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; Continue Reading
The Long Weekend
Maggie is a full time job. Technically she’s a full time job for 3 people. And even then, it’s a lot. This weekend, Jenny took Grayden out of town for his spring break. I can only assume they’ve been busy Continue Reading
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. Continue Reading
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. Continue Reading
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 Continue Reading
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 Continue Reading
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 Continue Reading
2018: A Year in Review
Every year that passes is a reminder of how far we’ve come and how far we are yet to go. The one thing that 2018 was about for us was focusing on living instead of hoping. We are still optimistic Continue Reading
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. Continue Reading
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 Continue Reading
