Epilepsy awareness: Parenting a child with epilepsy.

As purple day quickly approaches I have decided to blog each day this week, but rather than my own thoughts and experiences, each blog will be written by other individuals affected by epilepsy, their experiences, fears and challenges. 

Today's blog is written by Cindy Angulo who has a gorgeous daughter called Vera. Vera has Sturge Weber Syndrome and epilepsy. Here are Cindy's thoughts on having a child with epilepsy. 

Massive thank you to Cindy for sharing this with me. 

How has having a child with epilepsy changed your life? 

Gosh, that is a loaded question! Well for starters, it has made us aware of territory that is so foreign to us: complex brain injuries, special needs, motor delays and development, infantile spasms, febrile, tonic, focal impaired seizures. We are always on high alert in case Vera has any seizures. We have bags packed in the trunk of our car with extra clothing and snacks in case we need to be admitted to the epilepsy center for a week. We wake up every day by 6am so we can give Vera her morning dose of seizure meds and breakfast before physical, occupational or vision therapy at 7:45am (each day is a different therapy). We have infant Motrin on-hand so Vera's temperature doesn't get above 100 because her seizure threshold will be lowered. We are learning patience and more patience every single day. Vera is our only child so thankfully all that we are learning about being parents, we are also learning about being parents to an epileptic child with Sturge Weber Syndrome (SWS). We have nothing to compare it to that makes it seem easier or less stressful. Due to her SWS diagnosis, we are also learning about glaucoma and port wine stains and brain damage.  

Do you have worries for the future of your child?

Every minute of every day.  We worried that Vera will have significant delays in her cognitive, motor and speech development.  We worry that she won't have a typical childhood or be physically able to play with children in her age group. We worry that she has a harder time than most children in her age group already.  We worry that we are making the wrong choices for her.  We see her screaming through laser treatments on her port wine stain, being subject to several rounds of glaucoma testing and various appointments and surgeries for her vision. We worry that she will be bullied for her birthmark and her developmental delays.  We worry that she won't feel like she's "normal".  Every day we worry that we have to be the ones to make decisions for this tiny little human who relies on us to take care of her. We worried like crazy about Vera being on Sabril for so long to control her infantile spasms but it was the only thing that stopped those seizures (Sabril can cause blindness if you're on it for an extended period of time). We worry that medicine won't catch up fast enough to find a cure for Vera like so many children we've heard of dying already from epilepsy or undiagnosed complex brain conditions. We worry that she gets pushed back two steps every time she has a seizure. We worry that she'll be in a seizure for too long and we'll miss it.  We worry she'll get more brain damage from the seizures. I don't think there has been a day since she was born that we didn't worry for her future because there is no cure for Sturge Weber Syndrome and there is no cure for epilepsy.  

What is the biggest challenge you face? 

The biggest challenge is that there are so many unknowns. With SWS, it is such a rare condition that there isn't enough evidence to predict what to expect throughout the child's life. It's the same with the epilepsy piece of it. Vera was born with brain damage and the damaged blood cells block the blood flow in her brain which causes her seizures. As Vera grows and her brain is making new connections, the seizures are making new connections too. The only thing we know for sure is that the seizure types can change as she grows.  We don't know what type, how severe it will be, when it will happen.  We just know that it can happen. So far, she's had three different types of seizures and three different medicines in her 17 months of life. She's been under anesthesia three times.  She had eye surgery at four months old. Yet with all of these unknowns, there is one thing that we do know: Vera is strong and she gets stronger every day.  We'll hold on to that as we hope and pray for a cure.