Eeek I did it!! *shouts with a sigh of relief. It’s done. It’s over and I am on the train travelling back to Euston to reunite with the 3 loves of my lives 💙💙💗. Without tears (on my part) with a little wobble (on my part) a whole lot of Facetime and all in the name of love ❤️
Separation is desperately hard for me seen as I have never done it, not in Dylan’s lifetime anyway. But when I was asked to attend SWAN UK’s Bloggers Workshop I knew I had to, no, I wanted to go!
Blogging is my tonic 🍷Blogging is my release 🤔 Blogging is my way of sharing the realisation of my world, Dylan’s Story to all you lovelies who take the time to read it and follow our little life adventure 🤗
Firstly, let me tell you how amazingly well my gorgeous husband coped, one full night of no sleep out of the two *he got off lightly, welcome to my world Mr. M!! He even got to take Scarlett shopping, went for a meal with the kids and as exhausted as he says he is, was elated at well how he managed and so was I. *now I know I should be jumping for joy and re-packing my bags but in fact I won’t be doing it again anytime soon so don’t worry mummy’s on her way home! #missedmyfamtoomuch
SWAN UK; Syndrome Without A Name means a whole lot to me. Having a medically complex child with no diagnosis is like having a cheap handbag. #nolabel. Now, I am not comparing Dylan to a Michael Kors Handbag *my other love ❤️👜 I am simply saying it’s hard sometimes not having a label for your goods! And after being so involved in Undiagnosed Children’s Day (UCD) 2015 knew it was so important to get on board and help raise awareness (& funds) for UCD 2016 (29/04)
And boy did I do it…. Staying in Birmingham for two nights! Travelling by tube and train *all by myself #idontdopublictransport #alone
SWAN UK is a small charity which started as an extension of Genetic Alliance which was established in 2011 with a 5-year grant. Today, SWAN UK has its own brand identity and two prestigious corporate organisations who are in partnership raising money to help this charity whom help hundreds of families. But these alone can’t keep a charity afloat. It’s actually not just money we need. ITS AWARENESS.
SWAN UK provide support, shares information and increases awareness and understanding of undiagnosed genetic syndromes For children like Dylan. Because families like ours find it harder to get the help they are entitled to because they do not have a diagnosis *in brief SWAN is fab and do loads for families like us. But sadly 2016 sees the end of the 5-year grant so this is where they need your help.
Yesterday, 13 like-minded, fabulously gorgeous woman, all who write superbly about their own lives with their SWAN/’s and 3 SWAN representatives sat around in a large meetingroom, technology everywhere, with copious amounts of coffee flowing ☕️, yummy pastries 🍩 and even an afternoon pick me up of Prosecco 🍸to discuss how we can make Undiagnosed Children’s Day 2016 more #outthere *in the words of my daughter!
In my opinion *and please don’t get me wrong, each and every charity is as important as the next to the relevant people but some are just more known and publicised than others and if I could I would give to them all… So, back to my opinion, a children’s cancer charity may find it easier to raise money because there is a lot of awareness and publicity around this sensitive subject. If you were asked you to donate £1 of your hard earned money to help a child with cancer almost everyone who could would. Right?? If someone asked you to donate to #HavenHouse a children’s hospice to help a child with a life-limiting condition you would. Right?? But if I asked you to donate £1 to SWAN UK to help an Undiagnosed child like Dylan. Would you?? There is just not as much awareness and understanding in the general public of the importance of SWAN UK, similar to the lack of support there is for some families within the medical profession *not all may I add.
The stigma of childhood cancer or a children’s hospice would possibly have a bigger impact on the general public’s heartstrings. But the reality is Undiagnosed Children need even more help raising funds and raising awareness as many of them, like Dylan are life-limiting, complex, medically challenged, non verbal, non mobile…. You get me know. Right??? *there is a just giving link, which can be found on SWAN UK’s website but I am not asking you for your money at this stage, just to think about where you give your money too **thats not to say I won’t ever be offering you the link to SWAN UK’s just giving page
Did you know (in a survey) 5 of the top 10 words used to describe experience of parenting an undiagnosed child are…..
- Isolated – no other child is like Dylan
- Frustrated – will he walk? will he talk? Will he ever get a diagnosis? Why us?
- Lonely – hours in hospital waiting rooms! Hours in traffic to and from appointments? What feels like hours waiting for your child in recovery.
- Anxious – will he have a seizure today? Will he be poorly today?
- Stressed – do I need to prove an explanation for this *shouts very loudly!
* Swan mummies and daddies have more unanswered questions than parents of children with a diagnosis and some live day to day unsure of the next
So lots of talking and listening and taking notes was done and whilst I would like to continue raising awareness for Dylan’s Story and his undiagnosed genetic condition, I will be coinciding this with raising awareness for Undiagnosed Children’s Day which takes place on the 29th April.
Dylan’s Story has done a little bit of media but if anyone reading this feels they might know someone in the media albeit news, breakfast shows, radio, Nationals, locals….. I am on a mission, please help by forwarding them Dylan’s Story details after all 2016 marks the year of Dylan becoming the 6-year old baby!!
As my train approaches the station and before my feet hit the streets of London Town, to sum up my weekend away,
- I have, with my humungous suitcase got a train to and from Birmingham
- Shared a hotel room with a friend I’ve only met virtually,
- Met 12 other fabulous ladies,
- Had 2 lovely meals out,
- Sat in an 8 hour conference,
- Talked till I lost my voice,
- Had a little bit of ‘me’ time,
- Had not one but two child free sleeps *feel worse for it I must say
- But to top it off, my 3rd favourite man came top in our poll!! #robbiewilliams
So, before I go on my promote, promote, promote mission I’m gonna get off this train, get myself home and squeeze my babies. Mammas a coming for ya x