Please find below the letter I wish I could have seen 5 years ago.

This was written a few years ago but thought it might help someone else. xo

Dear Zoe
Your life has taken a turn in the road and hasn’t turned out like you expected. You are dealing with things you have never imagined. Every 1-2 weeks you are in hospital with your youngest daughter and it is both emotionally and physically draining you. That first seizure when your daughter went into status will stay with you for a long time and will never truly go away and will always sit in the pit of your stomach to scare you when you least expect it.

You are always prepared with a bag packed for your daughter and yourself, your handbag sits on the bench and you always have your phone charged and know exactly where the home phone is. Your daughter sleeps in your bed every night and you see smaller seizures that make your heart rise into your chest. You will never have felt the adrenalin in you like you do in those moments. Your daughter will start on medication one after another after another and you will see wild behaviour, tears and frustration from your 3 year old. You will look back and realise there were smaller seizures that you missed the one where you thought your daughter was just chocking on food after vomiting in bed you will realise was a seizure and thank god your husband will be there to clear the vomit out of her mouth. You will administer emergency medication which will scare you every time and you will decide that when your husband isn’t home that you will have to wait for the paramedics to help hold your daughter down to administer it and then watch her turn blue.

You will have to learn to start fighting for things. You will not wait for three months for an appointment with a neurologist you will get on that phone and demand and cry to get an appointment anything to help your child. You will learn so much about the brain and know how to research scholar articles about your daughter’s epilepsy. But there is only so much anyone can help because it’s all about finding the right medications that work without to many side effects or reactions. You will feel lonely and constantly on edge and sad, you will look back on those early days and realise you were in the first stages of grief for something lost. You will keep it together for your child in hospital and then crawl in a corner and cry on a good day, on a bad day you will hold it all in and let it eat away at you.

You will have to give up work to care for your child and will look back and realise how privileged you were to be able to give up work and have that time. You will have to let people know about her diagnoses you will find out who your real friends are and eventually you will make new friends who share the same connection. You will watch people look through you when you’re discussing your child’s epilepsy as sometimes people just don’t know how to react.

You will have to change the way you live, no longer does your child stay up late everything becomes limited until you feel like you are getting control of their horrid epilepsy. You will find a drug that works and won’t see status seizures anymore but you will see something different and just assume it is a milder version of the seizures and you will find out that your daughter was having hallucinatory seizures a lot earlier than you realised. And then you get a break and you start to relax and that is when you start to fall apart you have lived on the edge for so long and your world is so consumed with epilepsy that this break allows you to exhale for the first time in a long time. Life will still be limited slightly but you feel a spring in your step. And then you walk into your daughter’s room a year after your youngest daughter is diagnosed to find your oldest daughter seizing. That phone call to your husband with the simple words “FUCK you are joking aren’t you” will remind you that nothing is static. Again you go through blood tests, CT’s and neurologists to find out what you knew already she has the same time of epilepsy. This is where you catch a little break your oldest daughter will be easy to control on meds and will only have to go into hospital a few times.

You will start having panic attacks after your second daughter is diagnosed, you try and do everything and control everything but your body gives in. You spend weeks inside not wanting to go out as you don’t want to have a panic attack in the car, shopping centre and picking up your children you live every day for a year with an inner tremor but will still function to get your family ready to go out the door each morning. Your will not listen to your husband who tells you take the medication. You think you know better and don’t want to admit that you are defeated by the stress. And you will take that medication and finally start to feel whole again. Your family will change and stress will affect not only you but your husband, children and grandparents. Your husband will not know how to express his feeling and you will force him to open up and start talking to you and then one day he will break through the fog and join you to fight the seizures that have invaded your family.

And then your youngest daughter’s epilepsy will change and she will average 250 out of 365 days and nothing will work to control them again new medications and new side effects. Your daughter will struggle with her behaviour and schooling and you will have days where you just feel so sad that you can do nothing to help. Because you see the hardest part will be realising a lot of the time there is nothing you can do to help other than hug and talk. You will find out your youngest daughter will most likely not grow out of her epilepsy and on that day you will cry in the gutter at work( wish I had a photo of that lol) You will have to fight with school and I use the word fight because that’s what it will always feel like.

Every new teacher and carer will have to be told what to do and then maybe you will get lucky and find people who understand the full impact of epilepsy on everyday life and you can leave your child not feeling sick in the stomach. You need to know that there is assistance out there but you will have to hunt for it there are allowances, services and help available. When you find those support services you will wonder how you lived without it and it will allow your children to be with other families and kids who understand and get you. Your children will rarely get invited to sleep overs and that’s okay in some ways because you don’t have to worry as much, but they need their independence.

You will meet the most amazing people and in some ways will see the gift within the bad times. You will learn that you are an advocate who can stand up for anything as you have fought long enough and you will realise you will always be there for others going through the same thing, you are now a lot tougher. You will look back on your nearly 5 year journey and realise you have reached acceptance of your life and that your life with epilepsy everyday is like a little devil sitting on your shoulder always ready to bite you on the ass when you least expect it. I want to make sure you remember these things. You are so much stronger than you realise and so is the rest of your family.

Your girls will show you how important family, resilience and empathy are. Your will reach a place where you are mindful and present in the moment not peering into the future. Your will find acceptance (lol a whole other story;). You will go forward a new woman a better woman in many ways. But always remember to take time for yourself whatever that may be if you don’t look after your sanity you really can’t help anyone else. You will finally appreciate exactly how luck you are and that things could have been a whole lot worse. I love who you will become and so should you.
Hugs and Kisses to one strong person xo

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