From a mom in the trenches — January 8, 2022

This challenge has already turned into a journey of winding ways. Every smile he shows on his face makes my heart leap and my mood elate but then on the hard days, when he is taken from me into a world of his own reality and his sweet affectionate loving self is gone my heart breaks and the fears rise again. I am told that I need to release, relax, not to make him too dependent, not to be fearful. Going down to his room and feeling his energy, so weird, so off, laughing to himself in his own fictional world and turning his back on me. I go upstairs and ask myself what to do. The first instinct is to run to something that will “make me feel good”. Go and look at different flooring colors, pick up the crochet, talk to a friend. Then I think of the words of Richard Rudd “embrace the fear”, “step into the pain”. That is the only way to release it. There are so many rules. “Don’t put labels on it”, “keep fighting”, don’t give up, be a mama bear. No, actually, don’t overwhelm him, don’t push it. Other people with good intentions try to help. Other passing acquaintances I say hi to them on my walk, looking at them talking and joking with their friends. Some days there are small wins, I come up with an idea for treatment, my hope rises, my optimism surges. Trying to use my intuition and then feel like my intuition has tricked me again because whatever remedy I find and pop into his mouth doesn’t seem to make a difference. Is it the antibiotics? Is it the antipsychotics? Is it the homeopathic remedy? Is it the supplement? Is it the energy healing? If only there was a magic potion I could pop into his mouth and this would all miraculously go away… I can dream of miracles. I do dream of miracles. How we will all look back on this in a year’s time when he is back to his sweet loving self again, back at school and living his young life to its fullest. This journey has introduced me to new friends on my path to heal him. Other women, mom’s who themselves are looking for solutions, asking themselves these hard questions of what to do. Each one of us with our own skill set and our own list of responsibilities that she has to carry out aside from the raging problem of caring for a loved one who is mentally ill. The disappointment in the health system, the never ending bureaucracy of paper work, the skeptical know-it-all psychiatrists smug with their statistics on 19 year old males, so they can spit out a diagnosis in 10 minutes flat. Blinkered into what they know, the divide between psychiatry, neurology and immunology. Thankful for my support system, my husband, his amazing siblings who will do anything for him. Feeling pride for them joining me in doctors appointments and asking difficult questions. But also feeling alone with a heavy burden on my shoulders because at the end of the day that umbilical cord, although now invisible, is still there. Every sigh he makes, I feel. Every tear he drops, I feel. I pray to god, to the archangels asking them to surround him with their love. Pray for them to heal him. I surround him with my love, make a deal with god that if he is cured I will do whatever I can do to help others in this situation. I will do so willingly and with my whole heart. There, I hope some of the pain has subsided, I hope that some of the fear has evaporated and I will continue on my quest to get him back to health.