Taking the Good with the Bad

That roller coaster known as life in the Steel household continues to speed along. There have been a lot of good moments lately, and some not-so-good moments. Penelope has had a lot of appointments recently, for various assessments and therapies. Throughout these appointments, it has been mentioned several times that she may benefit from a stander. At first, not being familiar with what a stander was, I was thinking, “Ok, sure, let’s get her a stander!” In my mind, standing isn’t as difficult as walking, so a stander should be less complicated than a walker- only logical, right? And then I Googled pediatric stander…

http://www.motionspecialties.com/products-4/products/manual-wheelchairs?page=shop.browse&category_id=33

And I was taken aback. I mean, these devices are crazy-complicated looking! I wasn’t expecting anything like that at all. And ever since, I have had a hard time wrapping my head around her using one of these standers. It’s really difficult to think of her needing something like that. Sometimes I look at her, and she’s so happy and so beautiful, I just think, “How can there be anything wrong with you? You are my baby, and you are perfect.” And then to have to turn around and wonder when or if she will be able to walk- it’s just hard to reconcile those two feelings. I guess I just feel like so much about her prognosis is unknown- how do we know that she won’t figure out how to stand next month? And then we will have purchased this device for essentially no reason. And while a portion of the cost will be covered through government funding and insurance, we will have to pay out of pocket for some of it. Of course, if it helps her and it’s something she needs, the expense doesn’t matter.

I just foresee this stander being a source of stress. I imagine putting her in it, and she hates it, and screams and cries the whole time she’s in it. And then I’m forced to choose between enduring her tortured cries or having this expensive piece of equipment gather dust.

Maybe I’m just being pessimistic. Maybe she will love being able to explore her world from a standing vantage point. Maybe it will really help her and she will get a lot of use out of it and her muscle tone will improve and her bone development will flourish. I think I need to focus more on these positive possibilities. After all, if three different health care professionals have recommended this to us, it’s probably a good idea, right?

Speaking of positivity, Penelope has been making some great strides. Just the other day, she started babbling with consonants- it was so great to hear. I’ve heard babbling that sounds like “dada” and “Charlotte” but no mama yet- unbelievable! And she can now clap- take a look:

 

 

These things may seem little, but they are huge to us. It all circles back to the unknown nature of her condition. We don’t know what to expect, so everything little thing she shows us she can do makes us so happy. And that is wonderful- we celebrate things like clapping, and I can’t recall doing that with Charlotte.

Some days I have a hard time staying positive- yesterday was one of those days. I wasn’t feeling well, and then I just felt overwhelmed with stress after Penelope’s physiotherapy session. Penelope screamed and cried the whole time, and it ended with the physiotherapist recommending she get a stander sooner rather than later, and it just felt like too much. And then I started writing and I talked to Mark when he got home from work and getting these things off my chest really helped. I’m still feeling a bit uneasy about all of this, but at least now I don’t feel like I’m going to collapse under the pressure.

So I’m resolved to taking the good with the bad. It’s not easy; it may never be easy, but it’s doable, especially when I have my writing as an outlet and my friends and my family to listen to my sometimes irrational venting. This roller coaster isn’t going to stop anytime soon, so I may as well enjoy the ride.

Perfection personified

Perfection personified

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4 thoughts on “Taking the Good with the Bad

    • Every parent has to face difficult decisions from time to time, and with Penelope’s situation, it can sometimes be hard to know what is the right thing to do. It is exhausting, but I am so grateful to have the support of family and friends and my readers- it really helps me deal with the stress!

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