In Summer

You know those mom characters who are always on TV like...

"I know from the outside, I look like I have it all together, but I'm really stressed out on the inside, blabbedy bla bla bla..."?

(I know you're confused, but that's not me.  That's Claire Dunphy from ABC's Modern Family.  You may have forgotten what I look like since it's been approximately nine years since I last blogged.  A lot happens in nine years.)

I feel like I might be the opposite of ^^^ that.  Usually, my life and my general demeanor gives off the impression of Hot Disorganized Mess, but I feel relatively calm.  Or also I feel that way inside, too.  Either way, I'm one of those special ones who doesn't have it all together, and it also appears that way.  So what I'm getting at is, where is my show?

Anyway, I'll catch you up.

We wrapped up the end of the school year with me being asked to move up and teach 7th grade English next year and to take over the middle school Gifted and Talented program.  I said yes, which means I'll be moving up with the students I had this year and teach a tested subject for the first time in my career.  Should be interesting.

Koby was super happy to end the year because post-basketball season, he'd been getting the boys ready and taking them to school each morning sans help from Mommy.  Interesting outfits and hairdo's, y'all.  It was a glorious experiment and I have already been informed that we will not be engaging in the experiment next year.  But in all seriousness, I was really happy for the break.  Thanks husband!

Knox was pleasantly surprised to find that he'd be staying home, for like, a week.  After that he began to say really dramatic things such as "I NEVER get to see my friends anymore," and hopeful things: "Are we going to school today?"  He took swim lessons from a friend in Graham a few weeks ago, and I was really happy for him to have that experience.



Hayes is doing really well and has been making great progress in the past few months - he's discovered his feet and is overall more engaged with his surroundings.  It's been exciting to watch and enjoy.  We've kept up with our therapies, which give me motivation to vacuum, as they take place at the house over the summers. (Six occupational therapy sessions, two vision instruction sessions, and one speech therapy session each month.  He's a busy boy.)

We have been traveling (A LOT) and summer schooling and GT training and avoiding cleaning our house at all possible costs.  We've been to LOTS of doctor's appointments, bought a new car, fished, watched Frozen 64 times, house sat for Koby's parents, visited mine, and made the house a bit messier (still not sure how, since it feels like we're never here?).

Coming up: possible family camp for families with blind children in August (we're on the waiting list), a second MRI for Hayes (August 14, prayers appreciated as he will be fully sedated again), more doctor's appointments, Knox's third birthday, two-a-days, coaching camps, coaching school, a weekend in Junction, Texas, Koby's and my fourth anniversary, and a miraculous cleaning of the house.

I've been struggling lately with the natural self-absorption that comes with having young kids.  Getting away from the god of 'Busy'.  I do want to bless others and teach my kids to be looking for opportunities to help in all occasions, but feel like so much of my time (effort, money, etc.) is taken up with grilled cheese sandwiches, laundrylaundrylaundry, commutes to doctor's offices, and general LIFE.  I really wanted to write some amazing post on it, but my friend Sarah beat me to it and said everything I'd been thinking, and is actually putting it into action.  If you feel like you simply can't break the cycle of "US US US" or "ME ME ME", go check it out.  (And I mean it - simply.  She offers really simple ideas.)  No, go check it out anyway.

Prophecies, Progress, and One Identity-Stealing Transformer

I'd love to take you back to this moment, as I wrote this when Hayes was just ten days old:

A second child is a heart-breaking miracle, a treasure mindful of time.  He is precious because his parents have learned the meaning of cherish.

Okay, so maybe the postpartum hormones were a-swirlin' that day; I know it's a tad on the dramatic side. But I've been revisiting that thought over and over again.  It's almost like my own personal memory verse that became something of a self-fulfilling prophecy for Hayes and me.

I would lie if I told you it isn't hard when Koby and I attend Hayes's pediatric check-ups; we sit there and say "No" for about five minutes straight as the nurse keeps asking all the questions she's bound to ask about his development.  "Is he walking?" "Is he crawling?" "Is he pulling up on furniture?" "Is he babbling?" "Does he play hide and seek?" "Will he look for missing objects?" .... Please, please stop, we think.

I would lie if I told you it isn't hard when we see kids Hayes' age running and laughing and talking.  Because it is.  It's not a resentful, pitiful feeling.  But it's a hard one.

BUT.  Our little treasure mindful of time keeps reminding us that HE progresses on his own time, and it transforms the ordinarily mundane into the explosively joyful.

Yesterday, Hayes grabbed my face and looked into my eyes.  He just ran his slobbery, pudgy hand all over my face, looking at me and studying me in a completely new way.  

For any other mother, if her 16 month old did that, it would probably be answered with - Look little man, here are your 10,000 toys.  Could you please pinch and play with them instead of Mommy's cheeks and hair?  I know and say this because that is exactly what I would have felt when Knox was ALWAYS UP IN MY GRILL about a year or so ago.

But when Hayes did it - purposefully reached for and held my face - it made my heart race and flutter.  CHERISHED moment.

Here's a video of Hayes in his Little Room.  The Little Room is an Active Learning therapy tool we've been able to use thanks to our wonderful VI teacher.  He's laying on a Resonance Board; the Little Room is the torture-chamber apparatus that appears to be encasing him.  This was his first time in the Little Room, and not coincidentally, this is the most he'd ever interacted visually-physically with ANYTHING.  (I've since moved some of the objects around - I didn't like how close those spiky dish scrubbers were to his face/eyes, and I let some of the higher-hanging objects down a bit.  It is recommended to establish places for the objects -and then not move them- for memory encouragement.  And obviously, children should be monitored the entire time while they're in the LR.  Don't mind the other, non-monitored child destroying the living room in the background.)  For more information on Little Rooms, Resonance Boards, and Active Learning, check out these links:

This Link
or This Pinterest Board
or This Link


Heartfelt outpouring over - I have to go attend to Knox, who is refusing to believe me that the toy he is holding is. in. fact. a Transformer, and not a Yellow Batman.  

** Update: I later apologized and said, "Okay, you're right.  It is Batman.  How silly of me."  To which Knox replied, "Good job, Mommy."  These guys teach me lessons all the time.**

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.

Dear Knox - An Open Letter

Dear Knox,

It's four days before your second birthday and I wanted to write you a letter.

A letter of thanks, a letter to paint a picture of this time that we might be able to revisit some day in the future, a letter of admission, frustration, and hope.

Thank you for being such a good big brother.  You've been an encouragement and a source of laughter to your Dad and me during hard times - you kept me from nervousness in the waiting room during Hayes' recent surgery and your voluntary acts of love and possessive care towards Hayes continually surprise and please me.  Admittedly, I completely underestimated your capacity for 'big brotherhood' when your life changed at 15 months of age - you won't remember your life before Hayes but nevertheless, I think you've taken on this role naturally and easily.  You have it different than most siblings: you watch while your brother has many visitors who come to play with him and bring him toys because of a condition you can't understand yet, and you don't get too jealous or act out too much, and we appreciate that.

You're a great playmate and I'm excited about the years to come when I'll hear you and Hayes giggling from a closed room- I'm sure it will make my heart race to wonder what chaos and destruction you've both caused within, but I'm looking forward to it.  Right now you're playing in a fort that Dad made for you, narrating his and your every move, and calling it 'MY FORK'.  You're so intelligent and creative it's disarming.  And I'm not just saying that because I'm your mom.  It's true.

But you're also coming upon a hard age, and I'll admit most days there are times (moments, minutes, hours) of frustration.  You're recently overcoming tonsillitis and I don't mind telling you that we called you The Minion for a few days during that episode of illness.  When you were a little baby I can remember holding you and looking at your face and being COMPLETELY unable to imagine us ever disagreeing.  About anything.  Now we disagree on everything.  I give you the wrong color cup 90% of the time.  I am incorrect about your wishes for what should be done in the toilet.  Sometimes I sit on the couch wrong or stand in the kitchen wrong or sing at the wrong times.

If you can't tell (and I hope you can't, but I've got a sneaking suspicion toddlers can sense these things), I have essentially no idea what I'm doing.  I probably should have read the books or something.  On a daily basis it feels like I'm throwing up a Hail Mary in the game of Mommyhood.  Sometimes it works, sometimes it doesn't.  There are days it's like my only playbook is the list of things I said I'd never do.  I'm ashamed to admit that I told you I'd give you money the other day if you'd just sit on the toilet.  You're not even two.  You've eaten at McDonald's about 600 more times than the zero times I'd always haughtily told people we'd ever go... so there's that.  You scream "NO" in public, you are loud in church, you watch more television than I'll readily admit, and there are times I'm sure I'm doing every thing the wrong way.

We'll get through it.  There will be other times when we look back at this letter and wish we were still fighting over the color of your drinking cup or whether or not I will let you run on the wet porch, instead of the flying skateboard I won't let you buy or the friends I think are 'the wrong sort'.  We'll get through that, too.  My greatest hope is that eventually we'll look back and laugh at the fact that we ever argued at all.

Toddlerhood is volatile, an unpredictable time of extremes.  Your vocal chords are at this point capable of the sweetest sounds - there is nothing so treasured as how small and soft your voice can be in the morning when you're telling me you want to visit the park because it's fun, or during your nightly prayers, or the gut-wrenching, heartstring-yanking way you'll call out for Daddy or me in the night... AND YET you can also manipulate those chords to whine and scream and yell like a Green Street Hooligan.  I guess you're just becoming yourself - it's thrilling and slightly terrifying to watch.  How much influence and control do I really have?  How much has been in you since birth and how much have you learned because of your surroundings?  Even now, what am I doing or not doing that could possibly benefit or cripple your future self?  What proverbial baggage am I packing that you'll carry in relationships to come?

Whether or not it's been a day that's seen me sitting on your chest and pinning your arms to your sides to pry antibiotics into your screeching mouth, bribes of Sour Patch kids to go in the toilet, or arguments about whether or not you can watch your 72nd episode of Curious George, I sleep better at night because I think you can feel the love Koby and I have for you.  Sometimes that love comes in the form of discipline, and sometimes it's in the form of just trying over and over again despite lots of failure, but it's there and real and big, so just know that.  When you're two, when you're 15,  when you're 37 and forever.  It will always be there.

Love from
Mom

- Attention-Grabbing Title-

In faithful Andrews family fashion, the past few weeks have been fast, blurry, and life-changing.

Most pressingly and importantly, at Hayes' last appointment with his ophthalmologist we received the good news that because his strabismus (eye-crossing) hasn't changed he is able to have the surgery needed to correct this problem.  He'll go in for the 30 minute outpatient procedure on Wednesday the 10 and we'll be able to take him home that same day barring any uncommon complications.  Prayers very much appreciated.  We're really optimistic about what this surgery can do for his eyesight and hopefully for his muscle tone, gross and fine motor milestones.  I'm trying not to look at it as this miraculous cure-all that will suddenly make him like any other eight month old baby (except, obviously, soooooo much cuter)... but still.  We're really excited.

Hayes also had his first evaluation for the DARS Division for Blind Services today and we are really overwhelmed, humbled and grateful to have found out about so many programs that are able to assist our family as we work to help Hayes.  (Before you start freaking out "WHAT?! Hayes is blind??  you should know that as of right now, Hayes is declared legally blind by his ophthalmologist.  Also, justy because someone is 'legally blind', it doesn't mean they can't see.  Obviously, since we have no way of deciphering his baby-speak right now, we have little way of knowing how much he can actually see.  DARS services kids with low and no vision.  Hayes qualifies now -or at least, we hope he does- both because of his condition and because of what the doctor wrote in his paperwork.)    After speaking with our case manager today, Koby and I are really glad to have this resource - they put on camps that connect families of children with conditions like Hayes' and hold seminars designed to encourage and educate parents on techniques, exercises, technology, and other resources available to help kids with low or no vision.  They work with families to get kids technology, toys, etc. that help them utilize the vision they have.  It's amazing to me how MUCH help is out there, but it saddens me that it's so hard to find out about.  It's almost like you have to stumble upon it.  Or maybe *someone* should write a manual...

Hayes also had an EXCELLENT session with his occupational therapist today (through Early Childhood Intervention - I'm going to go ahead and link all these services in case any one is interested) and she's really looking forward to his surgery and how it may affect his motor development.

Knox is doing really well too, he's talking like a Wall Street account executive (slight exaggeration, and I don't even know if that's a real job) but he is suffering from a little case of tonsillitis.  He's coming up fast on two years old.  I've officially extending the age of 'baby' until three.  So, still my baby.  Who speaks in complete sentences and requests money and keys when he gets in his toy car.

We're in our new house now and are also pleased to announce ....

...oh, just wait for it...











I'm employed!  (You thought for one terrifying second that we were announcing Baby #3, weren't you? Cue hysterical, slightly maniacal laughter.  Cue me punching you in the face.)

That's right.  I passed my English Language Arts and Reading test that qualifies me to teach those subjects to fourth to eighth graders, then interviewed for a sixth grade position at the school where Koby works, and got it.  Hooray for employment!  Hooray for working with my husband!  Hooray for a nice, new house (yet to be unpacked).  And hooray for three years of marriage!  (Our three year anniversary is the same day Hayes goes in for surgery... can you imagine me knowing that as I was saying my vows just three years ago???)

In the past three years, between Koby and I, we have:

lived in four houses
worked at seven very different jobs
had two kids
gone to three different churches
been in four weddings
been to 5,341 doctor appointments (just an estimate)
cried a lot (some of us more than others)
prayed a lot
learned a lot
had a lot of fun

I am ready to turn the page and start a new chapter (for want of a better metaphor).  While I'm thankful for this past year, it has been the most challenging, albeit strengthening, of my life.  We're glad our family moved to new house this summer - even though we weren't looking for it, it even physically feels like a fresh, clean start.  I don't know about Koby, but I feel refreshed and energized, and ready to tackle a new year.  (And I'm sure that it has nothing to do with the fact that Koby and I spent 24 hours away from the kids...)  Our life moves pretty fast and I've got a feeling it's only the beginning of a great story.

Move the Third

I thought I was pretty indoctrinated into the 'country' lifestyle.  I mean, check out the street we live on.

 

Dirt road?  Check.  Animals?  Mmm hmmm.   (Did they live?  Nope.  RIP ducks.)  Nice neighbors?  Yeah.  Roosters waking me up in the morning and donkeys braying in the distance and horses in the next yard?  You got it, partner.

I have loved living in the 'country'.  Who wants to worry about neighbors nagging them if their dogs get out, maybe kill someone's favorite cat, yadda yadda yadda?  I don't want to be judged if I leave the Christmas lights on my back porch year round, do you?  Who wants to live in a world where a man isn't allowed to stand in his front yard with his jeans and suspenders on, and nothing else?  I sure don't. Despite my newly-acquired bumpkin nature, my husband has assured me that I am still 'city', whatever that means. 

And also, whatever. 

I totally disagreed on this point until yesterday as I was scoping out the house we'll be moving into at the end of this month.

Yesterday we were all walking the property, kicking the tires, and Knox was pretty overstimulated with all the free space in the house and the insane echo his voice made when he screamed his very loudest in the empty bedrooms while we discussed money-this and money-that with our new landlords.  I decided to punt him out the back door take him for a walk in the yard and together we investigated the well in the backyard.

Well water was one of the 'selling points' of us deciding to move at all.  We LOVE the house we live in now, including the absolute remote location and our laissez-faire-until-we-need-them-landlords BUT having a well means saving on the green stuff, and big time if you live in our county.  Living in town means less commute IF we're both working in Jacksboro.  (I've got an interview Thursday, say a prayer.)  And living in Jacksboro means we're THAT much closer to the hospital network with which we're now affiliated because of Hayes' condition.  And while the house is 'in' town, it's still on a dirt road and, as a special bonus, it's even MORE private than our house now without being fifteen minutes away from work.  Goodbye curtains, hello lovely, leafy privacy.

But anyway, the well.  We were looking at it.  The well is in a little shed and I decided to have a peep.

I dunno if you've ever seen a 'well' that services residential needs.  But I know I was expecting to see this inside the little white shed I was so avidly investigating.

Plus or minus one dead girl crawling out of the top.  I admit, I was really curious as to how we were going to get the water without using a rope and bucket, but I allowed technological advances to cover that tricky spot.  I'm only sad I'll have nowhere to throw pennies when feeling particularly wishful.

If you still don't know why this is funny, I won't spoil the surprise.  Come to my new house and I'll show you my water well.  But in any case, I remain a City Slicker.  Sorry, y'all.

In other news, HAYES IS SCHEDULED FOR SURGERY! Or he will be really soon (pending date checking and availability, but we're looking at July 10 or 17th).

We visited our ophthalmologist for a check up today, and because Hayes' strabismus (eye-crossing) is stable, he can have the surgery to correct it!  This is AWESOME and urgent for more than cosmetic reasons alone.  Hayes' brain is still adapting to the vision that he has because of his optic nerve hypoplasia, and in cases where strabismus is involved, the brain can actually train itself to turn off the signals it receives from one eye to counteract the double vision effect.  So plainly speaking, the earlier he has this corrective surgery, the better it is for his brain and his vision.  Our vision therapist attended the appointment with us and was so excited to see Hayes watching objects and holding his head upright.  She was also really encouraged by the doctor's opinions about Hayes' eyesight.  Add that to a SPECTACULAR physical therapy session today, during which I got to tell our OT that Hayes can now roll over and prop himself up on his arms while on his tummy, and you've got a pretty amazing day in my world.  Thank you, Jesus.  (I may be a little bit excited.)

Please, look at my awesome kids.

 

 

This is Friday Night

This week has been rough.

Nothing's gone wrong, per se.  Aside from my children conspiring against Koby and me and planning our demise due to lack of sleep, we're fine. 

I've just realized that I'm one knee scrape away from a meltdown.

Knox and Hayes are both well (ish) but I've come to notice that my holding-it-together-ness can be broken apart at the tiniest cough, a sight of phlegm, or indeed, a knee scrape.  Earlier this week I thought Knox MAY have had the beginning of a staph infection (turned out to be a little knot leftover from his antibiotic shot a few weeks ago) and I actually thought I might lose my mind over it.  Seconds before finding the panic-inducing bump I was a normal, functioning female.  Post lump, my heart was beating fast and I was near Biblical mourning status.  Tearing of clothing, sprinkling of ashes, weeping and gnashing of teeth.  The works.  (I recovered in about 15 minutes after remembering the shot.  Awesome.  Didn't feel stupid at all.)

Hayes has been having some party time with his friend Nebulizer again to ward off any lung infections that might cause him to re-reschedule his MRI.  In similar panicky fashion, every time he coughs I see him as a five year old who hasn't been able to have his MRI yet because he can't go six full weeks without getting sick.  (Though he's currently listening to Ride of the Valkyries and kicking like a maniac, so I'd say he's fine.)

So, Hayes update:

MRI : rescheduled for April 19 due to Hayes' recent RSV.
ECI evaluation: April 16. (Explanation to follow.)

Keep prayin', y'all.

And he's five months old.  Hayes is getting stronger every day and is holding his head up more frequently and steadily.  He's still not sitting well but I know he'll keep making progress at his own pace.  The ladies at the daycare where I work love watching him get excited about the toys they put across his crib for him to see - they thing he's making progress too.  He's making better eye contact and his Lovie swears he's a little trickster and I agree!  He still loves to look at lights.  Next week he'll be evaluated by some professionals from the North Texas Rehabilitation Center for Early Childhood Intervention services.  I'm really excited to learn about the exercises, therapy, etc. that we'll be able to get for Hayes. 

But I really struggled with frustration this week because of related issues.  As a teacher who's sat in her fair share of ARD meetings (pardon my teacher-speak), I know firsthand that one would be hard-pressed to find a fiercer love than that of a parent.  Parents will be downright asses about their kids.  All is fair in love and free appropriate public education.  (Teachers, laugh with me.)  But really, I get it.  As a logical human, I know that Hayes Brandon Andrews, Texan, age 5 months, is not a likely priority to any other person not related to him.  I know that.

But I was still frustrated when I felt like I had to repeatedly call to make sure his paperwork was being sped along to its final destination to acquire these services.  These services that will HELP MY BABY BE ABLE TO SEE AND USE HIS MUSCLES, I emphasized in my mind.  I kept fighting this outrageous anger as I imagined someone neglecting his case information.  I realized that I, one who hates to be the 'squeaky wheel', am completely capable of being the 'full-scale tire blowout on the interstate while doing 75 in a 2000 Ford Explorer with Firestone tires' when it comes to my kids.  And I know that this side of crazy is lurking in any mother, in any parent, at any time.  My crazy just seems to be bobbing a bit closer to the surface these days.

Like I said, one knee scrape this side of a meltdown. 

We have another child too, we didn't forget.  His name is Knox and he is something else.  Things he's doing lately that I love or will love to remember (parents, you know what I mean):

• When I kiss him all over his face he giggles and says "Moooooore??".  We do this over and over and over again.  Often.
• When he would like to direct my path, he gets behind me (or anyone so silly as to be sitting when they should be doing his bidding) and pushes on my back with all his strength and says "Pooooooosh" (push)
• He loves to say "No, don't" and "Stop it"
• He calls strawberries 'strawbies' or 'chobbies' and the look of pure joy and ecstatic anticipation on his face as I hold one in front of his eyes is worth digging up the yard and planting a ginormous strawberry patch.
• He sported the very closest hairstyle to a mullet he'll ever have today as (in my temporary insanity to get him to sleep) I gave him a haircut last night before bedtime.  Knox hates the clippers, so it was short-lived, but I think I may have cut down his nighttime sweating to a mere gallon last night from that alteration alone.
• He has been off and on about the switch from crib to bed.  Very quickly he developed the at first cute, but then very annoying habit of standing by his bedroom door on the inside and saying "Knockkkkkk, knockkkk" when he wants out.
• He loves to pray.
• He is moody.  Or maybe just a toddler.

I won't make this a sap fest and keep going but I want to talk about Knox, too.  He's stepping up to the plate the best any (almost) twenty-one month old can.  He takes care of Hayes when he sees a need - often doing so in the most intuitive way, anticipating his brother's needs in advance.  Sometimes so far in advance that he'll shove a pacifier or bottle in Hayes' mouth while he's still sleeping, but whatever.  I love it because he sees his brother when he looks at Hayes, end of story.  He sees his baby, who needs milk and pacifiers and comfort and Knox wants to play with him.  He doesn't know that Hayes is behind on his gross motor skills.  He doesn't know that his brother can't read his facial expressions.  And yet he sees Hayes in his truest form - a baby brother needing to be loved, needing attention, needing care and Knox wants to give him all those things.  And fist bumps.

Here is Knox, with the unfinished haircut I gave him, talking about his unfinished haircut while getting a bath.

Fools in April

April is here.  April is here!  April is here?

As promised (and under multiple threats) I am here with an update!  Hayes had his first appointment today with his endocrinologist and every thing went well.  I say every thing went well - this seemed mostly like a 'meet and greet', but it definitely felt positive.  Since Hayes is already five months old (tomorrow!), it seems that if there were serious problems with hormone deficiencies, they would have manifested themselves by now (i.e. seizures from low blood sugar, underdeveloped parts and poor growth).  The doctor ordered a gamut of hormone blood tests, answered questions I had, and arranged for a follow-up in four weeks, at which point we'll review both the blood work and the MRI results and come up with a game plan based on what we find.  Our 'game plan' means basically, how often we'll need to assess his hormone levels and whether or not we'll need to begin hormone therapy after we know more about Hayes' condition.

Hayes was super brave and strong during the lab work while the tech took 10 ml of blood (2 tsp).  He hardly cried and I am so proud of him!  He is doing much better with his head control and making progress at his own pace.  My parents were here this weekend (Mom was able to come with me to the endo. appt., thanks God for good timing) and kept remarking in amazement what an AWESOME baby he is.  Seriously, the best.

For inquisitive minds, here are some important upcoming dates for Baby Hayes:

April 9 - MRI
April 29 - Endocrinology Appointment to review hormone/MRI results
June 18 - Vision Check-up

Before I go on, Koby and I want to thank every one for their comments, texts, messages, calls, letters (yes!  people still send mail!), and thoughts over the past few weeks.  We are overwhelmed by your support and in addition to being grateful for our two astounding, amazing, spectacular children, we have been blessed with wonderful family and friends.  I have been encouraged and made wiser by the compassion and advice received from so many who read the blog and it is good for my soul.  Thank you.

-Commercial Break-

So, you may be wondering just why it is that I keep this blog.  Obviously, it's a great (and maybe slightly narcissistic?) way to keep in touch with family and friends for those of us who are more verbose than a Tweet will allow.  (And I can't convince my parents that Twitter is cool, so that's out for them anyways.)  It's a therapeutic outlet for me, a place to gather thoughts and organize them.  A lot of people relayed to me that they appreciate my transparency and I HOPE that one day someone who is struggling with the same things as I am will find these posts encouraging.  That's my prayer, anyway, and it's the boost I need when I feel like I just can't bring myself to be honest about my feelings on something that's challenging or difficult or controversial.

But one foundational purpose of this blog is much more selfish and sad than all of that.  Quite simply, I'd probably forget most of what's happening in our lives at this moment if it weren't for this blog.  (Almost) strangers who read this blog have actually reminded me of things I'd forgotten about that happened in my own life, to me because they read this blog.  It's scary, people.  (Not the strangers, how much I forget and how quickly I do so.)  I blame some of it on the immediacy of our culture - we take in so much information during 24 hours it's wondrous to me that we don't all need 12 hours of sleep to compensate each night.

For instance, right now, Knox is playing with his toys behind me and talking to himself about chickens, and cats, and trains, and unless I take a picture of it and post it on this blog I probably won't remember what this is like.  This blog is like my digital baby book for Knox and Hayes.  (I do keep real ones too.)  But it's also a  marriage book.  And a life book.

Here's what I'll forget about from the Blog Famine of 2012-13 if I don't post about it here:

DECEMBER

Melissa graduated from UT Tyler in mid-December with her Master's in Business Administration.  Knox was sick.



Christmas Eve morning in Graham.

About two months post-Christmas Judson proposed to Elizabeth... so Koby and I are getting a brother in law and Knox and Hayes are getting an UNCLE!

Christmas Eve in Throckmorton - Knox was not sick and we discovered just how much he will do for attention.

Hayes' first Christmas.

White Christmas Day in Bryson.

Day after Christmas in Austin.

JANUARY

Melissa and I on New Year's Eve day at her studio apartment in Deep Ellum.  She will kill me for putting this on the blog but isn't she pretty without makeup?

Married friends Clay and Belinda in this picture - Baby Maybelin is here too but not many people knew that yet!

Koby and I ate dinner with Clay and Belinda, then went back to Melissa's apartment and watched movies.  I fell asleep before 11:00 pm.  Happy New Year.

On New Year's Day we flew to Vegas.  I think this is the first night - I'm by the Fountains at the Bellagio.

Our hotel/casino in Vegas where we lost about $25 on the slot machines.  Apparently we know nothing about gambling.

Back in Bryson.  Knox has the flu in this picture, but we don't know it yet. 

Can't you tell?  Also, I don't know why I let him wear that shirt.

Playing hooky from school.  Not really.  Knox had both types of the flu (A and B) and I got it too, so we had to stay home for a few days.

FEBRUARY

I forced this mural activity upon my son to make self-proclaimed world's cutest Valentine cards.

 

Knox ate an Oreo.

MARCH

A week before Spring Break, Knox came down with strep throat and an ear infection.  The Friday before Spring Break we found out Hayes had RSV at his four months checkup (a few hours after this photo was taken). Koby and I both got a 12 hour stomach flu on the Monday of Spring Break.  It was a weird few weeks.

A few weeks after this Knox got sick again. No idea what it was that time.

Over Spring Break (once every one was well) we took the boys to the Abilene Zoo.  First zoo trip!

 

And now we're caught up!

Are your eyes bleeding?  I will try and never let this happen again, for all our sakes. 

Keep praying for Hayes! :-)