Saturday, January 4, 2014

Keeping the Dementors at Bay

Where did the end of 2013 find you?

Or, let's start this way.  Have you ever had one of those moments where you're almost able to step outside of yourself and take a good, long look at the human being that you are?  Or a short, but still very alarming, look?

That moment came for me at the end of 2013, as I found myself crying on the way out of a Walmart Supercenter in Mineral Wells, Texas.

Backstory: I had meticulously planned a NYE trip for Koby and myself that was going to be stunning, stellar, scrumptious, except for the host of signs that we should cancel the excursion ... and then, to top it all, forty five minutes after leaving the house, I remembered that I forgot my dress.  The dress.

Further Backstory: Never considering myself exceptionally 'materialistic' or 'vain', I  have always figured I might be exempt from these annoying bad habits as I am so conveniently without 'style' and the womanly ability to use makeup or style my hair well.

Cut to: the moment when I am crying in the third store my poor husband and I (well, just I) have raided in a blind and very real panic; I am LITERALLY WEEPING WET TEARS FROM MY EYES because all the dresses my hands have touched are apparently 'too ugly' to put on my body.  I experience a very real longing for the designer dress, worn only twice because it isn't church-appropriate and where else do I go?, hanging in my closet.

I told myself I wasn't a snob, not really.  I tried to explain to Koby the urgency a mother of two feels about looking hot JUST *ONE* NIGHT A YEAR, for crying out loud.  I tried to tell myself I was just anxious about spending more money on something I didn't really need or love, and thus I was ACTUALLY being financially responsible...

And then I awarded myself Miss First-World-Problems of the Universe, laughed at how ridiculous I was being, found a perfectly acceptable dress, and went on to have a stunning, stellar, scrumptious evening with the Best Husband of the Universe, who still can't tell the difference between the grey dress I left at home and the black one I wore to dinner.

As a collective unit, 2013 was like a bottle of wine; it most certainly improved with age.  Early 2013 was extremely bitter and hard for our family; Knox and Hayes were sick A LOT, I was anxious because I thought something might be wrong with Hayes, then Koby was anxious because I told him that, then our world was rocked when Hayes was diagnosed with ONH, and then he was sick some more and we postponed an important MRI, then I wasn't sure if I'd have a job the following school year...

And then I did, and it was better.

And then we moved and it was great.

And then Hayes started ECI with his wonderful therapists.  And then he had a successful eye surgery.  And that was awesome.  Koby and I celebrated three married years and Knox turned two.  Boom, boom, pow.

Finally, Knox stopped being sick all the time (knock on wood), and that may have been a miracle.

And then Koby had a great football season, Hayes turned one, and Koby grew a great beard.  And we topped the year off with lots of time with family and a fabulous New Year's Eve. (Thanks again to Lovie and Popi for babysitting!)

Personally, 2013 has been an interesting combination of self-doubt, insecurity, and confidence.  As I grow into the role of 'mother to a child with special needs' (Koby HATES it when I say that), I experience the gamut of emotions to be expected with its unique responsibility.  For any mother to a child with congenital birth defects, the guilt and fear can strike at any time, even after months without it: for me, it's usually when Koby is gone.  I find myself frantically wondering again - did I do something wrong?  I am a slave to Google - was it the off-brand prenatal vitamins that I took?  Was it the glass of wine I had four days before I found out I was pregnant?  Was it the doctor-approved exercise?  WHAT WAS IT???

This year, worry has been my dementor*.  Worry sucked the meat off my bones and the joy out of more than a few days this year.  Worry led me to guilt like that; and I also found myself worrying, for almost the first time in my life, what others thought about me. (In fact, I had a whole post about insecurity that I fittingly never posted because I worried about how insecure I might sound after posting it... wrap your head around THAT.) I worried about doctor visits, I worried about doing well at my job, I worried about giving Knox enough attention at the side of a brother with special needs, visitors, and doctors; I worried that, for the first time in my life, the things I really, really, really wanted for Christmas couldn't be wrapped and put under the tree, and for once, I didn't know if I'd ever get them. I worried about challenging and engaging Hayes enough, I worried about being a good mom and a good person.

But the pendulum would swing, and I would find my patroni*.  My faith would restore and arm me.  I felt reassured in knowing I will never been given more than what I can bear, and indeed, I have been given wonderful people and resources to give both of my children happy, healthy lives.  My husband would encourage me to love myself and thus, to love those around me better.  My children are beautiful spots of bright light.  Strength in numbers came in the strangest of places - Facebook (yeah, I know) groups where I connected with parents of other children with ONH and hypotonia gave me (and still give me) incredible comfort and encouragement.  And finally, my family, specifically Koby's and my parents, gave us tremendous support during the past year.  Without their support, both emotionally and financially, the first six months of 2013 would have been very, very bleak .

And so we end on a positive note.  I don't suppose I have a New Year's Resolution (except to be less didactic in all my posts, heh) but to keep the dementors, new and old, at bay in 2014.  To surround myself with the people in the paragraph above.  To remember to be intentional, proactive, and good in what I do and say.


It occurs to me that all of that may not read as 'happy' as I mean it to sound, so I think we'll end on every one else's year recaps, in my own words, since they are all unable in their own ways to contribute at this moment.

Koby, who is currently hunting with all the men in his family on a ranch 195 miles away, had another great year in sports - his Varsity football team, on which he coaches the running backs, won district and lost a heart breaker in the first round of playoffs.  Especially fun and exciting for him was the fact that one of his athletes rushed for 1,713 yards this season and scored 21 (!) touchdowns, receiving honors such as the Times Record News' Red River 22 Small School MVP.  He shot two good bucks and a doe during this deer season and was able to squeeze in a good duck hunt, too.  He's still doing European mounts for other people, which is a type of taxidermy-ish thing.  He inspires me as a teacher/coach, because even though we have different teaching styles, I can tell that his students and athletes appreciate, respect, and respond to him.  His kids are always inviting him to go hunting with their families on their places.  He inspires me as a human because he gives selflessly and works hard.  Koby has set a New Year's Resolution to achieve six-pack abs ASAP, so I'll keep you posted on how that transpires.  As we were watching ESPN on New Year's Day, the telecasters were assigning resolutions they deemed appropriate to various NFL entities.  I would like to play that game and assign Koby the following resolution: Become the small-time celebrity chef MAKING the cooking videos on YouTube, instead of just watching them alllllll the friggin' time.  He could totally do it.

Knox, who is currently trying to push a large toy truck under an ottoman (it won't fit, because, physics), has had an incredible year of growth.  2013 began with the flu and a very limited vocabulary and ended with me begging him to please stop talking in order to take a nap, to which he replied "I don't want to stop talking, I want to talk!"  Right now he is enamored of the words 'never' and 'gorgeous', but he hasn't got a handle on when/how to use them yet.  Yesterday I walked in when I heard him stirring from his nap to find him sitting in bed, saying to himself, 'I never? I never. I never.... I never?'  Koby and I are still admittedly obsessed with just about everything he does and says.  Knox is officially, though unadmittedly at this point, obsessed with Pixar's CARS and evvvvvvverything about it.  We are trying to wean him off of iPad time, because right now his favorite thing is to

  1. Find YouTube 
  2. Find movies about the Cars movie 
  3. Watch anything having to do with the Cars movies, including but not limited to 20 minute videos of hands taking Cars toys out of packages, assembling them, and playing with them, and equally long videos of hands c o lo r i n g Cars coloring pages.  

Disney, we have a problem.  Because he has little Cars toys of the various characters, he is beginning to realize that, in efforts to make money, other companies may have also made toys for each of the movies he likes to watch on Netflix.  Last night, as we wrapped up The Many Adventures of Winnie the Pooh for the nth time, he cried -as though it had occurred to him at that very moment, which it had- "I want my Tigger toy!"  We just so happen to have a toddler-size Tigger toy in his bedroom.  Then, "I want my Pliglet [sic] toy!"  We just so happen to have a 'Pliglet' in our second living room.  Then, "I want my Pooh toy!" We do not so happen to have a Pooh toy.  I informed Knox of this discrepancy.  He squinted his eyes at me (am I really this dense?) and encouraged me to "look again" in his bedroom.  Hashtag spoiled.

My resolution for Knox, though I am obsessed with everything he says and does, is to go pee and poop on the potty in 2014, so I can become obsessed with that.

Hayes, who is currently half-heartedly napping on the world's most comfortable blanket (hashta jealous), also had an incredible year of growth.  2013 began with RSV and him essentially not having met any of his milestones, and ended with a mucous-y cold and him rolling over both ways, tracking objects visually sometimes, bearing weight in his legs sometimes, having great head control, and sitting with assistance.  Hayes reminds us to celebrate him on his own time.  For example, a few days ago he held a rice snack thing in his hand and chewed on it.  At the same time.  We exclaimed and took pictures like he'd just signed a contract to play quarterback for the Dallas Cowboys (I heard they needed one anyway) because in our house, Hayes doing that is a BIG. DEAL.  I think his timeline makes us better versions of ourselves as parents and teachers.  He's seen a physical therapist weekly since May of 2013, a speech therapist monthly since ... I can't remember when, a vison therapist, and an ECI case manager and a DBS coordinator too.  He still loves 'rough play' the best ... which sounds weird but essentially just means he likes it when we tickle him or make him 'bop' himself with this hands or clap his hands together.  Right now our focus is to build his trunk strength so he can sit up by himself and encourage him to reach for objects/people/food.  He does well holding his bottle about 80% of the time, which is a huge improvement from about 0% of the time less than four months ago.  On Monday (today is Saturday) we go back to his ophthalmologist to see if, with the vision that he does have, he may be near or far-sighted, in which case he might need glasses.  (Hopefully) soon we'll get his hearing evaluated.  He's grown four big teeth in the past few months and has not enjoyed that tremendously.  Our DBS coordinator is working on getting a SPIO vest to help him work on that trunk stability and so my resolution for Hayes is to keep working hard, to sit all by himself, and reach for things in 2014.

Thanks for listening, for the encouragement and faith you all give me!  HAPPY NEW YEAR.  Let's make this one good.

* Uh, to understand this post you need to have a working knowledge of some Harry Potter vocabulary words.  I didn't want to post this at the beginning and deter some of you Harr-o-phobes from reading.  A dementor is a soul-less creature who survives by feeding off the joy and happiness of others.  A patronus (pl. patroni) is a charm that repels dementors and is created by thinking of the happiest/most hopeful moments of one's life.