Waves of crashing emotions

If we get to sleep, I usually wake up positive. This has been a big shift for me over the past five years. I didn’t use to wake up positive. Honestly, I was living in a fog. The fog of grief. Now most days I wouldn’t say there is grief, just a wave of sadness, Read more about Waves of crashing emotions[…]

Diagnosis Day – Five years later

On December 17, 2013, Magnolia was diagnosed with Rett Syndrome. That was five years ago. So much has happened in the last five years – Rett has progressed, science has gotten closer to a cure and we have gotten stronger. The last five years have been the most difficult in my life. I’ve watched my Read more about Diagnosis Day – Five years later[…]

Where we are now…

There are a lot of ways we can measure our journey with Rett Syndrome. We can measure by the way we have grown and adapted, by what we have done to fundraise or raise awareness. The reality is the most noticeable measure is how Rett Syndrome has progressed. At times it seemed slow and manageable, Read more about Where we are now…[…]

My heart broke, but not for Magnolia

Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark go away.” It wasn’t cruel, it was honest. She has been fundraising and hoping for Read more about My heart broke, but not for Magnolia[…]

Chaotic and fun travel Part 2 TEXAS

The stars at night are big and bright….(insert 3 claps) deep in the heart of Texas. Since Magnolia was 2 years old, we haven’t gone to Texas in the summer. First it was too hard to travel because of sensory overload, then her body couldn’t regulate heat, then we had Gray and then she started Read more about Chaotic and fun travel Part 2 TEXAS[…]

Chaotic and fun summer travel

A recipe for a crazy but fun summer vacation. Ingredients One crazy independent toddler One amazing and strong kid with Rett, One busy, multitasking and exhausted dad One overwhelmed but happy mom Directions Knead all ingredients together.  Add in a dollop of seizures, a dash of minor accidents to taste.  Layer in flights to two Read more about Chaotic and fun summer travel[…]

Better belly happy mommy

If your doctor ever prescribes you Flagyl, know that you are about to imbibe a nasty liquid. Everyday for the past two weeks we had to basically hold a pep rally in order for her to take her belly medication. “Yay Maggie, Go Maggie, You can do it! Give me an M!” There were plenty Read more about Better belly happy mommy[…]

A seizure rollercoaster ride….

I’ve learned a lot of things the past few years dealing with Rett Syndrome. First, every time I write Rett, it gets auto corrected to Rest, which is hilarious. I wish she had Rest Syndrome  A syndrome where everyone is well rested, sounds amazing. Secondly, Magnolia’s perseverance is unwavering. Every once in a while, I’ll Read more about A seizure rollercoaster ride….[…]