Rob and I have been married for almost 9 years and in that time there has been many medical dramas because of the epilepsy that Rob was diagnosed with at age 6. Well last week we had another medical incident; it was serious enough that an ambulance had to be called. Rob having seizures has sometimes been a part of our daily routine and normally I know how to deal with it and stay calm at the same time; however last week was something I don’t think I’ve had to deal with in all the time we’ve been married and I actually went into panic mode.
In the days leading up to the incident, Rob had realized that he had missed a dose or 2 of his medication and would try to make up for it which would have been fine with most of the medication he’s on but one particular one just increased the level in his system and the level rose to a dangerous level. The amount of this medication in his system put him in an almost comatose state and it took the medical personnel about 6 hours to have him more alert and responsive.
On this day I felt torn between being with my husband or being there for our younger children who were at home, fortunately a friend who lives in our vicinity was passing by and when she saw the ambulance she came in and took over with the children as I was in no state to make decisions. My sister-in-law had arrived earlier and taken over with dealing with Rob and was the one who told me to call the ambulance. She was also willing to pick up our eldest boy from school if need be and had taken the initiative to phone the school to let our boy know that she was picking him up. Though by school pick-up time I was in a calmer state and able to pick him up myself while my friend looked after the younger two kids at her place.
Epilepsy has made life hard for Rob, because unless you see him have a full-on seizure or know about the epilepsy you wouldn’t know it affects him, this has led to some well-meaning but misplaced comments. I’ve had people comment asking why he can’t work “as they know people who have epilepsy and work” more often than not these people don’t realize the extent of the epilepsy. In Rob’s case it’s not something you can understand by reading a text book or comparing it to others, as very few people in New Zealand have it as bad as him. We’ve even had some medical personnel try to treat him like any other epileptic which has not helped. Rob seems to know more about his condition than most doctors he has come across.
In my opinion, one of the hardest things for him is the fact that for the meantime having a job/career is not on the cards for him and that out of necessity he is required to rely on others for transportation. There are times when I can’t leave our kids with him as he’s in no state to watch them and be responsible for them and when that happens he feels hurt; not being able to leave them with him can also be an inconvenience for me yet that it is sometimes the way things play out. Rob probably feels at times that he’s not living up to society’s expectation of men and that makes it hard on him as well.
There have been times when people have made snap judgments concerning his intelligence because his speech can seem slow due to a stroke on the operating table at age 11. However he is very intelligent and if someone actually had a proper conversation with him they would come to that realisation.
Many married couples have their rough patches and sometimes it feels like we go through more than most; and if I’m honest there are times when I feel like ending our marriage but then those storms past and the sun comes out (until the next storm). It’s the good times and loving moments that make it worthwhile because no matter how bad things seem at times I often just have to ride the storm and hold on until the sun comes out which can be easier said than done, but I choose everyday to hold on and wait for the storm to pass as it always does
Coming from a broken family my childhood was anything but carefree, there were some fun times and carefree times but it wasn’t a constant. As a child I guess I felt confused about why my parents fought, I mean at the time I probably thought that only children fight, it was just a part of having siblings. Now as a parent myself I understand that everyone argues; sometimes it means that love has gone but other times it’s just a clash of differing expectations/opinions. When differing personalities are joined, there are sure to be disagreements just as there would be in area of life.
As a mother I try my best to give my children a stress-free childhood however due to situations beyond my control I’m not sure how feasible it is for my children to have a completely stress-free childhood. I love my children beyond the beyonds and would give my life to protect them; unfortunately life itself is not carefree. With my husband, their dad, having epilepsy they are learning about compassion for others and that not everyone is “normal”. For my kids living with someone who has epilepsy will give them an experience of people with epilepsy more than what their peers may experience.
I myself have to deal with anxiety issues and try my best to protect my children when the anxiety overwhelms me as I want my children to be children as long as possible. I don’t want my children to grow up too fast as I did. It’s not fair on children to put adult problems on their little shoulders, for our littlies to worry about us adults when being a child in the 21st century can be difficult enough
Children that grow up in households that are far from stress-free may grow in ways that other children with easier lives may not. Though of course this is all relative, having a stressful childhood can also have detrimental effects on some children, I think a lot is determined on the personality of the child and whether that child can break through the negativity that he/she has had to live with. Some children may build “walls” to protect themselves and never know to break through, yet others may build “walls” but eventually allow the “walls” to weaken.
Everyone has different experiences as children and often that may determine how we are as adults, then again there are times when adults need to adapt to the world around them and if they can’t, they may find that life is more stressful than life is for others.
I did a previous blog post called Married To Epilepsy and had a comment how I wasn’t married to epilepsy it is my husband that has epilepsy – in many ways that’s correct; however there are times when the epilepsy feels like it is at the forefront. Over the last few days I have spent my time between home and the I.C.U at my Husbands side. He was admitted to the I.C.U after E.D. could not get the seizures under control.
My husband is the one that directly affects, yet it does indirectly affect me. when my husband is going through a bad bout then I’m the one that has to be there not only for him, but to make sure that our kids and the housework is not neglected.
So though someone diagnosed with epilepsy is the one directly affected, indirectly it also affects their loved ones. I know that what my husband goes through is extremely tough but what cannot be ignored is the affect it not only has on myself, but also on our children and family and friends.
My husband doesn’t like being labelled “an epileptic” so though I could have titled the blog post “Married To An Epileptic” – that would have been disrespectful to my husband. When things are going smoother, you could almost forget about the epilepsy and things could go smoothly for days – and then again there will be times when they are rough.
So I am married to Rob who has epilepsy but there times when it feels like I’m Married To Epilepsy.
Most of the blogs I write will be about the kids but now and again I will write a piece about other aspects of my life.
One particular aspect is that my Husband has epilepsy and at the moment it is not going so well. When Rob and I got married, I didn’t really have any idea of what I was in for; I had seen him have seizures before but there was more to the condition than that. The epilepsy that affects my husband puts him in the top extreme cases in New Zealand. In the first 3 months of marriage I was pretty much thrown in the deep end and had to swim or sink. Eventually the epilepsy was a bit more under control.
However in the last few months things have progressed badly to the point where even his specialist is concerned; at the moment my husband sleeps a lot because of the amount of drugs he takes. Which has left me in charge of keeping the house clean (fail), trying to get the kids dressed, fed and bathed every day.
With all this on my shoulders it doesn’t leave much time for me; until things get better I have to put myself to the wayside – thankfully I have friends and family that have been a real help and I am so grateful for.
Epilepsy is very rarely something to take lightly, sometimes there are cases which are controlled; on the other hand sometimes – like in my husbands case they are doing there best just to survive. Just because you may not see them have a seizure or in many cases they look like any other “normal” person does not mean that snap judgments can be made about their life.
I love my husband very much, our kids love their dad – but I hate what epilepsy does to my husband and that at the moment with how serious it is, I hate what it is doing to us.
I’m not normally one to put my bad stuff out there as I’m not interested in pity parties, but some days it feels like a constant fight to just get through the day; some of the things that make me smile are the hugs and smiles from the kids – or when the boys are actually getting along.