Thursday, January 15, 2015

Establishing "rules"

* Warning time, everyone. This post contains segments where I talk about the Beats. I do have a reason for including this, which if you're able to get through I hope you'll follow my train of thought. That said, if hearing about babies/toddlers is a trigger, PLEASE SKIP THIS POST. As always, there will be others. Protect yourself and your heart first and foremost. 

(Sorry Mali. I know you hate when I do this....)

About a week ago, the Beats had their 18-month wellness visit. Following check-in, where all their vitals were taken, we met with their pediatrician to talk about how they were developing and go over immunizations. As their doctor marveled at how great it was that she was no longer seeing us monthly due to chronic ear infections as well as how great She-Beat was doing with her therapy, she turned to the medical student who was shadowing her to bring her up to speed. It was during this briefing that I learned for the first time that prior to their ear tube surgery, both Beats had tested outside the normal range for hearing. Shocked, I immediately butted into the conversation and asked about the findings. Turns out that the fluid that had been accumulating in their ears was not only the cause of ongoing ear infections but also was impacting their hearing to the point that they were living in a muffled world. Both Grey and I have noticed an explosion in language since the surgery, but we haven't thought there was a connection. Until that day.

A few days later, I brought this up with She-Beats physical therapist. PT has been going extremely well as of late and She-Beat has hit almost all of her benchmarks: shifting weight, crawling, cruising, pulling up, sitting down, climbing stairs and walking with support. For this last one, she will now walk while only hold one hand for support. Looking back through records, I noticed an exponential increase in improve shortly after her surgery. When I mentioned it to the therapist, she confirmed for me what was already going through my mind: her gross motor delays can be caused by balance issues due to fluid in the middle ear.

What this means is that it was never a matter of doing more tummy time or pushing this kid outside her comfort zone. She wasn't moving because doing so was like asking someone to walk a straight line after spinning them around 100 times. It meant all the prescribed fixes never would have worked until we fixed the root of the problem.

The past couple week, I've been doing a lot of reading and think about this issue, both within my life as well as following ongoing conversations following the explosion on Twitter. The conversation has taken many interesting angles, from advice about offering appropriate support to thoughts about being in situations of privilege to even background stories and support. All of this has happened as I've started teaching again, navigating the shuffle of the first week while connecting with colleagues who are feeling marginalized by the very institutions and student populations they serve. It's been humbling to read and witness all of this at once.

What's been surfacing are memories of my diagnosis and how all of that played out.

Here's the short of it for those who don't know my history: after years with zero explanation for why I couldn't become (or stay) pregnant, I had a RPL panel done that revealed I tested "weakly positive" for Lupus Anticoagulant. What this meant was it was possible I had APS. Possible in that I don't fit the formal definition for this condition and, hence, every doctor I talk to has their own opinion about my physical well-being. It should also go down in record that I was initially told I didn't need this testing by my first RE as I didn't fit into the formal definition. It was only after my second opinion that this testing was done. What this ultimately meant is that though I firmly believe the baby aspirin and Lovenox I was on throughout my pregnancy with the Beats was the reason I was finally able to carry a pregnancy for longer than a week, I ended up spending most of that time fighting with all my doctors to stay on those meds. Especially after I started having nose bleeds and frequent bleeding at injection sites. It meant that I had to fight with my insurance company to fill a prescription that they were convinced was unnecessary. And it wouldn't be until after I developed HELLP syndrome, with my MFM care team and every resident doing an emergency room rotation watching me go both into liver and kidney failure, that some of those same physicians would later tell me that those medications they didn't think were necessary were actually the reason that the Beats and I are still alive today.

Why I bring all of this up as well as recent events with She-Beat is due shift going on right now in this community where people are trying to reestablish rules of conduct for those at various stages of their journey. That somehow we can actually establish rules of conduct for every situation, with those who are at various stages of their journey having to recheck themselves with what they share or say in order to avoid hurting others.

Unfortunately, it's rarely that simple.

Like She-Beat's prognosis and my diagnosis, the rules for how one handles those living in trauma are never hard and fast. Where for one person stories of hope and "never give up" are sources of encouragement, another person would feel minimized and crushed. Where meeting someone in the grief and not pushing them is good for one, for another what they need is for someone to push them, challenge them to get them out of their funk. Even harder is that these trends change both with time and circumstances. Making any establishment of hard and fast rules of conduct absolutely moot.

Mel recent wrote a post talking about how strange our community is as our foundation is pain. Pain that many fear at their very core. Yet there's a strength with this foundation, as it affords for empathy and insight very few would otherwise understand. It's a powerful base; a unique one too.

The thing is, how does one approach pain of others? How do we properly support one another?

When She-Beat was first diagnosed with a gross motor delay, I felt an immense amount of guilt. A lot of this guilt was internal, with me blaming myself for all that was happening. Some of it was external, though. I had a friend who thought it would be helpful to send me links about milestones and "red flags," assuming that I wasn't properly addressing the issue. I also had others come forward and suggest getting her evaluated, giving me instructions on how to push the doctors for a referral and who to talk with at the local children's hospital. Later, her physical therapist communicated regularly with Grey and me about what she was doing and what to work on. Those first few sessions prior to the surgery were rough on us all, as we weren't seeing much improvement. But we all kept working and encouraging her.

The rapid turn-around we've seen since surgery is due to a few different factors. First being that the ear tubes have resolved potential balance issues. But the other main factor is that She-Beat had been practicing her milestones. The weekly PT sessions allowed her to work on pulling up, walking, sitting down and getting on all fours. There's some speculation that all that was needed was the ear tubes, but the benefits we've seen from PT have been hard to discount.

Supporting someone in this community can play out in a similar manner. People who are resolved with write posts about their journeys and experiences not to suggest that one has to take their path but instead to provide hope. It's meant as a take it or leave it situation. Yes, it can be hard to believe that one can feel certain ways or be doing certain things later on in life. In fact, some could see it as being very offensive. But sometimes the things we need most are the hardest to hear. And sometimes those resources are meant for us for later on.

I'll end by saying that I certainly don't have the answers. How can I as I am only one person who has made life decisions based upon my experiences, morals and beliefs. But for as young as I still am, I do know that set "rules" for support and social interaction rarely work. That assuming one can guard everyone is impossible. And that sometimes the thing we need the most can be the hardest to hear or go against what everyone else is telling you.

But, ultimately, that's all for each of us to decide.


  1. I am so happy to hear how well she-beat is doing!

  2. Good post Cristy. Infertility brings out the worst in us at times when we are at our most vulnerable. I think the best approach for all of us in interacting with others is to keep things simple and don't go too deep. Which at times isn't easy when we want to help each other.

  3. I really like what you say about something being meaningful later on. There are so many times when I've read a book a second time and, though the book was the same, I was different and it struck me in a completely different way. Sometimes I wonder what I ever saw in it, and sometimes it's like I'm finally ready to get the message.

    With a journey as protracted as infertility, I agree that this can be the case. Great post!

  4. You always know just what to say. This, "That assuming one can guard everyone is impossible.", especially, feels like something I have spent years learning and trying to remember.

    I am so glad she-beat is on the right path now, and that you have the answers to help. Yay for the wins!


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