getting through

June was a pretty tough month for us. Don didn’t work several weeks. There were no calls for a carpenter. This makes things hard for sure.

July didn’t start that great either. I had a brief stomach virus that really hit me hard. Thankfully, I was the only one. I gave the dog a haircut too and was down for two days with my back hurting (whiplash from a car accident long ago).

I ran out of my medication for my bleeding and just let them stop for a few weeks to see what would happen. It returned. I started the med back after a few days of trying to see if my body would balance out. It didn’t.

I know my iron is low again. I’ve been trying to build it up with lots of Tuna and Spinach but it’s slow going since my body rejects iron instead of absorbing it. I know I’ll get there though.

I know someday I’ll look back and see the lessons in this time but for now it’s just a struggle. I’m too tired to get much done except the basics with my babies. Next month is home inspection and our lease renews so I’m hoping I can get the house in order before then. It’s a slow process but the kids have been amazingly helpful.

We’re also working on new routines. So far things are going well with those but routines take time to master. I’m proud of my kids hard work though.

So this is where we begin our July. Just trying to get through our day to day together. It’s slow going but we will get there.

Until next time…
Dana

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.

Beginning July 2017 {Thoughts From Me}

Weak but Blessed in the Normalcy {Epilepsy Awareness}