I blame myself for my sons Epilepsy

I blame myself for my sons Epilepsy

JUST a few nights back, we were watching a series, and the person in the series unexpectedly had a seizure. When Liam saw that 5 second scene, he asked me what was happening so I explained that the person was having a seizure. Then he said to me, “Mommy, I hope that NEVER happens to me“. And I replied to him, “I hope so too my boy”, because that was all my heart allowed me to say to him at that moment.

Monday, the 1st of September 2014. The bluest of all Mondays. A day I will never forget. It was my first day at my new job. As was any Monday, I dropped off Liam at creche and off I went to work. I was keen to get started with my new beginnings as I had worked for almost 10 years at my previous job and it somehow felt like I was about to start a new life. Little did I know, that my life, my outlook on life and everything in my life, would change forever from that day on. And not in the way I expected. The guilt seed was planted in me that week. I blame myself for my sons Epilepsy. And this guilt is forever growing in me.

Halfway though my first day and my phone was ringing non stop (it was on vibrate), but I ignored it. When I eventually looked at my phone I saw that it was my husband trying to reach me. I was irritated that he had been so insistent on speaking to me, having well known it’s my first day at a new job. I mean, what could be SO important? Then he called me on the landline. He sounded distressed. All he said was “TRACY” and I immediately knew that something real bad had happened and within that split second, I thought that someone close to me had died.

I couldn’t think of anything more urgent to call me about. So I breathed, and asked what is wrong. “Liams school called me and said that he had a seizure and we need to get there asap!”

I blame myself for my sons epilepsy - South African mom blogger

Every, single bone in my body felt stiff, my heart started racing, a million thoughts were running through my mind and I couldn’t speak for at least 10 seconds. I was shattered and I was confused. I was panicking. Obviously something must have happened to him. He probably fell off something while playing and that is why he had a seizure. Or perhaps he knocked his head somewhere and that caused a seizure.

I hung up, let my new boss know that I am leaving for the day and rushed off to my child. Great way to start a new job. But all I could think of, and rightfully so, was that my child needed me and I needed to get to him in lightning speed. So off I go. As I was approaching the school, hubby called and told me that Liam is not there and that the school had sent him with an ambulance to an emergency unit. Again, every, single bone in my body felt stiff, my heart was racing and a million thoughts were running through my mind. So many questions and no answers. As I’m typing this, my neck pains and my heart hurts. I feel the very same hurt and helplessness I felt 3 and a half years ago.

We finally arrived at the emergency room and there he was, with many different plugs and cords and things attached to him. He was unconscious. Why won’t he wake up?  “Mommy is here Liam, just wake up and tell everyone you are ok!” What is happening to my little boy? I just cannot comprehend all of this. I just dropped you off at creche this morning and you were well and happy and full of life as you usually are. What is going on? Was it something you ate? What did I do wrong?

A post shared by Tracy Dawson (@liam.and.cole) on Liam regained consciousness about 5 hours later. It was the longest five hours of my life. We stayed over at the hospital for that week. He was just over 5 years old. A healthy, full of life, happy and loving 5 year old little boy. The doctor prescribed Epilum and Liam continued the treatment for a further three months.  He suffered all kinds of seizures that week. Both full on body shaking seizures and subtle seizures. I remember each seizure that I witnessed that week. He was brave yet petrified during each each seizure and I felt all of his pain with him. All I could do was hold his hand and let him know that I was there. I felt helpless, afraid, shattered and bewildered.

I had no knowledge about seizures then and didn’t personally know anyone who had epilepsy. Also, I didn’t know that I had so much to learn and that epilepsy is a broad spectrum. He was not diagnosed with epilepsy that week. We so badly wanted to believe that it was just a once off catastrophe and that it will never happen again. We were given so many possible reasons for the cause, but nothing solid to go with. So we went with what we wanted to believe and hoped that it would never happen again.

A post shared by Tracy Dawson (@liam.and.cole) on Sadly, that week was just the beginning of a long and tough epilepsy journey for us all. We still do not know what caused those seizures and the many that occurred thereafter and we probably never will know. We’ve endured many hospital stays, suffered many heart breaking medication side effects and learned major life lessons throughout this process. It’s been an emotional rollercoaster. I became obsessed. And I needed to know why this had happened to our son. I needed closure. Was it something I did wrong? Was it his vaccinations? Was it a medicine that didn’t agree with him? Is it genetic? Did I allow too much sugar, or too much time in front of the tv?

I blame myself for my sons Epilepsy

I spent hours upon hours researching and trying to find answers. Until I let go. Letting go was the best thing that could have happened to all of us. It was not until then, that everything started getting better and coming together. He finally found a medicine that agreed with him (for that while). I was happier, he was happier. Until he got sick again. That is when the mom guilt kicked in yet again. “This happened because I let go. How could I have let go? How could I allow this to happen to him?” I feel like a bad mother again. All over again. How am I supposed to cope with this constant mom guilt of which I don’t even know whether I can be blamed for certain?

It’s a process of continuous letting go. And letting go is so dam hard. It is the hardest thing to have to do. But it’s what keeps me going. Letting go of the bad, and holding on to the good. Because in all my parenting decisions, I know that I’ve always done what I felt was best for my child, at the time of making the decision. I know that I will never be the perfect mother, but I will always be perfect for him. I know that I will not always make the right choices, but that I have made the choice that I felt was right at the time. Yes, I blame myself for my sons Epilepsy, but I am slowly letting go of all the mom guilt.

A post shared by Tracy Dawson (@liam.and.cole) on Tata for now

Tracy xx



 



11 thoughts on “I blame myself for my sons Epilepsy”

  • Thank you for sharing your story. My heart goes out to you, your boy and your family. I cannot imagine what this feels like. I hope you can find strength to let go as time goes on.

  • Letting go of the way things were before and accepting a new normal is very difficult. Wishing Liam a great life with you by his side. All the best; feelings of guilt is part of the journey.

    PS-does Liam know about his seizures?

    • He has recently been able to tell me abit of what happened after he has had a seizure and I have told him that it’s a seizure but he hasn’t really realized what it is because when I told him about the person having a seizure on tv, it was if it was the first time he had heard of such a thing.

    • Such a brave child of mine you are! You a woman now and a mother but I still see you just as my child and I feel you pain in a double dose for you and Liam! And he is such an amazing , loving and brave boy! We love you for all you do for your beautiful kids and please my love it’s not fair to blame yourself! He brings us so much joy in so many ways an even in his moments of discomfort he always maintains his beautiful loving inner self . Always in my heart and that’s where he remains. Keep up the good work! You are doing a fantastic job. Love you forever😘❤️💕🌺

  • Sweetheart, being a parent to a child with specialised needs is hard enough without beating yourself up with unearned and undeserved guilt. My heart goes out to you and I’m so proud of the strength you’ve had so far. You are a fierce and awesome mama. Please be easier on yourself, take care of YOU so that you can continue to he everything you need to be. And remember… God loves you and He hurts and celebrates with you.

  • Definitely not your fault – good for you for starting to realize that. Rather than asking “why” it is better to take a pro-active approach.

    My mother (66) has brain cancer and has been getting seizures as a result. She is also on Epillim and the side effects are not so great, but it is better than the seizures.

    That aside – I was wondering if you have heard about the Keto diet as a nutritional complimentary treatment? Have a look at Matthew’s friends. https://www.matthewsfriends.org/about-us/our-stories/children/ It might help your family as well.

    Our family went low-carb as a way to lose weight, but we will never go back to any other lifestyle as the health benefits are just too great. Psoriasis – gone, Allergies – gone, Asthma – gone, gum disease – gone etc. etc. We are also raising our 5 year old daughter this way and it has actually been surprisingly easy to make this adjustment.

    But whatever you decide – don’t ever blame yourself!

  • I’m not sure why you are blaming yourself here. Absolutely not your fault at all. You have been doing all you can. Both a childhood friend and my husband both live with epilepsy and they don’t blame their parents at all. It’s not anything you did or didn’t do.
    Having said that my heart breaks for you that you went through that experience, it must have been so awful. There’s nothing worse than seeing someone you love in pain. xxx

  • I can only begin to imagine what you went through when you got that call and it is every parent’s worst nightmare. You are incredibly strong and clearly an amazing woman and mother. Liam is very fortunate to have such a warrior mom protecting him and caring for him. I hope that you will one day get the closure you need and overcome the mom-guilt once and for all. <3

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