Epilepsy

Our daughter, Alyssa, has PCDH19 Epilepsy. It is a genetic form of epilepsy that causes seizures, as well as cognitive and behavioral challenges.  I write about our journey to raise awareness and to keep myself sane. This disorder was only recognized a few years ago but research is coming in at an astounding pace.  It is now estimated that 1 in 10 girls who start having seizures before age 5 have this disorder.

I sometimes write about research or advocacy side of parenting a child with epilepsy but most often I focus on my experience. When we received the diagnosis, I broke. It has been a long journey back towards peace for me. I know that many other parents struggle too and I want them to know that you are not alone in this struggle. Coping with the loss of the dreams you had for your child is difficult.  It’s a messy process and you will be a different person on the other side of it. There is hope though.  Believe me, it doesn’t always stay this dark.

[caption id="attachment_485" align="aligncenter" width="200"]PCDH19 Epilepsy Alyssa and I[/caption]
adoption, Epilepsy

Adoption & Epilepsy

I relate to the other parents of children with special needs on many levels but I don’t bear the guilt of having been the one to pass on Alyssa’s genetic disorder or the constant questions of if it was something I did caused her problems. I relate to adoptive parents too but our story isn’t just about adoption anymore. I switch back and forth between groups depending on the support I need at the moment.

continue reading

Epilepsy, Top Stories

An Open Letter to the New Epilepsy Mom:

I recognize that look in your eyes. It’s a mix of terror, despair, confusion and maybe a little bit of hope that this is all just a bad dream. Maybe you are still in the hospital waiting helplessly while the doctors try to stop the seizures. Maybe you are feeling broken having just received your child’s diagnosis. Maybe you are ready to curl into a ball and hide because it all feels so overwhelming. I’ve been there. I’m still there sometimes.

continue reading

Advocacy, Epilepsy

I’m Not Dancing

Many parents of kids with epilepsy are passionate about the push for medical marijuana because we understand the cost of every delay. Our children are dying while they wait for legalization. We have lost several children to seizures while they waited for their last hope to be approved by politicians who were more concerned with their own agendas than in letting us have access to a lifesaving plant. That is devastating and unacceptable. It is equally appalling that we would deny other parents the chance to save their children.

continue reading

Epilepsy, faith, Special Needs, Top Stories

I’m a special needs mom and I need you to hold my arms up.

As I reflect back over the past two years, I remember many times when I felt like I was Moses, alone on a mountain, growing weary of the fight. There were moments though, when people came beside me and helped me bear the load. In small acts of kindness, friends and strangers came along and held our arms up.

continue reading

Epilepsy, PCDH19

Cautious Optimism

A year without seizures is a huge milestone in the world of epilepsy. Ironically, it is also terrifying. If Alyssa maintains her streak over the summer, then in the fall we will start to slowly wean her off of at least one of her medications. I have a love / hate relationship with those medications. On the one hand she takes large doses of mind altering drugs every day with a whole slew of side effects and an undetermined impact on her development. On the other hand, those drugs are keeping her alive.

continue reading

Advocacy, Epilepsy

A Child of Texas

Alyssa was a foster child who legally belonged to the state and people of Texas. When Alyssa was abused, the state stepped in to protect her because as a society, we believe that it is our obligation to care for our children when they need us. When we refuse treatment that could give an innocent little girl a chance at normalcy and life without seizures or side effects, we are denying our responsibility to her, and other sick children in our country.

continue reading