Lessons learned in Epilepsy

I am so honored to be included in the listing of guest bloggers for the Utah Kids Foundation. I was asked to write about my experience with epilepsy and seizures. While this is something I have written and spoken about many times it is still a very personal topic so you will have to forgive me having to go back and give some background information about my family in order to show where we are now in the mix of seizures and the things that I have learned.

                My husband Erik had his first seizure after a fever at 3 years old. In his early teen years he started having seizures frequently. For many years he had seizures a lot. By the time he met me he was only having one seizure a year on average. So when he told me that he had epilepsy it didn’t seem like that big of a deal to me. Although I did have to go look up what the word epilepsy meant in the dictionary (yes we use to have to do that before google). We had been married six months before I saw him have a seizure. What he didn’t tell me is that he could have more than one in a day. So he had two seizures then a third. I called his dad and told him I didn’t sign up for three in one day and he could have him back. This is really the beginning of our seizure journey.

                Kimmie was born in May 1998. She was a beautiful healthy baby. From the beginning Kimmie had a mind of her own. Two and a half short weeks later Kimmie had her first seizure. Six months later she started having seizures regularly. Her seizures started with tonic clonic (grand mal) seizures and they lasted an abnormally amount of time (5 minutes to 90 minutes). Between hospital trips we spent a lot of our time relearning basic developmental skills. At five years old Kimmie had what some call a catastrophic seizure. She ended up seizing for 6 hours straight. We are very blessed that Kimmie came back to us and that despite all of her setbacks we have our beautiful girl.  She is now 16 years old and has had hundreds of thousands of seizures. She is currently having quite a few seizures a day (mainly myoclonic, complex partial and absence seizures). We have gone out of state three times looking for answers and are currently bring in medications from other countries in trying to help. With the help of some amazing mom’s Kimmie will hopefully begin her CBD treatment in the late fall or winter this year.

                A little over 3 ½ years ago Erik went from having one seizure a year to a seizure in the bathroom that changed our lives. Erik started struggling for over 9 months to return to “normal” life. It took 2 ½ years from that life changing seizure to get Erik a VNS (Vagus Nerve Stimulator). It is a device that is placed under the skin and attaches to the Vagus Nerve and sends impulses to the brain. This has been a heaven sent treatment for Erik. He went from having seizures almost daily to one seizure in the last seven months (knock on wood).

                So with all of this being said what things have I learned:

11.    Do not take even one day for granted. It can all be over so quickly.

22.       Enjoy the good days. The dishes will still be there and laundry never ends but the opportunity to fly a kite may only come once.

33.      Find people to talk to who understand what you are going through. They can be some of your best resources and biggest strength.

44.    Trust what you think is best for your loved ones. Doctors are just practicing medicine. They do not know everything. They are educated and a lot of times have the best ideas and help. Although you are the one who knows your loved one the most. If you don’t feel right about a treatment look for other options or other doctors.

55.       Find who you can rely on for back up and moral support. You will need a friend to cry on their shoulder, or babysit your other kids, or just someone who knows when you need an ice cream.

66.       Despite what doctors say you will never “get use to” seeing your child have a seizure.  You do learn to cope after time and know what to do a little bit better. It doesn’t ever fix it or make things go away you just cope a little easier after time.

77.       Despite my best efforts I can’t do it all. Some things have to wait or cannot happen at all.

88.       Give yourself a break. I know as a mother I feel like I need to be everywhere and do everything when I can’t I feel guilty. So try and remember that you are important so are your children. Do what is the best for your family.

99.       Put the tape measure down. Don’t compare your special needs child with anyone else’s child. While you may wish more than anything that they were doing certain things you and your child will always be on the short end of that tape measure if you keep measuring.

110.   People will say stupid things. Sometimes it is in hope that it will make you feel better (or them feel better). I swore at times when people said, “God only gives special children to special mothers,“ or “I couldn't handle what you do, you handle so much,” then I was going to punch someone.

111.   I learned that I can overcome insurmountable odds and I can fight for what is right even when I am standing alone.

112.   Last but not least how truly meaningful a kiss and hug, or an I love you can really be.

I hope that something I have said have helped someone and that our journey will continue to grow and learn.