In need of a little faith

Ok so being asked to write here is such a big deal for me. A big thank you for Chimmie for offering to find a space within her dream for me. I struggled with what to write because its not everyday you are asked to be a guest blogger! I may have bragged to a few 100 friends about it.

I wanted to write something airy and fun but sadly I haven’t been feeling so airy and fun these days. So here goes. I have a gorgeous three year old and her name is Izzy. It’s short for Isobel. She’s smart as a whip, talks for Africa and has this capacity to love that keeps me in awe of her. When she was almost 2, she had a seizure for the first time. Luckily I happened to be with her at the hospital because I took her for my antenatal class. It happened with fever so it was not a big deal. I was a little worried but I had febrile seizures as a kid and I outgrew them and I know they are the best types of seizures to have.

Then she had some more seizures and then suddenly they happened even when there was no fever. I think at that point I might have been in denial. I read so much about seizures I could have become an epileptologist. I started her on anti malarial medicine every week and for three months it seemed to work till she had another and another and another.

I went to see a pediatric neurologist who asked me to do an MRI, EEG and a few other tests. I think that might have been one of my lowest days, watching my baby being sedated and put in the machine. Then she woke up while still in it and was so terrified and started to scream and hit her head on the mask. I have never quite felt like such a failure. After all the tests, one of the radiologists said she saw some area of scarring and I quite literally died that day. I took the scans to a more experienced radiologist who said it was just an artefact. The EEG was normal but the neurologist advised that I put her on anti seizure medication. I researched again and when I saw the side effects, I was terrified. What if my beautiful intelligent girl who loves to write and can write 1-200 suddenly can’t write anymore because of tremors? What if her long hair starts to fall out? What if she is so sleepy she can’t concentrate in class?

I couldn’t go through with it and I left. So this year she has had three seizures already about a month apart. Anytime my phone rings and its from home or her school, my heart rate triples. Anytime I’m asleep and I hear her door open, I jump up wondering if its happened again. I keep wondering if there’s something I didn’t do right. Maybe I shouldn’t have stopped breastfeeding at 8 months when I got that new job. Maybe if I hadn’t walked for 2 hours to force myself into labour at 37 weeks, perhaps she would have stayed in longer and I would have had her when she was more mature. I know somewhere in the part of my brain where logic is king that it makes no sense but I don’t know how to fix this.

Sometimes I feel like I need to leave my job and be close to her but my job gives us the good healthcare plan that pays for all these tests. On my last business trip out of town she had a seizure. I cried a lot but I have finally come to terms with the fact that I have to do something. I cannot just sit back and hope it goes away. I have to take care of my baby. I’m beginning to look irresponsible. I have decided to have her start anti seizure medication. If she is seizure free for 2 years then they can wean her off them. I am terrified but I have to be strong for everyone because if they see me scared then they will be worried. I have to believe that she will be fine. That this too shall pass. I love my daughter too much to do nothing. I have decided to have a little faith. It’s a struggle not to ask God ‘Why Izzy?’ Why not me? Other kids are running around healthy. Why her?

No matter what our kids are special and they are perfect. We do the best we can. Some days we will be really strong and other days we may need to cry but I think we are never given anything that we cannot handle. I think I’m also writing this so that I can read it on one of the low days and remind myself that I can do this. We can do this.

xoxo

Dr Fab

Dr Fab is a trained medical doctor who has decided to make a career of managing other doctors. She has two daughters, speaks English fluently, Igbo courageously and likes to think she can still speak French. She loves to read, dance and at some point thought she could design a clothing line! Her husband has to say she’s an amazing cook or risk starvation…

This post originated from www.akwukwo.com blog. The folks @akwukwo have a mission to igborize the next generation with fun educative Igbo (a Nigerian language) children’s books and learn Igbo YouTube videos. They do feel strongly about all children related topics!

Written by 

Author of "Self navigate for health" available as eBook on Amazon and paperback on Lulu. Hematology-oncology physician writing about medical self-advocacy or "self-navigation", cancer, blood disorders, and books

2 Replies to “In need of a little faith”

  1. Thank you for sharing. My son was diagnosed with childhood onset myoclonic epilepsy at 5. It was the most difficult and painful time of my life. We put him on anti seizure meds right away, and he had all the side effects you mentioned and more. He is 8 now, and we are beginning to wean him off of his meds after being two years seizure free. Which brings new concerns, but also so much hope. Blessings to you and your sweet Izzy.

    1. Very nice of you to read, and brave of you to share your story also. Having a health issue is difficult, even more so in a child. All the very best to you and your son as well.

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