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?[…]

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[…]

Symptoms of Rett Syndrome | Share for Awareness

  Rett is a progressive disorder – it will get worse and worse until there is a cure.  In other words,  we are never out of the woods.  Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Maggie has lost her speech. Maggie’s arms & hands have Parkinson’s like tremors. Maggie hasn’t Read more about Symptoms of Rett Syndrome | Share for Awareness[…]

October is Rett Awareness Month

We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months.  What are we going to do?  How will we contribute to Rett Awareness Month? I had grandiose plans, but am glad I’m more or less just a participant in a number of events.  Awareness doesn’t Read more about October is Rett Awareness Month[…]