Last week, I was at my wits end trying to find something to write about on our little blog. My brain was just blocked. No ideas would come. I was seriously about to give up on this writing thing and just give y’all nice little Wordless Wednesday Images and reviews for the rest of my blogging career.
But God, wouldn’t have it! He wants me to write. He’s given me a voice for a reason. To share, to teach, to show others our life.
Recently, I was on Facebook as I often am throughout my day, and my attention was drawn to several posts within private groups that I am in. Those responses generated messages in my private inbox from those who wished to know our story a bit better. And since I love to talk and share, I couldn’t turn down the chance to give hope to others.
Through this, I was reminded just how important it is to write and share our journey with Epilepsy. God spoke… He really yelled at me and asked why I wasn’t writing and sharing this testimony that He’s given to us. And my honest answer is that I just don’t know.
If you’ve read my past posts on Epilepsy, then you know I don’t find it to be a burden but instead a blessing. I know we could have a worse disease or disorder. For our family, Epilepsy is challenging but it is our life.
For 37 years, I’ve had some relationship with this disorder. (I choose to call it a disorder while some classify it as a disease. To each their own.) It began with having seizures as a child, then again as an adult. When Emmalee was 3 months old, it changed to being an Epilepsy Momma and later to being an Epilepsy Momma of 3 with E. This led to me being an advocate for Epilepsy and an Epilepsy blogger.
My reason for sharing is that I want my children to know they are not alone in this. I want others to know they are not alone in this. I want the World to know that it’s okay to have Epilepsy!
Growing up, my Mother didn’t tell the world I had Epilepsy. It was something you kept hidden so others didn’t judge you. She would tell my teachers and advise the school but that was pretty much it. She made me aware and prevented me from doing many things. I wasn’t allowed to spend the night with friends or do activities that could cause me to hit my head. I was pretty sheltered and protected by her.
As a Mother, I understand why she chose to parent me that way. I also knew what I wanted to change for my own children. I didn’t want my children to be kept from doing anything they truly wanted. I also didn’t want to put them through the public school challenges of dealing with teachers who just didn’t understand their mental challenges in learning, so we chose to homeschool.
My mother was lucky in that out of her three children, she only has me with Epilepsy and I was her baby. In my own family, I have my oldest son who doesn’t have Epilepsy and my following three who do have some form of the disorder. All of us are uniquely different in our Epilepsy but I will discuss those differences later in another post.
But for now, this is what has inspired me. God has led me to share my life story, our life story, in order to help others. I hope you enjoy our posts and find them helpful as we hope to inspire you.
I’ve been on hiatus. Or would you call it a vacation? It hasn’t been much of one in life, but online it has for certain.
I just haven’t had the time to put effort into blogging like I need to because the house and the kids have needed me so much more. It’s one of those seasons in life – one where I try to keep up while feeling like I’m just barely making it and trudging along. It will get better but for now, I’m just a head above drowning in it all.
This week has been a medication adjustment week for Jackson. Last week he broke through with a seizure. Just when you think you can breath again, you stop and you realize this may never end.
It will never get easier walking in to see my baby breathless – lifeless – wondering if he’s going to come out of this one – running to grab the Diastat just to make the seizures stop. It’s something only a seizure parent can understand. It’s become a fear for me, wondering when a seizure will hit us next and how many more will follow. Wondering if the next one will take my son from me.
I can honestly say, I didn’t fear this disorder until now. I didn’t fear it with Emma. I was beginning to with Laycie. But with Jackson, fear has set me on edge. Just how easily they could be gone has become reality.
I watch daily as friends battle this same disorder with these same fears I have. I watch daily as friends share how other seizure mother’s have lost their babies – both young and older children. And I see the same fear I carry in their posts, their statements, their shares. Nothing can prepare us for this.
It’s life – and we live it daily because we have to. We watch others who take the simple things for granted: like playing on a slide or crying it out to sleep. Our children can’t do these things without us holding our breath and waiting to hold them just in case a seizure happens.
I didn’t come here to talk about Epilepsy tonight but somehow it consumes our life. It IS our life. There’s no way around it, no changing it, no ignoring it and no moving forward from it. It’s here every day affecting how we live.
And so we wait to see what tomorrow is going to bring.
The next day was no better and at some point I went into the hospital to be checked but was told it was not time yet. My contractions were too irregular.
I went home, called my son’s father, gathered my stuff and ate 4 bowls of spaghetti with light sauce before heading back to the hospital. It was around 4pm when I finally got there.
All seemed to be going well. I arrived and was immediately taken into the back. I was hooked to moniters. The midwife said we’d be a while waiting on this boy to arrive. My DH left to get himself something to eat but before he was out of the room good the midwife returned to tell me something was wrong.
My monitors showed that my heart rate was increasing and my baby’s was dropping. We were in too much stress. I wasn’t dilating past 1 and my boy was ready to come out. He was under excessive stress and so was I. A c-section was necessary for a safe arrival.
By this time, I could feel myself floating out of my body and I knew something was wrong. I was scared for my son and I didn’t want to lose him before I even got the chance to hold him. I immediately agreed to the c-section. It was around this time that my then-husband returned, after my Dad tracked him down, banged upon our door to wake him and got him back up to the hospital. His only disagreement was that he didn’t like my surgeon but by this point I just wanted it all over and our baby to be safe and sound.
I’m am beyond thankful for my son, Winston. He is such an inspiration to me and a huge help. He rarely complains about anything asked of him and he does most things with a joyful heart.
When he was born, I was so thrilled to be having a baby but I was disappointed because I really wanted a girl. I knew God had his reasons for giving me this sweet little boy but I did not realize those reasons at that time.
My sweet boy and I had two fun, learning years with just me and him together. He was such a joy in those times, always wanting to be with me and always loving me regardless of my lacking parenting skills.
When he was two, his baby sister was born. I remember when I came home from the hospital, Win had to have a bandaid on his tummy so he could be like Mommy with her incision. He was and still is the most adorable boy.
As his sister and he have grown, they have become best friends. They don’t always get along but they always love one another. Their love for one another also inspires me and thrills my heart.
By the time baby sister, Laycie, came along, Winston was a pro at being a Big Brother. He’s been so helpful with her and loves the time he gets to spend with her when he does help take care of her. She loves him and her sister too.
My boy isn’t perfect by any means. He was a whiner for a long time, whining when he was upset or frustrated. He also has ADHD, though I’ve never had it officially diagnosed. We’ve been able to manage this, along with his sisters’ health, with routines, structure and plenty of rest. Homeschooling helps to provide these things for all three of them. He has days where he’s overwhelmed and frustrated with things but he’s always quick to get over the humps life throws at him.
His spirit is warm and loving. He’s very shy and struggles with school due to ADHD but he always tries hard. He does his work and helps out with a smile most of the time.
I know now why God gifted me this sweet little man first. He has shown me love like no one before him. He has encouraged me to be a better Momma. He increases my faith in the Lord above.
I’m thankful for this boy of mine, for all of his love and encouragement. For his strong, yet meek spirit and his faithful love. He’s proof to me that God really does know what he’s doing.