The glass girl and the marsupial baby

Vegemite is doing an intensive swim class every morning this week. Today the instructor was running late, so we were sitting on the side of the pool, not doing anything in particular, just killing time. Lil Z was in her stroller and although she was initially content, she started to grizzle a bit.

“She’s going to have a seizure” Vegemite declared.

“No sweetie, she’s fine. I think she’s just a bit bored” I replied.

Two minutes later, Lil Z had a seizure.

Vegemite stood protectively beside her throughout, clutching a sick bag (Lil Z has a tendency to vomit after a seizure). At one point she got a bit distracted and decided to test the temperature of the water in the pool; but she then came back and rubbed Lil Z’s cheek and talked to her. The seizure was over in less than 2 minutes and Vegemite got distracted by her swim goggles, which she subsequently dropped under the bleachers. Lil Z did her usual vomit and then cried and cried and cried. Vegemite’s lesson finally started and she hopped in the pool while I walked and comforted her distressed sister. By the time the lesson finished, Lil Z had calmed down and we were back on track again.

This is a fairly common picture of our life. Except that Vegemite has never predicted a seizure before. It didn’t surprise me, however, since she seems to be becoming more aware of them. Several times lately she has come to QB and me in the middle of the night to tell us that she thinks Lil Z is having a seizure. One night she was so concerned about seizures that I sent her to sleep with QB while I took her bed. Overall, I think it is a positive thing that the girls share a bedroom, but that night I worried that it might be a bit much for Vegemite.

When Lil Z was born, her body temperature was low and the midwife had me hold her against my skin, tucked up under my shirt. She loved it – and immediately warmed up and fell asleep. When it was time to move out of the delivery room, hospital policy dictated that she had to travel in a cot, rather than with me holding her. She cried the whole way up to our room and only stopped when she was cuddled again. Since then, she has always been a marsupial baby. I suspect her greatest wish is that I had a kangaroo pouch where she could spend all her time.

She loves to be held and will often cuddle up with someone and fall asleep with her head on their shoulder. I carried her in a sling or baby carrier until she was too big to fit. For her first year, she would only sleep if she was curled in bed next to me.

I think sleeping in close proximity soothes her and is the reason she enjoys sharing a room with Vegemite. In fact, I often go in to check on them, only to find Vegemite curled up in bed with Lil Z.

But it also means that much of Vegemite’s life – in fact all of it within her memory – has involved sharing parents or carers who are holding her sister. And particularly in the first two years, it was a sister who was screaming and crying and demanding every ounce of attention and energy we had.

Last year, QB and I went to a talk given by Kate Strohm who is an advocate for siblings of children with special needs. She grew up with a sister with cerebral palsy, and shared some really good suggestions. One of them was to scold each child equally – even if it is meaningless to the special needs child. I have done this and regularly tell Lil Z “no” if she kicks or hits her sister, even though it is obvious that it isn’t intentional – and telling her no makes very little difference to her actions. And I’ve been surprised at how important it is to Vegemite. One night I refused to scold Lil Z for hitting Vegemite because Vegemite had been picking on her sister for some time (despite my repeated requests that she stop) and I figured that hitting her was a form of self-defense for Lil Z. Vegemite got very upset and insisted “but she HIT me so you have to tell her she’s naughty!” It made me realise just how important that equality is for Vegemite. Probably all the more so since as an active 5-year-old, she is told off considerably more than her sister on a daily basis.

But one thing I remember from the talk is how Kate emphasized how difficult it is to grow up with a sibling with special needs. Until then, I had only focused on the positive – Vegemite will learn greater compassion, empathy, acceptance of people with different abilities, etc. This is what most special needs parents focus on.  Kate, however, didn’t necessarily see it that way. In fact, siblings of children with special needs are vulnerable to a whole host of issues, including high rates of depression.

This is really not the kind of thing you want to hear as a parent. We chose to have Lil Z at least partly because we wanted Vegemite to have a brother or sister, someone to grow up with, share with, play with and to have for support and family after QB and I are gone. Instead, we’ve given Vegemite a sister who consumes a lot of our time, causes a lot of worry and stress at home (and when we’re out), who will probably embarrass her when she is older and who will probably one day become her responsibility. There’s not a whole lot of feel-good factor in that.

But, QB and I have told ourselves, Vegemite is resilient. She is extremely social and confident and easygoing. She loves Lil Z hugely – too much sometimes as I have to peel her off her sister and order her to stop kissing her. But then again, I worry that perhaps she’s just playing her role in the family – the good child.

I recently ran across the phrase “glass child” used to refer to a sibling of a child with special needs. It doesn’t refer to the fact they’re fragile, but rather that their parents often look right through them. They don’t see their needs – not because they’re bad parents, but because they’re too busy caring for their child with special needs.

If you want to know what it feels like to be a glass child, watch this:

What rang true to me in the video was the fact that she said she was always the cheerful, well-behaved, polite one because that was her role in the family. I want Vegemite to be cheerful, well-behaved and polite, but not for those reasons. And if I’m honest I know that sometimes I do tell her to behave, stop bothering me, do it herself and not complain, because I’m busy with her sister. And I also know that she gets lots of praise for being the well-behaved girl who is ever so helpful to her mum, who is busy dealing with her “special” sister.

What gave me hope was the end of the video. QB and I do try to devote time to just Vegemite. Last year, Vegemite travelled around the world with either QB or me, while the other was home caring for Lil Z. I take her shopping (the child is a world-class shopper) and out for morning tea. QB has his Saturday mornings where the two of them go to ballet and then grocery shopping. And we’re both taking her to see the Little Mermaid ballet on Friday – a last treat before she’s back at school.

Plus, we now have L, our special needs au pair from Germany. Vegemite bonded with her from the moment they met and it is good to know that she now has another source of attention and support at home – even if she has to share L’s time with Lil Z.

I also intend to talk to her teachers at school this year to make them aware of Vegemite’s situation at home and hopefully they will be another outlet for her – maybe someone she feels she can talk to. Vegemite’s new school is much smaller and with a very close community, and I am hoping will benefit her as well.

However, at the end of the day, no matter how much dedicated attention we give her, she still has a sister with complex medical needs. Even as I wrote this post, Lil Z had a huge vomit and then began to scream inconsolably. L and I scrambled around trying to comfort her, while Vegemite sat in the corner, staring studiously at the television. Maybe she can block it out. I hope so. But even as quotidian as minor medical emergencies are around here, it still raises the atmosphere of stress and worry in the house.

And so we go along, with our glass girl and our marsupial baby, doing the best we can.

Advertisements

2 responses to “The glass girl and the marsupial baby

  1. I am always so glad to hear your news and thoughts. Keep them coming. I have just spent a week with 35 special needs skiers and had an astonishingly rewarding and fun time, as did they.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s