by Suzie Atwell
Janine Thompson has bravely shared with us a little of her nightmare that begun some 4 years ago. She had no warning that a tsunami was going to hit her in the form of seizures and epilepsy. Her first born child Jimi, had developed “normally” and was thriving. There was no reason to suspect that such a horrendous nightmare could start with the birth of her second child. And then, when pregnant with her third child, finding herself laying with her second child on her pregnant belly, having seizures. When the third child was born he too had seizures within the first 4 weeks of his life.
Janine Thompson, mother of Jimi, Beck and Mac. The love of a mother knows no bounds.
When Janine’s nightmare began I too was having my own version of a crisis. I had a couple of years earlier gotten a very big warning that I ignored. I had lost part of my sight in my right eye. The words auto-immune were mentioned and that I had the markers for lupus and rheumatoid arthritis. Despite my efforts at getting answers I was left none the wiser. Doctors would look at me blankly as I sat in their surgeries describing what I now know is brain fog. My work was demanding and I had the weight of accountability heavily loaded on my shoulders. It was a frightening experience to see yourself lose control and not get any help in the form of answers. When I could not remember words that I knew I knew I felt terrified about what the future held.
In an odd way our experiences coincided EXCEPT when you are a mother and it is your children that you need the answers for, the stakes ramp up.
I felt impotent to help. Witnessing the heartbreak of a family dealing with such a scary situation where you have no control is gut wrenching. The ripple effect of families living with seizures and other brain disorders is far reaching. Grandparents, aunts, uncles, friends, teachers the list goes on.
Luckily I was able to help Janine, as one of my former trainees gave me the number to Dr Beck and The Institute of Functional Neuroscience. The new discoveries in neuroplasticity have given little Beck and Mac a big chance in living happy, productive lives. Whilst there is still work in progress to stop the seizures both Beck and Mac have been able to develop and reach their milestones. Little Beck, who had lost a lot of strength through his seizures is now at school – he talks (he wasn’t talking), is learning and is getting stronger. Mac is larger than life. He talks, walks and loves to clown around. He was unlikely to walk or talk and instead he is intent on making his presence felt. It is such a good feeling to hear Janine’s joy of sharing her boys advances in spite of seizures.
Mac, as a baby – already he has endured hundreds of seizures. Suited up for his brain imaging that shows where neurons over fire and under fire. We are glad he got a second chance through this amazing knowledge.
Janine and I both agree. Our friendship is an enormous help. If you are someone, who like me, has a family member or friend who is living in a highly vigilant state with no end date there is one thing you can offer. Your support. It could be cooking a meal, a positive story, a quick pop in. The biggest gift though is your listening. Listening to that person and letting them know you are there, if they need. Getting them and acknowledging their experience. Share the story of what is happening to those you know. You just never know when someone can contribute a piece of information that can save the situation. I am grateful that my friend Lisanne listened to my story about Janine and came back to me with a referral that changed the future for the boys. I am grateful to the people that gave me knowledge along the way in restoring my own health. Sharing of information is a great gift.
Janine and I invite any of you who would like to share your story to do so. It could be you personally or someone you love. Amazing Smart Kids will publish your story as a blog. We advocate, share knowledge and support all those families who feel alone and stretched beyond measure in a world that is difficult even for those without an added challenge, such as brain disorders.
We invite you to send your story to firstname.lastname@example.org
We are building a movement that advocates,supports and shares knowledge for families with brain disorders.
We are also fund raising for the Inspired Minds Foundation. Linda Morison’s story is empowering and inspiring . At 13 her world was lonely and difficult . Anxiety for her was not your ordinary “butterflies in the stomach” feeling you get from having to sit exams, for example. She felt anxious all the time. She could not understand why her mind would fail her, nor did anyone else. The consequence was being labelled “dumb” and segregated from her friends, an excruciatingly painful ordeal for a teenager. A bold, audacious adventure changed life for Linda (LJ) and her family. LJ discovered that you can change your reality A crazy idea cooked up by her larger than life father had the family set sail for the Bahamas on a not so large yacht. This was in the late 60’s when doing such things were not the kind of thing you would do. No matter what your family is dealing with you can be inspired by this story. This is a great family read for parents and teenagers. Empower yourself, empower others with your purchase. This is adventure learning at its best.