Things change on the slightest whim in our life lately. Well…to be honest, things change on the slightest whim since the end of 2016 it seems, or at least it sure feels that way to us. The only thing that seems to be constant is change. Don’t you just love that paradox? I find it both uncomfortable, and yet in another way, oddly comforting.
Things change so often that it makes me unsure of what I can trust at times. We can go from huge leaps forward with Evy, to a stall in his development, on any day of the week. It’s as if Wednesday says to the Universe; “Just hold on a minute there Mama, don’t get too excited! Thursdays forecast is gloomy, sucker!“. In part, this ebb & flow is expected with any child…but the fact that our Bug doesn’t work exactly the way that we do cultivates this ultra-sensitivity for me in in terms of his progress (or lack, thereof). You can imagine what that does to this gals emotions, yup….sometimes it’s a slight train-wreck in my mind and my heart. As Thomas the Tank Engine says: “trouble on the tracks!!!”
As I returned home with Miss Lydia from dropping Evy off at daycare this morning, I was contemplating etiquette for this blog. My mom & I had a conversation last weekend about how all too often autocorrect mixes up the proper form of “it’s” vs “its” (it’s gotta be autocorrects fault…I would never make such rudimentary errors, ha!! Sure, we’ll go with that), and its content. At one point she fondly said “it should have been called ‘Laceys Mountain’ …”, and the hamster wheel in my brain began turning. I think the migraine over the weekend stalled it temporarily (YOWZA! Migraines are no joke, and that was just a partial migraine, from what I’m given to understand of them, so all I have to say is yikes!!), but true to form, the wheel began grinding again this morning. “Do I have too much PERSONAL content on my blog?”….”Maybe people would rather just hear about Evy?”…..”It might be better to create a separate blog for my own stuff? But that seems like a lot of work, I don’t have much time for 2 blogs, and I enjoy THIS one so much….”…..”What would people prefer most?”…..and so spun the wheel. (By the way, this is not at all what my mother was implying when she lovingly said what she did. This is just MY brain grappling with uncertainty & some anxiety, as it often does in life. I can see that quite clearly!…and this part most certainly has my mom chuckling, as she knows me all too well 😉 There must still be some of the obliger left in me mom, ha!! ) Once I got in to the house, I proceeded to text a few of my closest gals to ask their opinion about the dilemma in my head: 1 blog or 2 blogs? With a lump in my throat, I read their responses as they rolled in, thinking the whole time in the back of my mind “oh gosh, I hope they say to keep it to 1 blog, that’s what I truly want”…and you know what? They all DID say to keep it 1 blog. They said things such as “I really enjoy reading about both yours and Evys journey together”, and “your journey is HIS journey, and vice versa”. Whew!
<Insert huge sigh of relief here>
And that got me thinking…why didn’t I just trust my own instincts from the start? Why did I feel the need for external validation? Afterall, I started this blog for myself. I made the decision to start it as we drove back to Winnipeg after getting the call that something was found on Evys MRI; prior to that this blog had just been an unplanted seed still sitting in its package. I knew that I would need a healthy way to process, a way to let the wildfire of emotions out as events unfolded, and pieces of the “Evy Puzzle” began to fall in to place. I also knew that I would enjoy writing again, as it was something I LOVED growing up!. I knew that it would help me process along this journey with Bug, and thereby make me a stronger mother for all 3 of our angels, as well as help me to be a more level wife to my amazing Scott. And I hoped that it may one day fall in to the hands of another parent/caregiver going through something similar, and give them the comforting feeling that we are in this TOGETHER. Maybe they will feel less alone. Raising a little one with unique needs is draining…let me clarify, ALL parenting is draining!! (Can I get an Amen?!!) And yet, there is a whole different type of energy needed to understand, adapt to, and raise a neurodivergent angel like our bug. So if another parent/caregiver somewhere on this planet happens to read this one day, maybe they will feel a sense of camaraderie in our stories. Nothing in any of those reasons suggests that I should keep this to being solely about Bug…quite the contrary actually! Even as I write this, I giggle to myself, thinking how easily one can get caught up in the hamster wheel of the mind. (Silly girl Lace! Ha!!) Not to mention, this blog has had the unintended and WONDERFUL effect of keeping those that we love in the loop. No matter how near or far, I feel CLOSER with them when they comment, or email. I feel loved. I feel supported. And I know that leaving out personal stories (such as this one!) would be leaving out a key piece of our journey, and would thereby make my posts less authentic.
Lesson: TRUST MYSELF
I have also noticed that it’s not just my instincts that I second guess sometimes, it’s other things as well. I’m often hesitant to revel in a happy moment, because my subconscious warns me that grey skies could be on the horizon. (Sunshine could also be on the horizon, so I wish my subconscious would cheer the hell up!!) I noticed it most clearly this very morning: as I went in to the boys room to get Bug out of his crib, I sang my “good morning” song to him, as I do every day. (I love that time of each morning, I’m not really a “morning person”, but singing to him when he wakes makes my heart dance) When I finished, he kept his angelic blue eyes fixed on mine, smiled and said “hello” with such clarity that it blew me away. It’s not often that he uses clear words just yet, so when he does use them and they are clear and used in the right context, it literally brings happy tears to my eyes. I was ALMOST overjoyed…but not quite, because my subconscious piped up “what if he doesn’t verbalize with you the rest of the day? This could be it, you know…” What the hell is with that? I answered back to myself “Of COURSE he will continue to verbalize! It may not be this very day, but for all I know he could use 5 MORE NEW WORDS today. Why poison the happy moments like that?” I know why. In the world of anxiety recovery we call it “magic worry”: it’s the unconscious belief that if we worry about something enough, it is less likely to happen. And it’s exactly the opposite of what’s true. We manifest what we think about most, how we feel, and what we put out there in to the universe. So, by thinking such negative thoughts, I am actually attracting more negativity. What a bummer, huh?!
Lesson: TRUST THAT THERE WILL BE MORE. There will be more progress, more happy moments, more of the GOOD.
The lessons in trust don’t stop here either. A few weeks ago, some initial results from the specific genetic/metabolic bloodwork Evy had done came back: a level in the plasma called guanadinoacetate was low. This may or may not take us in a new diagnosis direction for Evrett, towards a metabolic disorder (rather than a type of leukoencephalopathy) which actually would have a treatment. However, the bloodwork needed to be done a second time in order to see if that level was low yet again, or if this was all just insignificant. The genetics office called back a few days ago, and when I saw their name on my caller ID I joyously thought “oh yay, she will have that result!” NOPE. It turns out that the lab here in town collected his blood in the wrong freaking tube, so the level couldn’t be done. So, poor Evrett had to go get poked (for what felt like the hundredth time) again, AND it will be yet another 2-3 weeks before we even hear about his guanadinoacetate level. S%*#!!!. This was such a crucial piece of the puzzle, having it missing for even just a few more weeks felt incredibly frustrating, it really drowned out my hopeful spirit. As natural as it is to be frustrated that yet another careless & simple error caused a bigger delay (this isn’t the first error made on his behalf, and I’m sure it won’t be the last), and Evy more pain, that frustration also doesn’t serve me or our darling Bug well. But how could I let go of that anger? It’s so tough….
Lesson: TRUST THAT THE ANSWER IS COMING, AND IT IS WORTH THE WAIT. We could be soooo much farther from an answer than we are. Some people wait years for answers. But us, we likely only have a few more months to go until we know with certainty exactly what is going on for Bug. And I am grateful for this fact.
Gratitude is also the answer. Gratitude is a beautiful & clarifying skill to cultivate.
As I walked in to my bedroom to prepare to write this post to you today, I was drawn to 1 of the 4 crystals that my momma thoughtfully gave me last week. For those who don’t know, some of us believe that everything on this earth has a vibration to it, and crystal gems have their own unique vibrations and powers. (This belief of vibration, or frequency, also extends to the idea that when you smile at someone, that person may go forth in their day to smile at others, passing on the happiness. But if you treat someone with negativity, they may pick that up and carry that foul mood to pass on to others instead. Moods, words, etc are all forms of frequency/vibration as well). Tigers Eye, what you see in the picture included here, is the stone that I felt inexplicably drawn to pick up and carry around this afternoon. It’s still new to me, and I couldn’t quite remember what it is said to promote…so I looked it up: Tigers Eye is known to stimulate the release of your inner strength, it serves as a spiritual compass to guide you towards the light. Well fancy that!! No wonder I needed it today; I’m guiding myself towards TRUST.
TRUST in myself. TRUST that there will be MORE HAPPINESS. And TRUST that we will soon know what we need to in order to further help our Bug grow & learn.
~P.S. I absolutely love when people reach out with a comment on this blog, or an email, or a text. Thank you all, keep them coming!!