My husband asked me a question during date night the other week. He asked if I could change one thing in this season of life to make motherhood easier, what would it be. Without a hesitation I said, “Take away Micah’s SPD.” His sensory processing disorder is not the hardest thing I have to deal with on a daily basis. Honestly, the 2-year-old tantrums from Levi and the 2:30am wake-ups from Theo I find harder to navigate. I “get” Micah. He’s the easier one for me. That being said, if I could make him “normal” and take away his extra struggles, I would.
Don’t get me wrong, it isn’t a walk in the park having a child with an unseen disability – especially when it manifests most obviously as “behaviour”, acting out against a world that feels extra assaulting to his senses. People see a child melting down and don’t understand the why that is often behind it. But there are those who DO see, and I am so, so thankful for them today – especially on a long, holiday weekend full of activity where my husband is working a lot.
To the family friend that saw him getting his face painted this weekend at the church event and recognized his struggle, thank you. He wanted it done SO badly, but he was pressing his body into mine so hard trying not to flinch at both the wet brush against his skin and the proximity of someone to him. That friend went and held a mirror to help distract him from the sensations and kept him company while I ran after Levi. Why? Because she gets kids like my Micah.
To the friend that came up to me during the event and asked how it was going, and REALLY meant, how is it going? The friend who also tucked my baby back into his carrier that he was slipping out of without me knowing without any judgment as my attention was on the older two. Thank you.
To Micah’s family that understands when we need to stay home or bow out of an event because we’re trying to regulate Micah’s sensory needs for him because he’s too little to do it for himself, and who send encouraging messages to us, and even attend 2.5-hour-long workshops to learn more about his disorder. Thank you.
To the neighbours in our community who saw Micah was starting to come undone at the thought of hunting for eggs alongside a bunch of noisy peers and came with us around the back to hide eggs behind him so that he could continue to search and find in a quiet area by himself. Thank you. And to the other neighbours that held Theo, blew bubbles for my kids so I could eat, and watched Levi for me while I was present for Micah, thank you as well.
To the friends that come for playdates and aren’t offended when Micah tells them, “you go home now”, or see him starting to withdraw and take their leave. Thank you for supporting and understanding that we can’t hang out as long as a “normal” kid can without some major fallout later. Thank you for coming, and thank you for leaving, and thank you for “getting it.”
To his teachers who pull me aside and give me little updates, who ask to be part of meetings with his therapists so they can help him more, and who send me emails telling me we are not a burden on them so I can have a good little Friday afternoon happy cry – thank you. To his therapists for all the work they do and for helping my boy become his best self – thank you.
To everyone who nods their heads and says, “hang in there,” rather than, “get your kid in line,” you make me thankful in the midst of this life I didn’t choose. You give me a gift of community and love that literally can’t be appreciated or understood in the same way by someone who has never been thrust into a life they didn’t choose. I told Nick once I would NEVER choose to lose a child, but I am so thankful that I have that experience in my life because of the depth of understanding and love it gives me for those in a similar situation. Likewise, I would never choose to have a child with a disability, but there is a deep gift received alongside of that, and that gift comes from you – my people – you know who you are <3.