I look at pictures from when I was in “The Unknown” and the brightness of my smile, the energy I had seems so different than it does now.
The period of “The Unknown; In Denial and Don’t Want to Assume” was filled with moments of loving life, and enjoying our sweet new son without judgment. It was also riddled with mostly secret moments of frantic wondering. What in the heck is going on?! Is this normal?! This can’t be normal? I hope it is normal! When will it stop? I would occasionally share with a few family, friends and pediatric staff my worries about my son, but no one really seemed concerned, so it had to be fine. (Looking back, perhaps I didn’t want consider what? that something wasn’t normal? or listen to what? my own intuition?. Being in denial is serious business!) Overall though, the first year or so after becoming a mom was awesome. I was beyond thrilled to start this new chapter of my life. It was going to be great! I was all set and ready to dress my child in the sweetest clothes, attend awesome play dates and parties while laughing, playing and vacationing like the best of them! It was going to be just like I had always imagined it. I would send my children to the best schools and generally have everything as I planned it. I was smiling from ear to ear as I entered my next chapter. It was great! I couldn’t have written it any better. High five to me!
The pivotal moment of no return…the day when everything shifted, I will never forget. We all have these pivotal moments in our lifetime.
Looking back, I had forgotten how impactful this appointment was amidst a sea of appointments. It was on that fateful day, my husband and I took our son to the Neurologist. That particular day, the Doctor did NOT say, “oh everything is fine, just go home and stop worrying so much.” We had been hoping someone would take us seriously and stop the obnoxious pussy-footing around of “oh he is just going at his own pace, kids grow out of this stuff,” “I am sure he will soon be back on track.” We knew something was off, but all the while I really believed…ok maybe desperately hoped, it was all just a bad dream, that we would leave this pivotal moment having all our concerns wiped clean and could go back to taking fun family pictures, dressing my son up in adorable clothes and generally living the American dream (half hipster style, half old fashioned southern classic, pleeeease!)
Instead what he said was a bone-crushing reality that we did and did not want to hear: “I think it is genetic, please do not get pregnant again until we figure out what is going on.
no, this isn’t typical.”
All the strange occurrences of milestones appearing and then disappearing, all of the horrifically scary falls that ended in tears for all and plenty of blood, all of the acts of genius and highly intelligent emotional behavior that we savored like a fine wine while other kids his age were irrational, uncontrollable, and adorable plump little humans. None of it made sense yet, because we didn’t have a diagnosis, but it was a turning point. A point of no return, where you are flipped on your head and sent on your way.
I recall walking away from that appointment so clearly. I recall the exact crack in the sidewalk when my husband and I could finally talk to one another and said “ok, well, now we know we aren’t imagining things… Not what we expected to hear but it will be ok. It will be ok.” The depth of a relationship with your spouse that comes in that NEXT pivotal moment when you simply hold hands is nothing short of a miracle.
I venture to say, many couples have experienced what we did that day, holding hands in the liminal space between point A and point B. Perhaps it is after receiving a diagnosis, perhaps it is on a beach staring at the ocean, or watching a child’s school play, perhaps with the loss of a child, as your loved one is taking their last breath or as a couple turns to lock hands and with huge smiles as they present themselves to their loved ones on their wedding day.
That pivotal moment is one where words are no longer adequate or even necessary. As the whole of the experience comes with too many thoughts and emotions and all that really matters is Love. In that space between, the deepest connection is to simply hold hands and be. Be in the stillness and the space between the unknown and the urgency that life brings, complete with humans’ (ok, at least women’s!) incessant desire to control and to worry. Looking back at pictures after the period of “The Unknown; In Denial and Don’t Want to Assume,” I notice there was a different quality to my smile. That new mom, life is great and going my way smile had faded some. There was a slight heaviness and a sense of “if I let go it might all fall apart” in my smile. It was the “I can fix it, get out of my way” smile.
For me, this feeling was too familiar and it was way too easy to step back into. Like a super comfy worn in T-Shirt from years before that you can still wear but thinking more about it, it should have gone to Goodwill a long time ago.
It was easy for me to step back into the role of “I can fix it” girl. Taking responsibility for everyone and everything and running full force to smile and keep it all together so everyone has a fighting chance to avoid the real hurt. The real elephant in the room. I was a rock star at this! I learned it well from those around me, and if I could have received a grade in taking care of everyone else, I would have received an A+++ WITH bonus points AND a vacation to Disney. When I think about it, I bet most girls are taught to smile and keep it all together, if we are being honest with each other.
The smile since that pivotal day at the Neurologist office seems to have more responsibility. More empowered but also more on its plate. The need to fix can be huge. The shift going from the period of “The Unknown; In Denial and Don’t Want to Assume” to the period of “Oh God, please say this is a bad dream, I don’t think I can handle this. Where do we even fit in?!”
to “Ok, I am gonna kick this sh*t right out the door and help others in the process”
to accepting all of the above and allowing the process of “Letting go, loving my new life and ready for the possibilities.” I underline the word process because it is just that, a process!
When I look at pictures taken recently, I am beginning to see a wise woman smiling. A woman who IS walking the walk, who has been asked to change and grow and who has taken it upon herself to try. A woman and mother who is more present and who is filled with good ideas and lots of mistakes. A woman who has given in and realizes she needs community, she needs help but doesn’t always know how to ask. As well as someone who (as I have learned from other special needs moms and creative healer entrepreneurs) is NOT to be messed with and will rise to any damn occasion. My wise woman smile is also filled with moments of crying, sadness and freak outs followed by savoring my life right now as it is and learning from my children. Finally slowing down so I can be more childlike myself and loosen the reigns of the need to control and fix as fast as humanly possible.
When I take off the “old comfortable t-shirt” of old habits I learned as a girl, I feel free, like I can do anything. Those old ways of doing things and patterns from my past don’t work anymore like they used to. Sure they still feel comfortable and familiar. Sure I kick and scream sometimes and want life to be like the past because it is comfortable and all I know, but then I have an ah-ha moment. Those old habits don’t work now, and they end up causing me a lot of stress. Apparently, I was ready to upgrade. I just didn’t expect speech apraxia and an ultra-rare genetic mutation (and basically no official diagnosis) to be the mode in which I would journey to upgrading.
No one ever asks for those moments that flip us upside down but by the grace of God we grow and grow into more powerful and wise women.