So I feel like we are on this roller coaster. One day we are upset and trying to see what we can do to change the outcome. Then we find that place of peaceful acceptance. Then there is upset and we are again in turmoil. I think it is and always is surrounded by Lily’s …
How do we have a 5th grader and 2nd grader???!
I am so excited to share “Living with CDKL5” from the AdaptiveMall site!Click here for Lily’s storyA few months back I saw the whole “living with” series on the site and emailed them to ask how we can take part and they sent me a questionnaire and asked for some pictures and I was thrilled …
Me: My period is starting soon Andrew: Doesn’t she know by now we don’t like her? Me: At this point babe we like her much better here than not here Andrew: True
Andi Jane was in Greer with Grandma and Grandpa for almost 2 weeks and I didn’t like it. We missed her so much and totally realized how helpful she is with the other kids. Sunday morning I was very hesitant in sending Lily into her Sunday School class because Andi Jane wasn’t there with her …
New Orleans was awesome! What a wonderful weekend! It was awesome to have some couple time, it was awesome to have a face to face meeting (for 4 hours 🙂 instead of a conference call) with the most amazing women I could ever possibly get to know and get to meet other CDKL5 moms and Rett moms that …
I am overwhelmed. Like to the top and over. I have a million things to do and about 14 hours to do them in. I have to be a couple different places at the same time and I know it will all work out in the end, but the feeling of anxiety I have has …
So many times I see a teenage boy and I think I sure hope my Oliver turns out like him. I am never talking about the star of the baseball field or the winning quarterback. I am always referring to the young man who holds the door for others, a kid who has the sense …
I remember the first day I met Andrew’s Grandma Gloria, she was tall and oh so slender and had the best stereotypical grandma voice I had ever heard. She gave me a big hug and that was it, I was welcomed to the family. I remember visiting her and sitting at her dining room table. …
To say it’s been slow and easy living here in Chandler AZ, I’d be lying. I wonder if I will ever get to say that about our lives. I used to say “I’m board” as a kid, all.the.time. I would call my mom at work in the summer just to tell her that and without …
Calm Amongst the Chaos 