Be still. Breathe.
I know how heavy your heart is. It feels so oppressive and suffocating and daunting to be tasked with being not only a mother, but master of all trades. You’re overwhelmed keeping track of all you must accomplish each day. All the balls you must juggle to keep things from spiraling into chaos. The careful orchestration of absolutely everything. The medical appointments. The medical decisions. The therapy. The insurance. The unprofessional professionals. The staring strangers. The disapproval. The disappointment. The dread of an unknown future. The walking on egg shells. Holding your breath. Weighing the risks versus the benefits. Preparing for the next giant hurdle.
Your nervous system is under siege every hour of every day by the magnitude of the needs, the constant nature of the needs, the lack of predictability. Your body is so fatigued. Everywhere you turn there are dangers and risks for your son. There are considerations you must make that others never need to think about. There are days your heart breaks into a million pieces and moments you nearly drown in grief thinking of all you’ve both lost.
When you exit the insulated world of those living a similar life, you’re instantly pained by the lack of support. You wonder what the silence from family and friends means. Does it mean they don’t care? That they can’t understand? That they think you’re doing it wrong?
An indescribable isolation exists on the side of the chasm in which you exist, clearly separated from those traveling an easier and more expected path. The silence hurts. It feels like a giant “DISAPPROVE” stamp on you and your son. The lack of grace and empathy, the outright disdain— it is not a reflection on either of you. You don’t have to make sense of it. The response of others does not invalidate who you know yourself to be. The silence, indifference, and judgement is a reflection of what is lacking in them, not you.
You’re forced into making hard decisions that nobody should have to make. There is no template for blazing a trail with this boy. He’s extraordinarily unique. Beautiful and amazing, but so burdened. You want so much for his body and mind to allow him peace. For him to be comfortable in his own skin. It has been such an elusive dream that it’s hard not to feel like you’re failing, but remember this—you are the mother meant for him and he is the boy meant for you. The day he was born, something was born in you too—an instinct and intuition, a gift to help you on your journey with him. When you’re quiet and still and listen closely, you feel the answer. You know what he needs and the next step to take.
Because that’s true, I know how exasperating it is to have your choices, your perspective, and your knowledge about him called into question so often. You waste your breath explaining, knowing they’re incapable of understanding. Despite your confidence, it’s unnerving to permanently reside below a shadow of judgment and disapproval.
When you’re on the most difficult journey you’ll ever travel, it’s only natural to wish that those failing to offer encouragement would at least refrain from insisting you’re traveling south when your compass clearly points north. You can’t please them because your compass is indeed correct. Their failure to comprehend this is not your fault and doesn’t require an excuse, acceptance, or understanding. You need only to listen to your heart, trust your intuition, continue your research, and remain on the path you’ve been led to.
Some days you both feel so traumatized and life feels so unfair. You’re so exhausted and beaten down. It’s easy to focus on the suffering you and your sweet boy have endured and sink into despair. Even so, you must remember that the heart of your story and your son’s story is not of hardship or loss. It’s a story of carrying on with bravery and courage, of rising above the circumstances, of continuing to claw and fight for what matters. It’s of looking for the silver lining and creating one when one is nowhere to be found. Most of all, it’s of being faced with a million battles, and each time, choosing resilience.
This was written more than a year ago during a particularly challenging time making a major medical decision for my son. I’m happy to say we are in a better place today.