We Can't EVEN - a.k.a. "A Feeble Thanks"

Y'all.  I can't even.

Sweet Snap from Eliz's bff.

Can't wait to wear our Hayes Bear shirts! XOXO MLE

(Yummy surprise on our doorstep from my sister's best friend.)

A church sister read about my disdain for washing/sorting socks... so she brought new ones.  HA!

Sweet Snap from one of my BFFs and her BBF (beautiful baby face).

Since our last post about Hayes' seizures, and even since we'd mentioned our concern about his 'spasms', we've been

overwhelmed

with an outpouring of love, prayer, encouragement, and generosity.

I'm not even posting pictures of the cards Hayes has received, the personal texts, Facebook messages posts, tags, and re-posts, retweets, phone calls, updates on shirt sales from our sister Elizabeth, faculty e-mails, and shout-outs we've been getting from ALL OVER.

I need better words.  I need better words to be able to say "Thank you... thank you, so much."  Those words seem feeble.

They seem feeble when I want to say, "You've transformed my recent "Please, please, please" prayers into "THANK YOU, Thank you!" prayers."

They seem feeble when I am bombarded (bombarded in the best way - like an over-abundance of cupcakes... or a battering of butterflies) on all fronts - Facebook, email, Instagram, Snapchat, text messaging, voicemail, real mail - by encouragement and assistance for Hayes.

Our family, friends, colleagues, employers, church family, friends of family, family of friends, friends of friends, (etc,) and STRANGERS we've never met have come to our aid by praying and showing support for Hayes.

I am so thankful and brought to a new mindfulness of the power of helping - and the many, many ways we're blessed in the current time to be able to help.

Y'all.  I am so guilty of not reaching out all the times when I have the power and ability to do so.  I think it takes a great courage to help someone.  It takes courage to say, "I love you and I'm thinking about you.  Whatever you need, I'm here."  THANK YOU for the courage you've shown in reaching out to us, for thinking and praying for us.

I am so thankful for social media.  What a wonderful instrument it can be in the arena of giving!  What an awareness it can raise for a family's needs!  What a way someone can feel able to help, when he or she may be too far to away make a meal, pick up a kid from daycare, or visit someone at their home.  I know this because I've watched social media help others, and now it's helping my family.

So, someone get on it.  Invent some new jargon that will echo the language, the hope and relief and happiness of my heart when I think of you all.  Then say that to yourselves, from us.

Pre-balded Hayes and semi-naked Knox.

And the Bear himself?  He's been in pretty good spirits since leaving the hospital.  We've ALMOST got all the glue used for the sensors off his head despite daily baths and various product attempts (no, I'm not joking - it is incredibly stuck and the amount of scrubbing it would take would cause a sore on his scalp, and I'm still not sure he's forgiven me from the haircut trauma I caused him last week).

His seizures seemed to stop while the ONFI was in his system, but beginning on Friday, he started having seizures again.  Today he probably had the most seizures I've ever witnessed him having.  Please keep him in your prayers.  We are going back to Cook's on Friday for a 30 min EEG, but we will have to wait to reconvene with our neurologist (also at Cook's) until next Wednesday, because they couldn't get those two appointments together on such a short notice.

AND YES, Knox is wearing Pull-Ups.  I really doooooooon't want to talk about it. (Potty training is hard. While you're on bended knee re: Hayes, would you mind sending up a quick one for K on this front?  95% kidding here,  That's 5% serious.)

We love and appreciate you all.  Good night.

My Son Hayes Has Epilepsy

My son Hayes has epilepsy.

That probably sounds more melodramatic than I really need it to be, but it's true.  In my last post, I mentioned that we'd noticed Hayes having what we'd previously called 'spasms' (which we now know are seizures) at the very beginning of September.  I contacted our neurologist, who ordered a 30 minute EEG for Hayes.

During the EEG, Hayes did not have a seizure, but we've since learned that even while his brain did not show seizure activity, it had patterns that indicated he was likely to have seizures.

The day following the EEG, I was able to capture one of his seizures on my iPhone and e-mail it to our neurologist, who immediately ordered a 24 hour EEG, which was finally scheduled a week and a day after the initial EEG.  I am so incredibly thankful that camera phones are a thing - there is no telling how many 30 minute EEGs we would have had to endure before one caught a seizure.

The night before the 24 hour EEG, I decided to minimize the pain Hayes would experience while attaching/detaching the EEG sensors by cutting his hair. Things escalated quickly - Hayes was not taking kindly to the hair cut, and fearing that he'd inadvertently make me stab him with the scissors, I reverted to the clippers.  And now, he is bald.

Yesterday we arrived at Cook Children's Medical Center at 10:00 am (or a little after, since I had to turn, turn, turn, up to the very highest level of the parking garage - that hospital holds A LOT of people) to begin the 24 hour EEG.  I was so relieved that we weren't having to sleep-deprive Hayes for this observation, like we did for the last EEG.

Hayes had a seizure almost immediately after he was hooked up to the monitor, around the peak time frame that I'd mentioned noticing/making note of his seizures.  (I've noticed him generally having them in clusters of about 10 minutes or less apart a few hours after waking and before lunch time, and then in the later afternoon and early evening.  But, he will occasionally have them in sporadic isolation or clusters at any time throughout the day.)

Hayes slept a lot during the day ... (more about THAT later...) but he did have a few more seizures that we were able to mark.  Each time Hayes would have 'an event', I would push a red button and the people watching via the video camera in our room (he was humanly-monitored as well for the entire duration) would mark it on the computer so the physical "event" would correspond with the brain activity.

Around 3:00 / 3:30 (while Hayes was still sleeping), the epilepsy-neurologist specialist came in to let me know that the seizures that Hayes had already had were classified as myotonic clonic.  Myotonic clonic seizures can be damaging to the brain, and to stop them he recommended we begin administering the anti-epileptic drug ONFI.  (*30 minutes pass as I ask this doctor probably every question I can think of about the brain, the seizures, and this drug*)  The seizures are spasm-like jerks of the muscles, which you can see in the video at the very end of the post.  The doctor left, and Hayes had a very late lunch.

Koby arrived just before 7 pm and we took turns going to grab dinner in the cafeteria below, then bringing the food up to the room to eat.  Hayes dozed after having another bottle and then had dinner around 8 pm.

A poor, unsuspecting pharmacist came in to brief me on ONFI and stayed 20 minutes longer than he'd probably expected while I asked him to describe the reactions of every human who has ever taken this drug.  No, okay.  But almost.  

Around 9 pm, Hayes' nurse came in to administer his first dosage of ONFI.  

Let me quickly tell you that anti-epileptic drugs generally work because they depress, or slow down, the nervous system.

Except for Hayes.  

Side note - Hayes can get hyper sometimes.  In fact, almost immediately after he was hooked up to the EEG monitor, I took him out of bed in order to give him a snack.  He began kicking and thrashing about in his excitement of THE FOOD THE FOOD THE FOOD.  Unfortunately, the people watching the video surveillance have not had the pleasure of seeing my son Hayes eat before, so I was a little confused when I heard, "We're coming, Mom (everyone called me "Mom") and then a nurse busted through my door saying "OK! Something happened?"

And I said... "Yes... he saw the apple sauce."

This is Hayes' "I'm eating food" dance, complete with new beat-boxing skill and kick-finish.

Apparently, my son expecting food looks like a grand mal (tonic clonic) seizure.

Back to the story - enough about that.  HAYES ON ONFI = that hyper kid you remember from elementary school who should have been medicated but never was.  Except on crack.

Oh, and remember how I'd let Hayes sleep all day?

Hayes beat-boxed and clapped and yelled (loudly) until about 12:30 am, when he remembered that he hated all the wires on his head, at which point he began crying (loudly) for another 30 minutes.  We finally gave him some Tylenol, and he was able to rest.

At 6 am, Hayes had some blood drawn for a lab test that his endocrinologist orders every 6 months.  Unfortunately, this didn't go well and ended with him being stuck in both arms before we could get the blood he needed.

Hayes dozed on and off before breakfast.  Koby and I again took turns in getting breakfast.  We hoped we'd be leaving around the 24 hour mark of Hayes' arrival (10 or 11 a.m.) , but we began to suspect from the nurses' indirect answers that it may not work out that way.  (Side note - all the nurses and doctors and family liaisons and social workers and chaplains and social workers again and then family liaisons who came in our room again were WONDERFUL, as are most of the employees we interact with at Cook's.) 

Finally, the neurologist came in between 2 and 3 pm, after we'd learned he'd wanted to confer with his colleagues regarding Hayes' video EEG.  He let us know that they'd identified an additional type of seizure, this one called complex-partial.  These seizures are harder to recognize, as they don't generally involve a convulsion of the muscles.  When Hayes has them, he 'blanks out' and stares into space, and they last for about 7-10 seconds.  This concerned Koby and I, because Hayes has been doing that almost his whole life, which I've brought up with our neurologist before.  We'd attributed it to sensory-processing overload, almost like a coping mechanism.  

Because of this additional type of seizure, our epilepsy-specialist neuro wanted to hold off on the ONFI until we tried a 5 week course of oral steroids.  Steroids cannot be administered for long periods of time because of the side effects, so he wanted to try this first and not in conjunction with the ONFI, so as not to confuse which medication was effective or ineffective.  

So.... no ONFI.  Steroids.  (Enter 1,000 questions.  Click here to see one of the sites I visited after thinking, why steroids?)  Steroids can be immune system suppressors, so Hayes will be avoiding crowds/daycare for the next five weeks while we begin a steroid regimen and then wean him off of the medication.

And then we stayed at the hospital for another three hours because of complications with a urine lab (it leaked) and my prescription insurance (I haven't got the card yet) ...

And then we were driving home and it was wonderful.

Hayes convinced a sympathetic nurse that he didn't need the awful gauze on his head, and he promised to stop tapping and picking at it.

 Hayes having seizures isn't wholly alarming or shocking to us - his potential risk for having seizures is one reason we've been seeing a neurologist for over a year.  In essence, this will just be an adjustment as we begin medications and learn to live with seizures (hopefully not for very long!).  We know that his seizures are just symptoms of the underlying problem that we have yet to identify.

We are desperate to end these seizures because we want Hayes to reach his full potential, and these episodes inhibit his brain from progressing.  We want him to keep moving forward and learning and achieving until he is doing all that he was and is able to do.  We know that his full potential looks different than most others', but we are so grateful for the things he is able to do, and dread him losing those abilities.

Koby and I want to thank our families, coworkers and employers, caregivers, therapists, and friends who have been a constant support in this new development with Hayes.  We have had teachers cover our classes at almost a moment's notice, friends pick up Knox from daycare and offer to bring food to the hospital, and family who are willing to continually pray, encourage and sacrifice their time, resources, and energy to ensure that Hayes is offered the best-possible healing environment.  Hayes' and Knox's school caregivers are wonderful and flexible, and Hayes' therapy and intervention team is second to none.  THANK YOU ALL for your prayers and encouragement.  We feel very loved and lifted up.

For those interested, this is a video of Hayes during one of his myotonic clonic seizures.  The seizure happens within the last seconds of the video.  You can see that he is upset or disoriented after the event, which is a normal occurrence after the seizures.

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.

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.”

― J.K. Rowling, Harry Potter and the Goblet of Fire

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

- 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.

 

 

MRI Results

I took the call at work today.

See, I THOUGHT it was a call from Cook Childrens anyway... I conveniently left my school-issued iPad there when we had our MRI appointment last Friday.  That's right.

So I took the call in class, my twelve three-to-five-year-old children waiting (not so) patiently and (not so) quietly as my aide struggled to give them their lunches without my help, and I was startled to hear that the person on the other end of the line was ready to give me MRI test results for Hayes Andrews.

Let's pause for a moment and think about that job.  And I thought mine was hard.

He went on to let me know that the optic nerve looked good - no significant underdevelopment at all.  In fact, he kept going on about it so much I made him stop and I asked, "So.... he does have optic nerve hypoplasia, right?"  He does.  But the optic nerve ISN'T super small.  Which is good news.

Great news.

Miraculous news.

My baby can see.

He did report on another finding, however.  Hayes' corpus callosum appears to be smaller than normal.  In my "OHMYGOSHHEPROBABLYWON'TBEBLIND" euphoria, I didn't stop and ask for the exact comparison between Hayes' corpus callosum and the average 5 month old baby's.  But I don't regret it.  It was a good call, a good moment, an answered prayer.  Correction: answered prayers.  Because I know Hayes Andrews has been lifted up by countless people over the last few weeks and our family is incredibly grateful and humbled.

But anyway.  If you haven't tabbed over and Googled 'corpus callosum' yet, here's what you're missing.

The corpus callosum is a big band of fibers connecting the right and left hemispheres of the brain.  Essentially, they help the two halves 'talk' to each other.  The two halves being able to communicate like this is vital for every action the body needs - from basic movement to critical thinking skills.  Disorders of the corpus callosum can range from complete agenesis (absence) to partial development to abnormal development.  These disorders can affect motor skills, critical thinking skills, social adeptness and other things.

I'm praising God today because I feel like we've been blessed.  I told my mom while we were at the appointment for Hayes' MRI that I had a peace about Hayes, and I meant it.  The peace doesn't mean I'm not taking this seriously, it doesn't mean that I don't acknowledge that what we're dealing with is a 'big deal'.  I've just realized that nothing a doctor tells me can utterly devastate me because NO ONE knows my son more than my Lord.  Humans can't even write all there is to know about optic nerve hypoplasia.  I'm guessing now that not one doctor on this Earth could tell me precisely what caused my son's optic nerve and corpus callosum to develop in the ways they did.  But God can.  Not one doctor can tell me where my son will be in six months.  But my God can. 

There isn't a human on this planet who can look at a picture of my son's brain (amazing though it is that we can acquire one) and tell me where he will be at ten years old or what he will have accomplished.  But my God can.

Hayes Brandon was designed by the Creator with a purpose and he was delicately, intricately, beautifully and wonderfully made by a loving Father.  No one, despite their degrees or accolades or accomplishments, will be able to tell me beyond a shadow of a doubt, anything about his future.  No one can rule out what he may or may not be.

My God is a Healer and maybe he won't heal Hayes, but he's healing me.

This blog will not become a site dedicated to optic nerve hypoplasia.  It won't become a site about the intricacies of the corpus callosum.  Because my life isn't just about that, and neither is Hayes'.  Hayes is more than the way his brain developed.  Frankly, it would be exhausting and selfish to let the magnitude of this condition overwhelm me daily.  It's not my job to worry today about whether or not Hayes will be able to hit a ball off a tee or drive a girl to the Prom.  Today I'm thinking about whether or not it's been four hours since he last ate, if his feet are cold, if Knox got enough to eat at dinner and whether or not Koby felt like I appreciated all he did for me today.  So if my next post is a petty one about, say, the evils of cell phone carrier companies, you'll know that I'm not neglecting or ignoring the fact that my son has a brain disorder.  I'm just still a human being. 

What's Wrong with Baby Hayes?

Dearest Blogfans and friends,

I have totally been avoiding you.  Somewhere in between this moment:

and this one:

I began to experience the seedlings of fear and apprehension about Hayes and his development, and I didn't want to talk to anyone about it.  And since these fears were so linked in my mind with Hayes himself, it was really hard to talk to anyone with the 'new baby' subject off-limits.  I withdrew from friends, I haven't blogged.  I didn't even share my fears with my husband until I couldn't contain them anymore and bombarded him in the middle of a school day with a torrent of terrified text messages.

While deciding how to write this post, I hesitated upon an approach: Ugly and honest?  Purely medical jargon?  Spiritual?  Optimistic?  We're going with a mix... all of the above.  For the past twenty-four hours I feel like Koby and I have been choosing a mindset (because that is the singular beautiful thing in one's own control) as if a couple might shop around for a new car - considering all the angles, for a new car can either bring a family comfort or stress; it will keep them moving against all odds or leave its passengers broken down in unfamiliar territory.

Back to my fear seedlings, their origin.  This voice is the dramatic, emotions-based voice: I was afraid there was something we'd be discovering about Hayes from the moment I held him for the first time.  Perhaps it was the residual feelings of paranoia remembered from his first in-depth ultrasound when the doctors found choroid plexus cysts.  Maybe it was a mother's intuition, but it probably wasn't.  Maybe it was pure pessimism.  But in any case, instead of the peace and fulfillment I thought I'd feel holding him for the first time, I felt panic.  Koby left the room to get me food and I frantically began searching every inch of Hayes, looking for the something that was making me feel this way.  I never told Koby about this moment of terror I had (until recently) because I was embarrassed - who acts like that in the first moments of her son's life?

But Koby came back and I smiled, we left the hospital.  Hayes grew, and the feelings went away for the most part.

Until he turned about two months old.  Hayes was doing a few things that concerned me - his eyes were crossing more than I remembered Knox's ever doing, and seemed to be crossing differently to me.  Knox's seemed to cross when his little eyes were tired of doing all the new things they were trying out - when Hayes' eyes crossed it seemed like his preferred M.O.  At Hayes' two months check up the doctor asked if he was tracking objects with his eyes, and I said 'yes' without thinking.  As I drove home I began to think, He doesn't track objects very often at all, I don't know why I said that.

When I took his two month pictures, I felt like he should have been holding his head up better.  I referred back to Knox's pictures and thought Knox seemed tighter, more rigid, whereas Hayes wasn't holding himself up at all. 

But if there is anything parents, doctors, friends, strangers off the street, etc. will tell you it is OH MY GOSH NEVER COMPARE SIBLINGS TO EACH OTHER DON'T START DON'T DO IT.  So I ignored it.  Sort of.  Not really. 

The fear really took a step up at three months.

 
Hayes' floppiness seemed to increase, or maybe it was just all the more noticeable as he grew in size and weight, but not in tone.  I kept pleading with my inner demons, appeasing them with the thoughts that Hayes would miraculously catch up with other babies and suddenly begin to hold his head up in time for the four month milestone marker that was looming ahead.  He'd start to make eye contact and track objects and reach for things and all the rest...

But he didn't.  And I began to exist in a state of what I'd call functioning panic.  (This is still the Emotional Voice speaking.  We'll get to the much calmer Medical Voice in a minute.)  A few days before his four month birthday, it suddenly hit me: Hayes wasn't going to hold his head up, he wasn't going to catch up.  He was going to miss this milestone and I was a mom who was going to freak out about it.  I was going to be the one who insisted something was wrong.  And so I brought Koby into my little circus of fear and Googling.  (Curse you, Google.)

And so I scheduled Hayes' four months check up with the doctor and began making a list of the concerns I'd be ready with when the "And is there anything you're concerned about at this point in time regarding Hayes' development" question came.  Literally, a list.  And I hated it so much, this list lying there covered in things Hayes couldn't or wouldn't do, that I started a 'Can Do' list on the back.

When the appointment came I was too embarrassed (and didn't want to mispronounce) the things I had already diagnosed Hayes with courtesy of Google: hypotonia (low muscle tone) and strabismus (crossed eyes), so I just calmly read off the more pressing worries from the list.  More important that day was addressing Hayes' RSV, which is a virus that attacks the respiratory system.  Our doctor didn't seem concerned about Hayes' inability to hold his head up (even though in my head I'm thinking HYPOTONIA! LOW MUSCLE TONE!) but did refer us to a Pediatric Eye Specialist in Fort Worth to check out his vision.  Maybe the doctor didn't want to immediately jump to the most dramatic cause behind Hayes' symptoms, like I had done.  For a few days I (and every one else who knew what we were doing at this point) felt better, but then the old demons came creeping up behind me.

It's funny, how we try and talk people out of their feelings.  Since yesterday I've marveled at it - I don't think it's wrong, necessarily, I just think it's human.  We tell babies "Don't cry, don't be sad," we tell toddlers "You're okay," and we tell ourselves and each other a whole host of things to persuade us apart from our feelings.  After the routine check up with our pediatrician, Koby felt calm, but I was worried.  And I tried to get him on board with my feelings.  I don't think I did it on purpose, I just did it.  Since yesterday, I've been the (relatively) calm one, and Koby felt the same disconnect I did - Why can't she just feel the way I'm feeling about this?  How can she think these things, look at it this way?  I know I often felt like I wanted to shout in peoples' faces "This IS a big deal, I DON'T think it's going to be 'okay'!"  I'm left to wonder, do we ever react the way we should?  Is there a certain set of feelings we should feel under certain circumstances?  Or are those feelings so transient, fickle, and dependent upon such a variety of factors that the only thing that matters is how we handle those feelings?  (Parable of the two sons, anyone?  We'll get back to that in the Spiritual Voice portion of our program.)

Enter: Medical Voice.  Yesterday was our appointment in Fort Worth with the Pediatric Vision Specialists associated with Cook's Children's Health Care System.  I was excited and nervous in equal measure.  Maybe not equal measure.  But more excited than one should be about having to take their infant in to get his vision checked.  I was ready to get the ball rolling - ready to considerably fine-tune my Google searches.  Ready to begin understanding why my son won't hold his head up well, won't look at things. 

I went half hoping that they'd fit him with a pair of baby eye goggles, maybe patch an eye, and we'd see miraculous and immediate improvements.  I think at one point I really sort of believed that would happen.  But when the doctor diagnosed him with Optic Nerve Hypoplasia, I don't think it shocked me as much as he might have thought it would.  Indeed, it's a bombshell, but when the mother has already considered a thousand times there might be something wrong with her son's brain, it isn't the blindsiding force it could be otherwise.

Here is what I can tell you in my own words about ONH from just over 24 hours of research.  (Bless you, Google.)  Optic Nerve Hypoplasia (ONH) is a abnormality of the nerve that connects the eyes to the brain.  This condition occurs when the nerve doesn't form correctly during the first few weeks of pregnancy (meaning it is a congenital defect).  There is no known cause, although some prenatal issues could be risk factors.  ONH can affect either or both eyes (usually both) and its effects can range from mild vision loss to zero light perception (total blindness).  Because it's an issue having to do with the brain and more specifically, the middle section of the brain, other neurological disorders can be present including but not limited to, motor function, developmental delays, hormonal issues, mental retardation, and other things.

This is essentially what the doctor told me, plus or minus a few points.  The questions I immediately asked were typical, "Was this a result of brain trauma or as the brain was developing?" (Brain developing, it's not my fault or anything I did or didn't do, yadda yadda) and "Based on what the nerve looks like now, how much will he be able to see?  If he doesn't improve from this point onward, will he be legally blind?" (We can't tell at this point, wait and see, yadda yadda.)  We're scheduled to have an MRI on April 9 to explore Hayes' brain and see what other, if any, abnormalities or defects are present.  Still to be scheduled is an appointment with a pediatric endocrinologist who will assess his hormonal levels to determine if they are functional or abnormal.  Based on the doctor's appraisal, his ONH seems to mild and judging by the fact that he is thriving, he may not be suffering any hormonal deficiencies at this time.  (Although they may present themselves at any point.) 

Here's what I can tell you in my own words about ONH after my son being diagnosed with it about 24 hours ago: I hate it.  I wrestle with the thought of "This is unfair for my baby".  (Note: these are my Ugly Thoughts, not Koby's.  He won't entertain this one with me, and for that I commend him.)  I wrestle with jealousy - after all, I work with dozens of children whose brains formed perfectly during the 6th and 12th prenatal weeks.  I  know you always hear stories of these wonderful people afflicted with all sorts of terrible things who are never once heard to ask "Why me?" and I guess those people are all better than me.  To me, it's completely logical to know that no, it's not fair for a baby to have its brain develop incorrectly for apparently no reason whatsoever and thus suffer a range of mild to severe symptoms every day for the rest of his life.  It just sounds juvenile and petty to call something unfair.  And that makes me incredibly angry on Hayes' behalf.  Koby and I haven't even begun to discuss the big, ugly questions like What if Hayes is severely mentally handicapped?  What if we have to pay for costly hormonal injections to give him each night to ward off dangerous and life-threatening hormone deficiencies?  What if he never gets married because of his condition?  We don't even talk about the little things.  What if he can never throw a baseball with us?  What if he never knows what his brother looks like?  What if I can never show him how to write his name?

I won't even get into the guilt of birthing a baby with a congenital brain defect - for all the 'you couldn't have prevented this' comments out there, there will always be the illogical but wholly real nagging feeling in the back of the mind.  Illogical, yes; counter-productive, of course; ever-present, indefinitely. 

You might think less of me after reading all that, but I'm choosing to err on the belief that I'm allowed some ugly, visceral thoughts because I intend upon acting in the right.  Nevertheless, shut up, Ugly Honest Voice. 

To my credit or discredit, depending upon whom you ask, I have always tried to think of things from the 'other side'.  While part of my brain screams "How on earth is it fair that this baby's brain developed abnormally?", the other, logical and Spiritual Voice tells me "Why not this baby over any other?"  My baby, my family, me - we are no better or more protected from these things than any other human on the planet.  What right do I hold that grants me a pain-free, hardship-free life?  In fact, yesterday I found myself thanking God that I had a car to drive to a Pediatric Vision Specialist less than two miles from my home who could diagnose my child on the spot.  I even thanked God for Google, which filled in the gaps left after the five minute conversation I had with the ophthalmologist.  And though we have to wait a month for it, I am genuinely grateful I live in a country where I have access to MRI technology, I have insurance that will (hopefully) cover (some of) it, and amazingly, miraculously, wonderfully, I have a loving husband who will be a encouraging, supportive and Christ-like dad to a child with special needs.  I have friends and family members who are heroically stepping up to help me with my own special needs during this time.  Hayes has a brother who is kind, compassionate, loving, thoughtful and protective of his younger sibling at the age of 20 months old.

And then, I have Hayes.  He is my sweet baby.  Now that I've been enumerating my worries and fears and 'can'ts' about him, can I please tell you about HIM?  He's my happy boy, the patient younger brother who endures Knox's proddings and times of over-helpfulness with a coo and only very occasionally, a quiet cry.  He is so strong and beautiful with his reddish blond hair and dark blue eyes that I cannot believe there are things misfiring under his perfect skull.  His hair might be curly - if not he's definitely going to suffer chronic bedhead with hair growing in so many directions at once.  His one request is to be held at all times, but if you're unable, it's okay.  His favorite is lots of kisses on his cheeks and neck.  He likes milk at room temperature and has been known to spend ten minutes smiling and laughing instead of drinking.  He's big and full of the most delicious baby rolls you could imagine.  He deserves the very best.

Koby and I have been filtering through our thoughts and feelings, sorting out which ones will work and which don't.  We're still choosing which ones will help us operate our mindset like the good family car, steadily moving us forward one day at a time.  I grew up privileged - I never knew what it felt like to be in a family living from paycheck to paycheck.  I never saw a family member battle a disease, depleting their strength and living from day to day.  I've never thrown myself at God's mercy and known what it was like for His joy to be my strength.  I'm sure I thought I did, but this is new.  This season of my life is showing me what that means - how the Lord can be my strength.  The value of the Daily Bread, the Grace that can carry a person when her strength reserves are depleted.  In short, I have never lived day to day in any sense barring the obvious but easily forgettable fragility of my own mortality.  But now I am having to learn what it means, spiritually, economically,  mentally, and otherwise. ( I am speaking for myself, but I think Koby would echo me here.)

We appreciate and covet your prayers for Hayes, but if I seem vague or overly positive or negative at any time that you might talk to me over the coming days/weeks/years, just know it's because I'm tweaking my mindset.  I'll get it right eventually.

Real Thoughts

Here is why it is amazing to be a Christian:

God's way is best.

He is the ultimate Designer, Planner.  His ways are so much higher than our ways.

I set out this holiday season to bless others and found that in the blessing I received something equal, or even greater than whatever I was trying to give.

My friend Sarah emailed me a few weeks ago with an invitation to do Blessingmas 2012 with her, and I decided to accept.  I baked for some of our neighbors, but before I could even walk the goodies over (slight malfunction with the oven... alright, I got sucked into YouTube sitcom bloopers and burned a batch of cookies), my neighbors blessed me. 

On Wednesday, Knox dug a half-eaten Snickers out of the bottom of a Christmas gift bag and took a bite.  This is significant because my son is allergic to peanuts.  Diligent though I have been to ban peanuts from entering my home or car, though I have been a new paranoid monster mommy at church potlucks and childrens' birthday parties, I forgot about the candy from our office gift exchange and forgot to pick it up or throw it away before Knox got home.  (I'll probably still be guilt-ridden, talking about this incident in therapy, years on down the road.) 

Since Knox was diagnosed with a peanut allergy, it's like we've been waiting for that moment.  And there it was.  My head said "This is it" and I sort of started to panic.  I'm probably making it sound a lot more dramatic than it was.  Knox's body's reaction probably hovers somewhere in between 'mild' and 'severe' at this point in time, and definitely nowhere near 'life-threatening'.  (Though in some cases reactions progress with each exposure, which is why if we could afford it and they didn't have a shelf life of about two seconds I would buy Epi-pens and give them to every person Knox might ever meet.)  Still, we called 911 at the outset because we weren't sure what we'd be dealing with.

Koby (thankfully and reassuringly infinitely calmer than I was in this situation) stood in the front yard holding a blotchy-faced and confused Knox, I was on the phone with the 911-receptionist and running in and out of the house, wielding an Epi-pen like it was the antidote in The Temple of Doom, our dogs raced up and down the fence line, sensing our anxiety and barking their heads off, and Hayes screamed on the couch, his dinner having been interrupted by our mini-crisis.  It felt like a spanning of generations, but it all took place in the space of less than two minutes. 

And from down the road strolled our elderly neighbor.  She calmly walked through our gate and asked if she could help with the baby.  Covered in peanut-puke, I gave her Hayes and his bottle and dazedly asked her how she knew we needed help. 

"I heard your address on the scanner and came over to see if I could help with one of the babies."

Sometimes it's uncomfortable to help other people - we don't want to get in the way, we don't want to intrude, we don't even know the person needing help, or sometimes we just don't even think of helping at all.  I'm saying 'we' - I mean 'I'.  But I am so glad our neighbor wasn't hindered as I have been, by pride or fear.  She immediately saw a need, she walked over to our house and she sat on our couch and she gave Hayes the rest of his bottle. And the inside of my house became as peaceful as it could have been in those moments. 

Suddenly, the cookies I'd dropped on the counter when I heard Koby say "Why does Knox have a Snickers?" seemed like a really small and insignificant thing to give a neighbor. 

I wrote a lot more in their card than I probably would have if I had not burned the cookies and been able to deliver them on Tuesday, like planned.  I set out to bless my neighbors with refined sugar, but before I got the chance, my neighbors showed me "love thy neighbor".  And I am thankful that this is the way my God teaches me to be, and that my family has been blessed because of it.

I also (with a little bit of Pinspiration - not sure I have an original thought left in me) concocted a plan to bless Koby by doing an actual Twelve Days of Christmas.  But with more Sour Patch Kids and less exotic fowl.

... it's been harder than I thought.

And not because I had to come up with 78 gifts with which to present him, though admittedly that was hard-bordering-on-impossible. 

It's been hard because we're married, and things come up.  The logistics have been a nightmare.  Factor in sick kids, emergency 911 calls, long days at work, out of town basketball games, early morning practices, traveling for family, new babies and sleepless nights.  And then remember that we are indeed married, and some days I don't really feel like giving him small, thoughtful gifts.  Some days I don't want to give him small, thoughtful gifts so much as throw them at his head.  (Full disclosure, no shame.)

But, I am a stubborn person and in those moments I told myself, "I've committed to this, and I will finish it."  And each day (tomorrow is day nine), regardless of whether I felt like giving him his gift at the outset, I've gone to bed glad that I did.  Each day, through the act of giving God blessed me with a feeling of peace that I might have been lacking before.  And each day Koby gracefully and gratefully accepted my gifts, even if I had been a raging butt-face a few hours beforehand.  (Full disclosure, no shame.)

I hope you can see the metaphor for marriage here without me cheesing out totally and writing it.

This Christmas I have felt more of the spirit of the holidays than ever before - both the secular (how fun is it to actually wrap toys for your own kids at Christmas?!) and the spiritual.  Even in the midst of a broken world in a time when it literally sickens me to hear the news, I see that neighbors still help each other and I can reflect on the love of my family each night before I go to bed, and so I feel and see glimpses of God's Kingdom here on Earth.  I hope you see them too.

Because it feels good.