The Ruminations of a Grin2b Mom 

Our perfect little boy, Ansel, was born August 25, 2018 in Hannover, Germany to two doting parents. I (his mother) am American but accidentally fell in love with my German husband in a beer garden in Munich a few years before Ansel was born and decided to stay. Two years before he was born, we had already had a miscarriage that ended up in an operation, so we were over the moon when our healthy baby boy arrived.  

The first 4 months of Ansel’s life were blissful, as life is so often with any new parents. But through all of the bliss, I had a pit in my stomach that something was wrong. Everyone, including the doctors, kept telling me that I was overthinking and that everything was fine. Then at 4.5 months Ansel had his first seizure. Within days, one seizure turned into up to twelve seizures every day. We were rushed to the hospital in an ambulance where an old neurologist in a white coat turned to us and said emotionlessly, “Your son is very sick.” They began running genetic tests and while we were waiting for the results, he had an MRI which showed he had a brain malformation. The floor underneath our feet collapsed. We found out soon after that he had a rare genetic mutation called Grin2b. He began epilepsy medications that didn’t help and often made things worse. We were told all of the things he would never be able to do and that he likely would not live past the age of 10. In that first month we were told all of our worst nightmares and my life as I knew it died. 

I remember sitting on the sofa with him in my arms after coming home from the hospital the first time with his diagnosis – looking at my perfect baby and thinking to myself that he is just as perfect to me as the day he was born. He hadn’t changed – it was me that had changed. Now I was living with fear, with anxiety, deep sadness, loss, trauma, and despair… All my laughter had faded but what I didn’t know at the time is that that tiny little inkling of hope I still had in my heart would be worth its weight in gold in the years to come. 

I began driving across Germany alone with him to do intensive physical therapy sessions for five days every month, flying to Switzerland to see eye doctors, driving illegally to the Netherlands during the covid lockdown to get CBD for him, flying to Austria to see kinesiologists, spending my husband’s vacation days in therapy sessions with him all over Europe – doing everything I could do to give him every chance of having a good life. And my marriage almost dissolved somewhere in the middle of all of it. 

But over time I began to realize that my shattered world was in fact far more beautiful than anything I had, heretofore, ever known. For such a short time we are all here – and for some – it is shorter than others. But I knew I had a choice on how to tumble through my days and view my life while I am here; I could find every possible way that the galaxy had let me down, the pitfalls and terrible defeats, all I believed I didn’t have, or I could go another way. Instead I chose to wake in awe and wonder everyday with my beautiful child and see him as the brave hero and wise teacher that he is. To me he has always been perfect. I have chosen to chase the light and miracles hiding in so many unassuming places. And I repeat two words like a mantra, no matter what comes; Thank you. Thank you for the incredible life that I have with my perfect boy and loving husband that has been unconditionally by my side every step of the way.  

Ansel still has seizures, though controlled through a study medication (radiprodil) we are trying at the moment. He needs support in so many ways – from eating to standing. He speaks his own language. He laughs his own laugh. He is unapologetically unique. And despite all of the reasons he could be unhappy and see his life as unjust, he wakes up everyday with excitement and joy, no matter what his yesterday was like. He loves unconditionally and without limits. He is the Buddha of my life and I will forever remain in awe of the illuminating life lessons he continues to teach me. It is through standing up and fighting for him that I have found my voice. It is from climbing the highest mountains with him that I’ve learned I will always be able to make it, even if it is on my knees. It is through my experiences with him that I have learned circumstances are far less important than perspectives. My husband and I were two broken souls that were pulled out of the rubble by our little boy and shown that we were not built to collapse. Our life with him is different but no less beautiful and perfect in every way and we are eternally grateful that he chose us.