Frustrated mom to a stroke survivor

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Frustrated mom to a stroke survivor

by Kate
(South Africa)

My son was born and started having seizures after birth. He was diagnosed as having a stroke at some stage inutero which was causing the seizures.

The cause of the stroke was never discovered even after numerous expensive medical tests. Callum is now 17 months old and since he was diagnosed I have lived in a state of constant fear. Fear of the future, uncertain as to how extensive the effects would be.

My rant / vent is that there is no one who can understand the anguish of a mom who has to face a future of uncertainty for her child.

Friends and family seem to move on and even forget. Perhaps I imagine that they look at me in a puzzled manner when I dare to express my anxiety. I feel embarrassed sometimes for mentioning it, because I've discovered that in general people do not want to be faced with something to which there is no answer - especially if it is to do with a baby.

I hate that the children's stroke outcome predictions are basically "wait and see". Some babies recover beautifully, others have varying degrees of disabilities. No one can say how the brain will heal but for me it's as frustrating as it is hopeful.

I love my little boy, he's accomplished great things in his little life and I'm proud of him. I just wish I knew where we were headed - I have yet to relax and enjoy the journey cause I want the best destination possible.

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Frustrated mom to a stroke survivor

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Fragile children make emotionally fragile parents
by: Anna

Hi Kate. I do know how you feel, and my heart aches for you.

My son also had ongoing seizures after his birth, and they only stopped once we lowered his meds in the hospital a bit and then brought him home meds free.

We got a two year reprieve until the seizures started again - very infrequent, but much more serious. We eventually had to put him on anti-seizure medication, and that's stabilized him. He's now nine, and seizure free.

I remember that whole early period so well - it's etched in my memory. It was hard to sleep at night - I kept waking and getting up to check on him. I needed to have enough light in the room so that I could see that his little chest was moving.

He was (and is) a heavy sleeper, so his chest barely moves when he sleeps. Many times I held my hand near his face while he slept so that I could feel his breath, and know that he was ok.

Worst were the dreams that kept waking me at night. I kept dreaming that I was placing him in a coffin - it was awful. I would shake myself awake, then go into his room and check on him.

I'm not sure when or why the dreams stopped, but I do remember working hard at staying positive - convinced that my positive thinking would also help him.

I knew that it would do no good for him to pick up on my fears and anxieties, so I very consciously only held positive visions of him as a strong, happy and healthy adult whenever I held him, and I made sure that he always saw me smiling at him when he first saw me after waking.

Keeping focused on staying positive for him helped me to stay positive myself. It also helped others around me. They saw that I was positive about the future, and so they were too.

I still felt very fragile, but I do think that my efforts paid off.

I'm glad you wrote, because it has reminded me that that feeling of fragility and being overwhelmed can be tamed by conscious effort. And, of course, lots of rest and respite whenever you can get it.

Another thing that helped me immensely was going back to school (I was a university student when I became pregnant) and then going back to work.

It reminded me of life outside of home and I feel made me strong by giving my thoughts and emotions a break from being at home. Dealing with others not related to family, and about other issues was a huge part of being able to deal with the stress.

I wish you well on your journey.

Thanks so much for sharing your thoughts.

Your Son is Brave, continue being strong for him
by: Carlyn Faith

Hi Kate, I know what you're going through is not easy. I cannot imagine how hard is it for you to see your son have seizures. But I do believe that he is brave and is fighting to live longer.. THANK YOU for sharing your story. You have inspired a lot of people, especially stroke patients and survivors.. You have touched so many lives through your post, and just like you, I want to inspire and touch people's lives and I want to take this opportunity to share to you TAKE A BOW - A full-length documentary about a beloved and highly respected piano professor Ingrid Clarfield who suffered a severe stroke at age 60. Ingrid takes us on a remarkable journey from physical adversity and emotional struggle to victory of the human spirit and the desire to make a difference. You can check her website: http://www.takeabowingrid.com. Hoping that you can also share her story and spread the message and inspire others. God bless. :)

Update on Callum
by: Kate

Hi Everyone

I just thought I'd let you know that Callum is now 3 years old and seems to be doing just great. His drooling has vanished, his speech has come on wonderfully and we"ve applied for him to attend a mainstream preschool next year.

We feel so blessed to have not run into any issues and to be seizure free.

Blessings to all for 2012.

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Frustrated mom to a stroke survivor

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Frustrated mom to a stroke survivor