What Now?

My Chiron return was in June and, apparently, I (metaphorically) fell “off the roof” (This is astrological and Human Design stuff. For current purposes, you just need to know that coming “off the roof” is a major life transition for people with a particular design, which I have).  Just a few hours after the transit, I broke my ankle. While standing still no less.  More than a month later, I still feel lost; like I have no idea what I'm doing.  

Eight years ago, my body began telling me that the thing I loved most and was good at (law and being a lawyer) was no longer a viable employment option.  I tried doing it differently, doing less of it, all kinds of things.  But my brain wasn’t braining the way it used to, and I just wasn’t able to keep up and complete assignments.  At the beginning of this year, I finally received something to respond to that made clear it was time to hang up my lawyer hat.  I’ve been gutted ever since and, if I’m being honest, still harboring hopes that something will change or happen in the future that will let me go back.  In the meantime, I’ve been trying to figure out what that means for now.

I know that where I'm headed has to do with spirituality and intuition.  More specifically, I have felt called down a path to mediumship.  But the more I try to learn, the more I feel like I'm forcing it.  I'm heavily defined in the logic circuit (13 gates), and I just realized that I keep looking for answers, hoping someone has the message that will finally get through.  Instead, I just keep receiving the same three messages on repeat:

• Meditate;

• Trust; and

• You are the one you've been waiting for.

Image by petr sidorov, @m_malkovich on Unsplash

Now, I’ll be honest with you.  I have been receiving the message to meditate since I was in my teens.  And I keep not doing it.  Or rather, I try, and it doesn’t seem to work and I just shrug and quit.  Over and over and over.  Somehow, I believed that if I just ran long enough and fast enough and ignored it long enough, the message would change.  Then I discovered Human Design and saw my BodyGraph.  With my conscious Earth in Embodiment and my unconscious Earth in Stillness, meditation is not a mere suggestion; it’s woven into my very existence.  That message isn’t going anywhere.  So, I pulled up my big-girl pants and surrendered.  I found an app that resonated with me and have been doing 4 to 5 three-minute “pauses” each day.  I’m not “trying” to meditate, which has always failed in the past.  Instead, I’m simply focusing on the breath, saying “In.  Out.  In.  Out,” over and over silently in my head.  And when I realize my mind has wandered from that pattern, I drop the thought and focus back on the breath.  I don’t know whether I’m doing it right, or doing enough, but I am doing.  And that’s enough for now.  Gold star for me.

In the continued spirit of honesty, I’m not really any better at Trust than I was/am at Meditate.  I’ve been knocked down a lot by life.  Sometimes it happens so quickly I don’t even get a full breath between punches, let alone a chance to pick myself back up.  And even though I’ve been able to make sense of much of it, and have come to appreciate the lessons learned and growth I experienced from the events, it doesn’t make it any easier.  Indeed, these days, when I get kicked back down, my first feeling is, “Really?  I haven’t been though enough?”  But that’s just it.  There is no such thing as “going through” enough.  The reward for success is new challenges.  All I can do is trust that there’s a reason for what is happening, and that it’s happening for me, instead of to me.  As you probably know from your own struggles, this is exceedingly difficult, especially in the moment.  But I’m working on it.  So, much like meditation, when I find my brain starting to spiral into “what-if” land, I try to turn the focus back to trust.  Somehow, in some way, this is for me.  I may not understand why or how—now or ever.  And it likely won’t take the sting out of pain and grief.  But that moment.  That reminder.  It pulls me out for just a second.  Long enough to take a breath.  And maybe next time I’ll get two breaths in before the spiral comes back.  Each additional breath is another second of trust.  And it’s one more than I had before.

I have started referring to the “You are the one you’ve been waiting for” message as Second Elsa (from the Book of Frozen).  In Frozen 2, there is an amazing song called “Show Yourself.”  In it, Elsa ends up singing a duet with her mother’s spirit, as Elsa finally figures out that the magical person she keeps feeling called by is herself.  In the beginning of the song, Elsa is begging the person, “Are you the one I’ve been looking for all of my life?  Show yourself!  I’m ready to learn.”  She knows that, “I’m here for a reason.  Could it be the reason I was born?  I have always been so different.  Normal rules did not apply.  Is this the day?  Are you the way I finally find out why?”  She continues to walk toward her destination, changing her question to a statement: “You are the answer I’ve waited for all of my life.  Show Yourself!  Let me see who you are.”  When she finally reaches the end, she finds memories, and the voice of her mother sings, “Come my darling homeward bound.”  To which Elsa replies, “I am found!”  Then they sing together:

Image from Frozen 2, copyright Disney

Show yourself.  Step into your power.

Grow yourself into something new.

Mom:  You are the one you’ve been waiting for

Elsa: All of my life

Mom: All of your life

Show yourself.

This is the deepest, most Human Design song I have come across.  It is God/Source/The Universe staring right into my soul, calling me out to become the person I came here to be.  I cry every time I sing it.  Every.  Single.  Time.  Sometimes it turns into a big ugly cry where I can’t even get breath out to keep singing, so I just keep mouthing along to the words.  But I still sing it.  Because it makes me feel.  And I spent so long being shut off from my feelings that I take anything that makes me feel and be in my body as a good sign.

And the message could not be clearer.  Stop looking for the answer outside of myself!  But I still do.  I don’t fully trust myself.  My intuition.  That I’m on the right path.  That I’m doing it right.  That any confusion I have is part of the process.  To quote Taylor Swift, “It’s me.  Hi.  I’m the problem.  It’s me.”  Turns out, I am both the cause of and solution to my own problems.  Ugh.  In my moments of despair, this feels like the greatest clusterf$@k.  If only I can solve this, I’m so screwed.  But when I’m in the right space?  This is empowerment.  This is agency.  I’m the one who can solve this.  I have the power.

Image by Kaitlyn Baker, @kaitlynbaker on Unsplash

The answer isn’t in the transits.  It’s not in my chart.  It’s not in any free or paid course I can enroll in.  It’s not something external that I can find or learn.  It’s inside.  That’s the only place I’m going to find it.  And I can only find it by doing the things.  Writing.  Meditating.  Trying different things.  Trusting one more second today than I did yesterday.  Recognizing the power and joy and freedom in being the only one who can do this.  Find me.  Grow me.  Be me. 

It's not the answer I want.  If I wanted to meditate, I would have heeded that call long before now.  If it were easy to trust, I would have done it already.  I would already believe in myself.  About 25 years ago, I was at a Carolyn Myss conference where she talked about how most people talk about asking God/The Universe for an answer of what to do, but always say they don’t get an answer.  She then explained that it wasn’t true.  We almost always already know the answer.  The problem is that we don’t like the answer, so we keep looking for another answer.  99 times out of 100, if you feel stuck and don’t know what to do, just ask yourself, “What do I most not want to do?”  That will be the thing that you need to do.  She’s still right.  Harumph.

So this is me.  Committing to the work.  To the doing of the things that I keep avoiding because I want the answer to be something else.  After all, not doing it hasn’t gotten me to where I want to be.  Might as well give it a try.

Returning to Writing

I’ve been quiet for quite some time now, and while there are lots of reasons for it (which may or may not come to light in future posts), the long and short of it is that I’ve realized that I need to be writing again. It’s how I process things. Events. Feelings. How I figure myself out. How I figure out what’s next. That was the whole point of having a blog. So I could talk things through with myself. And by posting these things, you could come along with me on the journey if you wanted. Because I learned that sometimes something I had to say would resonate or help you too. All of which is to say: Welcome back!

Example BodyGraph

Now, back in December, I posted about my move toward embracing more esoteric, spiritual, energy-based teaching and practices. Along the way, I have learned about something called Human Design. Without getting too deep into it, Human Design is all about helping you to be more of who you are and who you came here to be. It’s about learning to get back in touch with your internal authority and then act consistently with that authority.

To figure out what kind of internal authority you have and how you best make decisions, create, use, and replenish your energy, Human Design uses your birth information (date, time, location) to create a chart called a BodyGraph which maps out where the planets were at the time of your birth and approximately 88 days before. That chart provides multiple layers of information designed to help you know yourself and get back in touch with the places where the world told and conditioned you not to be yourself. It also provides information about your life purpose (hint, it’s not your job).

One of the things I love most about Human Design is that it describes the process of learning about yourself and your design as an experiment. There are no correct answers; only answers that are correct for you. You learn something, run it past your internal authority, try it out, and see if it resonates or works for you. Keep what works and throw the rest away.

Why am I telling you so much about Human Design? A few reasons. First, it has become a huge part of my process for figuring out who I am and what I’m here to do. So as I walk (and write) through this process, I’ll be talking about it a lot and using some of the jargon. My goal is to provide small explanations within the posts themselves that will allow you to understand my posts without having to do even a surface-level dive. However, in the event you find yourself wanting to learn more, I am going to create two additional spaces on my site. The first will be a reference page, where I link to all types of resources for learning more about Human Design or other related modalities for self-discovery. The second is that I am going to create my own Human Design explainer posts. During my own self-improvement process, I have become Level 3 Certified in Quantum Human Design™. I have not yet begun a practice of doing paid readings for others, although I am contemplating doing so. But in the meantime, I do want to share more about it. And creating my own posts is a win/win: you won’t have to go wandering all over the internet for information (but you can if you want to!), and I can include and highlight the things most important to me.

So, whether you’ve stuck with me from the beginning, just come back, or are joining me for the first time, I want to thank you for being here. I hope you find something fun, helpful, hopeful, and meaningful in something I’ve written.

TTFN.*

*Back in the 1990s, I was obsessed with Winnie The Pooh, especially Tigger (I still love it; just not quite to the same degree). I used Tigger’s sign-off, TTFN (Ta Ta For Now), as my sign-off on handwritten letters and emails for many, many years. I was trying to think of something to use as a sign-off here other than just my initials and remembered when this was my thing. It felt like just the right amount of fun, so I’m going with it for now for now.

What’s Your Paint Color?

Many years ago, I delivered a sermon likening humans to pixels on a screen. I explained that we all need to do our own thing independent of those around us or the picture doesn’t look right, and if we’re all the same color, it’s nothing worth looking at. It’s also very obvious when one of us stops shining their light—that single black pixel gets your attention all. the. time.

But my kiddo’s journey to find and express their gender and sexuality took me a step further into my color analogy. When my kiddo first began talking to us about it, they describes themself as a demi-girl and explained that while part of them felt female, part of them felt non-gendered. At that time, they indicated that she/her or they/them pronouns were acceptable. Over time, their understanding about themselves developed, and they advised that they/them were their correct pronouns.

In the process of being educated about all the different types of gender expression and learning to identify some of the various flags, I found myself getting really loud inside my head. Why are folks slicing these distinctions so thin? Why are there so many different terms? My first thought after having these questions was: dang. I’m a shitty ally. My next thought was: way to make it about you. After taking some deep breaths and granting myself some grace, I asked myself why this bothered me. What followed was a beautiful moment of clarity in which, instead of receiving an answer, I received a new way to look at things. And it’s been such a helpful tool both for me and others I’ve shared it with, I want to share it with you.

Have you ever painted a room? Or picked out a color for your wedding? Or for a dress? Have you and your friends ever fought over the correct description of a color? I love the huge boxes of crayons and could wax poetic on the variations between periwinkle and cornflower. I remember my bridesmaid dresses were Royple—a royal blue/purple mix. There are a quadrillion different colors, each with barely perceptible differences. This one a bit more white, that one more grey, this one a shade pinker, that one more green.

One of my high school friends and I were obsessed with the color mint green (making a comeback these days. Woot!) We would wander through the store and discuss whether any given shirt was too blue or too green to be “officially” mint green. We knew what the color we loved was, and we knew when what we saw wasn’t it.

And no one I know has ever begrudged a person who is looking at paint chips but just hasn’t found that exact shade of whatever that their room needs. It might be frustrating because we don’t see the difference they see, but I don’t know anyone who has ever said that the difference isn’t there, or that someone should just settle settle for “close enough.” Colors are powerful and painting our rooms and homes in specific ways matters. We can all identify with that.

Here’s the thing: gender identity is a spectrum, just like color. Folks are making fine slices and creating new names and categories because they are looking for their “color” descriptor. And if I’m not going to begrudge someone trying to find the right color for their home or clothes or car or painting, I’m sure as heck not going to stop them from finding the right “shade” to describe who they know themselves to be.

Once I realized this, it became so easy to support not just my kiddo but everyone as they figure out who they are and how they want to be identified. And not just in terms of gender expression or sexuality. The truth is, we choose how we define ourselves in so many different ways everyday. Maybe it’s your given name, a nickname, or your middle name. Maybe you request a name change altogether. How about your profession? Do you like lawyer or attorney? Is “professor” good enough or does it need to be “doctor”? Dishwasher or underwater ceramics specialist? How about all the different names for grandparents? Are you Grandma? Nana? Gigi? You’re in a relationship. Are you a spouse? Partner? Boy/girlfriend? Date? Hookup?

Words matter. How we see ourselves, how we define ourselves, how we label ourselves matters. And having others acknowledge and accept those chosen definitions matters.

So pick your color and live it. Now, maybe you’re just blue. Any blue is fine. That’s awesome. I will honor your blue-ness. I just ask that you honor that I am not merely green, but mint green. And maybe we don’t agree on what mint green is, exactly. That’s okay. I don’t need you to be able to recognize mint green, or even see the difference between mint green and light green; just acknowledge that I do. That’s all anyone wants. Not perfection, but to be seen, recognized, and loved for who they are and how they see themselves. In this great big glorious world, I can think of nothing more beautiful I want to see.

Embracing the Woo

I want to start this post differently than I usually do—with a definition, a disclaimer, and an invitation.

What is “woo”? Woo, short for “woo woo” means those things that are more spiritual, out there, unscientific, and sometimes unproveable. Crystals, essential oils, flower essences, astrology, magic, light language, Atlantean teachings, past lives, starseeds, different vibrational dimensions, Human Design, and EFT (tapping) are just some of the things that can fall into the category of woo. And we each have our own unique woo tolerance depending on our own experiences, upbringings, and so forth. What you accept and believe may be well outside of someone else’s woo tolerance. Where we sit on the woo continuum and where our woo “squeal” point lies may change over our lives.

I’m telling you upfront that the content of this post contains a lot of woo so that if woo makes you uncomfortable, you can stop here. I’m not trying to change your beliefs about any of this. Where you are on your spiritual journey is exactly where you need to be.

I am sharing this story because I like for those in my life to know what’s going on with me, writing about my experiences helps me process them, and many of you have shared that you have found healing and validation when I have spoken out about subjects our society isn’t keen on talking about openly. And if you’re curious enough to read on but nothing in this story resonates with you, then I invite you to simply say, “How interesting” and move on.

Now, for background context, I have spent a little more than a year working on more esoteric, energy, and spiritual practices. I have invested time and resources to change in my daily habits, thoughts, outlook, and mindset, and engaging with astrology and Human Design to figure out my life purpose, why I am here, and what some of the challenges are for my in the years ahead.

None of this has been easy for me. I have sought support in groups of like-minded individuals, but have shied away from sharing with friends, family, and readers, because I have a lot of logical skeptics in my life, and it felt too new and precious and vulnerable to share. I was not ready to hear the nay-sayers for fear they would cause me to second guess my decisions and stop listening to my intuition, with which I was only just reconnecting and learning to hear.

I was blessed with scholarships to amazing online classes taught by strong women who began life steeped in science and logic and the left brain but whose life experiences opened them up and provided real, tangible proof of the truth of these lessons. These women and the other individuals I met in the classes and their communities helped reassure me that I was on the right path. I began to wholeheartedly embrace the woo.

Earlier this fall, it became clear that I am supposed to work on my gift of mediumship. Patrick showed up and connected me with a gifted woman who I now consider a close friend. That friend introduced me to the work of Suzanne Giesemann, a former navy officer who was an assistant to the Joint Chiefs of Staff, who developed an evidence-based mediumship practice after her step-daughter’s death convinced her there was more to life than our physical reality.

For the past month, I have been taking an online course on mediumship for which I received a scholarship. I am also going to start practicing with a small group of other folks who are also working on strengthening their gifts. Part of this process has involved starting and sustaining a meditation practice and connecting with my spirit guides. And some of the things I have been asking for are for signs of contact, confirmations of messages, and other evidence that I am on the right track.

This is all background to set the stage for this story. Earlier this week, I sat at the dining room table drinking tea when I heard an electronic chirp. You know the one. The dreaded smoke alarm low battery beep. It was coming from the kitchen. And I just knew, before I even went to look, that it was going to be the really high one by the ceiling. Why? Because it was the most inconvenient one and we didn’t own a ladder to reach it.

I gave it three more chirps before I went to investigate. Yup. It was coming from the high one.

If you’re paying close attention, you’ll see two smoke alarms in this picture. One about 2-3 feet above the doorframe on the wall, and one just to the right of the same doorframe. The two square items to the left of the doorframe are the thermostat and I don’t know what.

I hauled out one of our bar height dining room chairs to stand on to see if I could reach the smoke alarm. Standing on tip toe on the chair, my fingers could indeed reach the bottom of the smoke alarm. I began trying to turn the smoke alarm left and right, to remove it from the frame, but it wouldn’t budge.

After a few minutes, I got down from the chair and rotated the smoke alarm to my right to figure out what direction it should turn, so I could focus my efforts. While I had it off the wall, I confirmed that it had a battery, that the battery had a good charge, and that it was not the source of the chirping.

I eventually returned to the chair and redoubled my efforts to get this chirping thing off the dang wall. I pushed and pushed and pushed with my fingers as best I could until I finally felt it budge. Yay!

I hopped down off the chair, flipped that thing over, and popped open the battery compartment. This is what greeted me.

It had no battery. My mind exploded. I was shook. I had just spent 15 minutes listening to this alarm chirp the “low battery” chirp when it had no battery!

I knew, in that moment, that it was a message from spirit, and I had to make a choice. I could believe the evidence of the communication in front of me and move forward honing my gifts, knowing that I was going to experience more unexplainable things, or I could turn my back and shut down my gifts again. But I couldn’t stay who I was. That was no longer an option.

Honestly, I was so excited! I have believed in spirits and trusted mediums for a long time. To see some validation of the work I had just begun felt so reassuring. But it also meant that I had to leave my comfort zone. I would have to start telling people what I was up to. If this were to become a profession, I couldn’t exactly hide it.

So I’ve sat with this story for several days. I shared it with my kiddo and my spouse and my counselor and my close medium friend. And each telling left me feeling more excited. More empowered. More validated. And it left me with the feeling that now was the time to share the story, and the background behind it, more publicly.

So here we are. Now you too have a choice. You can believe my story as I experienced it and relayed it to you. You can find some version that includes details I left out or didn’t discover that makes it “make sense” according to the “regular” rules of our existence. You can write me off as someone not worthy of belief—perhaps a Christmas fruitcake.

Whatever you decide is fine. I don’t need you to believe me. My experience and my interpretation of that experience are sufficient for me. I have chosen to share because it was an amazing moment of growth and realization for me, and I have come to love sharing those moments with you. What you do with this story now is up to you.

I hope you’ll join me on my continuing journey as I discover and hone these gifts and help support me through the challenges ahead. But if not, if it’s too woo, or whatever other reason it may be, I understand. I bear you no ill will. You’re on your own path, and it’s perfect for you the same way mine is perfect for me. And I love that for both of us.

Namaste.

PS - all of the smoke detectors in the house have fresh batteries, and the ones that were more than 10 years old (the one that chirped and one other I found that also lacked a battery were both 21 years old (!!)) have been completely replaced. Because whatever else the message was for me, I recognized a sign to update smoke alarms when I saw it.

A Day of Re-Membering

[This post originally appeared on my personal Facebook page, but as I finished it, realized it was the beginning of a return to my Blog. So it, and the post I wrote earlier today, have been re-posted here.]

I have been given so much to say today. I am trusting that each thing reaches those who need to see/hear/read it.

I just watched the 2018 version of A Wrinkle In Time. I tried to watch it when it first came to Disney+, but for whatever reason I couldn’t. The truth, as I understand it now, is I was not ready. Because I didn’t remember the first few minutes at all. If I had, I surely would not have picked today, of all days, to watch it.

As I texted Phil this morning, remember how Up kicked the shit out of our hearts while we were dealing with infertility? Well, A Wrinkle In Time “upped” its game by 100 and tore my heart out and stomped it on the floor before handing it back to me all band-aided up again.

It was, without question, what I needed to see/hear/know today, of all days. About the power of the frequency of love. About knowing and integrating my faults, my shadows, my “bad” parts. About loving others exactly where they are. Because, to paraphrase the Happy Medium: it’s okay to be afraid of the answers; we just can’t avoid them.

When I first visited Phil in Michigan in 2003, we went to Celebration Cinema and watched Love, Actually. Watching it together is something of a holiday tradition for us now. And one of our favorite lines has always been when Sam says to Daniel, “Let’s go get the sh*t kicked out of us by love.”

Here we are, 20 years later, back in the Midwest, starting over again. And I realized that this quote encompasses our entire journey together.

Learning how to love each other through our faults. Deciding we were ready to start a family. Struggling with infertility. The highs of pregnancy and birth. The lows of miscarriages and medically-fragile children. Holding each other through the storms of hospitalizations. Realizing Mira’s medical struggles were merely preparation for the bigger waves that could capsize us with Patrick. Doing our best, for ourselves and our family, through the roller-coaster of Patrick’s life and death. The 9 years since we have spent figuring out what it means to be broken; how to heal; how to move forward.

Watching as each of us, in our own time, in our own ways, begins to shine our light again. Begins to emerge from the shroud that has engulfed us for what feels like forever. As we find ourselves again. As we find ourselves anew. As we figure out who we are. Who we have become. And love each other because of and in spite of all of it.

That’s what wedding vows are: promises to ride the roller coaster of life together. You can see amazing views from the highest of heights and lose your lunch on some crazy turns and be terrified or even rendered unconscious by some of the lows coming out of those spirals. But being human—living this life to the fullest—is all about experiencing the ups and the downs and everything in between. Your soul’s incarnation was your agreement to get the shit kicked out of you by love. In all of its most beautiful, tragic, amazing, incomprehensible, sorrowful moments.

And, believe it or not, it’s always worth the ride. Why else would we fight so hard to be here; to stay here; to live longer? Because despite the pain and the hurt, the beauty and the love nourish us and keep us going. Love is always there. Even when you can’t feel it. Because—You. Are. Love. And—You. Are. Loved.

I am reminded of Katy Perry’s song “Hot and Cold”. I never realized how right she was, because she recognized the person was not hot OR cold, but hot AND cold:

'Cause you're hot then you're cold

You're yes then you're no

You're in then you're out

You're up then you're down

You're wrong when it's right

It's black and it's white

We fight, we break up

We kiss, we make up

You don't really want to stay, no

But you don't really want to go

You're hot then you're cold

You're yes then you're no

You're in then you're out

You're up then you're down

This weird miss mash of life. It’s not “or.” It’s “and.”

Earlier today, I wrote the following as a comment on a friend’s post. And I realized it’s a variation on this same theme:

We forget that life is a circle.

Difficult time raise Hard People. Hard People work to create Easy Times. Easy Times raise Soft People. Soft People create Difficult Times.

There is no cycle of creation that has no destruction. The question is whether the destruction is thoughtful, necessary, limited. Like in Michigan when they stopped natural forest fires and then began losing special trees because the seeds only broke open in the heat of the fires. The destruction is necessary for new life. But we can be targeted and intentional about it so that the new life comes without unnecessary loss of property and life.

But we forget life is a cycle. We only want the up. And it just doesn’t work that way. So instead of spending time figuring out how to turn the cycle into an upward spiral by harnessing the destructive part of the cycle, we pretend it doesn’t exist and lose all our progress when it shows up.

Image by Nik @helloimnik from UnSplash

We’re human. We forget. It’s our very nature. But when we remember? When we hang on? Those are the brilliant moments we take massive leaps forward. Jumps the size of which we never knew or believed were possible let alone that we were the ones capable of making.

I set aside today as a day of remembering for me. But I got far more than I bargained for. I am re-membering myself. The quick flashes and glimpses I have seen these past few months of me coming back to myself. Skills and talents left dormant. Gardening. Singing. Baking. Dare I say, Writing.

It’s coming back. I’m tuned back in. I found the frequency again. I finally looking forward and excited to discover what’s next. I’ll do my best to post here and at my blog, so that if you want, you can come along, too.

Namaste.

Happy 10th Birthday, Patrick

[The following was originally posted as a post on my personal Facebook page.]

Struggling with words and feelings today. It’s Patrick’s 10th birthday. But do I say it is, it was, or it would have been? I mean, it is. We use present tense for the statement about dead people all the time. It’s so and so’s 100th or 200th birthday. But we generally understand with numbers that large that these are celebratory memorial birthdays. When you say it’s someone’s 10th birthday, the expectation is they are still alive for the celebration.

And then there’s the fact that it’s the big 1-0! This is a huge birthday milestone! Double digits! I remember always hearing those words prefaced or followed by “you made it!” But Patrick didn’t make it; not corporeally, anyway. And yet, at times I’ve felt ridiculously giddy and excited this past week knowing his 10th birthday was almost here.

Phil pointed out that we’ve survived 10 years, and I guess that’s part of it. But I’ve felt unsettled each time I recognized the feelings of joy, excitement, and anticipation for today. So I’m taking the day to sit with them. Feel them. Wish my sister a Happy Birthday because it was her day first, before life overshadowed that.

I think part of it is because I heard from Patrick this week. I was on a Zoom meeting and one of the other participants noticed some energy hanging around me. Afterward, she reached out through a mutual friend to ask if I was open to figuring it out. Long story short, it was Patrick and one of my grandfathers with messages for me.

I’ve had lots of mediums and spiritually sensitive people tell me Patrick’s never left me. One friend who did bodywork on me explained that he left a little footprint imprinted on my heart and that she’d never seen anything like it before. And I’ve said for a very long time that his outsized effect on the world meant he’s still here in many ways, even if I’m not raising him. So he’s not gone. Not really; only in the corporeal sense.

And I’ve found myself pondering the fact that his birthday is so close to Samhain and Halloween, when the veil between worlds is said to be thinner.

Anyway, one of the things the medium shared with me was that Patrick was sorry he had to go. I nearly laughed. I have considered myself blessed that we were able to give Patrick a good death and that we had no regrets about the choices we made. The only thing I have ever wondered about is whether he knew that and was okay with the choices. To have that question lifted. To know that he had to go, so the choice we made to spend two weeks together as a family really was the best choice for all of us. There are no words to describe what occurred—the breaking open of my heart and its simultaneous healing. Like it shattered into pieces but was instantaneously mended with gold energy, similar to the Japanese tradition of kintsugi.

So, it’s been a big week of feelings and knowings and learnings. And today, my forever baby boy would’ve turned 10. Turns 10. Is 10. I ponder the 10th anniversary of his birth. Whatever.

As a person who knows the values of words and spends so much time looking for the just right word, knowing that this moment isn’t about the words is weird. I write to process. To share. To educate. To inform. But some things just defy explanation. Language can’t really describe the comfort brought by the hug of a close friend, the softness of a baby’s hand on your cheek, or the scent of heaven wafting off the crown of their heads. A picture is worth a thousand words for a reason. Feelings can be, too.

So today is about feelings. Sitting with them and letting myself feel them and doing my best to keep my brain out of it; removing judgment or shoulds or need tos. Living in the tension.

Loving my son. Loving my sister. Loving the new friends Patrick has brought into my life who are having their own grief experiences. Loving my family. Grieving the life I expected. The one I thought I was going to have. Learning to love the life I do have and who I have become. Feeling Happiness and joy and loss and sadness.

Because they aren’t two ends of a line. It’s not either/or. It’s both/and. Happy tears. Downpours in the sun. Gone but still here. It’s all part of life; part of our souls having a human experience. We have to feel these things. It’s why we’re here. Every feeling, every experience stems from love. The warm, fuzzy ones are offshoots of its appearance or presence and the dark, prickly ones are offshoots of its removal or absence. Go back to the source. Find the love. Remember that. That’s what I’m doing today.

Happy birthday, Patrick. I love you.

Rethinking Education

Photo Credit: Jess Bailey, Unsplash

I haven’t done any official polling, but I think most people agree that our current education system is broken. I’m not sure that there is any consensus on the ways in which it is broken, and I’m positive there is no agreement on how to fix it. Me, personally, I think it needs to be dismantled entirely and rebuilt from the bottom up. And, I think we missed a huge opportunity with COVID to do this. We finally saw, as a society, some of the huge problems with the system. But I think there’s one thing pretty much everyone can agree on—schools rely too much on standardized testing. We test too frequently, rely too heavily on the results, and under circumstances that are never going to accurately assess what children actually know. This issue, all by itself, is education’s biggest failure.

The point of education is to learn necessary and vital living skills and information. And the point of testing is to assess what they know, fill in the blanks, and build on that. But if the testing conditions result in children having a panic attack and being unable to answer a single question because of anxiety and sensory issues coupled with their body’s literal refusal to comply with external demands, no one will ever discover how much they know, and we destroy their self-esteem in the process. Children who receive various necessary accommodations end up testing in different rooms from other children, raising the likelihood of their peers declaring that their scores are “invalid” because they got “extra” time or other “unfair advantages.” But if the noise in the testing room is so overly distracting that I cannot hear myself think, how is providing me with a quiet room an unfair advantage? Rather, it’s the person who doesn’t need the quiet room who has an unfair advantage in this situation.

Also, why is a child’s ability to properly transfer their answers from the test booklet onto a scantron bubble sheet the final arbiter of the child’s knowledge? One miss-bubble could cause a child who answered every question correctly to end up with a failing grade. Why do we demand that third graders complete this skill under a time crunch? What if transferring all of the answers became a secondary task completed at the end of the test? Why does each section have its own time limit? Why not let kids who are great at math have some extra time to work on a more difficult language section and vice-versa?

This week I administered a standardized test to my homeschooled kiddo. We took five days. Day 1, they powered through the two reading sections. Day 2, they struggled through a single math section. Day 3, they struggled through the second math section. Day 4, we took a break. Day 5, they breezed through all four language sections. Next week, we’re going to take all of the answers they put in the test booklet and transfer them onto the bubble answer sheet. Why? Because it’s a difficult skill for them—just ask their OT. There’s absolutely no reason to ask them to do it under high-pressure circumstances. I also let them listen to music because it helped make them less anxious. And there was no chair scooting, coughing, sneezing, pencil tapping, finger drumming, loud gum chewing, or innumerable other distractions that naturally occur when you have 20 or more kids in the same room, which also improved their ability to concentrate and focus.

My role as proctor on Day 3 was less than traditional. I spent the entire time clipping the tops off and handing over a continuous supply of ice pops to keep kiddo’s blood sugar up and numb their painful teeth because they had their braces tightened earlier in the week. What do we do for the poor kid at school whose braces got tightened the week of standardized testing? Or the diabetic child who needs to eat throughout the test? These are circumstances I can easily accommodate in my home administration of the test, but which unnecessarily disadvantage students who must take the test under the rigid conditions at school. I can guarantee you that if my child was required to take a standardized test, it would in no way reveal their truest knowledge. Indeed, their standardized test scores in third grade were so low that they were placed in remedial classes—classes the teachers immediately advised were unnecessary because my child had the vocabulary and reasoning skills of an eighth grader.

But that isn’t why I homeschool my kiddo. In fact, I never intended to homeschool my kiddo. I was adamant that they were going to go to public school. I became extremely angry and frustrated when it became evident that school wasn’t working for them. My internal rant went something like this: “I had to suffer through it. We all did. It’s just the way things are.  Suck it up.” But as the demand avoidance increased and the meltdowns at home began to destroy any chance of ever having a relationship with the kiddo, it became clear that I had to adjust to who they are and how they learn, and regular school was never going to work for them.

In this way, COVID was a blessing. Watching them do school at home, I was finally able to see the mask drop and teachers and administrators finally saw the child I saw—the one that was overwhelmed and struggling to be perfect and not cause trouble, but entirely physically and emotionally dysregulated. I was soon as frustrated as my child as I tried to navigate the system to get my kiddo properly assessed and fought to get them the services to which the law entitled them, but that the school continually refused to provide. I even had to fight the school to get it to acknowledge that their own assessments revealed a need for accommodations.

Photo Credit: Unsplash

Having made no progress after spending thousands of dollars on an education attorney, I began to think that homeschooling was going to be the only way to make certain that my child’s needs were met. Unfortunately, my research only left me more frustrated as I tried to navigate the statutory requirements in New York—where we lived at the time. And I say that as a licensed lawyer! Worse, the homeschooling I had been trying with my kiddo didn’t seem to be working any better. It didn’t matter what traditional or online curricula or individual books I tried, the meltdowns and refusals continued to increase.

I finally decided to have my kiddo privately assessed so that I knew how best to meet their needs and get them the physical and mental developmental supports they needed. That also took forever and cost an arm and a leg. While we waited, I decided to use that time to “unschool” my kiddo. There are lots of definitions of unschooling and lots of explanations. For us, unschooling was essentially decompression time. Demands for learning were removed to give the kiddo’s nervous system time to calm down from the perpetual fight/flight/freeze/fawn/flop responses. It gave all of us time to essentially reset and create a new foundation from which we would try to build. It also gave us space to rebuild the relationship that had been severely damaged from all of my attempts to force my kiddo to fit into the broken education system. We talked a lot and began to rebuild trust a little at a time. The more they saw me keeping my word, the more they trusted me when I said things would change.

During this time, I was also lucky enough to discover a woman who knew all about homeschooling in New York and believed strongly in child-led learning. What I learned was nothing short of life-changing. Homeschooling is not the same as doing school at home—or at least, it doesn’t have to be. Indeed, this process taught me that I had to “unschool” myself. I had to relearn that education and school are not the same. One of the best things I learned from her was how to translate everyday activities into edu-speak. I was learning almost as much as my kiddo was, because I was learning to look beneath what most people saw and describe the learning that was actually happening instead. I suddenly saw the value of play and experimentation.

When we left NY for the Midwest, we were pleased to discover that our new state didn’t have the voluminous paperwork requirements NY had, which had made certain aspects of homeschooling easier. But the homeschool system is not easy to navigate—something I think is intentional—and it’s also unavailable to too many people. I see parents posting about their neuro-diverse kiddos and the struggles they are working hard to overcome in our cookie-cutter school system that demands quiet, passive compliance more than learning anymore and I worry about how many other kids are masking at school and exploding at home, or unable to be quiet and still for the ungodly long day, losing access to recess—the one things they truly need—as punishment for their non-compliance, and receiving emotional wounds that they will carry for a lifetime. How many parents know their kids need something else but can’t give or get it for them for innumerable reasons?

• parents/guardians who can’t work from home or stop working in order to homeschool;

• broken or overly burdensome systems designed to be so complicated that people give up trying to access or continue using them;

• the inability to get the assessment services necessary to properly diagnose kiddos, whether from inordinately long waiting lists, or the cost-prohibitive nature of a private assessment

• underfunded special education systems, unable or unwilling to accept anyone but the most obviously needy children;

• school systems refusing to provide required services because they know the parents can’t afford to litigate and there are no real consequences even if the parents do;

• overworked, underpaid, and demonized teachers with unwieldy class sizes that prevent them from meeting the needs of all of their students, but who still try because they are passionate and then end up burned out

• vouchers taking much-needed funding from public schools and funneling it into the hands of private schools where there is rampant and permissible discrimination, racism, and religious indoctrination and no accountability

I don’t have any answers on how to fix this. Not yet, anyway. But I have spent so much of my own time and energy discovering the fissures and problems, I want to become a resource that allows other families to save some of their energy and resources not having to do all of this same work. So I’m exploring what that would look like.

Photo Credit: Robert Collins (@robbie36), Unsplash

In the meantime, I want you to imagine with me an education system where kids are excited to go each day. Where their individual needs are met so that they can become the best version of themselves. Where they are excited to learn and grow and try and fail in a safe environment. Where they aren’t funneled in any particular direction. Where they are encouraged to play, to explore, to experiment, to try. Where they are rewarded for what they learn through failure as much as they are when they get things right. Where kids who need structure and limits get it, and those who don’t can receive space without excessive regulation. I’m feeling strongly pulled to research and advocate for radical changes to our education system to make this dream a reality. If you have thoughts or ideas to share or know of resources I should investigate or tap, please let me know.

Adventures in Househunting

Today we broke the news that we’re leaving Long Island and moving back to the Midwest later this year. Along with this move will, likely, be the return of us as homeowners. Having lived in a parsonage for the last 4 1/2 years has been very helpful and not nearly as difficult as I had always believed. That is due in large part to the congregation’s respect for boundaries, for which I will always be grateful.

But this post is about something else. Ad we are looking to buy a house, I wanted to share some of the fun, strange, confusing, outrageous, and bizarre things we come across. Today’s lesson includes some important advice. This is not legal advice. I am not your lawyer. But I believe it to be good advice. Let’s start, shall we?

Lesson One: Always Read The CCRs

If you’re buying a condo or townhome, you’re pretty much assured to be joining a housing association and have monthly dues. But these days, many single-family home subdivisions also have them. Something else they may have is covenants, conveyances, and restrictions, or CCRs. These run the gamut from don’t let your grass grow over 2” and no painting your door fuchsia to you must be 55 or older to live here. CCRs are designed to give and keep a particular feel to a neighborhood.

The thing about CCRs is that they “run with the land.” This is legal speak, but it means the restrictions are legally tied to the dirt and, if you buy the dirt, you are bound by those rules, whether you read about them or not. I have seen lots of litigation over stupid stuff, small stuff, and small, stupid stuff. But small, stupid stuff tends to be the domain of homeowners’ associations, and some neighbors like a little more control than others.

Here, I present a variety of CCRs [with annotations] all for a single neighborhood.

1. Only two pets. No pit bulls. [Sorry. Not getting rid of one of my three pets for your control needs.]

2. No fences (underground like invisible for pets okay). [What if I’m a nudist?]

3. No overnight parking on the street. [They get a lot of snow. This is not horribly unreasonable.]

4. Guests may not park overnight in your driveway. [Say what? Where exactly do you want them to park?]

5. YOU cannot park overnight in your driveway. [Why do I own said driveway exactly?]

6. Regardless of whether you finish your basement, you may not include any such square footage in the advertised size of your home. [Uh, what? Is this even allowed? Isn’t this standardized for appropriately listing homes for sale?]

7. Requirements for a specific mailbox, and light pole, and mandated use of a solar-powered light in the pole. [Picky, but not totally outside the range of reasonable demands.]

8. No temporary or permanent tents, tree houses, sheds, play houses, etc. in any yards. [Good thing we weren’t practicing for a Scouting trip or anything.]

9. A point system for the types of trees and bushes in the landscaping and requirements to maintain a certain point value for your yard. [Math was not supposed to be involved in plant and tree selection!]

Needless to say, we quickly crossed that home off our list. NOPE. Not paying for the privilege of inconveniencing my guests or not being able to get my kid a car because we only have a 2-car garage. But if we hadn’t paid attention to the listing where it gave a website to find the CCRs and then gone looking for them, we could have been in serious trouble once we tried to move in!

So, please, before looking at or falling in love with, but especially before buying a home, READ the CCRs and know to what you are agreeing!

This endeth today’s lesson.

I’m curious. How many of you would be willing to live in this neighborhood?

Regarding Fergus

CW: Pet death, infant death, grief, PTSD

Yesterday nearly broke me. My beautiful, ginormous orange fluffball cat Fergus/aka “Bob”/aka the Big Orange Booger/aka the Patriarchy died suddenly and unexpectedly. Fergus was born almost exactly 6 years ago as a barn cat to some friends of ours.

He was the only ginger in the litter and I begged my spouse for another kitty because we were already at our limit of two. My hubby agreed, and we watched on FB as our kitten grew and became socialized and, in August 2016, while I was away at a congenital heart conference, Phil & Mira collected Fergus and brought him home, his jaunty clipped ear the only sign he had ever been a barn cat.

Hard to believe now, but Fergus was a tiny boy, fitting entirely into the palm of our hands when we first got him. Never in our wildest dreams did we anticipate what a behemoth he would turn out to be.

I’m helping!

When we moved from MI to NY, he disappeared on us in the new house. Four adults and two children searched everywhere in an essentially empty house for over an hour. We all assumed he must have wandered out the front door when it had been left open for a period of time. When we located him the next day, he came sauntering out of the laundry room, presumably having squeezed himself back behind the appliances. He never did set foot back into that room again (not that I blame him). Only last year, when we needed to clean the dryer vents, did we find the desiccated remains of the piece of pizza he had stolen and taken back there to eat in private. He was something else.

Give me the water, you plebe!

On occasion, you might be petting his fluffy self and find a weird wet spot. Often it was on the top of his head, but not always. This weirdness was finally explained when we discovered he loved hanging out under the faucet in the bath and sauntering around a freshly used shower. He hated water most of the time, but these were happy moments for him, and I feel sure he loved knowing we were going to be happily petting him until we hit a wet spot and just left wondering if we needed to go wash our hands.

He also loved to be where the action was. Oh, you’re working? Let me help by fwooping my 20lb body across your keyboard, or sticking my fluffy tail between you and the screen you are trying to see. He was a boy who loved to try and take (often successfully) the pages as they came out of the printer.

Fergus, King of the Printer

Fergus was curious and had no boundaries. You had to feed him first, or he would try to eat the dog’s food while you got his ready for him. He would insinuate himself onto your lap or into the crevice next to you and then spread out as much as he could in the hope that you would move. He would purr loudly, merp three octaves higher than you would expect, and grab your hand with his paws if you were not giving him the petting to which he believed he was entitled that very moment. If he stretched out to full length from the floor, he would likely be able to touch your shoulder if you were sitting. He was big, sweet, and dumb as a bag of hammers.

Yesterday, we headed out early for a long drive to get a medical evaluation for Mira. My sister has been visiting to help the household run since I just had spinal surgery. She called to let us know that Fergus’s back legs were not working well and he was not interested in food or water. She said she would keep an eye on him. I Googled the symptoms and determined that it was most likely a blood clot and that he was not coming back from this because even cats that survive the first clot often throw a second, so euthanasia was the kindest solution. Since he was not exhibiting any signs of pain, we decided to just let things be until we could get home. On our drive back several hours later, I called the vet and was able to get an appointment for 3:20 pm. We arrive home around 1:00 and found our buddy lying on the floor, kind of purring to himself in a self-soothing way. I couldn’t stand it. We wrapped him up in a blanket, and I had my sister hand him to me while I sat in the recliner.

Friends, when I tell you we were not prepared for the next few moments, I cannot emphasize it enough. Suddenly, I was back in September 2014, holding our 10-month-old son wrapped in a blanket at he breathed his last breaths. Patrick in a soft green blanket, Fergus is a soft blue, both breathing shallowly and difficultly. In that moment, I knew Fergus would not make it until his 3:20 appointment, so I talked softly to him and told him how much we loved him and would miss him, and asked him to go meet Patrick and play together until it was our turn to arrive. When Phil came in, leaned forward, and whispered in my ear that he was about to break, I knew the moment had caught him unawares in exactly the same way that it had caught me. We were watching our baby boy die all over again.

And what was worse? This time, Mira, now 11, totally gets the loss and finality of death in a way she did not at the age of 3 when Patrick passed. It was an excruciatingly beautiful and sad moment when she came and sat with me after Fergus had breathed his last breath and she began to pet his head. We all cried, but we also talked about what a little shit he could be and laughed at the antics that had brought us so much joy over the last six years.

When it came time, we took him to the vet and made plans for his cremation. I also elected to get a mold of his paw print. And then the vet dropped the bomb I had not been anticipating. “I’m so sorry,” he said. “When we heard the heart murmur last year and did the blood test, it showed that he didn’t have any risk at that time. Unfortunately, this is a classic case of what happens with cats who have a heart murmur—they throw blood clots and it lands at the saddle juncture…” When I tell you that my heart stopped, I am being literal. I have heart palpitations that I take medications for. And when the vet said “heart murmur,” my heart skipped a beat. Because I had forgotten. In that moment, I was taken back to last summer when we first received word that Fergus had a heart murmur and all of the anger and frustration I had felt. Why?! Was having two kids with congenital heart defects not enough? Did my cat have to have one, too? I was so mad. But then the blood test came back fine. And we had so many other fights to fight, and Fergus was fine. So I forgot. Completely. Nothing I had read on Google had triggered that moment from last summer.

Friends

Now here I was. Already suffering PTSD and back in the moment of my son’s death, grief at the loss of him and Fergus swirling together, ready to take me under, and the vet had just told me, essentially, that my cat had died from complications of a heart defect. I’ve had some time to think and sleep on this, and I still don’t know what to do with this information.

And yet, part of me knows that’s a lie. Part of me knows that it was my experience with Patrick that informed my actions with Fergus. I held him and made him feel comfortable and loved, and reminded him he was not alone in the last moments of his life. Moments that were quiet and peaceful, instead of being spent in a car rushing down the highway in an effort to get to an emergency vet that would charge me $1000 just to tell me there is nothing they can do but keep him comfortable.

Six years is not long enough with a cat. Ten months is not long enough with a son. Loss sucks. Grief sucks. Seeing the downward spiral coming for you and not being able to get out of the way sucks. It’s terrifying. The fear washes over me. How long, this time? How long until I can begin to dig my way out again? How long will the dig take? What if something ELSE happens in the meantime? Why us? Why now? Haven’t we been through ENOUGH? God dammit! I am already physically broken and trying to heal. How do I do this?

Logo is a registered trademark of Mended Hearts

There are no answers to my questions. But then I remember that tomorrow is Pentecost. The color is red. Red like a heart. Red like good, oxygenated blood. Red like the symbols for CHD. And it’s seen as the beginning of the church’s mission to the world. It’s a reminder of my mission. To share, honestly, with others about where I have been and where I am; about my struggles. To educate and give others space to feel, process, and share their own stories if they feel so moved.

It’s also a reminder that God can and does give us more than we as individuals can handle. But I am not alone. My sister is here. My spouse is here, and we are both supported and loved by the congregation he serves. My friends and family can reach out by phone or social media. I am here for Mira and Phil. Our other fur babies are here, cuddling up to us and giving us comfort. This moment sucks. It hurts. It’s awful in ways I simply never anticipated. But I am wrapped up in and held up by the love of others. Just as I held Patrick, Fergus, and Mira in moments they needed comfort, love, and care, so too do others now do the same for me. We are a community. It’s the only way this works. Thank you for being part of mine.

Heart Month Day 7: Echo/EKG/X-ray

So, any heart parent gets pretty familiar with these tests. Every time Mira has a cardiologist appointment, she gets an echo and an EKG. Fortunately, medicine has come a long way and they work very hard not to x-ray her unless it's really necessary because they know that the very nature of her condition will expose her to more radiation long-term.

As far as echos (echocardiograms), Mira hates them. She would rather have a shot than an echo. She particularly hates the parts where they press hard--under the rib cage and up around your collarbone and neck. Having had several myself, I can't say I blame her. They are uncomfortable, you feel exposed, and then you have to wipe off all the goop. I am loathed to tell her that puberty makes them even less fun.

Patrick never seemed to mind echos. In fact, I don't remember them ever having to sedate him for them. He'd just grin at the tech as they slid the wand across his chest and occasionally try to grab the cord. He was getting attention, and he loved it.

Sleeping post-x-ray

With respect to x-rays, let me tell you a story. It's April 2011. Mira is vomiting a lot and generally not feeling well. We take her to the local hospital where they take an x-ray. She is diagnosed with "a BIG pneumonia" and given antibiotics and sent home. When she doesn't get better, we take her to the city hospital ER, where they do an x-ray, see nothing has improved, give her IV antibiotics, and send her home with stronger ones. No improvement, so we go back to the city hospital ER where Mira is admitted and where she will eventually be diagnosed with RSV. When they take additional x-rays, they notice that there is literally no change in the x-rays. Not better, not worse, images exactly the same. They figure out that the big white cloudy space on her x-ray was not pneumonia, but simply the absence of lung because the left one never grew very large, given that she has no left pulmonary artery.

And this is the story I use to remind myself that medicine is called a *practice* for a reason. They look at symptoms and play the odds. Until doctors learn that your child is plumbed differently, as the saying goes, "when they hear hoofbeats, they think horses, not zebras." Absolutely look for the best doctors and best care for your child, but remember that medicine isn't perfect. Most of the time, they are doing the best they can with the information they have.

Heart Month Day 6: Medications

When you first discover that your child has a CHD and will need surgery, it’s overwhelming. More often than not, you are just trying to get through the waiting, then the surgery, then recovery, and then home. It’s often a shock to discover that surgery has not “fixed” or “cured” your child.

When we brought Mira home from the hospital, she was on 6 medications that required a total of 15 doses per day. We got a dry/erase board and made a chart so we could check off each dose and keep track because certains meds lined up with various other meds at odd intervals and others had to be taken an hour after another. Figuring out how to give a 1-year-old medication that doesn’t come in liquid form was difficult. We had a pill crusher and “sippy fruit” that got us through until Mira was three or four and learned to swallow pills.

Patrick actually came home in fewer meds, although his increased with time, needing aspirin, Lasix, Tylenol, the top tier $60/month stomach med, and a crazy-expensive specialty formula (think $100/ small can, mail-order only) that had to be added to breastmilk to make sure he was getting enough calories.

NG tube

And since there isn’t a better place for this, let’s talk about feeding tubes. Mira had an NG-tube while in the hospital, but we fought like hell to get her home eating by mouth. There was no way I could be responsible for that. With Patrick, there was no choice. He was coming home with an NG-tube and we had to learn how to insert it so we could put it back in when he pulled it out, and to replace it each week. We even had our own stethoscope so we could listen to tune placement and make sure it was in his stomach and not his lungs.

I cannot explain to you the shock and PTSD I experienced the first time I had to give myself a COVID swab and felt it going into that space. I had flashbacks of shoving those godforsaken tubes up Patrick’s nose and it shook me. As scared as I was for him to have surgery to get a G-tube, I almost wish we had done it sooner as life was waaaay easier after that. Plus, we could see his beautiful face, and it was easier to keep him from pulling on the G-tube than one stuck to his face.

NG Tube

Tube-free face!

G Tube

Heart Month Day 5: Hospital

We were blessed in Michigan that there are three great hospitals that all treat CHDs. Our pediatric cardiologist said he would trust the surgeons at any of them with his kids. We ended up at Children’s Hospital of Michigan in Detroit. Both kiddos had the same surgeon and we could not be more pleased with the care both they and we received from the doctors, nurses, and staff. The hospital is full of amazing art and there’s even great stuff outside. We were there over two different Thanksgivings, so I figured I should share the Christmas trees from those stays as well.

These days, Mira is seen at Columbia in NYC. She loves taking a bite out of the Big Apple.

Hospitals can be scary places, especially when your kids are there. Don’t just go by a hospital’s ranking on some list. Look at convenience and how well the people there take care of you and your child.

Heart Month Day 4: Scars

Both of my kiddos have chest scars from their open heart surgeries. They also have several random scars around their rib cages where pleural tubes were placed to remove liquid around the lungs and wires were placed in case they needed to restart the heart. Patrick had a scar on his stomach from his G-tube.

Phil and I have scars on our psyches and hearts. Mira, too. You can’t go through things like this and not be scarred emotionally. And these scars are harder to heal because they don’t get exposed to light and air as often. They get tucked away; shoved down because they can’t be dealt with in the moment. I always intended to bring them back out when there was time. But there was never time.

Scars are tricky things. Visible or not, they mark us permanently. People call us survivors, but that doesn’t seem right. That sounds past-tense when, in fact, it’s ongoing. I am a surviving heart parent. And I do it one day at a time.

Heart Month Day 3: Surgery/Catheterization

Mira had a heart cath in Sept ‘11 to determine the full diagnosis and whether she would need surgery. She had OHS just before she turned 1. She had a second cath in August ‘19.

Patrick had OHS around 7 days old. He had several subsequent caths for various reasons, and his second OHS in June ‘14. He had one or two more caths after that, the last in August ‘14.

Having your kid undergo surgery is never easy. OHS is even scarier. But when you have friends with you for emotional support and an amazing heart surgeon you trust, it gets a little easier with each one.

Heart Month Day 2: Diagnosis

Mira’s heart problem was first discovered when she was 4 mo old and went to the hospital with RSV. The echo tech couldn’t locate her left pulmonary artery (surprise! She didn’t have one). She was dx with absent left pulmonary artery, med ventricular septal defect, and pulmonary arterial hypertension.

Patrick’s heart problem was first discovered when I was 18 weeks pregnant, but they didn’t have an “official” diagnosis until a week after he was born. He had truncus arteriosus with discontinuous pulmonary arteries and a hypoplastic left ventricle. My high-risk OBGYN swore at every monthly sonogram that there was nothing wrong with him and that everyone would see he would be perfectly fine after he was born. Thank God I listened to the pediatric cardiologists instead of her. And yes, eight years on, I am *still* angry about this.

Heart Month Day 1: Date of Birth

My heart kiddos were born in 2010 and 2013.

Nothing in my life prepared me for this journey, but I have made some wonderful friends along the way.

Disney Storytelling Timeline

This is going to be an ongoing and frequently updated post intended as a timeline to document the various changes in Disney storytelling. If you have additions, comments, concerns, or disagreements, please leave them in the comments. Thanks!

Beauty and the Beast - 1991

• Heroine reads, love books, and rescues the prince

Aladdin - 1992

• Heroine fights against arranged marriage; seeks marriage based on love

• Reverses overcoming class obstacles a la Cinderella by making the female royalty and the male underclass

Pocahontas - 1995

• Non-white heroine

Mulan - 1998

• Non-white, non-US-centric heroine

• Dip of the toe into gender issues re dress & military abilities & expectations

Lilo & Stitch - 2002

• Feature Pacific Islanders

• Siblings parenting siblings/absent parents

• Features songs in native non-English language written/performed by a member of the represented group

The Princess and the Frog - 2009

• Black heroine

• Black love interest

• Tiny recognition of whites intentionally trying to prevent blacks from moving up through the bankers’ actions

Brave - 2012

• Heroine has no interest in romantic love

Frozen - 2013

• Challenges the idea of marrying someone you just met

• Villain isn’t obvious at the beginning

Big Hero 6 - 2014

• First to deal with the various expressions and responses to grief/death/loss

• Sibling loss

Inside Out - 2015

• Trauma of moving

• Utility of emotions—they are neutral; neither bad nor good

• No villain

Zootopia - 2016

• Directly addresses racism & bigotry, through allegory

Moana - 2016

• No love interest/plotline for the heroine

Frozen 2 - 2019

• Acknowledgment of family’s past bigoted/hurtful actions and being proactive to fix the harm, with knowledge and acceptance of personal sacrifice that will occur

Raya and the Last Dragon - 2021

• Heroine and antagonist are both female, smart, and capable

• Examines the competitiveness, fakeness, and backstabbing sometimes inherent in female friendships

• Voice-casting was more representative (East Asian—but see concerns that not Southeast Asian)

Encanto - 2021

• Set in Columbia

• Female leader without royalty/governance lineage

Encanto

This is the first post in my discussion of important changes, additions, or inclusions in Disney storytelling. I am starting here because it is the most recent and also because it is my discussions with others about this film that was the impetus for starting this series.

Earlier today, my husband reposted a discussion post from Facebook where user Aimee Ford wrote and supported her observation that “Mariano is the most important character in Encanto. Not for the story, but for *Disney.” The post has since been removed or hidden, so I cannot link to it, but here are my screenshots of it:

I think Encanto is important because many of the characters break a mold. Here are just a few of my thoughts:

Augustin and Felix are very strong men to love and marry women who are objectively stronger and more powerful in their community and are recognized for their gifts. In “our” world, they would be seen as weak for not dominating their wives.

Augustin is in a particularly interesting position. He married into the family without powers and no expectations of getting them. Mirabel was expected to have them, but didn’t get them. He tries to empathize with her because he knows how it feels to be powerless among the gifted, but he never experienced the rejection and disappointment Mirabel did because he was never expected to be more. He has to watch his family crap all over his youngest daughter.

The head of the family is a woman. Not a king. Not a king and a queen. Not even a queen. Not anyone from whom leadership was expected. Not someone who had been groomed for power or raised learning how to bear such a huge responsibility. Just a “regular” woman. And she is in charge. Although the story involves the recognition that she made mistakes, Mirabel’s speech emphasizes that it was Abuela’s strength and sacrifice that allowed her to receive the miracle in the first place and save the family, but now the burden is no longer solely on her shoulders and she can let go and enjoy life without all of the responsibility.

I love the tensions being caused by Louisa. She is strong physically and is drawn consistent with that strength. They did not make her petite and magically strong. She looks like a physically strong person. But she in unapologetically feminine in dress and mannerisms, particularly when dancing. People are fighting about whether she is trans, but I think the beauty is that we don’t and won’t ever know. It isn’t relevant to the story and it isn’t any of our business. We have to accept her and her pronouns as is. We can’t test her DNA or look up her skirt. We have to live without knowing. And I think that is exactly the right answer.

I love that even though Dolores is interested in Mariano, she has no objections to Isabella marrying him without getting to know him because of family expectations. Indeed, arguably, Dolores knows Mariano even better than Isabella because she has heard him—as she tells him. But once Mariano is available and it is her relationship, she is not about to rush it. “Slow Down!” is her response to his proposal. Following in Frozen’s footsteps, instant marriage is off the table. I LOVE that about her!

Disney Series

Those who have known me for any length of time know that I am a lover of (almost) all things Disney. Now that they own Marvel and Star Wars, it would be nigh on impossible for me to separate myself from them forever. We watch and rewatch Disney movies in this house as background noise. We are saturated in the music and the stories, playing make-believe in the worlds that have been created. As such, these stories play an outsized role in shaping who my daughter is becoming.

As you may be aware, Encanto came out late last year and finally appeared on Disney+ on Christmas Eve. The first watching left my daughter and me both in tears, and we have watched it individually or as a family probably more than once a day since then. We have had numerous discussions about what we love in the music and story, pointing out details of visual foreshadowing and little funny Easter Egg type things we find anew with each watching, and having deep discussions about how rich and powerful the character and storytelling changes is Disney are. Today, my hubby reposted someone’s Facebook post that took the position that Mariano was the most important character in Encanto, not for Encanto’s story, but for “Disney.” I thought there was a lot of wisdom there, but I thought that there were many other pieces of Encanto that needed recognition for much the same reason. After quickly dropping a few in the comments, I went on to breakfast and started to think of some major changes that had shown up in Raya and the Last Dragon. And thus, this new idea was born. This is my discussion of many of the positive changes in Disney storytelling that have come “in my time.” The dividing line for these changes could be any number of places and there is arguable support for any of them. For my purposes, I have decided to make the division pre- and post-The Little Mermaid for three reasons:

1) Disney had very much fallen out of the blockbuster animation business until The Little Mermaid resurrected it from the dead.

2) Beauty and the Beast was the first Disney animated movie I saw in the theater, and since The Little Mermaid is the movie right before it, this is the Disney “I grew up with.”

3) Disney films were only available on VHS “back in my day” and “came out of the vault” once every ten years, so I was an adult before I had seen most of Disney’s early animation films, but I had been exposed to their art and story in book form for as long as I can remember. Thus, those stories still had a significant impact on my childhood in terms of princess worship and dreams, but not in the same way that the animated movies did.

Chances are that I will not manage to say everything about a particular movie in one post, and I am not planning on doing these in any particular order. I will try to tag them for search purposes, however. So, if you’re interested, I would love to have you come along on my journey through changes in Disney storytelling.

In Defense of Teachers

Photo Credit: Mira Kireeva (@solarfri)

This evening I attended a virtual “Meet the Candidates” event for the people running for my local Board of Education. One of the candidates indicated that in talking with members of the community, they had heard from parents that “ a lot of new teachers” had been hired for this past school year and that there was a feeling that some of these teachers were not sufficiently experienced to educate their children. I cannot speak to these parents’ experiences, but I can speak about my own. My daughter had four “new to the district” teachers this year, and I found each and every one of them brought something to the table. In fact, my biggest fear is that many of them will not be rehired for the upcoming year. So, I wanted to take a moment and talk about my concerns with this rather generalized argument and explain my support for not only the “new” teachers but all teachers.

My first problem with this argument is that the speaker did not define their terms. The statement made was that the district had hired “a lot of new teachers” for the 20-21 school year. The implication from the remainder of the argument was that these were inexperienced teachers who were not able to provide an adequate education for the students in some way. But who were the “new” teachers? Not all “new” teachers lack experience. A teacher could be new to the district but have years of previous experience teaching somewhere else. Therefore, just because a teacher is new to the district (i.e. newly hired) is not a sufficient basis on which to judge their adequacy as a teacher. Furthermore, even assuming that the statement was meant to refer to newly credentialed teachers (i.e. lacked any previous teaching experience other than student teaching), that is still not enough information to tell whether they are a “good” teacher.

I want to take a minute and talk about “good..” I deliberately chose not to use “qualified,” because, presumably, a teacher would not have been credentialed or hired if they did not possess the required knowledge and experience to be considered “qualified..” At the same time, “good” is an extremely subjective term. Indeed, what constitutes a “good” teacher could be the topic of its own blog post. So, for purposes of this post, I use the term “good” to mean that a teacher knows the material they are teaching to the students, connects with the students, and adequately communicates both their expectations and the subject content in a clear and appropriate manner.

Photo Credit: Ian Schneider (@goian)

So, let’s talk about newly credentialed teachers. There are generally two categories: bright fresh young adults out of college, and second-career folks. I wanted to talk about the latter first. I find second-career teachers on the whole to be extremely good teachers. They have been out in the world actually using the subjects they are teaching in everyday life, giving them an extremely good handle on not only the basics but often the minutiae of the material. They can easily provide answers to the “how is this relevant to my life? when will I use this outside of school?”-type questions. They also often have great, relevant stories that can entertain. Both my brother and brother-in-law are second-career teachers in physics and history, respectively, and both of them are adored by parents and students alike. My cousin has been involved in music all of her life, providing private piano and voice lessons before becoming a full-time church choral director. This past year, she became a first-year high-school choral director; not an easy task during the year of COVID. In fact, I would argue she had what was probably the most difficult class to navigate given all of the extra concerns and cautions related to singing that come with COVID. And yet her school received a First at the state’s choral competition (among other music department awards). New is not the same as inexperienced and it is not equivalent to incapable. My daughter’s art teacher is an amazing woman who comes from the art world and has been teaching the children all kinds of things I never learned in art. She had found ways to tie projects into topics and games the children find interesting. One of the things she shared with me is her desire to teach kids that, out in the world, “art” is not just painting or sculpture or getting into galleries, but digital art, comic book illustration, toy building and modeling, animation, advertising design, and so much more. She brings a huge wealth of information to the students that no teacher, no matter how many years of experience in the classroom, could provide. To in any way suggest that she is not a good teacher because she is newly-credentialed lacks logic and merit.

Photo Credit: Beci Harmony (@bacihannah)

So, let’s move on to the last of the three types of “new” teachers—the young adults fresh out of college. First, let’s remember that all of these teachers have numerous hours of student teaching. Experienced teachers and administrators have watched them teach these subjects to other classes of students and deemed them, adequate teachers. Presumably, we should be able to trust our seasoned educators to make these determinations. If not, our problem lies not with the newly-credentialed teacher, but with the credentialing system—something over which they had no control. and, therefore, cannot reasonably be held against them. Alternatively, if we do trust our credentialing system, then we need to show it by not outright dismissing the adequacy of the abilities of newly-credentialed teachers. Each of us started somewhere. None of us got where we are without having been given a chance by a person when we had no experience or no credentials. Furthermore, our blind deference to experience over raising up a new generation has shot us in the foot in many professions. My understanding from friends in the business is that there is an entire level of experienced engineers that simply does not currently exist because the people who ought to be reaching that level right now went unhired in years past due to budget cuts and other issues. Many teachers are reaching retirement age. If we don’t begin to hire new teachers and give them the experience they need to move forward in their careers, we are doing a disservice to future generations.

Furthermore, I would argue that young, newly-credentialed teachers are precisely what this strange year of teaching required. New teachers are now Gen Z. These are the native tech users. I am Gen X and even I consider myself to have “grown-up” using computers and the internet. In a year that required trying new things and changing tactics at a moment’s notice, heavy use of technology, and connecting with students both in-person and virtually, I believe that newly-credentialed Gen Z teachers were in the best position. They had just been educated in new ways of teaching and interacting. and had experience with all of the “new” technology, but were new enough to teaching that they were not heavily invested in any particular teaching method and could easily pivot if they suddenly found themselves teaching from home because they were quarantined, or needed to teach to students both in the classroom and at home. They also had the benefit of being able to craft their curriculum knowing about the difficulties of COVID, rather than having to construct something different by modifying a curriculum to which they had already become accustomed.

Photo Credit: Kelly Sikkema (@kellysikkema)

At the same time, I want to be clear that experienced teachers were amazing this year. Many of them engaged in Herculean efforts to educate their students to the best of their abilities under unique and unprecedented circumstances. To those who have complained that teachers “had it easy” this year, I want to share with you the story of my brother, who teaches High School physics. My brother is married to an amazing, immuno-compromised woman who has worked full-time from home this entire time. They have two children who could not go to in-person school because they could not risk the children bringing COVID home to their mother. Likewise, my brother could not teach in person for the same reason. Their two children were in 5th grade and kindergarten. The kindergartener took to online learning like a fish in water and had an amazing school year. The 5th grader struggled and, ultimately, had to be home-schooled. So, my brother spent most of his mornings home-schooling his older child but spent roughly two hours in online office hours answering any and all questions from students about lessons from the day before. He then figured out the lesson for the next day and, around 5:00 p.m., went to the school to record the next day's lesson once the building was sufficiently empty. The recordings for the various different classes (he teaches both AP and regular physics) were left for the aide to show to the various classes the next day, after which he would again spend several hours in online office hours making sure all of the students understood everything and, considering what he learned in that time, craft the lessons for the next day. What with overseeing one child’s online learning, home-schooling the other, making sure both children completed their homework, responding to students, creating and adjusting lesson plans, and recording multiple class lessons for his students, I am quite honestly surprised that he ever found time to sleep.

Photo Credit: Ozgu Ozden (@ozgut)

Did every teacher teach brilliantly this year? No. Was every student able to learn as well as they may have in years past? Most assuredly not. But this problem is not unique to your child, or your school district. Your child is not “behind.” Why? Because they are all “behind.” Everyone—every school every college, every parent, every teacher, every employer, must adjust their expectations. When children are born prematurely, or experience long hospitalizations for any reason, parents are told that we need to subtract that time from their age to understand where their education and emotional growth is. What happened with COVID is that it suddenly became necessary to do this for every child. They went through something huge this past year. We all did. We all still are.

What we need to do now is stop trying to hop directly back to “normal.” We need to process whatever the heck it was that just happened. It might also be helpful to take this time to evaluate whether going back to the way things used to be is actually desirable. Maybe, since we are already in a time of change and assessment, we can use this as an opportunity to change how education work, how employment works, how health insurance works, how our social safety nets work, how our government works, Maybe we decide we like what we have. If so, great. But maybe we discover that there’s a better way to move forward. A more flexible way that won’t bring our society to a screeching halt when (not if) another global pandemic hits. I think we owe it to ourselves to find out.

We are all tired. We are all stressed. We are all starved for human companionship and touch. Let’s be careful about the generalizations we make and the knee-jerk reactions we have right now. Yes, mistakes were made. But rather than throw blame around, let’s do our best to learn from them. Let’s try to be more thoughtful. More empathetic. Let’s model the behaviors we keep saying we want to see more of in our world.