Zach and Fran live their lives like “also starring” characters in a TV drama or movie. While the audience tunes into the show to watch Brad and George, Angie or Jen and everyone knows it’s really all about the star, in the background the “also starrings” are vital to the story and are usually doing a great job. For us everything revolves around making sure Chelsea, our star, has everything she wants or needs, and we spend an enormous amount of time and energy ensuring that she is happy and safe and that people who want/need to interact with her are able to do so.
If the “also starrings” are lucky they might get one really good scene or a dramatic speech a day that will get them some attention. Think about it who else can you name from the Iron Lady apart from the fabulous and much deserved Oscar Winner Meryl Streep?
My very own “also starrings”: Zachary and Francesca – the oldest at almost 16 and youngest aged nearly 11, are enormously talented and have many needs that are special, however they rarely if ever get to be the stars of our show. Both of them have had great weeks this week, so, even if it is only for one night, the Mom on the Side comes to you from Singapore tonight starring:
Zachary: Zach is currently in Beijing for 5 days representing his school at the Beimun Model United Nations meeting having only just got back from a week trekking in Dharamsala – home of His Holiness The Dalai Lama and the exiled Tibetan government.
The trip to India was the first time Zach has been out of Singapore in more than two years as holidays are almost impossible to organize and financially not a priority for us. He has been patient and understanding of the situation displaying maturity that is way beyond his years and everyday he makes me proud with his fiercely protective love for Chelsea. He helps lift her into her wheelchair every morning before school, he will feed her and sit and turn pages when she is reading. He bombards her with loud, obscure music and endless trivia and, most importantly and more than anyone else, he can make her laugh and raise her spirit . His generosity and compassion are breathtaking, his spirit is beautiful. Now if we could just do something about his extraordinarily large (size 15) smelly feet he would be truly perfect in every way.
She has worked so hard in swimming improving her personal best times and finally she got the reward and recognition she needed and deserved, winning 3 silver medals in the most recent invitational meet and now having the chance to step up to swim with the bigger, faster kids.
My darling beautiful freckle faced baby girl is almost 11 and racing towards teenage angst at breakneck speed. She still sleeps with me every night (part of the fallout from Chelsea’s year in hospital) but is so much more independent and confident this year. On the plus side is her willingness to try things and to be responsible, as she so loves to be treated like a grown up girl (right up to the moment when she actually has to be one of course). On the other hand we are both struggling as we try to navigate our way through homeschooling and it is often one step forward two steps back on that front. There is definite progress in math but the reading is still a challenge.
Most evenings you will find Fran in bed with Chelsea. They do things together on their PC, surfing the web (mostly Youtube or games) and watching endless TV and movies together and they are, as they have always been BFFs. (Until they fight, or Fran gets bored that is).
Zachary and Fran have both suffered alongside Chelsea. Their profoundly palpable pain and trials are very real and different but as equally debilitating at times as Chelsea’s paralysis. While the challenges for siblings of special needs children have been long recognized, the solutions and strategies to overcome them are more elusive. (here in Singapore at least) .
There are some great resources on the web (Article on Special Needs Siblings here ) and with the support of their school and many others we try our best to make sure that our very special
“Also Starrings” Zach and Fran do not get overlooked or pushed out of the picture too often. They have both been center stage during the past week and the spotlight has definitely shone on them for a change.
Zachary and Francesca my two other stars!