There are days like today when I wake up to find my babies are all awake and waiting for me to guide them. There are days like today when I find my sweetest two year old shaky and stumbling, in need of her medicine to fight off the seizures that are just on the edge of her mind. There are days like today when I’m the only adult home, the only one dealing with all that goes on in our life. These are the days that make up my life, the days that encourage me, scare me, show me how strong I am, all at the same time and in the same moments.
When you have a normal child who doesn’t suffer from anything life-threatening, you can take things for granted and look at the world completely differently. It’s a blessing that is easily overlooked. I know because I did it once, when it was just me and my sweet boy. There are days when I long for it to be just me and him again because it was definitely so much easier back then. I could lay in the bed with him and snuggle. I didn’t have three kids to worry about, only him. We could read without interuption and play games, just he and I. Truth is, I barely remember those days because they went by so fast and they were quickly replaced by days of frantic what-if’s and girls needing to be held because they were unsteady. My son is my strength, my inspiration, the one I can count on to be just fine on the days the girls aren’t. This disorder (Epilepsy) has cheated him of much of his Mom-time and his childhood. Don’t get me wrong, he’s still been able to be a kid but there are days when he’s got to be a strong boy and help me through. I know I’d seriously be lost without his helping hands and his kind heart. I used to wonder why this boy came first into my life and now I understand that God’s plan all along was to give me a strong little man to help me through our tough times. And he surely has, every day. He’s sweet hugs get me through it all.
The days when the girls awake, weak and in need of a medicine dose or already ready to go back to sleep (because sleep is a HUGE factor in keeping this disorder managed) are some of our hardest. I never know when I climb out of bed that day if it’s going to be a “normal” morning with no health issues, or a day of loving, holding and praying for the seizures to stay at bay. Many people wonder why I chose to homeschool and a huge factor was days like this. Days that the public school would not understand or be willing to put up with. Days when we just can’t get up and go catch a bus because holding a sister is so much more important or even hugging a little boy to make up for his burdened, yet helpful, kind and strong heart.
Truth is, no matter how normal my girls look, they aren’t. Some people see me as over-protective and fail to realize that I have to be. I have to know where these girls are at every second of the day. I have to know either myself or my son is nearby to make sure they have not slipped into an unexpected seizure unnoticed and alone. Being over-protective and aware is the only defense I have against this disorder. And I am more than aware of my girls signs of oncoming seizures (which are not always dependable, nor do they always show before one comes on).
I am so THANKFUL that my Emmalee, my oldest daughter, no longer requires medication to fight her disorder but that doesn’t mean our fight has ended. The signs are still there, on days when we’ve been out late or have done way too much with no break in activity and on days when she’s not eaten enough or rested. The signs of oncoming seizures show themselves on these days and the ones following until she is settled back into her normal way of life and her normal sleep and rest patterns. She has days where she stares off and is just not there. There are days when her head aches so much from her brain fighting this disorder that she can barely take it (I have them too). It’s a lot for a sweet 7 year old to handle but she does it every day. She is such a bright little girl and so amazingly strong for her age.
Right now the hardest part is watching my littlest angel suffer through this disorder. She has no knowledge of what’s happening to her or why. She takes her medicine cocktails like a pro at only 2 years old. She “knows” without them she feels strange and unsteady and she “knows” this leads to bigger things. Her last visit to her neuro she blocked her ears because she didn’t want them looking inside them. She remembered the doctor was one of the ones who did that at her hospital stay in August. She’s such a smart baby to have to go through so much. She knows she needs her nap once a day to keep herself feeling well. She only argues when the medicine she takes hypes her up and makes her feel strange. On those days, all she wants is her Momma to hold her morning to night.
I’ve been asked in the past why I don’t get a job out of my house and put my children in the public school like so many other parents. Well, days like today are the reason why. I could never live with myself if I put my children into a school or daycare and something happened while they were there, especially when I know they have this disorder. I know it’s more important for them to have time with Mommy, for them to be in their own home so that when they need me I’m close by and when they need a break they have their familiar things surrounding them and their beds to go climb into until the unexpected has returned to normal again. For me, this is much more important than all the money I could have made.
Right now my sweet girl is napping, after her very stumbly morning. When she awakes, she should be as close to normal as it gets for us. She’s had her medicine for her Epilepsy, she’s had breakfast and then her nap medicine to help her sleep. And I’m waiting, for her to wake up, for this disorder to let go of our every day lives (though I know it’s not likely to happen) and for a non-stumbling morning tomorrow. I’m thankful that God blessed us with this disorder because I know it’s something we can handle and it could have been so much worse but I’ll never stop praying for it to just disappear and for my family to be able to have a life that it doesn’t control. For now though, we will continue to be thankful for days like this.