"I know you're a stay-at-home mom, but what do you do with all your time?"

I used to get that quite often from those who had no kids. It was one of my biggest pet-peeves at the time. Being a stay-at-home is hard work. Definitely a full-time job. I have heard people say, after they have had kids, that they never realized how hard is was going to be and that their job outside of the home was much easier.

Obviously, I am no longer a stay-at-home mom. However, I still get the same response minus the stay-at-home mom part of course. The reaction I get when I tell people I am not working is ridiculously offensive and quite amusing all at the same time. People EXPECT and ASSUME that if you are not at home raising a family, then you obviously must be working. I hate having to feel like I have to justify myself, when quite frankly, it is really none of anyone's business.

And then, there are some who feel the need to recommend to me what I should be or could be doing with all of my time. Yes, I am not kidding, it has been done and it makes me want vomit. I know most people have the best of intentions but really? Do you really think I am that helpless that I haven't thought of things I could do to fill my time? Actually, I have formulated a list both in my head and on paper. I just haven't really done that much about it. I have talked about my ideas with Mark and a few friends.

I find myself trying to formulate an answer to the dreaded question. The sad truth is, I avoid people and places just to avoid having to hear THE QUESTION. At one point, I thought I would just lie and say I was going back to school. However, this is completely absurd considering that I have both a bachelor's and master's degree and am not really that interested in taking on more school loan debt. But hey, maybe it would get people to shut up!

Very recently, I was at lunch with a friend of mine, expressing to her my very frustrations with this. Her response was, "Just tell them you are married to a doctor and that you don't need to work." Awesome! Actually, I have thought of saying this but I don't ever want to come off as the stuck up, snotty doctor's wife who gets to stay at home and eat bonbons and watch soaps all day or go out for lavish lunches and shopping sprees. Excuse the run on sentence. The truth is, I feel blessed and very thankful that I don't have to work. I realize that I am probably one of the few people that has this luxury. I have friends and family that have lost their jobs or are close to it. So, I don't ever want to flaunt the fact that I don't need to work when others are in dire need of a job, which is why I have held off on that response until now.

But from now on, my response will be just that: "I am married to a doctor. I don't need to work." Deal with it! Ahhhh, I feel so relieved now!

Landmark Clinical Trial for Childhood Absence
Epilepsy Fills Large Information Gap

CURE would like to call attention to a landmark clinical trial, which has established an initial drug therapy for childhood absence epilepsy—the most common form of childhood epilepsy. The study—lead by Tracy A. Glauser, MD, director of the Comprehensive Epilepsy Center at Cincinnati Children’s Hospital Medical Center—is the largest pediatric epilepsy clinical trial ever funded by the National Institute of Neurological Disorders and Stroke (NINDS), of the National Institutes of Health (NIH).

Published March 4 in the New England Journal of Medicine, data from the double-blind, randomized, comparative clinical trial fill a large information gap in the treatment of childhood absence epilepsy, also known as “petit mal” epilepsy. The research, which identifies important differences between drugs in seizure control and side effects, is expected to impact how physicians select and monitor initial therapy for children with the disorder and ultimately lead to improved outcomes.

CURE Chair Susan Axelrod stated, "This is a groundbreaking study, which will lead to improved seizure control for so many children who suffer daily absence seizures. CURE would like to extend its gratitude to Dr. Glauser and his team for their hard work and dedication."

To learn more, please visit:
www.cincinnatichildrens.org/about/news/release/2010/epilepsy-trial-3-4-2010.htm

'Molecular Trigger' For Sudden Death In Epilepsy Found

'Molecular Trigger' For Sudden Death In Epilepsy Found

Raindrops falling on your head

The rain reminds me of Karissa, but then again, I guess everything reminds me of her. Whenever it rains though, I am reminded of when I used to do 'raindrops' on Karissa's head. As a child who had problems with sensory integration, Karissa would love when I would do raindrops on her head. The light tapping sensation helped to calm her down and get her to relax. Sometimes, when she had a difficult time falling asleep, I would lightly tap her head and softly sing the word raindrops. I was always amazed at how her disposition would change. It was so very sweet.

Or, when we were in the car during the rain, I would open her window and she would put her hand out to feel the raindrops. I would say, "look Karissa, raindrops, like raindrops on your head." Sometimes she would respond with her sweet "ooooooo." Precious. Anyways, that's all...

Dreams of a reccuring theme

Often times, I go to bed hoping and praying I will see Karissa in my dreams. I dream of Karissa quite often and have found a re-occurring theme. Like most dreams, last night I dreamt that Karissa was alive and that she was talking and communicating beautifully. No seizures and no funky diets. She was so happy.

But, what I find very strange, is that in all of my dreams, I am waiting for her to die or to just disappear. Like I knew she had died and that she had come back, but only temporarily. Just for a short little visit.

In my dreams I also struggle with what to feed her...do I give her normal food or do I resume her diet? I usually end up giving her whatever she wants to eat, but I find that as she is eating, I am waiting for her to drop dead on the floor from a seizure. I am holding my breath, just waiting for it to happen. Yet, at the same time, I am so happy that she is not on the diet.

Last night my dream deviated from its normal theme. In my dream, I was holding Karissa and rocking her to sleep. I was listening to the sound of her breathing and taking in her sweet smell. And in my dream, as I was holding her, these were the thoughts that were going through my mind: "the last time I held you, you were dead. Gone. You were not breathing and you were cold. But now you are alive, breathing and warm and I am so happy. I hope you are here to stay." Weird. I think my subconscious is trying to send me a message.

A Note for Karissa

I miss you so much, especially today. I don't know what triggered it. I keep going through pictures of you and remembering your sweet face. Your crooked smile, your little scar above your eyebrow, everything. Sometimes it feels like a dream, like you were never really here. I hate the quiet in the house. I miss your noises and funny sounds that made you so unique and special. I hate doing things without you. The new 'normal' will never be normal. Just when it seems like I am feeling happier I fall flat on my face again. I know you are in a much better place and I am thankful for that. I know I will be with you one day but for now I just keep trudging along without you. I hate it and life is so unfair. But don't worry, I will be ok. I love you so much and my life is not and will never be the same without you.

Save as Draft

Becoming "Those People"

I recently stumbled across a blog written by a mother who lost one of her twins at 24 weeks of pregnancy. I didn't spend to much time on her blog because, along with losing a child, losing an unborn baby, especially that far into a pregnancy, is another one of my biggest fears.

On her blog, she briefly talked about becoming one of 'those people.' You know the ones I am referring to. Those people... the ones who see, live and experience tragedy firsthand. Those people...the ones who you don't know how they do it, how they go on and wake up every single day after losing a loved one. Those people...the ones you hear about through a friend and hope and pray to God that you will never have to go through what 'those people' have had to go through.

I myself have thought the same thing. I know for certain that you have too. When Karissa was in the hospital at 2 weeks of age, when we knew that she was going to be ok (or so we thought), I remember thinking "I am so glad we are not 'those people.'" Those people being the parents of the children in the pediatric oncology ward. The peds unit, where Karissa was admitted, was next to the peds oncology ward. There were several times where we would walk by the peds oncology unit to get to the peds unit. My heart just broke for the mommies and daddies who, I knew, may lose their child to cancer. For those, unlike me, who may leave the hospital without their precious daughter or son. I remember being so thankful that Karissa was going to be ok and that we wouldn't have to be like those mommies and daddies. I remember thinking that I didn't know what I would do if I lost Karissa. I shuddered at the thought of being in their shoes.

On July 8th, 2008, Mark and I became 'those people.' So many of you have told me that you don't know how I do it. How I get up in the morning and live my life without my daughter. Quite frankly, I don't know how I do it either. I just do.

Becoming one of 'those people' has given me an entirely different perspective on life. It amazes me the things people, mainly parents, complain and whine about. Are you really gonna complain about changing your kids diaper? Really? I don't get it. It makes me so angry and resentful.

Your whole world can be turned upside down in an instant. Life is fragile. I just wish I didn't have to become one of 'those people' to realize just how precious life really is.