It’s Easter Sunday today. For most families holidays like Easter and Christmas are an opportunity to relax with family and friends, to enjoy a delicious meal and celebrate whatever traditions they associate with that particular holiday.
For us holidays are met with a degree of trepidation. We never really know how Jack and Lucy will react on the day , with that in mind we don’t really make too many plans and just try to go with the flow.
We have had some truly bizarre holiday celebrations. There was the year that Jack was terrified of his presents on Christmas morning and wouldn’t open a single one , he screamed and sobbed whilst hiding behind his Grandad. For a few years we had to provide all and any gifts in a bag that he could easily see into. Thank goodness that passed. Now Jack and Lucy have reached a stage where they absolutely love Christmas, they love the build up and the anticipation but sometimes the day itself is simply too much . A few years ago half way through opening his presents Jack actually went into shock, like proper shock. Luckily Ian is a nurse so was able to help him quickly.
Jack and Lucy have never eaten a traditional Christmas lunch, but one year Jack had a guitar off Santa, now I should clarify that Jack doesn’t know how to play the guitar but he is incredibly enthusiastic , so whilst the whole family including grandparents sat chatting and eating ,Jack walked around the table strumming the life out of his guitar whilst singing ” hound dog” in one tone – it truly was like being serenaded by Satan or being subjected to the entertainment in a questionable restaurant . We all ate our lunch shouting over the racket and ducking as Jack swung his guitar manically . He was wearing a white Elvis style jumpsuit all the while. As Jack was torturing us with his music , Lucy decided it would be a great idea to sit at the table and place metal cars inside her toy washing machine. I noticed that Proudfoot senior discreetly turned off his hearing aid at this point. Well he is almost 90 and doesn’t need that at his time of life.
For the last 18 years Jack has wanted an Easter egg but has always point blank refused to even consider eating it. Lots of people with SLOS really struggle to eat and Jack is right up there with the best of the food refusers. But today he asked me to open an Easter egg and scoffed the lot!! Of course I cried and sent the video to everyone I knew.
The rest of our day was probably a little different to other people’s. There was no fancy family lunch because the kids get a bit overwhelmed and we haven’t had time to cook one. Lucy decreed that she would not be leaving the house today and Jack really wanted to go to Porthcawl fair. So Jack and I went to Porthcawl to ride on the crappy ghost train ( he keeps his eyes shut all the way around and I have to cover his ears) and then spent ages watching his favourite ride whilst shouting ” pay at the pay box if you would like to ride” ( damn you echolalia) while people stared at him. Lucy has eaten her body weight in Chocolate today so her nappies will be a delight tomorrow.
However once they go to bed Ian and I will enjoy a bottle of bubbly and some Gammon that we chucked in the slow cooker this morning. Yes it isn’t a traditional Easter Sunday but there is nothing traditional about us. Oh and Jack ate an Easter egg – did I mention that? Happy Easter folks