Emotional support, Epilepsy and parenting

Living life on high alert.

The phone rings. I receive a text. Someone calls my name from the other room. There’s a strange noise. These are all moments that currently have my heart leaping out of my chest. The worry isn’t just your ordinary everyday worry. It is a deep all-consuming worry that sticks in your throat and makes your chest feel heavy.

Each time W has had a seizure it has been a shock. They are completely random and we still can’t detect noticeable triggers. I’m on high alert 24/7.

Sleep. I don’t think we’ve had a settled night since October when the Tonic-clonic seizures began. We bought a cheap video baby monitor in a hope to alleviate some anxiety. The problem is…every single sound makes us jump out of our skin. The panic that we might miss a seizure and he is laying on his back, without help, often invades my dreams.

Quite understandably, I also don’t want to be more than 15 minutes from W at any given time. Fortunately, I work 5 minutes from his nursery and approximately 10 minutes from my home. Each place we visit I also check for phone signal/ or if there is close surrounding help if something did happen. It’s sometimes a hard decision between making sure that W is ‘living life like a toddler’ and making sure that he’s safe. Large soft play area’s for instance; I’m sure W would find exciting, but the idea of not being able to see him for periods or time or him having a seizure high up fills me with dread.  

Medication worries us. What if we forget? What if he hasn’t eaten enough food before it and it plays up his belly again? We have set alarms on both phones and regularly check each other. We make sure we are almost over stocked in the house. The repeat prescriptions can’t be forgotten and we also pray that he keeps the dosage down, so we don’t have to decide if it needs to be given again or not.

We are finding the most difficult thing after the Epilepsy diagnosis is there is no certainty. No one can tell us why. No one can tell us when. No one can tell us if it can be controlled. No one can give us any assurance. Everything is completely out of our control.

Deep breathes, count to ten and plough on. We got you baby. We’ll beat this thing and together we’ll stay strong.

Lots of love,

Clare

6 thoughts on “Living life on high alert.”

  1. This brought back so many memories. I wish I had answers for you. Be sure to keep records on every side effect, seizure and medicine change. Pretend this is two hugs. One for you and one for little W. Bless you Mama Clare.

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  2. Clare, I have found your blog from having read W’s moment on Young Epilepsy’s In the Moment website. We have been living with epilepsy (our son) for 15 years and everything you have said reflects our own story and experience. The fact that you have voiced openly in W’s moment, that you have started the blog for your own wellbeing and as a support for others is huge. Our family talk openly about epilepsy, actively campaign and ‘do our bit’ in lots of different ways to raise awareness of epilepsy and its life changing impact. One of my favourite quotes is ‘When we establish human connections within the context of shared experience we create community wherever we go’. Thank you for sharing your experience. The strength, love and support we get from our Purple Family are a vital component in our bumpy epilepsy journey X

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    1. Hello, thank you for this lovely message. The Purple family is definitely making things easier 😍. Especially considering it’s rather difficult to speak to specialists. I’m hoping to create local meet ups. I hope your sons Epilepsy is controlled? We are still feeling on edge at the moment and just hope that the medication will work. We are still waiting on EEG results to hopefully diagnose something more specific. Thank you for reaching out. It’s made my day xxx

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  3. I can sympathise with your greatly. My son, now 4, started having seizures at 5 months old and has only recently received an official diagnosis of epilepsy. I too jump out of my skin at any sound on the baby monitor. I’m finding it so hard to get any rest at the moment especially as most of my sons seizures are nocturnal. I’m looking forward to reading some more of your posts.

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    1. It is horrible isn’t it? Tonight I randomly repacked the hospital bag
      No idea why…I just feel the need to have something to grab and go. I hope your little one is on medication and they are helping to control seizures a little? I hope to post some more soon 🙂 We are currently waiting on his EEG results. Thank you for reaching out and commenting. Best wishes x Clare x

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