2013
Strength {Epilepsy Awareness}
My blog is my journal. I come here to write. I come here to put my thoughts into print.
It’s always been easier for me to write out how I feel, than to say how I feel. I wear my heart on my sleeve. Because of that, it is hard for me to be honest to others, though I am always an honest person.
I tend to take things to heart. Words wound me because they are so important to me. Feelings take control of me.
These things play a huge part in my blogging and my sharing about Epilepsy and my children. I write to journal our life but also to share life how it is, living with Epilepsy. It’s not easy but I do my best.
Life with Epilepsy is a long, winding journey. It surrounds us daily. It is our life. We know no other way than to live in the midst of this disorder.
Like with so many other disorders and diseases, if you live in the midst of the trial, you understand. If you don’t, you can only hope to comprehend what I am referring to. It’s one of those either you know or you don’t things and not everyone does.
I look at my children and I feel blessed, never saddened by this disorder. It scares me but I am thankful for each day I have among them. Their lives are not shortened because of this, as none of us have dates stamped upon us for our time to go. I could very well leave the Earth well before they do.
This isn’t a life I asked for but I live it. Someone commented to me the other day that since I have chosen not to have more children, I won’t have to worry about another child of mine having Epilepsy. This is true but I’d have given birth to 100 children regardless of that chance if I could have. The risk was well-worth the gift that my children’s lives are to me. I will teach them that the risk is worth it for their children too.
We have carried this for generations now. It will most likely carry for generations to come. I wear it with pride, though I wish everyday I didn’t have to. Having Epilepsy is nothing to be ashamed of. Having Epilepsy is nothing to be afraid of for God is with us every day. Having Epilepsy is just another part of our lives and I will continue to feel blessed by it, not torn apart by something I cannot control. Even when I am weak, I am strong.
~ Dana
Weak but Blessed in the Normalcy {Epilepsy Awareness}
Everyone keeps telling me how strong I am. But I don’t feel strong. I feel weak and tired. I feel overwhelmed and unsure. I have no idea how to manage my life as it currently stands.
I’m well aware it will all fall into place. This isn’t my first time dealing with diagnoses and doubts. I have two daughters with Epilepsy and now it’s possible that my son has it too. I know from my life with my daughters that this is only a season and before long it will be routine and balanced again, as much as it can be when you live daily with Epilepsy.
This is normal for us. The ups and downs. The shifts and swings in life. It’s our daily normal.
My girls have never had a “normal” life. All they’ve known is Epilepsy. Winston, my oldest, briefly had normalcy. I cherish those days and I miss them greatly. I realize now I had hoped for the same with Jackson because surely my boys wouldn’t inherit this dreadful monster. I mourn the loss of that “normalcy”.
I remember being naive when Laycie was born. I remember thinking “ok I have my daughter with “E”. Laycie can’t have it too.” I remember enjoying those days with her thinking this monster would never rear it’s god-awful head. But then it did and here we are fighting daily.
I guess I thought the same with Jackson, though I wasn’t quite as naive this time. I have watched for it in him for months. As we passed the four month mark, I breathed a little easier. I let my guard down, even when I knew better.
When I got the call the other night, I just remember thinking “my heart knew it was coming” and “not my baby too”. But my instincts, my Momma heart, my sixth sense have all screamed at me to “be aware” for months.
Yesterday was Jackson’s neurology appointment. The doctor went through the usual questions. We answered them as best we could. He wonders if there is a possibility of Apnea. I tell him, “I don’t know”.
He asks me, “what would you like to do?” Well, doc, I’d like to run like hell and hide my baby. I’d like to have my baby back, normal and pretend this never happened. I’d love to pretend it’s all a dream or there is another cause. Previous history, strong family roots, gut instinct all tell me differently.
This nightmare will not just “go away”. Its here and it’s big as night and day. I chose to hold off on medicating Jackson. I chose to agree to have an EKG for him to check for Apnea and an EEG to check for seizure activity. I do not want medicines to prevent that possible activity from showing up, even though we know it may not anyways. It doesn’t always show for me or my girls when have had EEG testing in the past. I do want the chance to find out.
I’m at war with praying right now. I pray he never has another seizure episode and at the same time, I pray it would just happen and get it over with. Then I’d know what’s wrong with my baby and I wouldn’t sit in fear of him stopping breathing never to regain consciousness again. I’d know. We’d be able to treat him. And life would move forward as “normal” as we could get.
Jackson is back to normal for him. He’s smiling and cute as a button. He’s trying to crawl, learning new words every day and working hard with his sign language. It’s as if nothing ever happened which makes me feel even more like it was a dream even though I know it wasn’t.
I feel so weak and tired from all of this and I know that’s ok! I don’t have to be strong but I have to get through it. My strength comes from God, from Life, from my children. I see them daily and know I must face the days ahead for them, even when I want to hide from it all. Hiding won’t get a diagnoses or treatment for my son.
This is life. This is the raw emotion of a Momma who is fighting every day to provide a normal life for her children who didn’t ask to battle a disorder called Epilepsy that generations have carried and passed on. This is our daily life and our “normal” and I chose to be blessed by it even when I’m at my weakest.
And So Jackson’s Journey Begins {Epilepsy Awareness}
Everyone keeps asking me how I am today and at this very moment all I want to do is SCREAM.
Honestly, just scream and let it all out.
I have four beautiful, awesome, amazing children who I love to pieces. I’m so thankful to have every one of them. Thankful for the impact they make on my life. Thankful to have the blessing of them to love and cherish daily.
Yesterday, I was the Momma of two children with Epilepsy. In the blink of an eye, I became the Momma of three children with Epilepsy. Three out of four of my babies carry a gene that has caused their brains to shut down in a convulsion.
I sit here letting that sink in. I’m in shock. I’m lost. I don’t even know how to process that information at this time.
For 10 months, I’ve watched Jackson closely for any signs of seizure. I began to breath a little easier as we passed the 4 month mark when his sisters began their journey with Epilepsy. The older he became the easier I began to breath.
Last night, Jackson had his first seizure. It happened around 8 pm while I was out of town. He was with his Grandma. She said she changed his diaper and suddenly he rolled to his side in a ball. His tongue curled, his eyes rolled into the back of his head and his little body went limp as he stopped breathing and turned blue. She said it only lasted a minute. He was unresponsive afterwards, then came to again. After a few minutes he went completely limp again.
I rushed to the hospital as fast as I could. I was told that as soon as he was brought into the ER, he was rushed back and the nurse and staff all agreed it was a seizure without doubt.
When I arrived at the hospital, Jackson was crawling across the hospital bed like nothing had happened. He had his right arm wrapped into a bandage with an IV but he was smiling and happy as if nothing had gone on. He amazes me. All my children do.
We were sent home with the diagnoses of a seizure and the advice to follow up with our Pediatrician and our Pediatric Neurology team which we have today. His appointment with his Pediatrician was at 1:30 pm today and went wonderfully. He weighs 17.2 lbs and is 29inches long. They immediately called into MUSC Pediatric Neurology and we had a scheduled appointment before we left today.
So far, Jackson continues to do well, though he’s extremely sleepy today. We are letting him play, eat and rest as he pleases. The ER doctors and Pediatrician did not prescribe medications for him simply because they wish to leave that up to the neurologist to do.
I’m feeling numb in so many ways. I want to scream and yet I feel so blessed to have been giving three children with this disorder to care for and love. Does God really think I am capable of handling such a heavy task as this is? He must because it’s here and there’s no one else to do it but their Momma.
I keep thinking that and I keeping thinking he must think me a Saint, a person of strength. But I surely am not feeling that way even though my mustard seed of faith tells me that He is with me and He will carry me and my babies through this. Weak and loved I am today and always. Weak and loved by God himself.
IEW: Teaching The Classics {Crew Review}
I personally used this curriculum to learn more about using the classics in our daily education. I try to use classics with my children because I feel they are rich in educational content and truly heartwarming books. I want my children to learn to enjoy classical books as much as I do. Teaching the Classics has helped me to provide a better education of the classics for my children in working as a reminder of the important elements I need to teach through the process of teaching them about the classics. This program would be excellent for an advance middle school or a high school student to work through on their own. It’s also excellent for a parent, like me, who needs that little extra reminder of these important elements in writing.