On being the parent of a special needs child

I can't tell you how many times I've been welcomed to "Holland".

The poem is about the shock, pain, and mourning that one goes through being the parent of a special needs child. It ends with the statement that if you spend your life mourning what you no longer have (a typical, healthy child), you'll never be free to enjoy the child you DO have.

For me, the mourning comes and goes. Some people try to point out that there are others out there in much worse situations than what my family goes through. I am always aware of this fact. But it does not ease or negate my own pain.

Some other parents of special needs children are so GRATEFUL for all the little achievements of their child. We learn to never take the little things for granted. We know how HARD we and our children work to achieve the things that come so easily to others.

But my joy over Wee One's achievements is often mixed with heartache. I wish the little things and milestones weren't such a struggle. And I don't understand why I can't be more like the moms who are just completely joyous when they bear witness to such things.

Some of them were told their child would be a vegetable (!), or wouldn't even survive. They are thrilled to prove the doctors wrong, and every little thing seems like a miracle. I don't know why I can't share the same untainted awe.

I am grateful that the doctors never had such grim prognoses for the Wee One. They were very upfront and honest - they didn't know what the future held for her, every case is different. She was a very sick baby.

But at the same time, maybe the hope that Wee One might come through all of this unscathed is what taints the joy I should feel with each of her achievements. When it IS such a struggle to reach milestones, I am reminded that we are not "typical".

Many other parents also have a sense of faith that I do not. I often think faith would be a handy thing to help get me through this. But it's difficult to reconcile my upset at the unfairness of it all with any sense of faith.

I do, however, take time to enjoy some aspects of Wee One's delays. I get to enjoy her stages for longer periods of time. She is still my baby in many ways, even though she's quickly approaching 2 years of age. Parents of typically developing children often tell me that as soon as they get used to the current stage their child is in, the child moves on to the next one. They're always playing catch-up. The slower pace of Wee One's development lets me relax in ways they can't.

Still, I struggle with the constant balancing act of joy and heartache. I will probably always long for things to be easier for Wee One. But I am starting to let go of the life I hoped we would have. It makes the pain sting a little less when we notice more issues or delays. Sometimes not having an idea of where you're headed is less stressful than having a roadmap, and realizing you're off course.

Relief and Joy!

Fantastic Industy People called me!

They'd LOVE to have me!

I am OVER THE MOON!

I knew it was a good fit for me. It's incredibly heartening to know the feeling was mutual!

I feel some perma-smile coming on!

Still here

I've missed writing posts for this space. I've been so busy and worried to write about things, but I think it's time to give you all an update.

I've mostly been busy with two things:

1. Job hunting

2. Wee One

Wee One is doing really great! She still has plenty of medical issues, and I'm still struggling to keep the heartache that goes with it in check, but really, considering everything she's gone through/is going through - she's absolutely phenomenal!

Job hunting has been a massive undertaking. I swear it feels like I'm working at least three full-time jobs! I often have to remind myself that once I finally land a more permanent position, I won't have this enormous work-load. Because otherwise, I feel like I'm about to crack. Seriously, I cannot maintain this pace. I find myself frequently feeling on the verge of a massive burn-out - but taking days off doesn't alleviate the problems. My anxiety doesn't go away.

BUT, I am hopeful! I've made some great strides in figuring out what I want to do, and where. I've submitted applications for jobs, and had a few interviews!

My interview with "Fantastic Industry People" was, well, fantastic! I'd be incredibly happy to receive an offer from them. In fact I'm REALLY hoping they'll give me one. I'll be a little crushed otherwise. I'll survive, but I just feel so exhausted from all of this, I'd really like for it to pay off now that I've found (and interviewed at) a place that seems like such a great fit.

Fantastic Industry is much farther away from "home" - and I felt pretty torn about that for a while. I interviewed at a pseudo-industry/research institute that was located in hometown. Friends and family back home were all really hoping this would be the one. Even I thought it would be pretty ideal if it were to work out that way. But sadly, it was not a good fit. And actually, I'm not that sad about it. I was actually a little happy. I was happy that I was able to recognize almost right away that it wasn't going to be a good place for me to work, and then happy that I wouldn't have had to make the choice of deciding between "home" and Fantastic Industry Place.

Of course, I've got no offers from anywhere yet. I'm expecting to hear news soon from Fantastic Industry Place. I REALLY hope it's good news.

In the meantime, I half-heartedly continue the job search, try to keep up with my own work, and try to be the best mama i can to Wee One. And I try not to break down when I feel like it's all about to fall apart.

Changes

There are changes on the horizon for the Daybyday household.

I don't feel broken anymore. I'm functional again, but a clunkier patchwork version of my previous self. I still have my moments of heartache and incapacitating meltdown. I still desperately need a true vacation from work. But I seem to have refueled enough to keep going. Miraculously.

Perhaps I feel rejuvenated because I can see the light at the end of this postdoc tunnel. I have such conflicting feelings about my time as a postdoc. I really haven't had a bad experience or advisor. But it hasn't been all that great either, at least not in an academic sense. I've met some truly wonderful people here, and maybe I really did need this experience to help me figure out what I want to do with my career.

But I still can't shake the feeling that I am learning this lesson the hard way. The lesson being that it's okay to leave academia.

It's actually kind of liberating to sit here and realize that the decision I have agonized over for the last few years, has now been made. I don't actually have another job lined up yet, but I have applications in the pipeline for several that I am really excited about, and none of them are in academia. I always thought I'd have to decide to leave academia, and THEN figure out what I want to do. But instead, I held onto my security blanket (you know, the one that made me feel like crap, like I'm always behind, and that was no longer fulfilling me? that one), and discovered other career opportunities that really appealed to me.

First I was taken by the prospect of guiding science "from above" (government science administration). The application for that position was a little overwhelming at first. I didn't think I was anywhere near qualified. But with some help from a fantastic friend, I started digging into my CV and past experiences, and as I began to flush out the application package, I was amazed to find that I really DO have some pretty awesome skills and experience!

This had a sort of snowball effect. I started feeling much better about myself, about my career prospects, and about life in general.

I've since discovered a position in industry that seems too good to be true. In fact, it has become my top choice. I never, ever, EVER, thought I'd consider industry. And I might not have, if it hadn't been for the journey of self discovery as a result of the government science administration career application process.

I know part of it is personal, not just about my scientific interests. In all honesty, I've had a pretty good run. Academia has been good to me (you know, aside from the not feeling good enough part). I've been fortunate enough to pursue my own interests. But that just doesn't cut it for me anymore.

My bottom line has changed. Wee One has some new medical issues (heartbreaking stuff that I don't want to get into in this post, but she still seems happy, so I take comfort in that), but even with just what she has been through already, I need my work to be more meaningful in order to justify time away from her.

This company that's got me all twitterpated seems to really make a difference. And I know the difference that Wee One's medications have made for her. Although I might not get to directly help Wee One with my work, the idea that I could still be helping someone else's child (we're all someone's child) is incredibly appealing.

However, the company is located even farther away from my family and friends back home. And when we found out the news about Wee One's newest medical issue, it was so hard not having them around for support. There is another company doing somewhat similar work, located very close to hometown. And it's an option I've been seriously considering.

But husband and I are both drawn to far away city as well. We like the idea of not having to deal with winter for a few years (or more, if we decided to stay there). And there is a great children's hospital there. It just seems so wonderful - if it weren't so far away.

But I think that's where we are headed. And I'm more excited than I am sad. That's a good sign, I think.

I've been in touch with some people at the company there, and things are progressing nicely. It makes me a little antsy about still being here in postdocville. It feels a little like finishing grad school did. I want to get this done already. But there isn't the stress of a defense, nor the satisfaction of that shiny new title.

It's hard to keep forging ahead on a project that is beginning to feel like a dead end, when I see so much excitement on the horizon. Sometimes change is good.

Absent

I've had a hard time bringing myself to post here (as evidenced by my lack of posts for about 4 months!). Part of it is realizing that I'm not nearly as anonymous as I had hoped to be, given everything I've talked about in this space. And part is just that I've been struggling to maintain productivity at work, and blogging takes time and mental energy that I guess I've just been short on.

Wee One is doing fantastic - I mean, considering her long list of medical conditions. She had the most fantastic first birthday party (can you believe it's been a year already?), and I often reflect on how just a year ago so much was different. We barely had her home, after a month of intensity in the NICU. We've had a few hospitalizations and surgeries since, a number of scares here and there... so much has changed - and yet, some things are still the same.

I thought I would feel normal again by now. But I think instead that I am broken.

Maybe there is still hope for repair, but I really don't think I'm ever going to be as functional as I was before.

I need to say that I never, ever have feelings of resentment towards Wee One - quite the opposite, actually. I adore her, and my fears about her health and development tend to be what consume me. So when I say that I feel broken, I don't intend for it to sound like Wee One is to blame in any way, except that I care about her so very much.

That being said, I feel completely inadequate at work most days. I can barely sit through 5 minutes of a seminar before I realize that instead of paying attention to the speaker, I'm fretting over the latest test results for Wee One, and the thought of another potential surgery. I am struggling to move my current research project forward, and can no longer fathom balancing multiple projects simultaneously. And I'm finding that I really don't give a crap about what I'm researching anymore. I seem to have lost my passion (if it ever really was there to begin with, I can't even remember anymore).

I just want to stop feeling like this.

I wonder if I just have to figure out a way to adapt to my new state of broken-ness. If my constant distractability, and poorer research performance can't really be overcome because of the chronic state of stress and worry in my personal life, then maybe I just need to accept that, and make appropriate changes in my career goals.

I feel like I'm burning out. But without the excess of productivity that usually precedes a burn out. I know it's because I've been busy in a different arena. I just feel like I'm expected to catch up from everything that's happened in the past year. But I haven't even fully healed yet (mentally, and somewhat physically), because it's ongoing.

Sigh.