Let’s play ball!

Summer has begun for everyone, at least in our hemisphere. On social media I have seen families sending their kids off to camps, going on family trips and also just swimming by the pool.  It’s been a tough few months and finding camps for Maggie, has, again, been difficult.  The horse therapy camp was cancelled Read more about Let’s play ball![…]

Should we go to the ER?

I’m not sad. I’m angry with Rett Syndrome.  We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; but parents of a little girl who struggles through more than any little girl should Read more about Should we go to the ER?[…]

The Aruba nightmare

Before Rett Syndrome, before hospital visits and a scary diagnosis. We were just a tiny family dealing with ordinary issues. I thought I would do a flashback post to when Magnolia was one year old and we went to Aruba. Some of you have read this before, but I still find it one of our Read more about The Aruba nightmare[…]

Beautifully brutal or brutally beautiful…

Sometimes the smallest of moments show us the beauty of life. Those same moments can also be heart wrenching. I had one of those moments this past weekend. It was simple, it was nothing, it was beautiful, it was brutal. As a family, we were leaving our friend’s house. We were walking to the elevator Read more about Beautifully brutal or brutally beautiful…[…]

The drastic swing of a pendulum

Newton’s 3rd law states…”For every action there is an equal and opposite reaction”. I’m starting to think that pertains to our life right now. Whenever our life swings in one direction, its not very long that it seems to swing in the complete opposite direction. Our pendulum swing is drastic. For us, for every amazing Read more about The drastic swing of a pendulum[…]

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[…]

Traveling and kindness

We love to travel. It has been immensely harder for us the past five years. Since flying became so hard,the past couple of years we have really tried to incorporate more family adventures that involved driving. We have had some really fun experiences from San Diego to Mammoth mountain and I will always love road Read more about Traveling and kindness[…]

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[…]

Home School

There are so many reasons we love the Virtual Academy homeschool program for Mags. Her schedule is flexible, her health is better (colds, flus, viruses, not Rett not yet) it really has been a good program for her. The best part though, is the one day a week she goes to a classroom. She loves Read more about Home School[…]

Magic, Unicorns and Cupcakes

In our life, everything isn’t magic, unicorns and cupcakes. We just do our best to make sure our kids are enjoying themselves and hope the rest will come from there. Maggie turned 8 this past weekend and that brought a lot of excitement and a lot of nerves. When you have a non verbal kid, Read more about Magic, Unicorns and Cupcakes[…]