Epilepsy & Babies. The Reality.

When trying to conceive it’s hard not to let your imagination run wild. Dreaming of having a baby and what your life will be like. These dreamings are often full of happiness but lately our dreamings have been a dose of reality. Our fight doesn’t end once we have a baby, in fact that starts another battle.

I have been full of excitement and happiness since we heard from our IVF clinic. My husband on the other hand is having a bit of a freak out. After sending back the forms we could be hearing within two weeks about a patient information evening which is the first step before our one-to-one appointment. I have been reading more and more about what the IVF process involves and what my body will be going through. My husband is not so focussed on the IVF treatment but the reality of us having a baby.

As regular readers of this blog and my followers on twitter, will know I have uncontrollable degenerative Epilepsy. This means my seizures can’t be controlled by medication and my Epilepsy will only worsen. I have three types of seizures Myo-Clonic, Absence and Tonic Clonic. Myo-Clonic seizures are where my leg or arm just jerks for no reason, this mainly happens when I am tired. Absence seizures look like day dreams, I pick at my clothes and seem to stare off, these can last anything from seconds to an hour long. I have Absence seizures daily. Tonic Clonic seizures are the stereotypical seizure people think of with the falling to the floor, tensing etc. I have these regularly, between fortnightly to monthly if I’m lucky! As a sideffect of my seizures I have dentures, scars all over my body, an enlarged tongue to due scar tissue from biting it during Tonic Clonic seizures and memory problems. My Epilepsy has lots of triggers including stress, low blood sugar, lack of sleep and I am photosensitive (which is not as common as people think). I think with the IVF referral coming through and it suddenly becoming real not just a concept for the future, my husband is thinking of the reality of our future. The reality of me having Epilepsy and thus the safety of me being a stay at home mum.

My husband’s mind is racing with what ifs? Now do not get me wrong my husband is brilliant with my Epilepsy. He has always been supportive and embraced our life together no matter how hard it got. We have attended information seminars, neurology appointments and had pre-conception counselling, we have not gone into this unprepared. Having a baby is hard for everyone. Sleepless nights, hormones raging and new routines. My husband is just worrying that we have all the normal (but statisfying I hasten to add) hardships of having a child with the added hardship of Epilepsy. It’s hard not to listen to these worries without taking it personally. I’ve had so many people over the years ask if it’s safe for me to have children, if I’m being selfish with wanting children and if it’s better for me to work than be a stay at home mum. People don’t think how much their questions can hurt before they ask. The answer is as long as there are plans in place you can be a stay at home mum even with uncontrolled Epilepsy. 

After discussing his fears my husband and I came up with a few plans. Now I know it may seem like we are running away with ourselves as we haven’t even started our first IVF cycle yet, but we decided these plans needed talking about. Even if they aren’t perfected until we are having a baby it helps to put our mind at ease. We already have an emergency contact list hung up on the wall so the first thought was to update and perfect that. We will make a rota of people each assigned a specific day. If I have a seizure I will look at the chart, ring the person whose day it is and they will come over. This way I can get the rest I need and nobody has to worry that the baby/child isn’t being looked after. We have also decided that we will be investing in a pram with a dead man’s brake on it as this is the safest way I can take the baby out on my own. We will have a baby pen filled with cushions etc that the baby can go in when older out of harms way if needed. A car seat so I can carry the baby around safely. All in all things “normal” people with children have but we will have them for different reasons!

It isn’t trying to conceive when you both have fertility issues. IVF isn’t an easy thing to do, we’ve barely started on our journey and I’m already feeling a bit overwhelmed. We don’t even know if we’ll be lucky enough for this to work but I’m going to try my damned hardest. One of the positive things about having Epilepsy is that it has taught me that just when I think I can’t handle anymore I prove to myself how strong I really am. Epilepsy is more than just seizures. It’s made me a fighter. I may have to plan things before I do them, I may have to always make sure someone knows where I am and I may always have to be aware of my safety but I have Epilepsy, it does not have me. It will not have my motherhood either.

Blog/Tweet soon x

As always please do comment on here or tweet me @HopeEpiMum


3 thoughts on “Epilepsy & Babies. The Reality.

  1. girl4182 says:

    I’m a big fan of making plans and finding solutions to things before they become problems. I think it’s really smart that you’re both talking about this now so that you’re on the same side when the time comes. Good luck!

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