Friday, January 23, 2015

Reassessment

* Beat post ahead. Please consider this your warning. As always, if you are not in a place where you can read stuff like this, please skip it. Protecting yourself must come first. There will be other posts. 

In the meantime, here's a photo of Jaxson. Sometimes kitty love heals all.


Four month ago, the Beats and I attended an intake appointment to address She-Beat's gross motor delay. During the appointment, as I talked with her case worker, She-Beat's physical therapist got on the floor with her and watched her play with a series of toys. The main concern at the time was that she was barely moving from her center of gravity, being very content instead to play with anything solely within her reach. During that appointment we generated a series of goals for She-Beat. We talked about revisiting all these goals in the new year, reassessing what was met and what remained.

Yesterday, during She-Beat's PT session, she took her first two steps unsupported. I literally had my back turned focusing on her brother when it happened. Still, she did it. Surprised when she got the response for this accomplishment. As the session went on, the physical therapist marveled at how far she's come in such a short period of time.

As our session drew to a close, She-Beat's PT sat down with me and asked me about reassessment. At this point she's met all of her goals. The question is now whether there is anything else that needs to be addressed. If not, we start transitioning out of PT.

On one hand, I'm beyond happy to get this news. Just shy of 16 months, She-Beat is caught up with her peers for gross motor. There's really no other red flags at this point, but the assessment will help us identify anything that may be looming and develop a plan of action to help her overcome those.

On the other, though, I'm terrified. Though I struggled a lot with She-Beat's delay, the truth is that I've come to rely a lot on this group with helping me with both Beats. We've had many discussions about not only motor skills, but also communication, cognitive and even emotional development. To have experts in these areas right at my fingertips (literally an email away) has been a comfort. What "graduating" would mean is that this easy access disappears. Sure, these resources are still there, but it would be different.

Today I scheduled She-Beat's reassessment, which will be next Tuesday. Poor kid is teething molars at the moment, so we're hoping that she's not too miserable for this. Still, like with any test, there's an air of nervous anticipation. Hope for good news; fear of the unknown.

Monday, January 19, 2015

#MicroblogMondays: Failing to support

Not sure what #MicroblogMondays is?Read the inaugural post which explains the idea and how you can participate too.

I have a good friend who's wanted to be a mother since I first met her 8 years ago. Sweet, loving and gentle, she's always the first to smile at a child. Drawing them in with her warmth. The thing holding her back for the longest time was finding a life partner and, now, a move. As the years go by, I've watched the sadness come into her eyes. She knows her window of fertility is slipping away.

It hurts watching my friend go through this and yet I feel like I'm failing to support her. With someone actively in treatment, pursuing adoption or looking into other options of resolution, it's clear how to support. But here, the water is murky. I don't want to push her and yet part of me wants to scream when she talks about waiting until various things are checked off the to-do list. I know she's aware of the window and yet the urgency seems lacking. And so I continue to fail, despite offers to listen and be there when she needs me. Instead I watch as I become another source of pain. 

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.

Monday, January 12, 2015

#MicroblogMondays: Shadows and Light



“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be?” 
~Marianne Williamson,  Return to Love

Not sure what #MicroblogMondays is? Read the inaugural post which explains the idea and how you can participate too.


Wednesday, January 7, 2015

Sock exchange list

I always get stranglers with this exchange, but please contact me if you are interested in participating.

Below is the list. Remember, all participants need to contact their partners within the next 24 hrs. If you do not hear from your partner, please leave a comment here.


Sunday, January 4, 2015

#MicroblogMondays: Finding a way

"Because the history of evolution is that life escapes all barriers. Life breaks free. Life expands to new territories. Painfully, perhaps even dangerously. But life finds a way."
~Jurassic Park


Not sure what #MicroblogMondays is? Read the inaugural post which explains the idea and how you can participate too.

Friday, January 2, 2015

Sock exchange revival

I've been waffling on this post for a little while. Partly because I've been so busy and finding time for something like this is daunting. That and the fact that Grey is likely to kill me once he finds out. But, in light of the recent news from Jay (and the fact that I've managed to polish off half a bottle of Chandon all by myself), I'm feeling festive. That and I need a good excuse to pick up the needles again.

Brief history on the socks: the idea is not mine. I found this idea while in the thick of infertility and was immediately inspired because it was something that I could do to spread support to those in the trenches. The thing is, I learned very quickly that support should never be limited to those undergoing fertility treatments. Support needs to be extended to all members of this community, be it that they are newly diagnosed, preparing for treatment, resolved after infertility and everywhere in between.

So, in honor of 2015 and all the promise of a new year, I'm hosting another sock exchange. With a twist. I will be participating in this exchange and my recipient will receive a pair of knitted socks from yours truly. Specifically this pattern titled Butterfly Garden.

For those participating, socks don't need to be handmade. Please remember I'm a crazy knitter who uses knitting as a form of therapy. If this isn't your cup of tea, please don't feel like you can not participate as I can easily recommend websites to buy socks from, such as here and here.  All that matters is that you pick out a pair for a fellow ALIers and send them to them.  

In addition, for anyone who is dying for these socks and wants motivation to knit them (or crochet, I don't discriminate), please find me on Ravelry (search for Phytoknitter). I'm also making this a knit-along. Doesn't matter if you are experienced or have decided to pick up the needles for the very first time. Will make it happen.

Here are the rules:
1) Leave a comment below to let me know if your interested. This exchange is open to anyone who has been touched by infertiliy/miscarriage/infant loss, be it you're currently in treatment, preparing for treatment, recently diagnosed, pregnant after IF/loss, parenting after adoption/IF/loss, pursing adoption, or are living your life to the fullest after infertility/loss. 

2) Once you've received your recipient's names, please contact them within 24 hrs. Recipients, please response within 24 hrs too. This is incredibly important so that everyone has all the necessary information. For those who will be difficult to contact, please leave an additional comment with your contact information. I will not publish it, but it will help with making the connections.

3) Socks do NOT need to be handmade. Again, when I originally started doing this, I did it because I'm a crazy knitter who in addition to wanting to give something that was handmade also uses knitting as a form of therapy. Please do not feel that you need to learn to knit, crotchet or sew in order to participate. And there are some amazing sock stores out there.

4) If you can no longer participate in the exchange, please contact me immediately. Yes, life happens and unseen circumstances can require you to focus your energy elsewhere. (Trust me, I get it.) But please don't leave your recipient hanging. I'm more than happy to reassign, as long as I'm aware that you can no longer participate.

Deadline for participation is Monday January 7th. I'll post a reminder as the deadline comes closer.


 
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