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I remember the first time my mom witnessed one of Myles’ meltdowns. We were ...
in Lowe’s. We made our way through the Christmas decorations, rounded the corner and entered the lighting section with bright light after light, music playing and announcements being made. I could feel him getting wound up and I began to recognize the pre-cursors to a tantrum. I began to hurry things along and could feel my heart beginning to pound in my chest. I got rushed and frantic and remember my mom saying “It’s ok. He’ll be fine, don’t get anxious.” She was just trying help but she had never experienced what was about to unfold.
He began screaming and writhing in the carriage. He started grabbing anything and everything out of desperation including merchandise, my hair, glasses, nose and lips. She leaned in to try and calm him and I abruptly instructed her to keep her face away from him, not to get too close; as if he was a wild beast who would lash out. He then started biting at my arms and hands as I tried to rush towards the front of the store. As we reached the front of the store he was banging his head on the handle of the carriage, smashing his face into the metal giving himself a bloody nose as I was desperately trying to rip my sweater off my body so I could cover the handle and protect him. People stopped, stared and began to talk under their breath, some even stood in wild astonishment with mouths gaping open. My mom was behind me and had become silent. She was equally as astonished and you could tell she had no idea what to do. I ran the cart by customer service, threw the contents on the counter and said “I’m sorry” and continued outside.
My mom watched as I struggled to get Myles safely out of the car without him hurting me or himself. He was unmanageable, belligerent and completely un-reachable. I threw my entire bodyweight on top of him just to keep him in the carseat, leaning my shoulder against his face so he couldn’t get his mouth on me to bite. And once he was safely secured in his carseat still thrashing and uncontrollably screaming, I closed the door leaned my back against the car and slid to the parking lot floor; depleted, emotional and sad. I looked up to see my mom standing by the back of the car with tears streaming down her face. “I had no idea Erin” is all she could get out. She helped me up, we hugged and that’s when I realized that her grandparent experience would never be like that of most.
There is a grieving process that goes along with having a special needs kid, not a “whoa as me, feel bad for me” kind of grieving but a grieving that you feel deep within your heart. One that you have difficult time justifying to yourself and certainly not something you openly admit to others. You cannot help but compare to a certain degree how ‘easy’ others have it. How they complain about bath time or how hard it is to get their kids to brush their teeth or eat their vegetables while you know all too well the struggle you endure. And it is a choice to not remain there; mentally, physically or spiritually. It is a new reality that you all come to grips with. Yes you grieve it, more in the beginning but I would be lying if I said it never creeps back in from time to time. But you accept it, you do what you can to adjust and you begin to see a different kind of beauty. A beauty that is raw, vulnerable and authentic. You share in moments of struggle, heartache and sadness that somehow bring you closer. And you all begin to relish the minute successes in his life.
It would be very easy for my mom to take a backseat role in being a grandparent to Myles. But I marvel at how she, and my dad, have stepped into such remarkable roles in Myles’ life. I listened to her the other night as she took on bath and the bedtime routine with timers, visual and verbal prepping statements, following a specific routine all while lovingly yet firmly holding him accountable and praising him along the way. It’s not easy… and it takes practice, an inordinate amount of patience and a depth of compassion that is hard to explain. And she does it, time and time again. She drives him to therapy, takes him places and does things with him that bring out the best in him and gifts them with the magnificent opportunity to develop a bond that is nothing short of beautiful.
So while it would be so easy to focus and fixate on what is lacking, what we potentially have missed out on or how different our lives are, I have found the complete opposite to be true. Myles has healed my relationship with my mom and brought us closer than we ever have been, strengthened us through vulnerability and has shown us what love and joy looks and feels like; never being attached to pre-requisites or outcomes… pure and simple. I am grateful for my Myles through which I am able to see the beauty of others come out and play!
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