I have been battling myself about writing this post for some time now, and I've found myself writing it but deleting it several times. Today God showed me the courage I needed to take this step through another friends blog post. Her openness showed me how important it is to speak out so people understand, even if just for a moment what our lives are like.
My life has been anything but "normal" since Lauren had her first seizures. I can picture that very day like it is happening right now. In that moment I felt every emotion imaginable. I feared for my daughters life, I panicked because I didn't know what to do, I cried out for help and was so grateful to the people who stopped to assist us, I begged God not to take my little girl, I felt relieved when the ambulance showed up to help, I felt helpless as a mother, and I felt angry when I was told they didn't find a cause for her seizures that day. I've never felt so numb in my life than I did that moment.
Most people like to assume that our lives just move on as normal once she was put on a medicine. They think that Epilepsy is like a cold, not that serious, and from someone who was once oblivious about Epilepsy I can understand and relate to those assumptions. I wish with everything that I have that Epilepsy wasn't as serious as it is, and it breaks my heart how many people suffer with this condition, yet it's still not as know as breast cancer.
Every day I wake up and immediately check to see if my little girl made it through the night, praising Him for allowing her to be with us one more day. For her sake I try and allow her to be as much of a five year old as she can be, but as I watch her doing every day things such as walking up and down our stairs my heart races. You see seizures happen out of no where. Sometimes they come with warnings and we are able to assist her and lay her some where safe but that generally isn't the case, so doing every day normal things become a hazard for her. I live every moment of every day wondering if today will be a good day or seizure day, panicked by any thump I hear fearing she has fallen and is having a seizure, not being able to allow her to bathe alone, worried while watching movies or being near flashing lights. I spend time concerned about her future, will she be able to drive, or live alone. Seizures aren't something you just forget about until they happen, they are apart of our every day life.
In the beginning of all this I was open to others about all the emotions I was feeling, but I soon started getting the feeling that people were tired of me crying over something that doesn't necessarily happen every day. I began to lock up how I was feeling and what I was going through, feeling as if what I felt was wrong.
Being a parent is hard work, and we often spend days worried about our children's safety, their daily life and their future, but adding to the mix taking care of a child with seizures makes parenting that much harder. I am grateful to God for trusting us to care for such a precious child. I know He has a plan for her life, and for her having to endure the burden of seizures, but I won't pretend that I haven't spent nights begging Him to heal her and remove this burden. This has been a rough journey so far especially with not having any answers. This journey has brought our family closer to God and to each other and has opened the door for me to meet some amazing families who deal with Epilepsy and know just what I'm feeling and enduring. For this I am grateful.
If you you aren't familiar with Epilepsy please take the time to educate yourself on the proper ways to assist someone who is having a seizure as well as making yourself aware of the many different forms of seizures. Please visit the Epilepsy Foundation page at http://www.epilepsyfoundation.org/ and try and support your local foundation.
Please continue to pray for our sweet little girl and the millions of people affected by Epilepsy.
