She is their best friend. I see it in their faces, hear it in their play, watch it in the way they fight over the smallest piece of junk, determined that their need to treasure this particular item is deeper than the other. Then, just as easily, one gives in. One notices the tears of…
Category Archives: Epilepsy
All you need is love…
There are times when I think am I doing right by my son. Is it right that I kept him home to homeschool versus sending him to our public school system? This one doesn’t take long to remember why I did what I did! Our schools system offered three schools to choose from, it was…
How Do You Discover What Ails?
At the very moment I write this, I have a headache. I’m not sure I ever really felt it coming, so much as finally acknowledged that it’s here. I recognized it. Acknowledged it. I blurted out to C, “I have a headache”. I just took some Tylenol. Then it occurred to me just how easy…
New Groove
I need a sabbatical. I know from time to time we all need a break. I’ve taken to calling this much needed break a sabbatical. You see life got turned upside down in August. My mom entered the hospital with what we thought was going to be pneumonia but spent 2 weeks inpatient getting a…
Our Bustenhalters
Did the title catch your eye? Ok well welcome, come in and lets talk 🙂 I want to talk about support systems. Do you know who your is? Have you ever depended on them in a moments notice? I guess you don’t know who they are till you need them the most. I’ve always been…
I Hope We Can Stop EEGs Sometime Soon
Today we’re checking into Children’s Hospital for J’s biannual EEG. We’ve been anticipating this for…well, for about 6 months, since his last EEG so we can get a better grasp of what’s going on for him. His last EEG, July 21, 2010 showed him still having 50% of his REM in spike and wave activity,…
Who Needs Sleep?!?
Sleep is for the Weak. Yes. Someone knew what they were saying when they developed that title for a book. For 6 years, we didn’t sleep. I mean…Didn’t. Sleep. That’s part of the unofficial, official symptoms of Landau-Kleffner Syndrome (epilepsy). For us, it means putting J to sleep for 2 hours, he wakes, tosses and…
Dear Little One
Sometimes you can’t move forward until you go back, and I have realized that I have skipped so much of my journey with my daughters, just jumping in here without mentioning where I have been. One of my biggest challenges was the transitional time when Zoe was growing into a child with visible disabilities. This…
Equipment.!
Equipment. ! We’ve been waiting since the beginning of July for a piece of equipment to be approved by medicaid. Today I called to check on it. I know I probably should have done it earlier, but really it’s not unusual to wait for this company. To get my son’s Wheelchair it took 9 months…it…
An Introduction to an Out of Tune Mom
My hopes are that you find this worth reading; my hopes are you come back and read again. My hopes are that this blog will not only give you a picture of our life…as we live it…but also picture of what has worked for us. I am married to Steve (15 years), and a Stay…