When Laughter Fills The Room

It’s amazing how much about Rett Syndrome I can forget when Maggie’s in a giggly mood.  Her laugh is literal music to my ears and it washes away all of the stress and pain of Rett Syndrome.  Knowing that she’s having a good time, she’s finding enjoyment in things, and she’s experiencing little kid giggles…

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Diagnosis Anniversary

The anniversary of Maggie’s diagnosis was three weeks ago.  I had been reading about other families and how that day is indelibly marked in their minds.  Going through the day I didn’t think of it in the same way, in that I wasn’t sad, or reminiscent of what could have been.  It was just another day…

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Happy New Year

We spent the last week in Texas with Maggie where she, once again, was showered with love and affection from her cousins and Texas family.  Always nice to be in such a welcoming environment. We were scheduled to be in Aruba for New Year’s, basking in the love and affection of perfect weather and beautiful…

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Happy Holidays

In honor of the holidays, I thought I would share Maggie’s holiday program from school.  I blurred out the other kids, because people get weird about that. This was a real treat for all of us.  We didn’t even know there was going to be a holiday program – just one other thing that parents…

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Art projects

Every time I pick up Maggie from school I inspect her art folder.  She has extremely limited use of her hands and she can’t draw or paint at this point.  We’re working on it, but she can’t.  So, every time I open her folder, it is with some sadness because I know this is all I’m…

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Bike Riding

Maggie can’t pedal a bike – but Jenny’s mission has been to get her to experience bike riding one way or another.   There was a scooter she never quite got into.  We tried a tricycle that worked for a little bit, though we had to velcro her feet to the pedals.  Her legs are too…

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Fender Bender and #givingtuesday

Since Maggie’s diagnosis, we have gotten used to unwanted news and adapting our lives. So much so, news that would send most people into a panic, AJ and I tend to just say “It is what it is.” So getting in a car accident (everyone’s ok) yesterday really was just another “It is what it is”. I…

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Finding things to be thankful for…

As the holidays roll around I realize it’s almost been a year since we got the diagnosis.  We’ve gone through a lot of emotion this year and hardship and change, but still, it’s easy to find things to be thankful for – our families, our friends, new and old, even Maggie’s health.  While she’s been…

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NNZ trial press report released

This past week has been a roller coaster of emotions. Last Tuesday November 12,2014, two days after Maggie’s 4th birthday. Neuren Pharmaceuticals released the information regarding the NNZ trial for Rett Syndrome. This is a big deal. There are several trials going on right now, which is great, but the process of drug trials is…

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