And for my next trick…
Yep: like all parents, I spend a lot of time juggling. Heck, I spend a lot of time blogging about juggling. And guilt. Let’s not forget the guilt. And of course, these things are intimately related. A huge chunk of the knotty mass of guilt I feel on a pretty much daily basis originates in my feeling that I am a poor juggler. That I don’t get the balance right in my respective responsibilities as Mum, carer, advocate for Boo, partner, employee, and colleague. That I let people down on a regular basis, including myself, but especially my kids.
If you read this blog regularly, you would be forgive for thinking that the hardest circle to square is the working mum/parent-carer one. I wrestle with it daily and the moment it is pretty all consuming. But it’s not the hardest juggle of all. Not by a long way.
The hardest is being Mum to two children, one of whom has extreme and complex additional needs and one who does not.
Sissyboo is just about the best sister anyone could have. Boo is incredibly (there just isn’t a word hyperbolic enough to describe this) lucky to have her in his life. I watch their relationship develop with intense pride and amazement. Her life was as much turned upside down by Boo’s early arrival and all that came with it as anyone else’s and all of this happened in the year she started school.
Cerebral palsy doesn’t faze her. In fact, she is very knowledgeable about it. She has started to question the world around her, the policies and prejudices that affect her little brother’s life. She instinctively, now, notes the accessibility (of often otherwise) of places we visit and clocks lifts and accessible toilets sometimes before I do on trips out. She has the best stare for non-blue badge holders who park in disabled parking spaces because they are in a hurry that I have ever seen. She helps with Boo’s therapies. She makes him sticker charts and buys him presents with her pocket money entirely off her own bat if he hits a new inchstone. She reads to him and plays with him. She forgives him if his wayward arms whack her round the face accidentally or if he pulls her hair.
And mostly, she just loves him. Unconditionally. As I do her.
She may not realise it at the moment, but she has given up a lot for him. Time with me, days out, days without worry. And I worry so much about her missing out.
You see, Boo’s needs will always be the most immediate. He can’t do a thing (except watch TV) without adult support. And she is nearly seven. So when it comes to the two hours before bed what do I do? Shoehorn in as much therapy as possible for Boo? Goodness knows he needs it. And then what to do when Sissyboo asks me to do Hama beads with her? What about when she needs help with her homework and he is screaming because he is uncomfortable and needs stretching or otherwise stimulating because he can’t just get up and walk to the toys he wants to play with.
Sissyboo does after school clubs most days. This is partly because I work, but it is also so I can fit a bit more therapy time into Boo’s day as he doesn’t get enough 1:1 support at nursery. And I don’t feel good about paying someone else to look after my daughter so I can do therapy with my son. Not at all.
Nor do I feel totally OK with all days out having to be geared up around her brother’s needs. Of course, I want him to be as happy as possible and like to be prepared wherever we go, but I hate, for her sake, that so many days out turn out to be about what we can and can’t do with Boo. The only way to avoid this is to split our family of 4 into 2 families of 2, not always practical, and not at all what any of us wants.
We used to have a volunteer from the wonderful Homestart come and help us out for 2 hours a week. Boo was well looked after and I had 2 hours a week with my lovely girl. We used to do crafts or make cakes or watch a movie. That ended 10 months ago now and we both still miss it enormously. I try to take her swimming on my own once a week (like I take her brother on his own once a week too, although she has to come watch). I let her stay up a bit late on Fridays and Saturdays and help me make dinner and do crafts. I plan odd days out with just her. These are so much fun.
But I’m still not used to this. I wish I could get the balance right. I wish I could be sure I was doing enough to support her through school and just being nearly 7. But I can’t. When push comes to shove, Boo often has to come first. He can’t help it. It’s just the way it is. I just hope she grows up not minding. I hope she grows up knowing how amazing she is and how very, very proud I am of her.
If you have any tips on how to juggle the needs of siblings with different needs, I would love to hear from you. This one really has me stumped.