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[…]

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[…]

Sk8tr girl Surfer girl

I have a skater girl, surfer girl, extreme sport loving girl. I could not love her more. She may not have all of the abilities, but she has the heart.  Last year, when she asked for a skateboard on her Tobii eyegaze tech computer. I thought she had made a mistake. Hello? Presume competence mom! Read more about Sk8tr girl Surfer girl[…]

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[…]

Memorial Day weekend

We had a packed weekend, which I love. Saturday, Magnolia was to have gymnastics in the morning and Gray asked to go climb a mountain. So Mags and I had fun going to gymnastics while AJ took Gray to hike – everybody was happy. During the afternoon both kids were supposed to have swim lessons. Read more about Memorial Day weekend[…]

An Incredible Adventure

https://youtu.be/P4Q_8EJQi10 We are committed to giving Maggie typical experiences and a life full of incredible memories.  She deserves it and it’s one thing that keeps our life feeling typical as well. We have been planning to go on a ski trip for awhile.  We are skiers, or at least, we were in our former lives. Read more about An Incredible Adventure[…]

Return to Disney

My birthday was a couple of weeks ago. My sister and her family came to visit – it was her birthday too. They wanted to go to California Adventure and Disneyland. This is not something we have cared to do with Magnolia, again. The last time we went to Disney, was the day after Magnolia’s diagnosis. Read more about Return to Disney[…]