Today I had a 15 min catch up with soldier’s teacher, he has only been in school 50% of the time since school returned after summer. A mixture of illness (bowel related), tiredness (gene flaw related) and just not wanting to go. He refused his last two respite visits too. He’s a big lad now…
The unseen impact of lockdown :(
As the U.K. starts to open up from lockdown many families like ours find life more restricted than ever. Years of hard work to get our very sensory Angel and Soldier able to cope with the world undone in 5 months of shielding and the subsequent lockdowns. As most children relish their freedom again, ours…
Happy Birthday SWAN U.K.!
So SWAN UK is 10 years old! 🎶 Happy Birthday to you A wonderful crew Happy Birthday dear SWAN Without you what would we do!! 🎶 Who they? Those that know me don’t need to ask. My best friend even ran a marathon for them. When you have an undiagnosed child (or 2 like us)…
When you don’t really want to think about….
As your kids grow up they should get stronger, more capable, more resilient.... but not always... We were told when Angel and Soldier were young and we had no idea what was causing their delayed milestones that their path was not known. Then again when we found out the gene flaws causing their issues that…
It’s been a while… a whole new stage awaits…
It’s a few years since I shared in this blog. Angel and Soldier are now young adolescents and life is definitely taking a new path. Both are in High Schools and we are navigating our way through the COVID pandemic like everyone else. Me, my thoughts are turning to adulthood. I’ve started a degree in…
Little rays of light
This morning Soldier lit up my world. Such small things to most families but such major communication for Soldier. We have been away for a few days and since coming home Soldier had been getting up early.. so I have been telling him if it is still dark when you wake up go back to…
not such a happy birthday..
Here we are heading back from what should have been a bit of family fun to celebrate soldier's 9th birthday but in true ASN family style it never worked out that way.... we should have left home yesterday morning all excited for our night away at our favourite hotel instead Soldier was in serious pain his…
Sometimes it just hits home so hard!
Today has been a toughy! We said goodbye to our gorgeous little pup Cookie. It really brought home to me the impact that our kids limitations has on their and our lives. I don't mind admitting it has been a day of tears. Yes, she is only a dog BUT she was a little addition…
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…
It’s been a year….
Since I last blogged...
the angel and the soldier 