Thursday, January 15, 2009


I've been thinking about this word quite a bit lately. It shows up in every area of my life. Raising Playette, marriage, work, socializing, spirituality, taking care of myself seems that I'm always trying to achieve some sort of balance.

Right now though, I'm thinking about balance as it relates to Playette. I wonder, as I learn who reads this blog, if I convey appropriately what our life is like. I feel responsible for showing an accurate picture. Playette doesn't always smile like she does in the photos. We're not always going places and doing exciting things. We're not always bogged down with medical issues. I guess I don't want anyone to come away feeling like our lives are any simpler or more complicated than they are. I feel I owe it to all the families who don't have a blog because one day one of you may come across one of them and...gah, it's hard to explain.

Ok, lemme see, so we have appointments we go to, right? But some of them are by choice and others of them are just exactly the same as what any typically developing child would have. I found when I didn't tell people all the things we do throughout the days, then they couldn't understand fully why I wasn't as consistent with email or phone calls. Sometimes with full disclosure I wonder if I'm confirming people's fears about Ds. That it's all-consuming and physically taxing and expensive and only really special people can handle it.

Ha! Not hardly. If you're thinking that, lemme tell you, speaking for myself...NO.

If no one ever told you or ever says it again...NO.

I am not special. I am not super-human.

I am a parent. I do the same as I would like to think any of you would do for your child.

If your typically developing child broke their arm, you wouldn't want to be seen as a martyr for taking them to the doctor and getting a cast put on. Because that's what was needed, y'know? You do what you need to do when you need to do it.

And if you felt that same child could benefit from a reading tutor, you would do it, right?

Sure you would.

And what if that very same child wanted to take swim lessons? If you could manage it logistically and financially, there's a good chance you would do it, right?

All things considered, you would probably try.

These things would all help your child physically, intellectually, socially, etc.

It's the same that we do, really.

If Playette needs an appointment to see a specialist, we go. If insurance will cover something that sounds beneficial, like Aqua Therapy, you can bet we're doing it.

It's not about filling up an 18-month-old's schedule, really. We don't have to do that. As a matter of fact, sometimes I think we could do without some of it, but then where do you cut? At home in the evenings and on weekends, we practice things we learn in PT and ST, which is hugely beneficial. We read books that were recommended in the PAT Program, which we enjoy. Trust me, I would cut the services provided by the school district if I thought it wouldn't hurt my child in the long run. It's not that she can't do without what they provide, it's just that denying services opens up a whole can of worms that would most likely take more time to deal with than just sucking it up and letting the OT and PT come to daycare.

And the medical appointments.

Well, we're very fortunate in that Playette is quite healthy. But about every 6 months, stuff comes up. Usually all at once. Which can feel overwhelming at the time, but it's totally do-able. Sometimes I just get irritated that other kids don't have to go to the Audiologist every 6 months. Or get their blood taken every 3 months for the Endocrinologist. Or see the ENT to so that he can check and see how her tonsils and adenoids look. All of that is what I like to call "preventive maintenance." If you have a kid with Ds, there's a list of stuff that needs to be done, regardless of anything.

Since I didn't share a lot about Playette's first year and this blog began at the "more than one" point, I'm realizing that there are some things that maybe people don't know. When I was asked recently about her health, this was my response:

In the beginning, we were so unsure about a lot of things. One of them being her heart. We had many trips to the Cardiologist, just to be proactive, but nothing ever came of it. Since moving here, we've been told that she didn't need to be seen for 2-3 years. I really liked the doctor (imagine that, for once) so I'll make sure we go again before we leave here in the fall of 2010.

When I was pregnant, the one thing we knew before she was born was that "something" was going on with her heart. On my first u/s they could see an echogenic focus, but on the level 2, there was nothing. We were just told to make sure we got an Echo done at birth, but that more than likely it was nothing. We've since learned that whatever was going on apparently healed itself in utero. [BD] can explain it much better than I can though. He took over the heart stuff because he understood the lingo better than I did (pressure drops? I totally failed Fluids in college.)

We have respiratory issues from time to time (coughing), but nothing ever serious. She takes meds via a nebulizer as needed. I think she's had one ear infection.

All that to say, I want to try hard here neither to perpetuate any stereotypes, nor present an unrealistically fantastical existence. It's not an easy thing to do, but I hope you'll bear with me. We have a good life and I hope that any readers, when given the opportunity to relate to any individual with special needs or their family, take something positive with them, that maybe they've learned here or elsewhere, into that experience, knowing that we're all unique and we all have our own struggles and joys - just like anyone.

In this house, ours just happen to sometimes be related to something called Trisomy 21.


Lisa said...

That was a wonderful post Chrystal. I totally get it, but I have a kid with Ds. Hopefully the people who read this who DON'T have a kid with Ds, or who are new to the journey, get it too.

Melissa @ Banana Migraine said...

What a beautiful post!!

ks_kristi said...

Excellent post but I had a sinking suspicion all along that your just a great Mom:)

Jessica said...

Great post :)

Four Wonders Mommy said...

Very well said!!! And I mean VERY well said! I enjoyed this post. It is something that I think about a lot. Life is life with or without DS.

Tricia said...

I am so glad I have some time tonight to read. I have truly been missing out.