Grace for Rett » Grace's Life with Rett Syndrome

A note to Rett grandparents: how you can support your kids

I had an email from a reader once saying that her granddaughter had been diagnosed with Rett. She asked me how she could support her daughter at this difficult time. It came back to me as I was doing the dishes this morning {that’s usually when blog post ideas hit me} and so here I am telling you grandparents what your kids need most when their daughter is diagnosed with Rett.

It can be very easy for me to think and act like Rett Syndrome happened to me. I could play the martyr and get people’s sympathy, but you know what? Rett Syndrome didn’t happen to me. It happened to Grace. No matter how hard I take this diagnosis, no matter how much it screwed up my life, my plans, my dreams…it did so even more to Grace. Immeasurably more.

So what I said to the grandmother was this: the best thing you can do for your daughter is remember that this didn’t happen to you. It happened to your granddaughter. It’s your job to support you daughter as she supports her daughter and if you need to vent about how hard it is for you, do it to someone else. Your daughter can’t support you right now.

I think what we all need to remember is that this happened to our daughters and not to us. Yes, Rett takes a toll on us and our families. But it’s nowhere near as much a toll as it’s taken on our little girls.

lisa Sherlock - August 13, 2012 - 7:40 am

I actually think this is quite harsh. My mum and dad are soo supportive and live for their granddaughter. At all times they have HER INTEREST at heart. They are selfless and feel for what their granddaughter will miss out on in life and what their own daughter is going through. I feel whomever wrote this, wrote it in anger and is stuck in how they are feeling. It affects more than just one person. Everyone grieves in different ways

Grace for Rett - August 13, 2012 - 7:58 am

That’s awesome, Lisa! And you’re totally right, it does take a toll on more than one person which I said in this blog post 🙂 The words in this post are a culmination of discussions with other rett parents who have said they need to remember that rett happened to their daughter, not to them. That doesn’t mean it doesn’t affect us all 🙂

lisa Sherlock - August 13, 2012 - 9:24 am

Hi. Apologies if I came across too harsh. I do get what you are saying. I suppose some grandparents will make it about themselves. I think some just feel at a loss of what they can do to make it easier on their children and grandchildren. Some people feel they have to do something. Maybe by clarifying to them that sometimes all they have to do is be there to listen, lend a helping hand (help that the rett parents feel is necessary and not what they feel is necessary), giving the parents time out every now and then by babysitting, by fundraising to create awareness etc.

Scott L Vannatter - August 13, 2012 - 1:17 pm

Agreed! Can’t say it any better!

mary - August 13, 2012 - 2:50 pm

I believe I was the grandma who asked you for advice a few months ago. I was looking for ways to help out as much as possible. I have babysat many times even if it meant I had to switch my hours at work or use vacation. I think the most I do is pray for my grand-daughter (and daughter and her husband!) every night asking for their continued health and happiness and thanking him for always watching over them! 🙂

Grace for Rett - August 14, 2012 - 7:53 pm

Mary, that’s uh-MAZING! She’s very lucky to have you 🙂

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