It was only a night in a hotel room but a little miracle to us…


So what’s the big deal? Lots of families check into a hotel for the night and all stay in the same room….

Well for our gorgeous little family that just hasn’t been a possibility

  • both Angel and soldier wake to a crisp bag opening so doors, bathrooms etc that you hear in a hotel is like an alarm clock to them – ping! Wide awake 😟
  • Angel takes hours to settle at night and there is no guarantee she will stay asleep
  • there are nights Angel is a hurricane and up most of the night..
  • we’ve always needed our own kitchen as Soldier finds busy restaurants too hard and gets really upset and tries to leave
  • I could go on…so we always stay in apartments or resorts with apartments

We are just back from having been asked along to a very special celebration and we though it’s 1 night, let’s be brave and stay in the hotel of the party.  Half of me thought it was a stupid idea we would regret, the other half wanted to give it a try coz you just never know do you, and it’s only one night if it’s a disaster!

So often your kids surprise you, what a great adventure all sleeping together. So we bunked up, 2 double beds, Soldier and daddy in one, Mummy and Angel in the other. Late to bed after a hectic evening and within half an hour we were all asleep, a few ‘what’s that noise?’ From Angel and even though they both woke during the night they were happy to go back to sleep 😄

Angel told us she wanted to stay in the hotel not come home and Soldier cried when he had to go to sleep himself tonight 😴 Our little adventure paid off… I doubt we could ever do more than one or two nights but it’s great to know we can at least do that now after nearly 9 years.

Lesson to me, keep on trying, it will come good!


It’s been a year….



Since I last blogged….

I’ve taken to the iPad again tonight as it has been a week of real highs and lows. When you walk the path we walk alongside Angel and Soldier it’s anything but ‘the norm’ and you see the absolute best and worst in people and situations.

This week we have experienced really wonderful kindness and giving for kids like Angel and Soldier when our local taxi drivers took 100 kids including Angel and Soldier to the seaside. These cabbies give up their day (and many the day before to decorate their taxis) as do police outriders to escort the parade to the seaside. The councils close the street route and the public take to the streets to be soaked by water guns and water bombs as the kids have a day money can’t buy. Parents and carers can relax and be amongst families just like us, no one turns a hair at meltdowns, nappies on older kids, behavioural traits, you name it… It is normal to us… And the cabbies treat your kids like the special little angels they are… It’s exhausting as they pack so much into one day but truly magical.

This week has also broken my heart watching a fellow SWAN family facing into an impossible decision for their brave boy. This SWAN mummy is absolutely amazing, she writes beautifully in her blog. https://areyoukiddingney.wordpress.com/2016/06/18/quiet-storms/.
She is fun to be around, stunningly elegant, has a successful career, most of all she is filled with love for her gorgeous family.

We have talked a few times of how her son and Soldier look really alike and have similar mannerisms. We’ve watched each other’s boys grow up in our SWAN network. I can’t begin to imagine how surreal and emotional her current journey is…. I think how I would feel if it was Soldier but it’s just not possible to imagine…

Life is precious, enjoy every moment you have with those you love and give yourself a kick up the backside when you are stressing or arguing about nonsense… Save your energy for when life throws the really big challenges at you 😪