We took Mikaere Ice Skating at Hampton Court Palace with @sschospices – it was a really wonderful evening. He had one of the helpers zoom him around really fast, which was great fun! The lights were also really great, sensory wise.
Also, it was really nice to be with other families like ours. To see other kids in wheelchairs, with tubes and bibs and just, to have no one stare, or be giving our guy the side eye. For him to be out sqwaking his best, most joyous sqwak and not a single person batted an eyelid.
It was also pretty nice for me, as a parent, who is rarely going to be away from her babes to get to ice skate. I genuinely enjoyed out being on the ice, skating about. There’s no way I could go without it being a disabled family friendly event like this, and I’m glad I got the opportunity!
Despite the simultaneous meltdowns by the other two (and when we lost our nurse temporarily), it was a really wonderful night, and I’m grateful to @sschospices for organising it.
#makingMemories#christmasTime#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit#iceskating#hamptoncourtpalace
