Enough of the Hero Talk & Working Parents of Special Needs Kids

Ellie's left foot and her flexing her toes!

On July 22nd Dave took Ellie to get her groovy green casts off. And they did come off revealing no skin issues and beautifully elongated and more functional feet. The other amazing thing we are noticing this week is that Ellie is moving her toes more and differently than she was able to before. We went from worrying about feeling being lost in her feet to seeing she has more feeling and more function than before the surgery - which is unexpected and incredible and I am truly grateful for this happy surprise. You can use her flexing her whole foot here which she was not able to do before.

Then after letting her feet dry out and checking her many sutures they put casts right back on. She now has electric pink casts and still has to use the wedge and is on hip precautions until August 10. Ughhhh. Hip precautions means that we can't use her ceiling lift to transport her because the sling it uses makes her bend more than a 90 degree angle at the hip. She is a two person lift. What this means is that Dave or I have to be here to help the nurse or PCA we have on helping us. Did I mention we both work full time?

There is family medical leave act but neither of us have applied for that. There is a stigma in the working world that gets put on you if you have a child with special needs - at least in my experience. In my own job I was overlooked for a promotion because, and I quote, "We didn't think you would want the position because of your daughter."  I applied anyway and got the job. But it was a bummer not to be asked by the leadership team to apply when everyone else around me who knew of my work was saying, why don't they just offer the spot to you?  Well they didn't because I will always be that woman with the daughter with special needs.

So it goes.

New AFO mold at neutral. 

And I realize I am writing this juxtaposed to just sharing that we do have this issues with lifting her. Which means I will need to work from home when Dave is out of town. He can work from home because his employer allows that for everyone.  What this looks like is every two to three hours the nurse will say, "Hey can you come help me do a lift?"  He or I say, "Sure." Get up from our desk, walk down stairs to Ellie's room, help the nurse transport her into her bed from her chair, then go back up stairs. The whole process takes less than 2 minutes which is less time then it takes to get a cup of coffee or use the restroom. In fact, getting up from one's desk every hour to stretch your legs takes more time. The work effectiveness impact is minimal. There are many studies that show that working parents who have flexibility at work to say work from home, work harder and are more loyal to their employer than other employees.

My question is: How is this scenario different from a parent of a typical kid who is home sick?  Or a professional who has to leave work early to take care of an elderly parent? Or the worker who goes on 15 minute coffee or smoke breaks?  (Other than the fact that our helping to lift Ellie takes far less time than a coffee break.) We all have times when our work is impinged upon by family matters. Why is this so different? After August 10th this two person lift issue will go away.

The other thing I have been hearing a lot is that, "You are a hero!" People inquire as to how Ellie is doing and I tell them then they say it, "Well, you're a hero."

I feel bad every time people say that and they are saying it a lot.  It makes me feel uncomfortable. It makes me cringe. It is so isolating. It screams  - you are so different from me.  Your situation is so beyond everything that I will put you in this unique category over here where I can keep you at arms length. And it also says, your situation is so horrible you'd have to be a hero to deal with it.

Ellie's right foot, the most impacted by her CP.

I realize it's not meant to say any of that. The people saying it truly care and are concerned for us.  But all that the sentiment implies is wrong. My standard response back is, "You would do the same thing  - you really would if it were your child." And really, wouldn't you?  If you love a person you take care of them. It's that simple. No heroics needed. You just do what you have to do as best you can.

The other thing these comments imply is that Ellie is hard to love.  This of course is ridiculous. She's such a great kid and a sweetie pie and funny and yes she's having a rough time now but is handling it really, really well considering. I would go out of my mind if I had to sit there with a wedge between my casted legs for months. I, in fact did have braces on my legs like that as a toddler, and remember bashing a big hole in the wall by my crib with the screw that held them on as I swung my legs back and forth out of pure boredom and pent up energy.  Ellie can't swing her legs so she is essentially pinned in one position until someone else helps her move.

I know the hero label is meant as a compliment. And maybe I reject it so much in part as a knee jerk reaction from playground trauma that happens with girls in childhood. You know the one where one girls says, "You look good or you have pretty hair" And if you say, "Ya I do" or even imply that you agree them in the slightest you are ostracized. You learn very early the only correct response is to say, "No way, I don't look good or my hair sucks, it's so frizzy"

I know this is part of the cringe factor I feel when other women tell me I'm a hero and it's not because I think I am, it's because of the issue with labels and who is good and who isn't BS.  However, it's the arms length, let's set you apart thing, that bugs me more as well as the idea that taking care of your own kid through an injury (in our case TBI) is a heroic act in a world where many people are dealing with much harder things.

I think we should just leave the hero talk out of it. If I pull someone from a burning building or discover the cure for cancer or find the answer to world peace or a way to heal injured neurons - then talk to me about being a hero. And then I may say, "That's right!"

But parenting my own child, isn't that a given? In fact if I don't do that well then aren't I negligent or even criminal?  Dave and I are hard working to be sure but so are all good parents. If you are doing it right then you are working hard. The hero wall has to come down though. There are more similarities than differences after all between the typical world and the special needs world if we are only brave enough to look for them.

Sleep Deprivation and Resilience

This chair if really helping thanks to Liz!

 Ellie continues to improve every day. The casts on both feet, knee immobilizers and wedge remain until July 22nd at which point we hope the casts will come off but not sure about the rest. I think Ellie thought that once she got home the knee immobilizers and wedge would come off. She's made it clear she hates them as they really, really restrict her movement  - which is the point. She is coping with that and the pain really well. Liz brought over this Lazy Boy recliner and it has been a wonderful thing to have. It's heavily padded and gets Ellie out of the bed. Though in this picture you can see she has had enough. It's a hard thing and bummer of a way to spend the summer. I have had to be pretty firm about making sure she eats and drinks. She's so out of sorts in every way it's been hard to get back into any sort of routine.  As a result there has been very little rest for any of us. 

Her circadian rhythm is also flipped. She has been up all night and uncomfortable despite the pain meds since she got home on Friday. This is hard for us. In fact one of the hardest ongoing things about raising Ellie has been her inability to sleep through the night. I just ordered this light to help maybe flip her back to a proper rhythm.  Let's hope it works. I had hoped that approaching puberty she would start to sleep more like any good teenager - but not yet.  Still she is only 12.

She's also on some heavy pain meds that are messing with her sleep. We are stretching to dose from every four hours to every six today and it seems to be working. It feels like a long road ahead. My friends in my book club have been dropping by meals each evening for two evenings now. That really helps and is so lovely since we don't have any family who support us in the day to day. 

A note about positioning: Here you can see her on her side. Her body has to stay aligned (straight). She has the casts, wedge, and knee immobilizers on. We are using the cloth chuck underneath her to move her and it helps. Then using pillows and bolsters to help her stay positioned. We switch back and forth to the other side as well as sitting when ever she wants or at least ever two hours.  At night she can't seem to get comfortable regardless. We keep trying. Part of the it to state the obvious is that she just had her bones operated on and bones take a long, long time to heal. So it goes.

Careful positioning keeps Ellie aligned and comfortable.

I keep wondering if I wrap my head around this differently I might feel better about the lack of  sleep and the stress of it all. Maybe if I was just more chill?  One problem is that it's bad right now and a part of my brain goes to the place where it says - it's going to be this way forever.
When I go there I get instantly overwhelmed. And of course, it's not true. The one thing you can always count on -the one constant in life - is change. 

It's a challenge - this management of the self. It's a challenge not to think of how life could be different. 

I have been inspired lately by this guy who exemplifies what a zest for life means.  Watching him jump into life's challenges every day give me energy to "Do more and work harder" as Casey would say. And we do work hard but focusing those efforts on the right things at the right time is the key. Part of that work is keeping focused, positive, and present.