A request at the intersection of hope and uncertainty.

“Each instant is place we’ve never been.” ~ Mark Strand

As the wind rages outside, it mirrors how I have felt all day or really if I am honest, the past few days.  A tornado of leaves swirling around in my head and chest.  I think technically, they call it anxiety, I might qualify it as hope mixed with fear and uncertainty.  This isn’t the kind of fear where you are scared, running from proverbial monsters it’s fear of the unknown mixed with a tinge of sadness.

If I could pin point it, it most likely started on Sunday when we took a little break from testing our marriage or rather hanging temporary wallpaper in our living room, to go to the mall for a little walk-around.  As ridiculous as it sounds, before we go out in public these days, we often talk about how old we will tell people the minis are, as they inevitably gravitate to the wondertwins and follow with the question “how old are they.”  As I have talked about before, the awkwardness that ensues when we give them their real age, causes the very bubbles of tension and stress to makes its way up from my toes into my knees and finally to my chest where it sits as a hot stone, weighing heavy.  This time was not different as when we got to the mall, us folks with strollers have to go to the elevators where we encounter other parents. In this case it was an pregnant mom with her 18 month old little girl who was simply precious as she repeated, “hi” and “shoes” over and over again.

The mom smiled as we approached and my heart went to my throat while simultaneously dropping to my knees. I inhaled and thought, “smile Shannon” and tried to make eye contact with KSP to silently agree on their stated age so as to avoid having to tell our story. The difference in the development levels between Q and E continues to become more noticeable and so stating their real age to moms with kids the same age begs the question.  Sure enough, we all greeted one another and as her little girl turned to eye the minis, the mom asked “how old are they.” A I am by all accounts a bad liar, I blurted out “they just turned 2.”   She looked at E, and smiled as I held her and she gnawed at her bottle and a flitting look or questioning came over her face to which I promptly started acting like a women who had taken several shots of espresso while inhaling helium.  I started talking with her little girl about the flowers on her shoes, how old she was, the color of her shoes, and how she was so cute.  The mom seemed to take it in stride, and the fact that we were only going one floor, perhaps the time wasn’t long enough for her to be alarmed by the crazy lady chatting up her daughter in the elevator.

As we walked off the elevator I thought about that little girl and her sparkling smile and saying her hi and shoes at her 18 months and had a moment of sadness.  But as I looked down to continue to try to feed E who only wanted to play and let the milk run down her face, I was quickly reminded that we are so very lucky.

These moments seem to stick with me, especially in weeks where we have a lot of appointments that address the heath and developmental needs of the minis.

This week is full of such appointments as well as another anxiety inducing event that involves me speaking in front of 500 people with an audience of heavy hitter studio executives, agents, and celebrities (I know you must be thinking, what, she loves this stuff, but allow me to explain).

It all picked up again today when we went to our first early intervention therapy clinic where we toured to see what programs would be suitable for E, but also somewhere where Q could go to get some socialization and structured experience.  The programs are all good, and my anxiety is not about sending them out of home, the sadness and uncertainly comes in more with my own acceptance of this wasn’t quite how I saw my twins as I dreamed about them before they were born. In my visions, they would go to the same school, be in the same class, run around, play, laugh, learn to finger paint together, run in from school proudly displaying their artwork and that is not what will be for now.  These things, these decisions, to split them up, or keep them together or to desperately want to find a way so that they can be together but both get what they need are the struggles that weigh heavy on my heart. Decisions I never thought I would have to make, in the way I have to make them…while most of the time it’s ok, some days it hurts.

Tomorrow morning, we will be forced to confront more decisions. E will go in for what will hopefully be one of her final pulmonary appointments. KSP is travelling on business so it will be just me and E.  When we meet with the Doctor one of my primary questions that is an ongoing debate between me and KSP, is E’s need for an MRI on her brain.  Children with respiratory issues are more prone to complications from anesthesia when undergoing this MRI, and that is something I am absolutely not prepared for in any way shape or form. Back and forth, forth and back KSP and I go, with him wanting answers about E’s CP, and my knowing it likely won’t fundamentally change her course of treatment. Tomorrow will pave the runway and it will be up to us to decide if we want start up the plane.

In January we will have our follow-up with E’s neurologist, and he has already told us he will want to schedule an MRI, as he also causally informed us that the “worst” that can happen is that she will end up in the Pediatric ICU for a few days…I am pretty sure he forgot who he was talking to. 1. That is most definitely not the worst thing that can happen. And, 2. We spent 4 very long months in a hospital, if it’s not absolutely necessary, there is no way I would want to do anything that might put us back there. So then we get into what one defines as absolutely necessary.  The want for answers vs the need for a diagnosis vs. the impact on treatment.

All conversations I never knew I would have with my husband.  All conversations that cause a tightening in my chest and a feeling of fear crashing down on me. Tears hover near the back of my eyes as I fight them back.  Where is the resolution and what’s the right answer. What’s best for E?

To finish off the week, on Friday, I have the great honor or introducing my pediatricians for a very prestigious March of Dimes award which will have me publicly thank them. With all the events of this week and as is standard for me, I will most definitely cry. I have 1 minute and a speech registering 1;47 ( I am wordy!), on a topic that is already highly emotional for me.  These people in the audience are my constituents and for the first time, my very very very personal life with intersect with my very professional life.

And so, like each instant along this way of life, I am taking a breath and grabbing on to the hope and faith that we will be looked after, led in the right direction, helped to agree on the “right” decision for now, in this instant, in the place we have never been.  All of these instants are places we have never been and so we go blindly holding the hands of Q and E, of those we love and that love us, and those that cheer for us from both near and far.  I don’t usually like to ask for anything, but in this case, I would ask that if you read this, would you please take a moment to send us a positive thought, energy, vibe,  a prayer, or whatever it is that you might send our way that may all work together to help pull us in the right direction.  I would be most grateful and just knowing your thoughts are with us, will help make today ‘mynewfavoriteday.’

And it is my hope for you, that if I can ever return the favor, and as some of you have done for me in the past, please let me know. My vision for this place is that it can one day be a community of support with contributors and shared inspiration. We all can learn and benefit from one another just as I have from so many of you.  For now, I will simply thank you for being here and I hope someones kindness as you have given me will make today ‘yournewfavoriteday.’

* Image courtesy of sodahead.com

17 thoughts on “A request at the intersection of hope and uncertainty.

  1. Somewhere over the years I’ve learned a technique that works well. Distract the other person, deflect/reflect their attention to something else. I think you already are using this, possibly without knowing it. For example, if you have a monstrous big zit on your nose and don’t want anyone commenting on it, start a conversation about your “big” feet which you don’t mind a conversation about. I think you did this by talking to the other lady’s little girl and stirring up a proud mama moment for her.

    As far as the MRI goes, it may show something useful. It’s been a great stress reliever for dealing with Ben to know that he has a relatively small scar on the left ventricle in his brain in the motor skills/math department. That doesn’t let him off the hook for trying to do his best with those things, but it does give a reason what that and nothing else is a real challenge. It may help you to focus your efforts to know where the damage is rather than just running around with a vague term of CP. Being able to say “periventricular leukomalasia” or a scar on the brain similar to an old person with a stroke, for me, helps deal with some of the uncertainty.

    Many hugs to you as you go through your week,

    1. Thanks so much Faith…this is so helpful for me to see and hear your experience. We will make our decisions as we go forward and I am still on the fence about the MRI right now but it will happen I just have to figure out when I feel like it’s right. Like you say, pinpointing of the diagnosis will be so helpful…we will get there.

      Thanks for your support today and always…

  2. Breath and now yes this is extremely hard but knowledge is power.

    I’ve gotten the awkwardness with both the boys and still do. Aidan has always and still is tiny. Roan is big but maturity and developmental milestones are behind. As used to it as I am it always brings that same feeling to me and I hate the feeling I have to justify to others with the awkward comments.

    Since Friday I’ve had some anxiety as well relayed to kids, work and home. Something must be in the air so call me if you want to talk xoxo

    1. Sorry to hear you guys are struggling a bit too! Perhaps it is in the air. I know those challenges with Roan and expectations of him based on his outward appearance must compound the existing issues with his actual Autsim. Your insight is always so timely and lovely, thank you for that. Hope some of the anxieties improve soon and we can chat even sooner!

  3. I’m late reading this but seeing good news today after your doc visit was so heartwarming. You are an ambassador of kindness and love and acceptance and trying. Love to you girl.

  4. Shannon – no relevant advice to give but only the reminder that you’re a rock star. Your ability to work through and talk about the steps you’ve taken (and continue to take) on this journey inspire all of us in our own.

  5. I feel you Shannon! My thoughts, prayers and good vibes are with you powering you to hear, and trust in, your incredibly astute sense of intuition. I’m here to talk, watch the kids, go out, slam shots :)….anytime.

  6. I am so sorry I missed this post. Please know that you are in my thoughts and on my heart daily. I hope you felt the strength of all those loving you, thinking of you, praying for you, and wishing you all well as you stood there and gave your thanks to your pediatricians. I wish I could hug you, but if I did, I probably would squish you to death! 😉 Lots of love!

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