A dear friend of ours passed away on Sunday and it just hits me how quickly things can change. Her death was unexpected and she left behind a Mother who depends on her daily and a new husband with kids-in-love. None of which could have imagined they would bury her today.
I’m in shock. My heart hurts. She was an Aunt to my own children-in-love, a sister to those I love.
God doesn’t promise us when our lives will end. God doesn’t promise us tomorrow. We are given only today, only these moments together until we are called home to the other side of things.
And it strikes me again, how quickly my babies could be gone from me. How easily these seizures could cause their lives to be gone from here. They are fragile and seizures are tough. Their tiny bodies can only handle so much.
I pray for their lives every day. I pray they will each see another day, here on Earth, here with me. It’s selfish of me to want them to remain here with me but time is so short.
I want memories and I want snuggles, love from them, shared with them. I want to embrace them every day. I want to give them a lifetime of love, that only Mommy can give to them.
Today we have control of the Epilepsy. Tomorrow, we may not. I never know when it will hit them, when it will tease me with the risk of their lives being gone. I never know when and I live in limbo as I wait for it to happen.
I cannot relate with the loss that Mother felt today as she said Goodbye one final time to the baby she spent her life loving. I pray daily I never feel her same pain. I surely would not handle it nearly so well.
So with a pain-filled heart, I find myself loving my babies a little more, sneaking nighttime peaks when I’m able to ensure they are happy and safe and yes, still breathing. I rejoice in the morning when they come to say “I love you, Momma”. And I cherish every moment, every breath, every day that we have together here on Earth before we must part unexpectedly to that next place.
Like most Momma’s, I have big dreams every time one of my babies are born. It was no different with Jackson.
Like most Momma’s, my thoughts were not on him being sick – that was a mild thought in the back of my mind – what if he has Epilepsy too, like my girls, but I never thought it would actually happen. Then it did.
Right now, Jackson’s only a baby but I can see him grown, reaching at least 6’4 with blue green eyes, like mine, and a wide smile. I can see his huge feet, and his hands large enough for hard work, but gentle in love. I can see him loving the outdoors – he already does – and working hard.. I can see him learning to shoot his bow, his gun and also see him nailing a deer on his first “real” hunt.
I can see all of these things clear as day, but I know they are not promised by God. The reality is that he may never reach the age for me to see these things. Epilepsy is a thief that sneaks in and attacks without notice and takes those we love in the blink of an eye. Jackson’s lack of control puts him at higher risk for this, doubles his risk for SUDEP – Sudden Unexpected Death in Epilepsy.
Right now, we are evening out on treatment. The Phenobarbital is his 6th drug in two months but his 3rd specifically to control the Epilepsy. So far it’s working. He’s been on this medicine a week and a half and he has had two seizures that lasted less than a minute each, with no after effects. He’s had a few mild absence, too but they lasted less than 30 seconds each. This is a huge change from weekly – sometimes more often – Tonic Clonics (Gran Mals) we were seeing in him. He can even tantrum and he comes out without seizing first.
I’m thankful for these changes. I’m thankful we have control. I’m thankful for answered prayers. But I am not naive enough to believe that we will never face these things again. Medicines become outgrown, treatments begin to fail. At this point, I can only pray this doesn’t happen, pray that treatment continues to work and continue to enjoy the days that God has blessed me with, with my children.
I will never forget the fear I felt in seeing my baby without breath, struggling for life. Neither will his brother and sisters. But we have a faith in God that He will bless our Jackson and our Laycie, that He will allow them to share our life, our days for a while longer and that I will someday see my boy grown and see all of my sweet babies living their life seizure free. Prayer does miraculous things!
I haven’t been blogging much this month. I’ve actually been enjoying a little time off. The weather is gorgeous and it’s inspired me to do a little Fall cleaning around my house. By the time I wrap up my daily to-do’s around the house, I’m really too tired to be inspired to do much online past my reviews and a quick check-in.
Last year, when I as pregnant, I wasn’t into housekeeping much so the house is a real disaster but that’s ok! It’s only one season of our life and it passes so quickly. Then there is the demand of keeping up with a baby, and his siblings – readjusting schedules, homeschooling through and watching him and them learn and grow. It doesn’t allot for a lot of homekeeping time there either.
Add in the baby having reflux, food allergies and Epilepsy on top of it and my time diminishes even more. Now that he’s a year old, and his reflux, food allergies and Epilepsy are somewhat under control leaves me time to catch up on the things I’ve been putting off.
Last week, I emptied an entire box that’s just been piling in my house for four years. This box was full of my paints, my brushes and anything else related to my hand-painting crafts. This hobby of mine was sadly neglected and not organized at all but now all those paints are stored behind my bedroom door in an over the door shoe organizer and it works for now. I can see the bright colors which I attempted to sort them into. I still don’t have a permanent home for the brushes but small steps will get me there. I want a rolling drawer cart in the classroom so they will either go there or in my cubbies under my kitchen table where I now store my hobby items and review things.
This week, I’ve been catching up on work that should have been completed months ago but couldn’t be since Jackson was sick. I’ve also been going through clothes from the building that have piled up. I missed two whole boxes of 6-9 months clothing for Jackson because I didn’t have time to get out there while he was sick. Those will now be sold to buy him new clothes in his size, which adds another thing to my must get done list.
I’ve also be reorganizing things throughout the house to make it better work for us and printing things in prep for school lessons. I just purchased a great set of Eeboo All Around the World Alphabet Wall Cards second hand from Sam @ Sam’s Noggin. I plan to use them with Laycie this year. I know she’s really going to love those!
We also have our set of Touch Math that we will continue to work through with Laycie this year. She really loves the hands on uniqueness of this program. It really works well for her. She will also continue to use her Logic of English curriculum that we reviewed last week. Another program that she really loves!
For the next few weeks, I plan to clean, clean, clean and organize, organize, organize! I will do my best to update when I can. I have a few plans for the blog, too, that I can hardly wait to put to work.
But for now it’s just going to have to wait.
These days I feel like I am just floating through. My mornings are filled with watching Laycie, making sure she sleeps long enough to keep the seizures away. My afternoons are spent waiting and watching for Jackson next seizure.
We are stuck in limbo… waiting. There is nothing to do to prevent them at this time. There is no way to know what will happen next.
Because Jackson was on so many medications last month, he needs a brief detox before starting the next one: Phenobarbital. He will start the new medicine this coming Friday but until then he will be on Klonopin while we give his body time to adjust from the last medicine.
This makes 6 medicines in less than a month that have been absorbed into my sweet boys bloodline. I don’t even want to think about how this has effected him and pray that it really hasn’t. I also pray that the Phenobarbital is the last drug for at least the next year for him.
I’m thankful that my sweet Laycie has remained controlled during this time though things are far from perfect with her. She’s lethargic in comparison to her normal self. She’s picky when eating. She melts down mid afternoon. But there are no seizures, save a few mild twitches through the night.
So this is where we are at. God is surely holding me up, because I don’t know how I manage to make it through the seizure every few nights right now. I’m afraid to leave the house for him seizing. I’ll be so thrilled when we have control again.
There are days when I just don’t want to write. Days when I’d rather shut everything out and surround myself with my children. Days when I don’t want to admit the monster is lurking, watching us, waiting to attack when I least expect it. I’ve had several of those days recently.
It’s hard to ignore though, when you are laying in bed with your significant other, with two littles in between you. It’s hard to ignore when those littles begin twitching through the night or smacking their lips in a rhythmic pattern that isn’t normal. It’s hard to ignore when those littles are restless, bodies taken over by that unseen monster that you’ve been praying hard would just go the Hell away.
We’ve been through a lot lately – yes, that’s very much an understatement. We’ve been through Hell lately, every last one of us. I question when it’s going to stop and what the purpose is in it all.
Right now, today, at this very point our lives have slowed down. There has been no seizure in a week. The medicines seem to be controlling though Laycie’s still isn’t quite perfect, it’s getting there. But my fear is the false sense of security, the calm before the storm before it all breaks lose again.
Last week at this time, we were battling with the Epilepsy Monster. My poor sweet Jax was falling hard to this beast. Thursday he had a Tonic Clonic and an ER visit. Friday he had back to back Tonic Clonics and another ER visit, followed by a weekend stay at the Children’s Hospital. We repeated his EEG and found NOTHING. We did bloodwork and found NOTHING. We raised his medicine dose and then I gave up and asked to come home. There was nothing to be found and no reason to prolong our stay there when we could go home, be comfortable and wait it out in our home.
Last week was Hell and will stick with me just as the day Laycie had 9 gran mals and was Status Epilepticus for 13 hours has. I will never forget my Mother calling me immediately after closing the car door to head to the store for diapers last Friday. I will never forget how my shoes stuck in the water soaked puddles as I attempted to run in the house. I will never forget how my baby, my sweet boy laid so still and lifeless in my Momma’s arms when I opened her door. How she raised him up in her hands and he was just gone, so quickly gone and there was absolutely nothing I could do but pray and wait.
People tend to look at children, at people with Epilepsy and think there is nothing wrong. A perfect child with a hidden secret that can’t be seen is thought of as being normal. Our life is far from normal and days like the ones we had last week are days that I hate. The days when their is nothing that I can do but pray for my children, pray for my olders to be patient and know I love them. Thank God that my Emma, my oldest daughter has seemingly outgrown this beast. Pray that her sister and her brother soon follow her in that, though I know it will be a long road to get there, if we even do.
I have hope. I have faith. I have all the things needed to get through this but it’s not easy. I don’t like to even acknowledge it or talk about it but I know I have to. I feel called to. And perhaps that is God’s point in gifting me with 3 out of 4 gorgeous, sweet children who suffer with this disorder. Perhaps he simply wants me to share, to speak out, to acknowledge this beast and it’s impact on our life so that others can better understand it and yet others won’t feel so alone.
I long for a normal life with normal kids who have normal illnesses like colds and such. I have a normal life with children that have been blessed with Epilepsy. This is our normal. These are our days. This is our life, impacted to the fullest upon every day. Without God, I could not manage, could not make it through, could not even begin to deal with any of this. I am thankful always for his presence.
