Thursday 5 July 2012

Should My Daughter Be Her Brother's Keeper?

When my daughter Natalie was about three, her favourite game was 'hospital'.  This involved her lying in bed with toilet paper wrapped around her leg, making a cast.  The whole imobilized limb was then strung up with a skipping rope over a hook on ceiling creating a makeshift 'traction' device.  To top it off, she demanded a bottle to drink her 'medicine'.  One does not need a degree in clinical psychology to figure out that Natalie was doing a very good imitation of her brother.  

My "Young Carer's Rap" post on July 3rd got me thinking about Natalie, my daughter.  Last night Natalie and I were chatting about her thoughts on whether or not she thought my husband and I asked her to help with Nick's care too much or too little over the years.  We agreed that too few demands meant a lost opportunity to learn about empathy and responsibility.  Too many could lead to resentment and even an aversion to looking after others, including one's own children in later life. 

When Natalie was about ten, I asked her to help with Nick's tube feeds - a slow push of formula in a large syringe while watching morning cartoons was her job.  I was in the kitchen, watching out of one eye while I made school lunches or breakfast.  Nat sometimes wanted more responsibility - and one of those times I will never forget.  It was a day in August of 1996.  Moving day, to be precise.  We were moving from London, England, back to Canada and the kids woke up early, very excited.  Nicholas was in bed while I pushed extra clothes and supplies into our carry-on luggage.  Suddenly, I heard a thump followed by an almighty wail.

I ran down the hall to find Nick on the floor with a bloody lip and Natalie standing, her hands covering her mouth.  Nat was only four, but that didn't stop her from thinking that she could hurry our departure along by being helpful and getting her seven year old brother up and out of bed.  Nick couldn't sit or stand, so the resulting kaboom was predictable and of course, forgivable.  I hugged Natalie before Nick and soon enough, we wiped the blood from Nick's mouth and got ourselves to the airport and home to Canada. 

Did we ask too much or too little of Natalie?  That's a question I will always ask myself and I don't think there is a clearcut answer for any parent who has a couple of kids, one of whom has disabilities.  Maybe the trick isn't about how much you ask, but how you talk about it and keep talking years later.

This is Natalie today - still busy going places!  


lacyndarella said...

I ask Charlie to pick up the papers Jimmie tears and throws all over the floor. I ask him to get me diapers. I ask him to take the diapers outside to the trash bin. I ask him to bring me Jimmie's bottle. And I ask him to give it to his brother. He does it with a loving spirit. He is rewarded with Jimmie's punching and biting. He cries and then forgives his brother with much love. I am raising a very good man, a nurturing man. I DO expect him to care for his brother. I DO expect him to be there for Jimmie after his parents are no longer able to be there. But I also love him all for him, because he is Charlie. He's funny and smart and imaginative. I want him to know he is loved for himself too, not just for the sake of his brother. And that is where I think the balance is. My answer to this question is yes. Your daughter should be her brother's keeper. But I think she should be regardless of his ability or disability. I am my sister's keeper. I will do for her whatever I can whenever she needs it. And she does the same for me. In the end, our family is a part of who we are. Love you as always. Lacy

The Caregivers' Living Room said...

Hi Lacy!
How fascinating to discuss these very personal issues of our style of complicated parenting. It's funny, I have always worked SO hard to protect Natalie from being her brother's keeper. I didn't even give it much thought, consciously at least. I think in our case that was because I was so overwhelmed myself at the scale of Nick's care and how were constantly fighting life-threatening crises. I wanted Natalie to have a childhood, but I'll tell you, sometimes I just lost it and once when Nat was six and she was complaining about school being hard, I just yelled at her in the back seat of the van "Life's hard, Nat, get used to it!" We laugh now, but at the time Nick was in the hospital with uncontrolled pain and I had a few of those bad parenting moments! At least now we have a network of people who look after Nick including Natalie. She calls Nick and visits him, tag teaming with us. But we have nurses round the clock - a whole team - who do the care including awake by the bedside overnight. Thank God! Anyway, it's so interesting figuring all this out and talking about it. Thank you for commenting here, Lacy! XO

Susan BH said...

Hi Donna..
Love your blog, have followed you from BRAINTALK. I live in Southwestern Ontario, and have an 18 year old who is developmentally disabled along with a host of medical issues, and twins who are typical and 5.
I struggle with this issue because I would never want to put the burden of care on the younger ones. I hope, as other parents do, that they will remain in Lexi's life and maybe in an advisory role but I will never force them or beg them.
I remember many years ago at a parent support meeting, parents were talking about this issue. One parent declared that her handicapped child would live with her other daughter in the future as she adored her. The"normal" daughter was 8 years old!! We were all a big aghast at this statement.
As a parent, it is too raw..those horrible days of medical care, seeking funding, seeking respite,managing school,scheduling workers and a million and one things we do on a daily basis. I would never ask that of them. I gave birth to Lexi, not them.
I do think they have a massive advantage in having Lexi in their lives, they are learning early lessons of compassion, dedication, perserverance and determination. They are only 5, and are just beginning to realize the differences between themselves, and Lexi. We have started to have some incredible conversations, and I hope they carry their experience out into the wide world, in a positive, happy way.
One day, as Lexi was getting ready to leave to catch the school bus, one of the twins yelled at her "Lexi, Stop"..we all froze..and Zoey leaned over and did up Lexi's shoe..and said "I want you to be safe Lala"(which is their nickname for Lexi) prompting,just a natural thing.
So, the future just never stops, life will change, the girls will all grow and's going to be quite the adventure.
And Donna, I can understand the "Life is hard" statment to Natalie, my favourite statement is "Suck it up buttercup!"
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The Caregivers' Living Room said...

Susan, thank you so much for your comments - I LOVE "Suck it up, buttercup!" Wow, I can't imagine how many tasks you must complete in a day with 5 year old twins and your older Lexi. I appreciate too, what you said about the woman talking about her eight year old living with her sibling in the future. Wow. I remember I was at an Easter Seals parent conference a long time ago and there was a parent on a panel with her young daughter (about 10) who did almost all the physical care for her younger sibling with SN. I think we were supposed to applaud this, but I thought it was deeply disturbing. I have no idea if this Mum had any choice in asking so much of her other daughter, but the ablebodied daughter herself was so heroic and vocal about her role which entirely absorbed her life. She freely admitted that she never played or had friends and she seemed proud of that. Her Mum nodded and smiled. It was so strange and to me, sad - for everyone in their family. Anyway, lots of food for thought and we haven't begun discussing what all this means when cutbacks to services hit our families hard!

Jeanette Booth said...

Hi Donna: What strange coincidence to read your blog tonight! I don't know if you know, but our Mike has an older sister - 17 months older to be exact. I, like you, struggled to not make her her brother's keeper. I wanted her to find herself and not identify or feel the responsibility of her brother's care. Maybe ironic that she is now an occupational therapist working with people much like her brother! I admire her deeply and I know that a lot of who she is now is because of the influence of having Mike as her brother. But I still try to put a little separation between them so that she can continue to make her own choices, not necessarily the choices she would make if she were her brother's keeper!