Monday, March 31, 2014

Keepin it real... real frustrating

Since starting this blog, a lot of very nice people have told me things like "you're such good parents!" One reader recently even called us heroes. We really really aren't. Don't get me wrong, I know we're not bad parents.  But, I don't think we've done anything for Nolan that most (loving) parents wouldn't do for their children. It just happens that we've had to do a lot more for our child than most parents. If presented the same situation, most parents would do the same. And while I don't think I'm a bad parent, there are days I'm a better parent than others. Some days I get frustrated. Really frustrated. Sometimes I'm frustrated for days on end. Like lately.

I think my recent frustration is partly stemming from a disappointing surgical outcome. Since we know there isn't anything more we can do to fix Nolan's nose, I've decided to forge ahead with therapies to help him reach his goals in spite of his "bad" nose. Now that surgeries and waiting are over, we can get down to business and focus on things like jaw stability and tongue retraction, two things Nolan really struggles with. I had placed some of these things on hold, to an extent, hoping Nolan would have two open nostrils soon. Two open nostrils would make fixing his other issues a lot easier. But, alas, that's not to be. The professionals still believe he can accomplish what he needs to with one good nostril (it'll just be harder), so we're going to work!

Unfortunately, I believe my determination to work on these areas has led to some disappointment and frustration. It's not going well. At all. I'm frustrated. Nolan's frustrated. Lately, I'm just constantly faced with the problems and things he struggles with and things he can't do. And, I feel a lot of pressure to work on them. I guess I feel like we lost a lot of time trying to fix his nose and waiting to see if surgery (surgeries) would work. And, now I'm noticing how far off the mark he is from where he needs to be.
Raise your hand if you've been really frustrating and frustrated lately!

For example: drooling. Oh, the drooling. It's a big problem and every day it bothers me more and more.  A lot of you readers may not have noticed it because, being as unsightly as it is, I've gotten really good at hiding it in pictures. But I can't hide it in real life. And, I can't hide from myself all the "bad" associated with it. It bugs me. A lot. Nolan drools constantly (it's not teething-related). He just doesn't close his mouth and doesn't know how/can't swallow his saliva safely, so he drools all of it out. Aside from being unsightly, it's also unhygienic, age-inappropriate, and it causes other problems, like with speech formation. The drooling is also a symptom of other issues, like jaw instability, dysphagia (he chokes if he swallows thin liquids), the need to mouth breathe (because his nose isn't patent), etc.

So, what do we do? We go to therapy*. And do exercises. Lots of them. That Nolan doesn't like. Most of the time, he fights them. And, I'm so sick of fighting with him. I don't know how long it's going to take for the exercises to work, I don't know IF they're going to work, and it's just one more thing on my constantly expanding "To Do" list. So, I'm frustrated.

And, that's just one thing I'm frustrated about. There are lots. As any parent of a (young) child with Down syndrome can tell you, there are always lots of things to work on. And there is frustration associated with things Nolan just can't do, that I wish he could. I wish he didn't have sleep apnea and he could sleep other places, so I could go visit my very sick grandma in the hospital. But he can't, so I can't. Days like today, I feel like I'm just not cut out for this special needs parenting thing. The frustrations mount and the disappointments and struggles seem never-ending. There's the pressure. Pressure to work on things that Nolan struggles with. Pressure to appreciate the good in the bad. And, then there's the guilt. The special needs parent guilt. I'm not working on therapy goals enough. I haven't done that exercise in days weeks. Maybe if we'd worked harder on that, he'd be better at it by now. I should be more patient with him.

Days like this, I just want it to be a little easier. Not more "normal" because I don't even know what normal is. Just a little easier. Why does everything have to be so hard? If he could just feed himself... If he could just talk... If he could just drink plain water... If he could just understand this one concept... If he could just swallow his own drool! 

I remind myself that, of course, there are going to be days like this. I've always appreciated the fact that even though it's harder or takes Nolan longer to achieve something, the accomplishment is so much sweeter when he does get there. But, this is the hard part. And sometimes these hard parts last really long. And, I would never change Nolan. I love him for everything that God made him to be. But, that doesn't mean I don't wish things were easier for him sometimes. Easier for us. I know that we will be rewarded, somehow, for every trial we endure. But it doesn't make the trials themselves any easier.

Sorry for the downer of a post, but sometimes I feel being very honest is more important than painting everything a pleasant shade of optimism. Thank you for telling us we're good parents, even though we're really not doing anything special. We're just trying to do what's best for our kid, like most parents. And, some days we feel like we're failing. It's not always easy to raise a child with extra challenges, so sometimes we do get discouraged. Fortunately, bad days don't last forever, but they do make us appreciate the good ones.
These hugs and smiles sure help!

*One of the new things we're trying to help Nolan retract his tongue, increase his jaw stability, and drink better is an Infa Trainer "sippy" cup. It requires good lip closure and tongue retraction. Because it requires those things, Nolan doesn't know how to/can't use it. And, teaching him how isn't going well (he gets really angry when we try to show him/help him). So, we worked on it in therapy this morning (he's always nicer to the therapists). Hopefully he will eventually be able to drink from this cup. That would be huge and mean great things for his oral motor development.

Thanks for reading!

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