There is nothing you can do.” I believed them.

Perhaps, I’m obstinate or in denial, but despite his assessment, I couldn’t give up on May seeing just that little bit better than she was. Now, she attends a clinic at Great Ormond Street where they help her to see within the limits of her abilities.

Sight is no small thing. A little bit better could help May a lot.

But the same week I was told May was blind, another parent heard the exact same thing from the exact same doctor. This is a true story. The parent sees the same SALT I do. The SALT told me she phoned this parent every day, begging her to let her see her child. The mother said, “The doctors told me there is nothing we can do for her.” The SALT could not convince her otherwise.

We believe you.

I know my daughter very well. I’m not in denial about her abilities. I don’t need a reality check. But, a little bit of encouragement goes a long way.

Wish you’d all been there to hear the rest. They were very receptive. I enjoyed myself. Though I did send my husband a text an hour beforehand saying, “vomitous vomitous” – which I’m sure is a real medical affliction.

Job done. Thank you all for your help. Celebratory beer in hand.

17 Comments

  1. Wow go Stacie! You are a good speaker to have, since you already have the blog on May. Were you on a stage or the front of a room speaking? What were some of the responces you got when you were done? Might make another good post what they came back to you with. Did they ask you more questions? Did anyone offer some thing to try or someone to see? What happens now from this group? It is really brave of you to speak to them and let them get a feel for what your life is like. May deserves to get some great positive attention and I hope more of it comes from this exsperience. All our love!

    • It was a large, rectangular room at a conference center. I had a podium – but no stage. I got a couple questions at the end, but they had to hurry on to the next speaker, so not many people were able to ask anything. The speech was more about informing them about how they communicate, rather than them informing me about May. I spoke very little about May and her medical background actually. Though I did show them lots of photos of her!

  2. It is really good! Please post all of it here … I am so inspired by what you do/say here. Thanks!

    • Thanks Surbhi! I probably will – I’m trying to figure out how to upload it because it is really long. About six times longer than my normal posts.

  3. I’m a doctor and I’ve been reading this blog since the guardian article. It’s really helpful to see things from a parent’s perspective. We get so little time to read the notes etc, all we see is the diagnoses in bold, which generally outline what a child *can’t* do. And then with only a few minutes each time it is often difficult to see what progress has been made. Because none (or at least very few of us) have a severely disabled child at home, we don’t think about what sort of things make a huge difference to you. We tend to think about what can be medically fixed and not much about what can’t be. So it is good to have someone make it funny and accessible and easy to read so we know what is going on outside the ten minute slot where our orbits sync.

    • Thank you, Rv! I can’t believe you are still reading from way back in 2009! I feel like I should send you a prize or something :) And I hope I made it clear in the speech that I did sympathize with the restrictions placed upon doctors. They really want to get it right, and most do. I’m not sure the positive experiences always come across as clearly here, on the blog, where I tend to pick up on difficult moments.

  4. LOL at ““vomitous vomitous” ;)

  5. Stacie you did a great job – very articulate. So many of my colleagues commented how much they had thought about your talk and learnt from it. Well done :-)

  6. BRAVO!!! And smiling over here at “vomitous vomitous.”

  7. I would also like to read the whole speech. Would you consider posting it?

    • I will probably post it. I’m just not sure exactly how yet as it is almost 3,000 words… Ideas?

  8. Stacie
    I just wanted to say that I have heard a number of parents talking about their child with disability and their family, but you were the most inspirational speaker and an amazing advocate for your beautiful girl. I loved your comment about helpful advice… and how many pieces you can receive even in a week!I will not add any except the thought that doctors may not have the answer, but being in a loved in a joyful family living life to the full is surely the best childhood for May and any other child.

    You are also so right in saying that we do not know May’s potential but I know that she will continue to amaze and delight you.

    • Thank you, Dr Gill! I’m glad you found it useful. I do remember an audible gasp from the doctors when they saw my list of advice scroll down the screen.

  9. that’s it! I totally didn’t think of the fact I believe them and it is so hard to break 35 years of programming ! I read your post and went to my 3 monthly development review empowered to ‘channel mama lewis’ as my friends would say. Naturally I had a doctor who was considerate, thoughtful and told me I was doing a great job…damn, all that mental preparation for nothing. Typical!

  10. Mama Lewis ROCKS! I’m a friend of Kate (above). We have our own half-brained babies and ‘channelling Mama Lewis’ has become a regular mantra. Sounds like you said, with characteristic brio, what we would have wanted to say. To doctors reading this blog – the best practice I’ve encountered was a consultant who made it clear that, although there was certainty about my son’s starting point in life, they couldn’t possibly know *exactly* what his future held and that what would help him more than anything else was getting lots of love and cuddles. That simple information made it possible for me to get up the next day and give my son all the adoration he deserved. At the other end of the scale was the consultant who took one look at the MRI, said ‘oh dear’ and then proceeded to expound with great academic certainty how the results differed from ‘normal’ birth brain injuries (huh?), how ‘normally’ they might talk about plasticity but in our son’s case there could be no such expectation and so there was nothing to be done. This damning conclusion was delivered whilst gazing at the scans and birth data and flicking through the paperwork without so much as a glance at the beautiful baby grinning, wriggling and gurgling away on my lap. The meeting ended with ‘I hope this explains things. Do you have any questions?’ Well, after being left feeling that someone had ripped out my heart and ended my life, unsurprisingly I didn’t have anything to ask.

    • You two crack me up. Channelling Mama Lewis – hahaha! I can’t wait to tell my mom about this. And, I think some doctors do read this blog, so feel free to share your experience any time!

  11. Apologies to all the newbies who had their comments added manually by me a few days after you submitted them! I didn’t check the site for a couple of days – it wasn’t you! And, now that your first comment was approved, you won’t have any trouble posting immediately in the future.

    Thanks!

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