Wednesday, February 26, 2014

Talking about the realities with our kids.

Me: "MRSA can be deadly, you know."
Son: "Yeah, I've had that too."
Simultaneously daughter: "WHAT?" and husband: "Don't tell her that."
Me: "It's the truth. It's not like we can hide those facts, plus we have to tell them the risks. We can't protect them forever."
Husband: "Geez."
I brought my daughter to the E.R. the Sunday before a holiday last year because A) We always end up in the E.R. on a Holiday weekend and B) She had a nasty looking spider bite. It was raised and red and hot and hard to the touch and in the back of my mind I sort of knew it was probably MRSA but spider sounded less scary and so I went with that.
It was, of course, MRSA. Also known as the scary, hard-spelling name "Methicillin-resistant Staphylococcus aureus" which is known to send fear into the hearts of many immunosuppressed people and their parents. It's horrible to fight off, and can mean days in the hospital for kids like ours. Our son ended up in the hospital for almost a week when he had it and we tried the E.R. twice to drain it.
I've been thinking a lot about this conversation because I started to wonder if I throw too much at the kids too soon. Do I give their brains too much to handle for their age? For their development? Does sharing the truth and so much information make it easier or harder on them?
The truth is, I haven't a clue. I can only do what I promised both kids a long time ago, that I would always be honest with them about their healthcare. One of the rules in our caregiver/caregivee relationship is that we're honest with each other. They have to trust that I will have their backs when they need it and I have to trust that they will be honest with me so I can make informed decisions with them about their healthcare. I started thinking about what I did when talking to the kids about the harsh realities of their condition/treatments.
Telling my kids they are more susceptible to get a deadly infection isn't at all what I'd pictured my life to be like before I had kids. There are days when I feel like I am just monitoring the Dos and Don'ts of living a life-like theirs...
  • Take your meds!
  • Get regular labs!
  • Have regular kidney (and liver) clinic visits!
  • Wear sunscreen!
  • Stay out of the sun if possible!
  • Wash your hands!
  • Don't touch that bird!
  • Don't feed the birds!
  • Don't touch that ______!
  • So and so is sick, so you can't see them today!
  • Listen to your body...
There are some days I can't believe the conversations I must have with my kids, but then I realize I can only do what I think is best and helps prepare them. It's hard to talk about death and the realities of a disease that is unpredictable.
Even though it's hard, honesty always wins.
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ulia Roberts co-founded Support for Special Needs in 2010 for families touched by special needs. Married to Julian and living in Atlanta, Georgia, they own a small business. They are raising two kids who survived kidney transplants at age eight and require liver transplants in the future as a result ofARPKD/CHF, they also both have vision disorders and learning disabilities.

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