This past Monday – a rough day for the Rett Community

On Monday, three young girls (between the ages of 10 and 14) died from complications due to Rett Syndrome.  I’ve been struggling with this all week.  Mourning for these sweet girls.  Mourning for their families.  Mourning for everyone in the Rett Community.

I try so hard to stay positive about Lily and her diagnosis.  But when you get hit (it felt like a punch in the face actually) with the news that 3 girls died in one day, it is not easy.

I bought three bouquets of daffodils for these three girls and have them prominently displayed in our kitchen/living room.  To bring sunshine and happiness to me and Lily and to the memory of these girls.

It makes me feel selfish to take all of this so personally, but then I remember that this is part of the reality of my child’s diagnosis.  And I also realize that Lily is different from each of these girls.  I don’t know their stories, their struggles, their giggles.  Maybe their Rett was on the more extreme end of the spectrum.  I don’t know.  And I didn’t want to look into it further as I pretty much put my head in the sand and walked away from FaceBook on Monday because of this news.

When I feel stronger, I’ll reach out to the Rett community to find out more.  But for now, I’m just going to hold my baby extra tight and sing all the songs she wants so I can hear her beautiful giggles.

Below is a photo of Lily playing with her beloved Maureen, one of her many therapists who visit us each day.

Lily and Maureen

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5 thoughts on “This past Monday – a rough day for the Rett Community

  1. What a perfect photographic image. Challenge is so much a part of artistic inspiration. And art is such a magnificent outlet.

  2. So sorry to hear this news, I’m sure it made for an incredibly difficult week. Hope you and Lily can have a fun and cuddly rainy weekend. I should have an answer by Monday if she’s moving to Virginia next week, section 8 was inspecting the house today. I think I’m all good with Edgar, sent all that was requested. I’m hoping Maureen can show me that paperwork. Prayers and Hugs till we meet again……………Ann

    Sent from my iPad

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