This is the letter we sent out to our families letting them know about Maggie. Some of this references a website that hasn’t been set up. In truth, I’ve been keeping this blog going without telling my wife since she Continue Reading
Formulating a plan
I’ve always been a fixer. I’m not handy. But I’m a creative problem solver. That’s really the only thing I’ve ever been really good at. This thing that our little one is dealing with is the world’s worst problem. At Continue Reading
New world
Now that we’re back we’ve started talking to people about it and that’s allowed me to loosen up a bit. Though people apologize as if it’s the end of the world. I guess it’s a testament to my current state Continue Reading
Balance
We’re also painfully aware of the importance of balance in our lives. Forcing therapy all the time is not a life we want her to live or we would want for ourselves. But at the same time if she doesn’t Continue Reading
Amazing every day
I keep repeating the just a label mantra to the point where I’m actually believing it now. Today she was swinging on a band swing-the same swing typical kids have been swinging on forever. She held on tight and stayed Continue Reading
Heading home
With a bit of a heavy heart we leave our family in Texas today and head back home to California. We’ll be her only caretakers now and there will be little to no break. We’ll miss granny and pops and Continue Reading
On the road back from Houston
We’re headed back after an exhausting journey at the blue bird center. We got a lot of information. Some of it was positive. Some of it was less reassuring. I’ll update this blog with specifics when I have a minute. Continue Reading
Meeting with Dr. Motil
Tomorrow’s the day. Wish us luck. I know we’ve both been anxiously awaiting the opportunity to meet with the Blue Bird doctors since we found out and I’m not quite sure they’ll be able to meet expectations. We have our Continue Reading
Leaving for Houston
Can’t sleep tonight. I think I’m nervous about what I’m going to learn in Houston. We’re headed to the blue bird center-which is like the mecca for Rett research-on Wednesday but leave for Houston on Monday. We’ve found it’s best Continue Reading
Stress level
It’s hard to keep stress low especially when the unknown is so vast. There’s only so much internet research I can do and not a lot is written in a language laymen can understand. As much as I want to Continue Reading
