It is Sunday night at 7:00 p.m. and I had pretty much given up the idea of writing a post for today. I really wanted to tell you how much fun Trin had at camp and what I surprised her with when she got home but I am so overwhelmed I can barely type. I…
daily life with tiara
A small miracle has occurred!
As Tiara’s Mom there are a few things I stopped hoping for years ago. One, that she would learn to write her name, and two, she would some day be potty trained. She is the most stubborn person in the world, which is why she is still alive, but she refuses to even get near…
It happened, we have accepted an offer!
As you all know I have been crazy for the past two weeks. Worrying, WORKING ON THE HOUSE, and totally stressing myself out about selling our house. Well, our prayers have been answered. We have accepted a great offer. Out of respect for all the parties involved I am not at liberty to disclose…
Why are my muscles sore?
I have woken up everyday for the past week with really sore muscles and yet I haven’t exercised all week. HMMMM, I guess it is my nonstop gardening, manhandling Tiara in her current ongoing horrible mood and pushing her 185+ body in the wheelchair across grassy soccer fields for 5 days. Talk about weight training,…
Who turned off the water?
So Wednesday morning early I heard a knock on the door and when I opened it, there was the water man. He gave me a piece of paper and said the water would be turned off for a half an hour today and from 9:30 until 1:00 I think, on Thursday. I thanked him, shut…
Did I jinx myself?
So I may have jinxed myself after talking about how great Tiara has been doing this past week. Last night she was breathing funny during the night and kept tearing off her oxygen. I must have gotten up 4 times to put it back on, check her oxygen level and then feel her chest. She…
TT is almost totally back to her old self!
So the past few days Tiara has done a few things she hasn’t done since last year. The first I already mentioned yesterday, was our trip to the park on Tuesday. She walked all the way from the car, across the black top and played basketball for 30 minutes. I can’t even remember the last…
A Tuberous Sclerosis Weekend ….
This weekend was like every other weekend in our family, BORING, except I spent a lot of time thinking about our Tuberous Sclerosis friends. This past Saturday was the Walk for a Cure in Long Beach but we were unable to attend this year. I was sad to miss it because one special girl, AMELIA,…
Tiara and her new job…
As you can imagine I don’t ask Tiara to do many things for me as I pretty much do everything for her, but once in a while I will ask her help. Today I got in the shower and was keeping an eye on her through the glass door when I realized that I didn’t…
A big change since Tiara has been home…
Some of you may not realize that Tiara hasn’t started walking on her own since she has been home from the last hospital visit. As a result I push her from room to room in the wheelchair but she spends most of her time in the bedroom. I feed her breakfast in bed, do her…