Last night Josh had intense seizures. It lasted for a few hours. He had difficulty talking again. Thankfully that's not an affect we see too commonly. The doctors said it happens when the seizures strain the vocal cords. Sounds come out but its difficult to form words. It's usually accompanied with full body seizures, arm and neck ticks. After it's done he's usually left confused, tired, and a little dazed and extremely sore.
When the harsh seizures come the recovery time is unpredictable. It can take a few hours or several days. When they come he sleeps more. It's his body's way of saying, "No more- I need to recover". As one doctor put it, his body shuts down. Waking him up can be extremely difficult.
With all this, his doctors designated me his caretaker. I'm to first and foremost ensure his safety, monitor any new progressions or changes of the condition. Also, when he's recovering and resting I have to fill in and oversee the needs of the family and home.
Josh would say not to mourn his condition. He never seeks attention or asks for compensation for his condition. Instead he says we endure. We endure the hardships to receive rewards. Rewards won't come without overcoming a difficult time. <<Oh, it hurts to even say it.>> No one wants to endure hardships.
I'm still working full time using the FMLA as needed but I'm having a difficult time fulfilling everything asked of me at work and all the responsibilities I need to fulfill at home. I'm wondering if I should even be working. I know I'm not strong enough to do this alone.
God told me to focus on his partnership this year. To rely on Him to get everything done that I cannot fulfil. I do my part. I work when I can work. When I work, I give them 100%. But, when the family needs me, I give them 100%. Then I rely on God to work in my favor.
I am blessed. Things are getting better. But still our life is far from normal. Normal expectations are difficult to fulfil. There are days when I mourn for our old lifestyle we had together.
Looking back when this all started we never had a good day. (Well, everyday was a good day. He lived. We were together. My boys still had their father. The good days just looked much different. The good days weren't like the good ole' days.) The good days were when Josh slept all day - literally. Because that meant we were out of the woods for a bit and the recovery process started.
On the average day, he had violent seizures frequently. There was a period of time when he couldn't walk or even control his legs. I remember on multiple occasions having to lift his foot because he couldn't feel it. Many times he would try to put it down sideways and would nearly fall. I'm thankful for the times when people were around to help stabilize him. He is not a small man. There were times when all 300 pounds went crashing down and I was not able to stop him from falling. I remember one time I was able to guide his fall into a chair. The force of the fall tipped the chair over. He hit his head on the wall. I was terrified. Two minutes pass and I was unable to wake him. Just as I go for the phone to call 911 he started to move. That's when I knew he was okay.
(Goodness... that's a hard memory to share. It brings back all the feels. Excuse me while I pull myself together.)
His grip and dexterity were also affected by the condition. For a long time he wasn't able to write his name. He wasn't able to hold small objects. He wasn't able to grip a cup and would often drop his drinks. He would get so angry at himself for dropping the glass because I would have to clean it up. He has always had a good heart. We started keeping straws in the house to help him. We would use tumblers with lids to lessen the spills. He also had a difficult time swallowing and would often choke on his food. He even had a difficult time chewing. (That was scary too.)
All this being said, you can maybe understand now when I said, the better days were when he slept. That meant he was safe. That meant I could rest.
Today the good days are almost relative to normal. He can function and look normal. His grip has gotten better. He can safely eat his meals and can usually write his name. He does lose his balance but he's gotten better at catching himself and compensating so he doesn't fall. He can sometimes sense the oncoming of the larger seizures and can get into a safe place before they break out. He can talk until a vocal seizure hits. He can walk with the help of a cane and his endurance has greatly improved.
I say "relatively normal" because it's not normal. It only appears to be. He daily battles nerve issues. Sometimes he can't feel the heat of a frying pan, or the heat of hot water or freezing temps. The extreme temps outside can also trigger a reaction to his nerves that makes controlling his limbs more difficult. He experiences numbness and tingling down the right side. He has internal tremors that we can't see. If you press against his skin you can feel the muscles contracting. He also has external tremors that are more visible. He experiences internal pain he would describe as cold lightning that shoots down his spine. He compares it to his tailbone being connected to a car battery. He has internal seizures that feels like it wraps around his rib cage. Those put a lot of pressure and pain in his upper back and chest. He has blank seizures. That's when he just checks out. He goes unresponsive for a few seconds and when he comes back, he's usually confused about where he is and what he was doing.
We're still working through confusion and memory loss on a daily basis. Sometimes he gets his memories confused. There was a season when he couldn't remember if we were married. Thankfully the pictures we had at home would give him peace of mind. Or he would come looking for me. When he found me, that's when he knew it was okay. There was a few occasions when these happened when I was working and it would take hours of confused questions before he came around. He thought we were divorced or that I had left him. Usually a phone call or a text would bring back the truth.
So we are much better off compared to where were were four years ago. Shoot. I'm thankful we are not where we were two years ago. He really has come along way. So our level of normal is not really normal at all. We just found a way to make it work for us and our family. Jesus. Jesus is the ONLY way we have come this far.
The doctors gave me FMLA paperwork as his acting caretaker to make sure the family had a safe environment. It also helps protect my job. We've been through a lot together. And we needed all the help we could get. But now, real time issue- I feel guilty for using the FMLA time that I've been given. I always do my best. Somedays my best just doesn't feel like enough.
When I use my FMLA time at home, it's never clear about when the recover will begin. How will the recovery look? What will his pain level be? What will he remember? Even today four years later the condition is unpredictable at best and difficult to manage at worst.
Some days my job is to monitor his recovery and watch for differences. Some days my job is to help him walk. Some days my job is to help him with stretches to help relax his muscles. Somedays he is completely independent and doesn't need my help at all. Somedays he is overly confident, thickheaded and needs to be reminded that he twitches. Ha!
God delivers us daily and gives us the ability to endure and get through the day. Endurance.
It's not easy. Living this life is not easy. I'm not sure what will happen with my job. I'm not sure what will happen with my husband. I'm not sure how the lifestyle we're living will effect our kids as they grow. This has gone on for years. We do know he has been diagnosed with a neurological movement disorder, but the specific disorder hasn't been diagnosed. So there are still many aspects of this situation that we don't know about. The doctors have said this could be a lifetime condition. They've not promised treatment or cure. They've not promised healing. They said what they have seen in similar cases, some people recover and others don't.
There are so many uncertainties. But my one certainty is Jesus Christ. There's a scripture that I love, “My grace is sufficient for you, for My strength is made perfect in weakness. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong."
It reminds me that when I am at my weakest that's when God can step in - if I let him- and his perfect strength will cover everything that I can't.
So with all that I don't know that's happening at home... to add more uncertainty at work is difficult. That's why it's so important to partner with God. God works in our favor. We can count on him to never leave or forsake us. We can count on him to work through all things for our good. We can trust that God was the beginning and the end and he knows exactly what the situation is and how the situation will unravel. He knows exactly what we need right now where we are.
This is such a personal letter to write. It's difficult to be so exposed. Who can we trust with such personal information? Josh hates talking about himself- but YES he did approve this message. But I also believe that if I'm struggling then maybe there's someone out there that's struggling too. Maybe they're struggling silently and needs to know they're not alone. To whom I would say, "You can do it. We can do it together."
"And we know that all things work together for good to those who love God, to those who are the called according to His purpose." Romans 8:28