When we were back visiting the Uk, River and I were invited to go and meet with student doctors at the Royal Hampshire County Hospital’s education department. It was a four hour round trip for us, but I’ve wanted to do something like this for so long that I decided that I wouldn’t miss the opportunity and I’m so glad I didn’t. Honestly, since starting ‘I am River’ this is probably the most rewarding experience I have had. I left the meeting feeling so positive about the future, confident about what it is I’m trying to achieve by sharing our lives and encouraged by the fact that change within the medical world regarding Down syndrome is achievable.
I was so nervous! Behind a laptop I can pour my heart out no problem, but public speaking terrifies me. Really terrifies me! It’s even the same with talking on the phone, I wind myself up with nerves even for the simplest phone call, even though as soon as I do it I am completely fine. Well I hadn’t prepared anything for this meeting, so the fact that I was totally blagging it and had no idea what to expect or what was expected of me, made me anxious to say the least.
I needn’t have worried. I was immediately at ease and don’t think I managed to shut up for the whole time I was there, and everything I wanted to say came tumbling out. I’d panicked that I wouldn’t know what to say, or I’d forget to mention something important or that the students just wouldn’t understand what I was trying to put across. But you know what? They got it. I could just tell by the reactions and interactions that they just got it. God it felt good. I met with two separate groups of students and I’m so happy to have met each of them and so thankful that they responded the way they did, I’m sure they are going to make great doctors in the future.
One thing I was very aware of was coming across as angry or disappointed in doctors. We all know of horror diagnosis stories or have had negative interactions with current or past medical staff, but these students are not to blame for that. I had been told prior to the meeting that some past talkers had focused al lot on the negatives and it hadn’t gone down particularly well, I knew I didn’t want to go in that direction. Who wants to be preached to about negative things within their chosen career for an hour?! I wanted to make sure they remembered us for all the right reasons.
So I made it clear from the very beginning that they could feel comfortable asking me anything at all, and I’m sure they did as I genuinely feel that the conversation benefitted us all. We were all uneducated once and I’m very aware of the fact that I only know what I do because my son has Down syndrome. I can’t judge anyone as I was uneducated to once. So we had a real conversation, we spoke about my life with River and our journey with Down syndrome. We spoke about the new NIPT testing and what it means to our children, how it is being used to eradicate our babies instead of as a source of information for families. We spoke about the things families face when they are faced with being told their babies have Down syndrome, the things they need to hear and the things they don’t. We spoke about the best ways they could handle that situation if they ever face it in the future and we spoke about how they can make things easier for future families. I hope I made them realize that however they speak to families during that time, it will stay with those parents for the rest of their lives. They can make their journey easier or they can make it harder, it’s as simple as that. We spoke about what Down syndrome really means for families in modern times and they listened. I just know they listened and it did me the world of good to see it.
And River, how could I forget River?! He of course was brilliant. He was charming, cheeky, mischievous and sweet, and it was obvious the whole room was captured by him. To be fair, it’s hard not to be, he has this way of just making you fall in love with him. I’m so glad that I got to take him with me as I think the fact that people got to interact with him made a huge impact. They got to see for themselves just how amazing he is, and to be honest, just how he is more alike any other child than different. I know I’m his mum, but he really is an extraordinary little boy.
Meeting with these future doctors got me thinking. Unfortunately, there are going to be people practising medicine right now who we are not going to be able to reach, and there is no doubt still many families who are going to have to face a negative experience when being told their child has Down syndrome in the future. This is a horrible fact and I’m so sorry that it’s the way it is when it’s so unnecessary. But there are doctors who have been in their career for 20, 30, 40 years and they are not all going to want to accept that they’ve been going about it wrong. That their beliefs and knowledge are just outdated and very, very wrong. They will not want to face the fact that they may have done a lot of damage and caused a lot of pain to families and children born with a disability, that’s a hard thing for anyone to admit to themselves. There is good news though, and to put it bluntly this good news is that those doctors will not be around forever. Harsh maybe but it’s true. If we can reach the young students who will one day be filling those jobs, then the doctors who have caused families to go through heart breaking ordeals will eventually just be phased out (I am clearly not talking about the many amazing doctors there already are! I’m well aware that there are some incredible ones doing amazing things, we just need more of you!)
I truly believe that through education and showing the people the reality of our lives can make a huge difference. Through honesty, showing the truth about Down syndrome, good and bad, medical and emotional, people’s lives can be changed. With young doctors who are willing to listen and learn like I encountered that day, we can be left with compassionate, understanding, educated, patient led and professional medical staff. How wonderful would that be for our children and the Down syndrome community?
Finally, I genuinely want to thank every student who I got to meet that day, it was a pleasure to meet you and River definitely agrees. I don’t think I can ever explain to you what it means to meet that you opened your minds and understood. Thanks for the questions you asked and thanks for listening and being interested. I wasn’t expecting to take so much away from that afternoon, but I really did and I hope you did to. Who knows, one day if you are in the situation where you have to deliver the news to new parents that their baby has Down syndrome, you may just remember us and how happy we are. You may be able to make their journey easier for them and set them on a different path. You may just change the life of those parents and that child, and they will thank you for it forever. You may just remember River and how much love he has brought to our lives and how positive we are about Down syndrome and what it means for us.
I hope so. I hope you remember my son.