I received a message from a reader this weekend and it reminded me of my purpose. I live a drama-free life. I stick to myself mostly. If you’ve made it into my circle, you’re pretty special and you know that.
My kids come first. Stress is something that is limited around them as much as possible. All their needs are met and they want for nothing.
The reader, and others before her, wanted to tell me that I am appreciated, that this blog is appreciated. It has given her comfort. It has provided her insight to how her own Mother may feel about her life with Epilepsy.
I am thankful to each of you who read the posts I share and come away with something positive from it.
Unless you’ve experienced it, it’s hard to understand. Unless you’ve seen your child breathless, with barely a heartbeat, you cannot relate to us who have been there. Unless your morning or afternoon has been interrupted by your child falling to the ground, convulsing or even just staring off blankly appearing in a daze, you don’t know what I live and have lived with my children.
I have Epilepsy. I have had it for 39 years of my life. My Mother found me hanging by my neck in a crib in 1979 (complete accident) and my seizures began the same day.
For 15 years, I’ve been a mother to a child with Epilepsy – I am now a mother to THREE children who have seizures. (My oldest child – number one- does not have seizures- he has ADHD.) I fight every day for their healthcare. This isn’t just a game for us, a competition to see who’s got worse health than us… this is REAL LIFE.
And the truth is that at any moment, because my children HAVE Epilepsy, one simple seizure, one traumatic fall, any trauma or even stress could cause a seizure that may end their life.
My third child has Benign Rolandic Epilepsy – her last “official diagnoses”. It has since been expanded to be a broader spectrum than that but is still her diagnoses. Her last EEG showed a definite seizure pattern even on medication. This means that my child, my baby girl is still having seizures even while taking medicine to stop them. Yet, we are attempting to wean her from these medications that cause her to have no hunger for food, and have no energy and have no normal life in an attempt to give her a normal life.
My daughter is gorgeous. Her smile lights up a room. I never want to imagine my life without her in it. But honestly, I don’t know if she will make it through the night. That’s how REAL Epilepsy is and how quickly a seizure could take her away.
I do NOT have time for drama in my life… or stress… or to deal with any one else’s mental issues or financial insecurities. (Dave Ramsey is a great person to learn about ending debt.) I have a daughter to save. Her ADHD is the LEAST of my daily worries and it’s often aggravated by her medication, making her much worse. She cannot focus. She has trouble retaining information. Her learning suffers from the malfunctions in her brain and the medication that is also affecting her.
We travel hours for health care. I spend tons of money on those trips, purchasing food and gas. And I never ask for anything from anyone else because it’s my place as her Mother to make sure she’s got all she needs. (Her father does not pay me support and I am okay with that because in the end of things, money does not matter – her life does.)
I deal with this daily. I’m the ONLY one who makes their medical decisions. I have a Mother and a husband but in the end I am the ONLY ONE who deals with the choices in their care. I make sure they are provided for and have all of their needs met and I depend on no one to help me do that. After all, tomorrow doesn’t promise that they will be there.
This week, my son turns 6. Our Facebook memories show the haunting days of his struggle with Involuntary Breath Holding Spells that Trigger Epileptic Seizure which is his “official diagnoses”. I’m thankful those days are passed though he could have a spell at any time still even at 6. His are the seizures you will see that I have shared online to help others who have gone through and are going through the same things we have.
I can be petty… and I can be a total bitch (just ask my exes)… but in the end, all that matters to me are these kids that I was gifted to love and raise. And I share our life, our story with you so that those of you who read this don’t feel alone. I am thankful to know that it helps… I know what it’s like to feel alone in this battle and I strive to ease that feeling for others who are like us. You are not alone… I see you.
Until Next Time…
Dana
