Thursday, June 26, 2014

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.

Sunday, April 13, 2014

What IS Optic Nerve Hypoplasia? - Everything I Know Part 2 -

Okay, we're back.  I hope from my last post you were able to come away with a general overview of what optic nerve hypoplasia is.  If you didn't catch that post, or if you've stumbled upon my blog because your child was just diagnosed with optic nerve hypoplasia, I'd recommend beginning here for information, or here for the beginning of our own story with ONH : )

In January I attended a conference put on by the Texas School for the Blind and Visually Impaired (TBSVI) specifically for parents of children with ONH.  At this particular meeting, we were able to hear information from an ophthalmologist who had become something of a specialist regarding ONH.  I loved what she said at the very beginning - ONH is a brain problem.  It's not an eye problem.  That's why vision isn't (always) the only thing affected by ONH.

The optic nerves exist in a part of the brain called the 'midline'.  Because kids with ONH obviously have malformations in this part of the brain, one of the first things that happens (or SHOULD, MUST, MAKE IT HAPPEN) after an ONH diagnosis is a referral to an endocrinologist and an order for an MRI of the brain.

Below are two pictures of different views of the brain and its regions/parts/whatever you call brain stuff.

The first is a side view - the midbrain that is usually checked for additional abnormalities after the diagnosis of ONH includes the corpus callosum, the hypothalamus, and the pituitary gland.  (Image courtesy of a Google search, which yielded this picture in a foreign language.  Good luck with the link.)

This picture (below) shows a view of the brain from above.  You can see how the optic nerves cross just in front of the pituitary gland in the middle of the brain.  (Image courtesy of some lecture notes from a community college.  Knock yourself out.)

Okay, so what does this all mean?  Why are these parts of the brain important?

First and foremost, let's discuss the pituitary gland, aka the reason you'll be referred to an endocrinologist (doctor specializing in glands/hormones).  The pituitary gland is responsible for secreting the hormones that keep the body functioning normally.  Because hormone abnormalities can have drastic consequences (loss of consciousness, mental retardation, even death), it is imperative that a child with an ONH diagnosis be monitored for pituitary function.  And because the hormone levels can fluctuate at any time or stage in life, people with ONH should continue to be monitored with regularity even if everything is functioning normally.  Sources vary, but it is reported that 75-80% of people with ONH have some degree of pituitary dysfunction.

The hormones secreted from the pituitary gland are responsible for the following things:

  • growth, temperature regulation, sex organs, thyroid gland function, metabolism, water balance/regulation in the body (related to kidney function as well), blood pressure, and pain relief 

Your endocrinologist will regularly monitor your child's hormone levels by ordering blood tests and, at each appointment, check to make sure she is growing normally.  This specialist will also review the results of your MRI.

Hayes' hormone tests have come back in the normal range after each screen.  He has always 'thrived', which is to say, grown and eaten normally.  He is tested every six months and will be until he is 2 (or 3, can't remember).  At that point, if he is still maintaining 'regularity' as far as his hormone levels, he will only be checked once a year.  Of course, if there are any changes in behavior or activity, we will contact his endocrinologist to run tests to make sure something hasn't gone awry, because hormone problems can manifest themselves at any time.  (For more information about the pituitary gland, talk to your endocrinologist and click here.)  And, for the record, I love our endocrinologist.  He is hilarious and looks like Dennis Hoffman, and he thinks I look like Brittany Murphy.  I was not as thrilled and am still confused about that.)

This is Hayes and me at his endocrinology appointment on my birthday in 2013.  As you can see, he's chunky thriving, and I look nothing like Ms. Murphy.  No offense to her, and may she rest in peace.)

Let's talk about the MRI.  An MRI is an image done by magnetic resonance imaging.  I have basically no idea how this works.  Okay, I have some idea, but I feel more comfortable explaining why a person with ONH is ordered an MRI than how exactly the MRI is done.  (For much, much more re: the MRI, please talk to your endocrinologist/neurologist/ophthalmologist and click here.)  The MRI for ONH will be focused on the brain, and will be specifically taken for review of the midline.  

We had a few issues as we went to have the MRI done in the spring of 2013.  Hayes was getting over RSV and had recurring colds, which led to us postponing the scan once before we finally got to do it.  I was a nervous wreck.  Because Hayes was only six months old when he had his MRI done, he had to be put under anesthesia in order to ensure his absolute stillness.  He also had to fast (which, at that time, meant no bottles) for a period of time before the MRI was done.  The whole thing took a whole morning - arriving at the hospital at its earliest opening (some tortuous time like 6 or 7 am, and my mom and I drove in from Jacksboro for the appointment), and after he went in around 8 or 9 I didn't see him until after lunch.  I tweeted a lot about it.  Here's a link to a tweet/picture of Hayes in his hospital gown, 10 hours since last bottle and pre-anesthesia.  You can find me on Twitter by my handle @christieandrews .)

What else is the MRI looking at?  We already talked about the pituitary gland.  So next, the corpus callosum.  The corpus callosum is a group of fibers that connect the left and right sides of the brain.  These fibers allow the sides to 'talk' to each other.  Here's something completely mind-baffling about the corpus callosum: it can be completely missing and you might never know.  Some people with absent corpus callosums go on to college: some with partial loss of the same section of the brain have significant cognitive and motor impairments.  When the corpus callosum is thin, malformed, partially or completely missing, it is called agenesis of the corpus callosum.  (For more information about the corpus callosum, talk to your neurologist and visit this site.  A wonderful organization exists called the National Organization for Disorders of the Corpus Callosum, but unfortunately its website is temporarily down.)

Attached to the corpus callosum is the septum pellucidum, which is a thin membrane that runs to another part of the brain.  A condition often associated with ONH, called SOD (Septo-optic Dysplasia) involves diminished optic nerves, pituitary gland dysfunction (hormone problems), and a missing septum pellucidum.  For more information about SOD, talk to your ophthalmologist, endocrinologist, and/or neurologist and click here

I took the call regarding Hayes' MRI results on April 24, 2013.  As I'm writing this, that's only 11 days less than a year ago.  Hayes HAS a corpus callosum, but because he was six months old at the time of his MRI, his brain was six-months-old-tiny, as was his corpus callosum.  It's hard to tell, at that size, if a corpus callosum is malformed.  Hayes has not been diagnosed with SOD, as he doesn't seem to be 'missing' any brain parts and he has yet to have any endocrine issues.  Since his MRI, I've been wondering if his corpus callosum could be linked to some of the motor problems/delays he has, which you'll learn about later.  If your child has been diagnosed with SOD (or ONH), I would highly, highly recommend joining the Facebook group called 'Parents of Children with Optic Nerve Hypoplasia (ONH) / and Septo-Optic Dysplasia (SOD)'.)

Alright.  So.  We know that an ophthalmologist will refer a patient with ONH to an endocrinologist, and hopefully order an MRI (and it's not just to spend money; we understand why.).  Who do we discuss the MRI results with (aside from the endocrinologist... and the ophthalmologist.... and your family doctor/general practitioner/pediatrician...)?  We go to the neurologist.  A neurologist is doctor specializing in disorders of the nervous system, aka the brain.  And, obviously, ONH is a disorder of the brain.  The neurologist will (should) review the MRI results with you in detail.  She should show parents the MRI itself, discuss the findings in each targeted area, and explain what those findings mean.  A neurologist will be the doctor contacted in case of seizure activity, since that can be and is associated with ONH.  If the MRI results are inconclusive for any reason, the neurologist will refer you to other specialists.  (We'll discuss that later.)

I like our neurologist as a human and as a professional.  I really just haven't learned anything from our appointments with him.  He showed us Hayes' MRI results (pretty cool) and is willing to answer my ridiculous please-predict-the-future questions, but because Hayes has some other things going on that aren't explained by his MRI, he's referred us to other doctors.  We check in with our neurologist every six months to discuss any changes in behavior, monitor for signs of seizure activity, and keep track of his development.  The neurologist was the one who FINALLY said 'hypotonia' out loud for me, and is the one who is most concerned about his global developmental delays (which means delays in cognitive, speech, and gross/fine motor skills).

And from this point?  Rinse, lather, repeat.  And adjust as your preferred brand of shampoo is renamed, discontinued, or new and improved.  Because this is the medical community.

So, a recapitulation of post-ONH diagnosis and the 'D-team' assembly. (D is for Doctor, not performance.*  Hopefully.)

ONH diagnois (most likely via the ophthalmologistthen

  • Endocrinologist
    • hormone tests
  • Neurologist
    • MRI
Everything I Know Series
What IS Optic Nerve Hypoplasia - Part 2 (you are here)

  • Medical information / New Terms
  • Personal Andrews information
  • Medical specialists
  • Therapy / Government Programs
  • Really important information
  • and links I think you should visit always look like this

If all this helps just one person, I will feel incredibly accomplished.  It's a lot of typing if it doesn't.  :-)  I'm going to condition you to expect a really cute Hayes picture at the end of each installment, so here:

What?  Stop it, I know.  Hayes and Koby catching a snooze after a long weekend.  Hayes is smiling in his sleep.
* Remember, you can fire anybody who isn't up to snuff.  You can always question, challenge, and ask for clarification.  Above all, if you aren't satisfied, you can find another doctor (therapist/case manager/etc.)

Tuesday, April 8, 2014

What IS Optic Nerve Hypoplasia? - Everything I Know Part 1 -

It's come to my attention that everyone who reads the blog knows something's up with Hayes.  A little over half know that he has a neurological condition (a congenital birth defect) called optic nerve hypoplasia (ONH).  Less know, however, what that really means and entails.  And a few know there's some other stuff going on too; things that no one can really describe well or explain.

I think that sometimes even really, really close loved ones can feel uncomfortable when asking parents whose children have atypical development to explain, in detail, what's going on and why.  And so, they don't*.

I also know that I have read ... a lot... of information (printed and online) about optic nerve hypoplasia; I still Google it sometimes to see if anything new comes up.  I know how it feels to be a frightened mother looking to educate myself on something I'd never heard of until it affected my baby.

SO I want to do an exhaustive post (series) that covers everything that we know about ONH because of Hayes.  Please keep in mind that I am neither a doctor nor a pediatric therapist, and I am describing our family's experiences and decisions regarding this condition.  I'll post medical information, signs, and links I consider to be useful resources.

Optic nerve hypoplasia is a congenital (before birth) neurological (brain) condition resulting in varying degrees of vision loss and can be associated with other disorders and conditions.  Hypoplasia means 'under-developed', and so the name of the condition itself basically describes the fact that the optic nerves were malformed as the baby's brain developed during pregnancy.  The optic nerves are the nerves that connect the eyes to the brain.  There are no known causes of ONH, but studies have linked the usage of drugs, young maternal age, primaparity (first pregnancy), and low maternal weight gain to the condition.  It is not known to be a hereditary condition and is not currently linked specifically to any chromosomal malformations.

When a person has optic nerve hypoplasia, it can affect one (unilateral) or both (bilateral) eyes, and the development can be moderately to severely under-developed.  For example, one person with ONH may have optic nerves that are only slightly smaller than the typically developed person's, while another may have optic nerves that are almost completely diminished.  Obviously, this means that even with the same medical condition, vision loss can range from near to normal acuity (what we call "20/20") to no light perception, meaning that the brain does not perceive the image of light through the eyes.

Every ophthalmology appointment/MRI result has indicated to us that Hayes's optic nerves, while smaller than average, are not markedly underdeveloped.  Unfortunately, as he is still unable to talk, we are not sure of just how much/well he is able to see.

It is important to remember that even with a bilateral ONH diagnosis that the brain will adapt to the under-developed optic nerves.  And so while the optic nerves will not themselves repair or grow stronger, the brain can learn to read their signals better over time, often until the ages of three to five.

This is also why it is important to monitor the health and function of the eyes.  ONH is sometimes associated with strabismus (eye crossing) and nystagmus (eye shaking).  In the case of strabismus, if the eyes are crossed for a long period of time, the brain will eventually 'shut off' the signals it receives from one of the eyes to cancel the 'double vision' effect.  (This is called amblyopia.  Read more about it here.)  Treatment can be consulted with your ophthalmologist and generally consists of patching either eye or undergoing strabismus corrective surgery. (For more information on strabismus, talk to your child's ophthalmologist and click here.)

It was because of strabismus that we were initially referred to a pediatric ophthalmologist by our family physician after Hayes's four month check up, and in turn it was the ophthalmologist who first diagnosed Hayes with optic nerve hypoplasia.  Hayes had the strabismus corrective surgery in July.  His eyes have healed nicely and do not cross as frequently.  Because both of his eyes have always seemed to cross equally, rather than one or the other, our doctor has never recommended patching, and for this reason I am less comfortable giving extensive information on patching.  (For more information on patching as an aid for eye alignment and acuity, talk to your child's ophthalmologist and click here.)

Nystagmus often occurs in people with ONH, and it means that the eyes move quickly, or 'bounce' in different motions, like up and down or side to side.  Interestingly, people with ONH can find their 'null point, which is an angle at which they can look at things without having their eyes move constantly.  (For more information on nystagmus, talk to your child's ophthalmologist and click here.)

We have been on the watch to see if Hayes seems to prefer looking at objects or people from certain angles, which may indicate that he has found a 'null point'.  There is actually a surgical procedure that can 'move' a person's null point.  For example, it would be much more convenient if the null point could be found when the eyes were looking straight forward, instead of looking at things obliquely from a wide angle.  So far, we have not noticed Hayes preferring any such positioning.  

We have noticed him 'nodding' quite a bit, and at this last appointment, the ophthalmologist referenced a condition called spasmus nutans that is associated with nystagmus, although not necessarily with ONH.  Spasmus nutans is characterized by nystagmus and head movements, such as nodding.  It generally manifests during infancy and early childhood, but generally resolves itself by ages 3-4.  Because the signs can also be misread as spasmus nutans when they can actually be signs of problems such as brain tumors, doctors will often order MRI scans to be done.  Since Hayes has already had this done with no concerns coming up, our doctor felt comfortable ruling that out.  (For more information about spasmus nutans, talk to your child's ophthalmologist and click here.)

Because no one likes to scroll forever, this wraps up the first part of what I hope will be an informative, frequently updated series about optic nerve hypoplasia and hypotonia (in broad scope) and our journey with Hayes (in specific detail).  Stay tuned for: associated conditions, posts on early childhood intervention and how to get it, hypotonia, global developmental delay, genetics, and most likely more.

Everything I Know Series
What IS Optic Nerve Hypoplasia - Part 1 (you are here)

  • Medical information / New Terms
  • Personal Andrews information
  • Medical specialists
  • Therapy / Government Programs
  • Really important information
  • and links I think you should visit always look like this

But here's your reward for making it this far.  Hayes says, "I bet you thought she'd never stop talking!"

*It's okay to ask.  : )

Saturday, March 1, 2014

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.**

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.

Tuesday, November 5, 2013

Hope Ambassador

A few months ago I posted an original design of mine that was given as a gift to a couple getting married in South Dakota.  I don't know them, but my in-laws do; the bride is from the States, and the groom is from Haiti.  They met while the bride was on a medical mission trip to Haiti.  To me, the quote was lovely and fitting for their marriage.  Here it is if you don't feel like clicking over (and also, I misquoted the phrase in the artwork and it is k i l l i n g me):

“Differences of habit and language are nothing at all if our aims are identical and our hearts are open.”

Maybe you were blessed with a spouse who is a lot like you.  Maybe you're surrounded by friends and family who are like your little clones, replicating your personality and beliefs.

Koby and I were not.  Koby and I were blessed with spouses who challenge and counter nearly every point of our personalities.  We are not alike.  Even though we come from very similar upbringings, even though we were raised in the same church, even though we have the same eye, hair, and skin color,

sometimes it feels as if WE may as well speak different languages.  (Married people, can ya feel me?)

Here are some things we've had different opinions about lately or ever: the Dallas Cowboys, the appropriate amount of red meat one should consume, the extent to which the Founding Fathers have been deified, best teaching practice, the environment, Miley Cyrus, the appropriate way to voice political beliefs, where to put the second Direct Tv receiver, bedtime rituals in general, how often Knox should brush his teeth, the extent to which Knox should be clothed when he goes to bed, where to put the soap in the shower, appropriate topics in public . . .

Most are trivial.  Some are not.  Sometimes our different natures work incredibly in our advantage; when Koby is stressed, I remain calm, and vice versa.  Sometimes our disagreements leave us laughing, sometimes they jar us off course and we spend a few angry minutes cooling off in separate rooms before we can realign our marital compass.

But 'we' work.  (And please know, it takes work, as I think any marriage should.)  And I think Mrs. Rowling was on to something when she noted that differences matter not when you're supportively working together towards the same goal.

Today I took Hayes to his neurology check up.  The doctor was very pleased with his strength and progress, but he was concerned about some of the cognitive (mental) delays that Hayes is still showing.  For example, the fact that he isn't supporting himself with his arms while sitting or catching himself when he topples over isn't solely related to his vision impairment.  (Completely blind babies should be able to sit unassisted by 12 months.)

It's worrisome to think about Hayes having some degree of cognitive impairment (mental retardation), but it's not something that was out of my scope of considered possibilities.  It's not something fun, to have the doctor echo what rattles around in your brain in your weaker, doubting moments.

But it's irrelevant to worry because I left the appointment with yet another "We'll just have to wait and see," because that's exactly what we'll have to do.  The realm of possibilities is thankfully and frustratingly endless when it comes to Hayes and his condition - but couldn't the same be said for every child?

And I've realized that God has given me an incredible weapon and force to combat worry and anxiety about Hayes AND to empower our son to achieve at the best of his ability - and that is that I've been blessed with a different habit-ed, different language-speaking, open-hearted, aim-identical husband in Koby.

God can work through our marriage to give Hayes (and Knox!) the BEST possible life, whatever that may entail.

Hayes's AWESOME first birthday was this past Saturday (if you haven't read Koby's birthday post for Hayes yet, check it out), and at the party, I was struck (for the jillionth time) by something else.  God blessed Koby, Knox, Hayes and me with different habit-ed, different language-speaking, open-hearted, aim-identical hope ambassadors in the form of family and friends.

How have I been so incredibly blessed to have so many people who make it a point to strive for the best lives for my own children?

Finally, I want to end with a wonderful verse that gives me comfort and reminds me that not only do we have hope for eternity, but that we've also have hope for the present day, and it has the power to permeate and radiate in our lives now.

But in your hearts revere Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect . . .

- 1 Peter 3:15

Saturday, November 2, 2013

A Dad's Point of View

2nd Blog ever.  First off I want to wish a happy birthday to my baby boy Hayes, he is so handsome and getting stronger every week.  2nd I will say life is good when you are playing good football.  Now back to Hayes man.  There are many questions surrounding Hayes and our family but this is what I know.............Hayes is an Andrews so - HE WILL SUCCEED.  He may be an All District football player, a great athletic trainer, artist, musician, doctor, wheel chair basketball phenomenon, or inspiration to others that have his condition but HE WILL SUCCEED.  I hate brag-heavy parents and you have to get real with your kids at some point, but Hayes Brandon has a spark within him that the world will feel eventually.  The lord has blessed me immensely with one heckuva family.

Friday, October 11, 2013

Word to The Mother

To engage the reader in your setting, try writing using all five of your senses.

I suggest this to my kids and get pretty interesting results.  My favorite quote thus far has been,

"Whoosh!  I smell old people."

Gems like that make grading personal narratives on a Saturday morning interesting.

I'm going to take my own advice and try to set up for you the thing that is MOTHERHOOD.  (Because all of us twenty-somethings are the first ones to go through it and we really need to let the rest of you know what it's like...)

Motherhood smells like puke and melted crayons.

Motherhood sounds like the devastating cry of a morning alarm clock when you've gotten up four times in the night to check on congested children and supply juice or hugs as needed.

Motherhood tastes like cold dinner and leftovers.

Motherhood looks like a messy house, smashed lipsticks, piles of laundry, dirty dishes, spit up stains, more laundry, and the waiting room at the doctor's office.

Motherhood feels like cradling a twenty pound infant with your left arm, carrying a five pound umbrella stroller in your right, climbing bleachers to the top to watch a football game while coaxing a toddler to follow you, only to have that toddler puke on you when you've all sat down with your things.  (Any resemblance to actual events or locales or persons, living or dead, is entirely because this very thing happened tonight.)

And at times, motherhood feels thankless.  Whether you're a stay-at-home mother or a working mom, in equal measure people will judge you for your decisions and make thoughtless -or even snide- remarks.  You'll feel defensive, sometimes even around your friends and family, because of the choices you make for your children.  


Motherhood also smells like clean babies, dried off after a bath and wrapped up in soft, fluffy towels in your lap.

Motherhood sounds like a first "I love you" or a "Mama!" in the night, when only you are able to comfort your scared little one.  It sounds like laughter in the backyard and new, invented words that will be spoken in your family from now on.

Motherhood tastes like Oreo kisses and a glass of red wine because you're not pregnant anymore.

Motherhood looks like family pictures with round, happy faces, Teddy Grahams in your pockets, pacifiers in your purse, and confidence in your eyes.

Motherhood feels like...

Motherhood feels like...

Motherhood feels like this:

You can follow me on Instagram.

it feels like moments of complete, whole, thorough, down-to-your-bones bliss and satisfaction.  Moments of bliss and satisfaction in between the moments of puke. 

And I want to encourage mothers to cut themselves, and each other, some slack.  I thought the whole 'Mommy Wars' thing was a myth, or at least some small thing hyped up and over-dramatized by people who really needed something to talk about (and it probably is, a little bit), but I can tell that we all feel attacked and defensive at times, whether it's because of criticism from other moms who don't parent the way we do, family members, or by people who aren't parents at all.

It gets a bit disgusting, the petty and back-handed way parents and non-parents (so.... people) condescend to or about each other because of things like organic food, breast milk, formula, McDonald's, careers, staying at home, cloth diapers, corporal punishment, disposable diapers, immunizations, daycare, and something called 'sleep training', which is... I'm still not quite sure what, even two kids later.  And it (the delusions of superiority) really goes both ways.  I hope we remember amidst all the decisions we constantly and consciously make for our children that we are also at times unconsciously modeling for them how to treat, speak about and to others who are different from us.  

Peers with kids: I know this is our reality now and I am so glad that we are all -hopefully- trying to make educated and best-possible choices for our children, but let's remember that we aren't the first mothers (parents) on the planet.  We haven't got it all figured out, we're not the ones experiencing this wonderful and terrifying responsibility for the first time, and maybe, just maybe, we all have a chance at being superb mothers (parents), even if we don't all do it the same way.

First Amendment Writes

As a sixth grade English teacher,  I spend a considerable amount of time introducing and stressing the importance and power of choosing the perfect, tailored word or words to communicate one's ideas or feelings.  The power of words is astounding - it amazes me, encourages me, cuts me to the quick, inspires me, and comforts me daily.

And so, in that same spirit of challenge, I would like to amend and redress something I said in a post a few months (or what feels like a lifetime) earlier.

When Koby and I first found out that our son Hayes has a neurological condition that affects his eyesight (called Optic Nerve Hypoplasia), I wrote this regarding my anxious feelings prior to the diagnosis:

 I was afraid there was something we'd be discovering about Hayes from the moment I held him for the first time.

Let's talk about inference.  From the tone of that statement, you, the reader, would probably infer that I was anticipating 'discovering' negative things.  Learning negative things.  Experiencing negative things.

And you'd be right.

Despite my optimism there existed underlying fear as, together, our family faced the unknown.  I don't think the subconscious negativity was exactly harmful: in fact, I think it sprang from pure ignorance.  As we genuinely didn't know what to expect, I focused on the upsetting discoveries we'd be likely to encounter.

Let me tell you about Hayes and discoveries.

Hayes began therapy through Early Childhood Intervention in May.  Since then, he's had weekly sessions from a wonderful occupational therapist, monthly visits from a speech therapist, bi-weekly check-ups with a vision specialist (through the Clay-Jack Co-op), monthly visits with an ECI case manager, and spent occasional time with a coordinator from Division for Blind Services, who also secured an iPad for him and keeps us abreast of new technology, toys, books, resources, and get-togethers for families like ours.

In May, I sat with the ECI ladies and our vision therapist and we set some motor skills goals for Hayes, who also has what's called hypotonia, meaning low muscle tone.  Hayes' first goal (set when he was six months old in May) was to raise his head when lying on his stomach and change position or turn his head to face people or objects at least five times daily.

As we sat in that room and put those words to paper, I remember thinking Will this ever really happen?  I looked at my son, and I hate to admit to you that I doubted him.  Our reality at that time was that our six month old son wasn't rolling over and still didn't visually track objects well, or indeed seem interested in things much at all because of his crossed eyes (strabismus).  To me, that goal may as well have been to build Hayes a rocket ship using paper clips and bubble gum and fly him to Venus by his first birthday.  It seemed equally hard that day.  I couldn't get past our reality.

Hayes had the strabismus corrective surgery in July and it went 'perfectly' according to plan, according to the surgeon, who is also our ophthalmologist.  Around that time (and perhaps because of the surgery and its effects) Hayes was catapulted into a time of advancement.  He began rolling over, he began tracking.  It was awesome.

He plateaued for what felt like eons, but was actually a few weeks.  Teeth sprang from his gums in the nick of time to reassure me that nothing too alarming was happening with his hormones.  His genetics test results came back and found only one very small loss of material on one something of a chromosome, meaning that he's got no known 'syndrome'.  (Obviously we haven't been to that appointment yet because that's as specific as I can get and I'm not even exactly sure what I've just said.)

And then, y'all, the best thing happened.  Hayes met his goal.  He was rolling over, holding his head up steadily, and changing positions to look at things and listen.  In early September, we set a new goal.

In May, I looked at my son and thought Are we crazy to be this hopeful? and within three months, we were beginning to plan for new goals.

And so, my amendment is this: while some discoveries have tested our foundation, some have solidified and strengthened it.  I regret that I felt that way about the discoveries I'd make with Hayes, but I know so much more now.  I am learning and discovering a new kind of hope and perseverance, and my eleven month old son is my teacher.

Tuesday, July 16, 2013

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