( and other undeniable facts)
My greatest friend in the whole wide world is a girl I met in a church bathroom. I was sneaking up on 13 years of age and my dad had just moved us all to the end of the known universe to pastor a tiny church that kept him and my mother busier than they’d ever been, and I was a complete and utter n00b. Meaning, as far as anything outside of church and home ( which was basically church) I knew nothing. Enter my greatest friend in the whole wide world. She was in a stall one door to my left- another girl from the church was one door to my right and as the story goes, girl on the right did not have a square to spare. This bottled explosion of a girl on my left proceeds to roll, then lob toilet paper under and over the stalls in an attempt to get the supplies to her friend- while I, pulling my feet up somewhat while my jaw hit my chest- marvelled that such a girl existed. IN CHURCH! When we left the stalls she wasn’t even embarrassed – I know now that’s because she wasn’t born with that bone- she introduced herself , said she thought my brother was cute and asked if I’d like to go to her house after church that day. It was like being inside of a perfect storm – right in the eye of it- and watching it swirl all around me. After 35 years, nothing has changed. She was and is a chemical reaction. You have to experience her, you can’t just observe.
On the advice of counsel I’m going to conceal her identity and call her… “Swyla” Swyla is my ride or die. My cradle to grave (if the cradle began at 13) She is my grab a shovel and don’t ask questions, unconditional love and back up plan should the rumour turn out to be true that I am in all actuality unloveable- and I know no matter what she will stick by my side as we ride off into the sunset together until the wheels fall off . Oh It’s real. Over the years, the strength of our friendship has been the perfect balance of shock and awe. My shock and her ” awwww aren’t you cute”. 😜 The truth of it is, she is the perfect reflection of who I want to be if I could allow myself to fully be- if I let the voices of ”should” and ”can’t” be quiet for a minute. She brings out the very very best in me, and she overlooks the worst with a superhuman kind of blindness. If I counted the number of times I’ve teetered on a ledge somewhere and she’s cracked the perfect joke and lit up the absurdity of it all, I’d be counting for days. Whoever you are reading this right now- I wish you this type of love. Because it really is unconditional in the best human way you can have it. Are there things about me she doesn’t like? Understand? Relate to?? Yup, no doubt. There’s likely a list somewhere she could rhyme off without taking a breath- but you know who’ll never hear it? Anyone. And I know it. Precious few things in my life have been as sure as that or as loyal as she is. Our friendship is built on strong legs. She’s taught me that you don’t get real from a fairytale- You fight for it. That’s why I’d take to the mattresses any way, any where, anytime, against anyone for that girl.
Swyla and I play a fun little game from time to time and it goes a little something like this…
- Swy: Should I wear this dress or that dress?
- Me: That one! Definitely! You look great in that one.
- Swy: Really? I was kinda thinking this one, I was going to wear those earrings with it.
- Me: Ok, cool- wear this one.
- Swy: Should I wear these shoes or those ones?
- Me: THOSE ones! Those will be killer.
- Swy: Really? You don’t think these will better? ’cuz the buckles?
- Me: But those have the buckles and bows!!
- Swy: Yeah, I don’t really want to be matchy matchy.
- Me: True. Ok wear these.
I cannot recall, in any circumstance, where Swyla actually went with my suggestion. I’d wonder, silently or laughingly out loud ” why do you ask if you aren’t going to listen?!!” and she just shrugs or smiles over her shoulder- there’s just never been a time when she didn’t follow her heart in anything. ( right about now she’s dying to explain my wretched fashion sense and the fact that I wore gauchos until my teens and tie dyed my hair) While I was remembering that fun little game she and I play- I thought of God of course, and wondered if He asks the same question. ” Why does she ask if she isn’t going to listen?!” I don’t need to wonder- I’m pretty sure He’s said that on more than one occasion. I’m so good at asking, not so much with the listening.
To go deeper than what shoes or dress to wear- Why does anyone ask questions we don’t want answers for? Or rather, why do we ask questions and then only accept the answers we want to hear? ( As I watch press conferences lately from our neighbours to the South I’ve been wondering this over and over)
I ask a lot of questions about Thaniel and his care and currently his education as I remote school him- but I don’t know that I’ve been listening or accepting the answers in front of me. Man it’s been tough! (Homeschoolers you made it look easy and I resent that!! 😜 )
Our day begins with my waking and getting ready- I try to have a cup of coffee while no one is awake so my brain has a chance to warm up before chatter starts. Early morning quiet is essential to my mental happiness. Benji my second youngest understood that, on the mornings I’d have to wake him before the others so he could catch his bus to the gifted school an hour away from us ( he’s such a smarty pants) Ben would quietly pad down the hall, get his breakfast ready beside me silently as I made his lunch and we would kind of work around each other in a bubble of peace. And then Thaniel “ wakes” which is a misnomer. He becomes conscious really- in sunrise slow type stages. But once wide awake- he is LOUD and so active and needs your attention immediately. He’s an explosion of movement. Doesn’t want to be dressed. Doesn’t want to ‘ school’ , doesn’t want his face washed or teeth brushed or anything that resembles put together. The number of times I hear “ no “ from him in a morning is staggering really- and since it takes a lot to make me raise my voice or get frustrated- it goes unchecked for a while- for a while- until the clock gets closer to school time and the coffee has kicked in- and thus we dance.
I asked about how difficult or different it might be to remote school him and I think someone said something about all the things physical school could offer him that home schooling would not. I asked if there was a chance I could do it well and I think- I think- there was something about the stubborn nature of a child with DS and keeping my bench deep as far as caring for him goes, but I can’t recall the details- I wasn’t really listening . I wanted to hear that he has a weaker immune system and so might benefit from being a little more isolated at home, and so I did. I wanted someone to confirm to me that a second wave of Covid was likely going to sweep through once school started up again, and so those were the only opinions I read. Now here I am- in a conference call with teachers asking them why in the world they didn’t warn me!! 😝
I ask a lot of questions, and up until recently, I thought it was because I wanted to know things- but I’m starting to wonder now if what I really want is justification for what I already think or feel or want. Anyone else suspect that? Or am I typing to myself here?
In fairness to Thaniel, he is doing his best. When I can get him to sit, he pays attention and loves to hear his teachers and classmates talk and loves it when the teacher asks him questions and his little face shows up on the computer screen. His computer illiterate mother has hit the ground running trying to learn this google suite thing and how to use a jamboard and how in the world to add a picture to a slide… ( Thane’s seven year old classmates are mastering this far faster than I am! ) I know I should let him try- but when I leave him with the computer, he hangs up on the call and tries to log into YouTube to watch the Wiggles. I’ve just spent nearly $700 in hands on learning aids to try and keep him engaged since he is a very visual learner ( as well as a new coffee pot- the old one isn’t going to be able to keep up) and something called a ‘ wiggle seat’. Meanwhile, the cat ( who adores him) tries to sit in his lap through most of the school day, the dog doesn’t realize we aren’t all just Covid relaxing like through the summer and he can’t go out whenever he feels like it and I’m wondering why did I ask, if I wasn’t going to listen?
When I ask about Thaniel, I’m mostly looking for positive answers and the right to believe that I won’t have to contend with a lot of the issues that Down Syndrome can bring with it. I need to believe that Thaniel isn’t a typical non-neurotypical kid. Chances are good someone has answered that question for me already and I just haven’t listened. Poo. I mean, Down Syndrome actually rocks and I love the way our lives and hearts have been made so much bigger and better by Thane and his massive amazing, and I don’t want him to not be him – in any way- but… can he please say ‘yes’ to pants once in a while?
The point of my post today?
Every year I choose a theme or word to research. I’ve picked some safe ones – Faith, Home. Soft pretty ones – Joy, Family. The surprising and often difficult – Hope. But I’ve been on the fence this year about what to dig into – and this morning it came to me. The theme this year, the word I want to understand is – Authenticity.
It’s the best way to describe ‘Swyla’ and the pure unadulterated whole-her way she lives. Thaniel himself is uniquely and unapologetically authentic. But I want to understand what it really is , why it seems to flow so naturally from some, and why it alludes others and if there’s a trick to it? Is there a way to ask and hear ? Is there a way to live an authentic life that isn’t offensive or abrasive?… I’ve got three dozen questions and just one prayer. That I be open to really hearing the answers.
Whenever the theme for the year comes to me, I always get a little rush of excitement and an eager feeling of wanting to dig in right away- BUT – Thane is awake.
Happy New Year, and also- I’m sorry about all the times I ask you things and then don’t wait around to hear the answer, or ignore the answer altogether, or hear it and defiantly do what I want anyway. I think I do it more than I even realize and I want to do better. Thank you for forgiving that and being patient with me. I’m going to be asking you to show me what an authentic life means. How were you able to be inside a world that looked entirely different from you and you never ever conformed to it? I want to hear from you, and more, I want to listen. I also want to ask you to heal our land. There’s more than one virus killing people out there right now and we need your help. Thank you. I love you.
Ps. Happy Birthday Swyla- I love you too!! ❤️