Undiagnosed Children’s Day Instagram Challenge – Day 2 #My Diary
Last Reviewed 4/04/2017
By swan uk member and blogger, jenny jolly - rainbowdust2.blogspot.co.uk
My diary is a part of me now, without it my brain would just get all confused trying to keep a record of every single meeting, every single appointment.
Before I had children I never bothered about having a diary as I was pretty proud of my amazing memory as I found it easy to remember the occasional appointment … then I had my older two children so one year I was given a diary and thought that it would be great for keeping a note of all school related stuff. The year started off great but by March it was getting forgotten about as all letters from school was pinned onto a noticeboard so it was easier to just glimpse at that each week.
Then Roo came along and we were all of a sudden thrown into a different world where we seemed to have appointments on a regular basis but still I thought my memory was good enough until one day after planning to go out the doorbell goes and I open it to find the Nurse who said her usual hellos and came in the house … we held our meeting, going over certain issues, arranging referrals. During it all I was racking my brain trying to work out of if we did have an appointment arranged! At the end of the meeting she took out her big thick diary and written on today’s page was my name so I knew then that my memory was no longer reliable! Hubby said I was getting old! But I knew it was because my brain was simply too tired to remember as being up nearly every night was bound to take its toll, so I went out the next day and bought a new diary. Since then I get one every year without fail.
Since Roo’s little sister was born and it was discovered she had some issues and there was a question mark over whether she too was a swan I realised how valuable my diary was as the appointments were coming thick and fast.
One month I had 25 appointments during the first three weeks alone … without my diary I would have been lost.
Thankfully as Roo gets older his appointments are a lot less. His sister Faith still has quite a lot at the moment as we are still in the early stages of her journey.
I believe all parents who have children with additional needs must have a diary! It’s essential!
This post was written as part of the bloggers challenge this month which goes alongside the Instagram challenge that I’m taking part for the whole of this month in the lead up to Undiagnosed Children’s Day.
Undiagnosed Children’s Day is a nationwide event where we increase awareness of undiagnosed genetic conditions and raise funds to support SWAN UK (syndromes without a name). SWAN UK is the only dedicated support network available in the UK for families of children with undiagnosed genetic conditions.
It is estimated that around 6,000 disabled children are born every year with an undiagnosed genetic condition. Our Big Ambition is that all families who have a child affected by a syndrome without a name get the support they need, when they need it. We want it recognised that being ‘undiagnosed’ is not always a temporary stage; the genetic cause of some conditions may never be known. We want every child and young adult with a syndrome without a name to receive high-quality coordinated care and support both in hospital and at home.