You ask me what do I crave the most from Lily and I will tell you it is her voice. Words. Humor. Stories. Her take on situations. Her story, her day coming from her lips.I have always said and will continue to say that CDKL5 robbed the most important part of human interaction from her …
A friend posted this link on facebook CLICK HERE and that friend isn’t even a special needs parent friend. Just a typical parent who has compassion for others and his ears sting as well when hearing the word retard in a negative way.I am not going to go all ape poo on the word and people …
Sitting around a table around 10:30pm on a Friday night with some amazing women in my life we talk about kids, and about being moms and the struggles and triumphs we go through. As I listen to some stories my heart swells and I wonder “how does she do it?” Then one mom says “I …
How can she be 10? 10! My baby, my angel, our Lily is 10. Wowzers!We started celebrating on Saturday with nearly 60 of Lily’s closest friends. Our house is under 2,000 sq ft. 🙂We swam, we bounced, we ate. I like to think a good time was had by all!We invited Lily’s friends, most she has …
“Show me someone who has done something worthwhile, and I’ll show you someone who has overcome adversity.” – Lou Holtz I wrote this http://lilyannablu.blogspot.com/2011/01/2010-in-depthmetaphorically-of-course.html (trying to click link this is killing me!) back in January of 2011. I wrote it because I desperately wanted to share what we had been through in our marriage, yet …
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 …
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 …
I’ll be an old lady in my death bed and still remember him saying to Lily, touching her face and saying “continue being awesome”. It was a heart breaking goodbye said to a very special family who touched our lives in ways I could never express and those were the final moments I remember of …
Calm Amongst the Chaos 