I’m realizing tonight that I haven’t written much lately. I used to write here 1-2 times weekly, and that pace has slowly dwindled to 1-2 times monthly. And there’s a very simple reason for that: this blog of mine is fulfilling it’s purpose beautifully. It has been the outlet that has allowed me to safely process as I went along on thee hardest, most trying journey of my life thus far.
When we began this journey back in August 2017, it felt like we had been stranded against our will on a vast sea of unknowns; would our life boat end up crashing in to the jagged, menacing rocks somewhere in the darkness? Would we find our way out of the storm, through the fog, back in to the sunlight? Or, would we be stuck in some Twlight-Zone-like alternate reality where things just rocked the boat between the safe side and the prospect of a powerful current waiting down below to engulf us? Come January 2018, when we found the abnormalities in the white matter of Evy’s brain, and the 2 anterior temporal cysts (really more like pockets, not cysts of matter that may grow), it seemed as if the sunshine option had been torn away from us. At that point, our little family seemed to be left only with the option of the menacing rocks, or the twilight zone. It felt suffocatingly surreal. How’s that for an oxy-moron?!–But really, that’s exactly how it felt for me, for more months than I care to count.
And then there is now….NOW is a calmer time. Now is a time to be celebrated. Now that we know our darling Bug should live a long, fulfilled life, the tides of that scary sea we had been stranded on seem to be settling. My need to write has settled with those tides, because there just isn’t as much that I need to painfully process anymore. Therefore, I may not write quite as often, because life if quite simply GOOD….hold on though, you’re not off the hook that easily; I will STILL be writing, for many years to come, so take your party hats off please 😉 I simply mean that with greater peace has come more contentment, more family time spent enjoying the little moments (instead of dreading them), and I write when I feel the need to really share a part of our journey, to process, or to celebrate the milestones.
Tonight is about something a bit different. It’s not directly about Evy, or my own journey, but is more about the road that parents/caregivers travel when their little one seems delayed. Lately, a few people in my life have expressed their fears & feelings with their own little ones being developmentally “behind” in one way or another. They wonder WHY it’s happening, they’re at the early stages of the journey….where all sorts of tests are being run, where they are hoping to find something “wrong” simply so that they can have something physical to fix (let’s face it, fixing something physical can seem so much more comforting & promising than grappling with something we cannot yet define with a firm diagnosis), where they are feeling all of the hell that comes with the early stretch of this journey. To my dear friends out there feeling this way, and to ALL parents/caregivers out there on this journey……
I SEE YOU
I SEE YOU at war with the uncertainty. The uncertainty is enough to drive a person half mad sometimes. And I feel your pain to this day–because we still do not yet have a FIRM diagnosis (although our answers all point to autism, which is the interim diagnosis that has been given until the final round of full gene testing comes back in 6-9 months). You might be wondering what you can do to best help your little angel right now, but simply don’t have the answers yet. Maybe you’re desperately wishing you knew what the outcome was going to be, so that you could look in to the future and have some hope…but you have no firm answers yet, hell, you’re so far from firm answers that you want to scream!! I SEE YOU. I wish that I could take your pain away and tell you that “this will all be ok”. Since I cannot do that, because working through the pain instead of going around it is part of the journey, let me tell you that I have come to realize that certainty and guarantees in life are an ILLUSION. Yup, you heard me; those things do not exist. Not really. Even those who have a perfect bill of health today, or enough money that he/she never needs to work a day in their life again, and seem to ” have it all” are not guaranteed anything. Today could be marvelous for any of us….and we simply do not know what tomorrow brings, regardless of how secure or certain we feel in this very moment. I don’t mean this to sound like a downer…I mean it to free you from the illusion that if your child wasn’t experiencing this delay, he/she and all of your family would be “fine”; it’s not true. Your child’s delay might have brought your attention to this uncertainty, but it has actually always been there, for ALL OF US. So I promise you, you are not alone. Your world of uncertainty is more vivid, more threatening, right now, much like ours was for so long…but it will not be that way forever. You are not alone. I’m there with you. I SEE YOU.
You who is searching for the WHY…searching for someone, something, or some moment to blame, just so that you can try to come to terms with what is going on….I SEE YOU. If you’re anything like me, you’re wondering if there was anything you could have done differently? If you’re the biological mother-could you have done something different during pregnancy, or delivery, or afterwards? Could you have been more or less active during pregnancy….would that have made baby immune to any delays? Or maybe you “should have” chosen the safer delivery option….maybe that’s why this is happening? Did you do this right…did you do that right….etc etc etc. Those questions can haunt you. They are insidious, because they slowly rip your emotional & mental health to shreds. Please, do NOT let those demons win. Even if you answered all of those questions, I promise you you would feel no less anxious. No better. No more reassured than you do right now. I urge you to not fight those questions, because to fight them is to give them more power; but simply to acknowledge them, and then let them go. (Meditation helps greatly with this…I know, I was skeptical too, but just try it, you’ll see!) You may be convinced that if you knew WHY you would feel better about this situation…but the thing is, the WHY often cannot be pinpointed. To use our own example–if your child has autism, as Evy likely does, there is no exact WHY in medical evidence just yet. (Evy may be bringing the medical community one step closer in it’s research–he may be one of the first little ones diagnosed based on brain MRI findings and genetic isolation testing, rather than being behaviorally diagnosed as most children are) Letting go of the search for that exact WHY can help you find peace. Finding a diagnosis is one thing, but searching for the exact reason WHY your child has this diagnosis is where the erosion comes in. I SEE YOU. And I’m imploring you from the bottom of my heart: don’t let that illusive search beat you down. Your child needs you, and you deserve to be happy with your child.
You, who is looking at others your child’s same biological age, watching them do things that you wonder if your child will ever be able to to do at all….I SEE YOU. It feels awful, I know. As hard as it is, let the horrible feelings be there. Make space for them in yourself, in your mind, in your energetic body. They will fade. Your sweet angel will do something amazing for HIM or HER own self very soon, and it will feel 10,000 times as amazing as you ever could have imagined!!! For example, this week Evy has really started singing for the first time. He used to try the odd line or 2 from “Twinkle Twinkle”, but THIS week is something completely different: he is singing: his “A,B,C’s”, “Open-Shut Them” and “The Clean-Up Song”, and more. His beautiful little voice is just angelic….I’ve heard a lot of soul-touching singing in my lifetime being a classical singer myself….but NOTHING compares to hearing this little man sing. His sense of rhythm, the happiness, the melodic accuracy and pure tone….all of that coming out of someone who a little over 1 year ago had less than 5 clear words…it brings me more happiness than I can even express to you!!!! Are other kids his age getting ready to in to Pre-Kindergarten in the fall? Yes. Are others his age saying more sentences than he can? Yes. Does that ever hurt, in the moment? Of course!! But these amazing moments where he shows us just how much he really knows are so glorious that it more than makes up for those sad moments (when we try our best not to compare, but we slip now and again). I SEE YOU. So please, take heart, because one day sooner than you think, your own little one is going to do something new that you weren’t sure they could even do….and your heart will explode with joy, and pride, and that will be like the first piece of the puzzle that shows you that although your little one is “delayed”, they can still DO IT ALL! And they will. All in their own time. In their own way.
I SEE YOU. You who is feeling guilty for worrying. Feeling guilty for comparing. Feeling guilty for not pushing Dr’s to have done something sooner. (Even though it nearly impossible for Dr’s to notice most developmental delays prior to age 2-4…I know, as mothers/caregivers we still beat ourselves up!). Feeling guilty for feeling guilty for feeling guilty for feeling guilty….Gosh!! I hear you, I know the mom-guilt is real….and it’s so compounded when we’re dealing with this situation….I SEE YOU. Your guilt is normal, natural….but don’t feed it, please don’t feed it. It will only make things harder for you, and for those around you. Instead, practice turning to TRUST. Trust in your child’s ability to learn & grow. Even if they do it differently from your other children, or from those around them, they are still doing it! TRUST that although the future may look a bit different from what you had in your mind, it is still bound to be beautiful.
No one gets exactly what they pictured in life, but if we remove the expectations and biases as much as we humanly can, we see that it’s still pretty damn exquisite.
I SEE YOU. And I’m here with you on your own journey.