Monday, March 13, 2017

What a cochlear implant is NOT, what it IS, WHY we chose to implant our daughter, and our expectations for Heidi

As mentioned previously, our youngest daughter, Heidi, was born deaf. She is almost 15 months old, and received bilateral cochlear implants last week. I first heard of cochlear implants (CI's) a few years ago, but really didn't understand what they were, how they were used, or what they can or cannot accomplish until recently. And even now, I only have a rudimentary knowledge as to the range of outcomes for CI's and some of the pros and cons. We're still novices at this!

But given how little I used to know about CI's and given that I receive many many questions from friends and family that reflect a similar basic gap in understanding, I thought I'd write out some info that can hopefully clear up many of the questions people have regarding Heidi. I don't mind questions and always appreciate people caring enough about Heidi's journey to ask questions. . . even if they are very basic questions or questions based on a misunderstanding. That's okay! And for my friends-and-also-professionals who read this, feel free to make any corrections on my explanations :-D.

First of all, what a cochlear implant is NOT. This honestly is a really important thing to understand. CI's are absolutely NOT a cure for deafness. When I first heard of cochlear implant surgery (we had a deaf neighbor when we lived in Texas, who had CI surgery around age 6) it was explained to me as a way to correct deafness and let someone hear. Um, no. No, no, no. This is not like repairing a torn ligament or even like something such as corrective eye surgery. Cochlear implant surgery does not fix deafness. And I'm not mincing words here, or trying to hold onto a label of "deafness" that I somehow don't want to let go.

So what IS a cochlear implant? Basically, CI surgery implants a device into a person's cochlea (in the inner ear) that allows the auditory nerve to be stimulated through electronic means, to bypass the usual sound pathway of ear canal, eardrum, middle ear bones, etc. For whatever reason, one of the main causes of deafness (by no means the only cause) is insufficient hair cells in the cochlea. These hair cells are extremely crucial to hearing and the stimulation of them through the usual means are exactly HOW a person hears. Without these hair cells (or other possible reasons why hearing is absent), sometimes a CI can be used to stimulate the cochlea in a mimicry way.

What was actually inserted into Heidi's head last week was two sets (one for each side) of electrode arrays that were slid into her cochleas and naturally coil up into the snail shell shape of a cochlea. Different pitches of sound in normal hearing stimulate different areas of this snail shell shape (and transmit this info to the auditory nerve, and in turn, the brain). In a similar way, with the technology of a CI, sound transmitted through an external microphone and processor then sends a signal to trigger electrodes along the inserted electrode array, which in turn stimulate the area of the cochlea corresponding to that sound.

In theory. Actually, it doesn't work out so perfectly in actuality. The sounds perceived by a CI recipient APPROXIMATE actual sounds, but can be "off" in pitch by quite a bit, which matters some in learning to listen and/or speak, and even more in learning to listen to music, as pitch is more important in musical settings. A CI recipient goes through gradual therapy over several months, that introduces the brain to more and more of a range of sounds, as the brain accustoms to sound and perception of sound. And even after initial auditory-verbal therapy, most CI recipients will need additional speech therapy to groom their speech.

Some CI recipients never develop enough sound discrimination to develop speech, while others are indistinguishable in speech from a "hearing" person. Some CI candidates are very accustomed to sound and speech, and prefer using sound v. choosing silence and signing. Other CI candidates find their strength in sign language, visual perception and expression, and other non-auditory methods of exploring, communicating with, and viewing the world, and either benefit from a CI in more general ways (awareness of environmental noises, but not speech) or don't benefit from CI's at all. More on the varied "success" of CI's later. . .

But back to what a CI is not. Remember that I said CI surgery is not a cure for deafness? One of the very real reasons it is not is because a CI does absolutely nothing unless the outer processor is attached (with working batteries). If the outer processor is not being worn, no electrodes are stimulating the cochlea, the auditory nerve is not being stimulated, and no hearing is taking place. In other words, the person is still deaf. Cochlear implants are battery operated devices that can be turned on and off at will.

Post-surgery, one of the most common questions I've gotten is if we've noticed Heidi responding to sound yet. We haven't yet, for the very simple reason that she hasn't even been given her outer processor yet. In order to not associate the new experience of sound with potential pain, the surgery site has to fully heal before she's given her initial sound stimulation in a few weeks. In addition to the electrode array, also implanted directly under her skin is a magnet that will be used to attach her external processor in place when she's using her CI's to access sound.

Even when she's "turned on" at the end of March, her processors are programmed very low, to only stimulate a select range of sounds. As the months progress, the idea is to slowly program her to receive more and more sound input, as she becomes accustomed to sound and as her brain learns to process sound. Remember, as far as we can tell, she has probably never heard anything, so this is all new stuff for her brain! I've met one mom with a deaf daughter who was implanted about a decade ago, and the mom told me that her daughter didn't even respond to sound at the initial stimulation, because the program was turned so low initially. So it'll be interesting to see if Heidi even visibly "notices" her initial program, or if that'll wait until future programs that add more to the spectrum.

Okay, so here's the million dollar question and the most controversial: why did we choose to implant Heidi? For many people we have met, the assumption was that OF COURSE we'd implant her, because why wouldn't we want to use this amazing technology, and for other people we've met, they've been very leary of the use of cochlear implants and counseled us against or counseled us to wait and let Heidi decide. Why or why not?

Well, I'll start off with saying I totally "get" why someone would choose either path. We wrestled with a lot of pros and cons, and while we felt confident in the end with wanting to explore cochlear implants for Heidi, we also understand the concerns with CI's and why others might choose other paths. Here is what it boiled down to for us:

On the con side, it really really gave us pause to consider allowing our child to go "under the knife" for a non-life-threatening reason. We didn't take this lightly. We know every surgical procedure has risks, and drilling into the skull (to be quite frank) certainly has some. So does having a permanently-implanted device in your body. We're okay with Heidi just the way she is. She doesn't NEED hearing, she can have a full life without it, and we believe that she could be just as content in her deafness as we are with it. Not just "okay" with deafness, but thrive with deafness.

Hearing loss is just that: a loss of hearing. Heidi's brain is fully functioning, she is in excellent health, and is poised to take on life to the fullest. As long as we pack language into her, she's fine. And we truly believe that. This is exactly why we've poured so much of our time and energy into sign language this past year, and why we will continue to make sign language part of our family culture and part of our means of communicating with Heidi.

The two major objections to CI's, especially to those in the Deaf community, as far as I can tell, revolve around concern with (1) neglect of sign language in order to focus on listening and speech and (2) perception of deafness as a "disability" that needs to be fixed.

As I already said, we don't plan to neglect sign language, as we simply don't know what Heidi's success with a cochlear implant will be. If a child is not given a full language by age 5, this language deprivation can have permanent repercussions on their mental and cognitive function, even if they're given language later. Because we don't know NOW if Heidi will have full access to language through a cochlear implant EVENTUALLY, we don't want to wait and wait and then find out after she's already language-deprived that she needed sign language and that we should have been learning it sooner.

To address the more controversial topic of deafness as a disability, one must understand that a culturally Deaf person not only is fine with their Deafness, but is happy they're Deaf, and offended by terms such as "hearing disabled." This is why I use the term deaf to describe Heidi, because it simply isn't an offensive term. It's a perfectly acceptable label. A person who is culturally Deaf doesn't need or want pity, and is quite happy in a soundless world. For hearing parents to have the chutzpah to "fix" their deaf child without consulting the child is potentially offensive to many who consider themselves "capital D" culturally Deaf.

From the beginning of our journey with Heidi's deafness, I've sought to be very sensitive to the Deaf community, Deaf beliefs, and a Deaf perspective on what Heidi needs, listening to the voices of the Deaf community as well as medical professionals. I think both worlds have much to offer us, as hearing parents of a deaf child. I absolutely will not tolerate comments to this post that mock the Deaf community or Deaf beliefs. Period. I find their language beautiful and their love of who they are AS they are (rather than a discontent in who they are not) to be inspiring and comforting.

But that being said, yes, I consider hearing to be the normal way that God created man to communicate, and we believe God's promise in the Bible that He came to make the deaf man hear and the lame man leap for joy. Deafness is not a blessing to us (except in so much that we believe that God redeems everything for Himself and brings good for His people out of all circumstances), it is not something we sought, it is not something we would pray for in another child. But we would welcome another child who is deaf! And we wouldn't choose to prevent more biological children if we discovered Heidi's deafness is genetic. Our deaf child is a blessing! However we also do not have an objection to adding sound to our deaf child's world, if we think it could give her advantages.

And to address a side issue, why did we choose to implant Heidi NOW, v. waiting until she's older and letting her choose that herself? The biggest recommendation I've heard from the Deaf community is not to NEVER implant Heidi, but instead to wait until she's a bit older (anywhere from elementary age or older) and let HER decide if she wants to experience sound. This is her world, her body, and her experience. Let her decide.

And we considered that. But ultimately it boiled down to, for us, a realization that either way - whether we chose to implant her now or waited and let her decide - we already were deciding a major decision for her. We had to choose whether or not to give her that chance for sound access during her most crucial period of language development. She doesn't NEED that sound access, to be clear, but we did have to make the choice either way, to give it or to decline the option.

Getting a cochlear implant at age 7 or age 10 or adulthood - especially for someone like Heidi who is prelingually deaf - is simply NOT the same experience as for someone who is a baby or toddler. There are crucial developmental windows for developing speech that would be missed. Yes, a CI recipient who receives one later can often still get some use out of a CI, but not in the same way that an earlier recipient would. The longer the human brain does not have access to sound, the more the brain rewires itself (how cool is that?) and is "taken over" by the other senses, to compensate. If we waited until Heidi was older and let her decide, she would not have the option to go back and recapture that crucial developmental window for speech and language.

We do NOT believe that a family who doesn't choose early implantation is "depriving" their deaf child of sound or speech. Absolutely not. They are simply choosing a different emphasis and a different option for their child. But we also do not believe that by choosing implantation for Heidi, we are "depriving" her of her deafness. Our intentions, rather, are to give her the fullest opportunity to experience both the hearing and deaf worlds. In order to truly experience the closest that she can to the hearing world, she can best do that by early access to sound stimulation. Should she choose at an older age to "turn off" sound, she can simply stop wearing her outer processor. We would totally support that decision at an appropriate age. Yet another reason to have a sign language base of communication!

We live in a hearing world, and we live in an English-speaking world. And like most deaf children, Heidi was born into a hearing family. If possible, and according to Heidi's abilities, we feel that it will benefit Heidi over time to have tools that allow her to access both the hearing/spoken aspect of our family culture and especially (since the outside world cannot adapt in the same way our family can) to access spoken language and sound in the outside world.

Having access to sound, even electronic stimulated sound - and potentially having access to speech -might allow Heidi to be a much more independent communicator than if her main method of communication was sign language. This in no way is disparaging the use of sign language, either as A means of communication or the ONLY means of communication for her. This is simply recognizing that while living, communicating, and working in modern-day America, not having need of a sign language interpreter to go about daily business can be a huge asset to a deaf individual.

If Heidi was born into a fluently-signing deaf family, this would be completely different. Her language access would be complete and accessible from day one, and her family culture and her built-in close community of friends would already have her language and her culture. (Talking through walls and talking while doing eye-intensive tasks is a major part of our family habits! That's been really difficult to slowly adapt! We are a "hearing culture" family, for sure!)

But Heidi wasn't born into a fluent signing family. And her family, while trying to learn sign, will not be fluent anytime soon! If we choose a signing-only environment for Heidi, realistically she will have limited communication with most of our acquaintances, friends, and family. Yes, we plan to seek out deaf friends in the Deaf community, but we also have a very large foot in the hearing world. We and she don't NEED her to be part of our hearing world, but we'd like her to have as many ways as possible to feel that she belongs in our family and our world in every way. This means developing sign language so that we can communicate with her effectively, but it also means considering ways that we can include her in our inevitable hearing activities, as her ability allows.

There are SO many factors that affect the "success" of a CI, including if a person is deafened pre- or post-lingually, if they have multiple-challenges rather than "just deafness," if they receive adequate follow-up therapy, if they get appropriate language input, if their auditory nerve is fully-functioning, etc. And honestly, there are just a lot of mysteries and questions in medical research as to how to best predict the success of a cochlear implant, for the purpose of accessing sound and developing speech. It might work, it might not.

Our general expectation for Heidi is that she will soar. In her time, in her way. We expect LANGUAGE for her, not because language is automatic, but because it is so essential. We don't know what else to expect, and we're not sure what form that language will take - spoken, signed, written. . . some combination?

Honestly, this is really new ground for us. With our other 3 kids, they became extremely fluent talkers at a young age with ginormous vocabularies simply because their mother never shuts up, tele-commentates EVERYTHING to her babies, and because they were blessed with no communication barriers. With Heidi, language will take a lot more purposeful input than just her mother constantly talking. Factors like background noise, effectiveness of her CI's, therapy, how quickly her family learns sign language and how faithfully they sign with her and around her (it has to be in her field of vision!). . . so much more at play and so much more one-on-one attention needed!

We honestly don't know what to expect as far as what communication mode will work best for her, both short-term and long-term. We've been told by well-meaning people that she will definitely prefer sign language over sound and speech, and that might be what happens. We're okay with that! We've also been told by equally-well-meaning people that she will likely prefer sound and speech, because for most children implanted at her age, it comes easier for them than sign language. That might be true. We're okay with that!

We do not expect that she will be a fluent English speaker, though we are poised for that possibility and it is in the realm of realistic results. We also do not expect she will choose sign language as her primary means of communication, but we are okay if she does, and are working towards greater sign language fluency. We expect God's grace in the craziness and His direction each step of the way. We expect we'll make a lot of mistakes, learn a lot, pray a lot. We expect our whole family will continue to learn a lot and grow a lot through this whole process. And our prayer is that Heidi will thrive and learn to effectively communicate with us, with others, and with her Creator. That's quite enough for us. Anything else is icing on the cake.

Saturday, January 07, 2017

2016 Keister Year in Review

I think this may have been the first time I've gone a whole year between postings on this blog, but it has been a doozy of a year. The best one-sentence summary of our year is my niece's comment to my mom that "it always seems to be something with Aunt Susan's family." Yes, Madeleine. Yes, indeed.

A much longer update? See below. (I am long-winded; you have been warned.)

We bid adieu to 2015 after welcoming Heidi into our family. Heidi was the sweetest newborn ever, and I spent 99% of my time in January snuggling with her on the couch, not because she demanded it (easiest baby ever), but because I could not get enough of her sweetness (she still is a really sweet little one). We'd been in Wichita for 6 months and started to settle in, loving the area, our church, the people, Adrian's job.

Then 2016 took off like a jack rabbit.

Since Heidi was a homebirth, my midwife gave me the contact info for a local audiologist and told me to get her newborn hearing test done "in the first month after birth." (For a hospital birth, it's usually done before discharge.) Heidi was only a week and a half old when Adrian asked me if I'd scheduled the test yet, and asked me if I'd noticed if Heidi had a startle reflex. "Oh, definitely," I replied. "She startles if I touch her sometimes." Then he asked, "But does she startle to SOUND?" Hmm, I had to think about that. Then I started experimenting. She didn't care if the vacuum was on right beside her, she didn't alter her suck pattern if I started talking while she was nursing, and she didn't get distracted by her rambunctious siblings bursting into the room and yelling while she was drifting off to sleep. Hmm, new territory, this.

Less than a week later, she failed her initial hearing test (but many children do and still have perfect hearing), and more notably, a month after that she had a more extensive hearing test with a diagnosis of "severe to profound deafness." Well, that was definitely a different beginning to 2016 than we'd anticipated! This was a whole new world to consider, so many options to look at, so many professionals who offered advice (conflicting advice, just to make it more confusing).

But God. God gave us such peace. I cried for just one evening a few days BEFORE Heidi's first hearing test. As soon as Adrian mentioned his suspicions and all of our "well, try this and see if she startles" home tests didn't stimulate a hearing response from Heidi, I knew. I knew she was deaf. I told the audiologist before the first test, and again before the second. I cried that one evening before the first test, because I had to lay aside MY dreams for my daughter. Every parent has an image of their relationship with their child, and my image involved lots of talking, listening, laughing, and. . . hearing. Language, and specifically SPOKEN language, is so important to me. Treasured by me. So I wrestled with God that one night as I laid aside those dreams. Then I took up the gift He gave me and have been so thankful for who Heidi IS, not who she's NOT.

God is so gracious. He gave me such peace and He gave Adrian such peace. That was the one time I cried about Heidi's deafness. I've been fine with it since. Like, really fine. Like, weirded-people-out-with-how-fine-I-am-with-it sort of fine. I can't even explain it. But after that night, I was "over" her deafness.

This is Heidi, and now we know more about her, and we're going to find out the best way to nurture Heidi. Okay, well. . . her middle ear doesn't function "correctly." So what? That's all that's wrong? What great news! We can work with that.

Deafness is part of who Heidi is, but it isn't all she is. Heidi is a bubbly, exuberant one-year-old with everything in her little head working just right. . . except the middle ear. She's just as mischievous, fun-loving, and bright as her siblings. Keeps me on my toes, can cause trouble right here in Raleigh-city (because yes, we moved again. . . more on that in a bit). She has definitely earned her nickname "rotten stinker" with her antics. Walking, climbing, addicted to nursing and Mommy snuggles. Stubborn. Has the most gorgeous peals of laughter. The apple of her sister's eye, and feared by her oldest brother because of her spit-up powers. And her 3yo brother just thinks she's a live teddy bear. She lights up every time Daddy comes in the room, but thinks she needs to fight him for bed rights next to Mommy each night.

We enrolled in a sign language class the week after Heidi was diagnosed. Our plan was to pick up Latin in 2016, for homeschooling. Instead, we've been learning sign language. Latin will have to wait a bit! And Heidi is signing back! She doesn't have fluent signers at home, as she would if she was born into a deaf family, so her sign language progress will not be as rapid, but we're signing to her, and she's signing a few words back, and that's pretty dang exciting, I must say. We have a private deaf tutor, which has been a challenge and a great experience.

A deaf child born to hearing parents is at a huge risk for language deprivation. The brain is ready for language, but language doesn't just happen without input, and for hearing parents, that input is naturally primarily talking and listening! So we've been learning a whole new world and way of thinking about language. We've learned SO much about language acquisition, sign language, alternate forms of communication, and surgical options for deafness. There is so much info out there! And everywhere you turn, everyone has a different idea. You basically can't have a deaf child and not offend someone with your choices. And that's just kind of the way it's going to be, we've realized.

We believe strongly in giving Heidi a visual full language that does not rely on technology, and have invested a lot of our free time and money into making that happen. We still have a long way to go, as we learn and use sign language. But as we've studied different options and prayed over the last year, we're also excited about the possibility of cochlear implant surgery as a way to give Heidi electronic hearing which could potentially open up a lot of possibilities to Heidi, and allow her greater independence and give her listening experiences.

Results for cochlear implants for deaf children are mixed. They can be amazing miracles for some children, and they do not work as well for others. And they're only a tool, a battery-operated device that is not a permanent surgical "fix" for hearing loss. But as we've looked into cochlear implant options, it has become evident to us that for many children, they are a really incredible tool that opens up their world to sound. We want to give that option and that opportunity to Heidi, so we are planning to pursue cochlear implant surgery for her in the next few months. Since cochlear implants are a huge subject of controversy within the Deaf community, maybe I'll save that issue as a whole for a separate post, in which I explain why we came to that decision.

But back to our life in 2016. So Heidi is diagnosed as deaf. We start learning sign language. La-di-da. Oh, hmm, let's move, to keep things lively. So off to Raleigh, North Carolina we go in June. My oldest child has spent homeschooling in a different home for each of his first 5 years of schooling (preK-3rd). Someday, I hope to not be a nomad. We do think choosing to move was the right decision yet again, but we were also sad to say goodbye to Wichita and our wonderful community there.. Adrian chose to go back into engineering (after a few years in private teaching). A good career move, but another transition in 2016. . . a busy year. He loves his new job here in Raleigh, and it seems a good fit for him.

Prior to our move in the summer, our seven-year-old Hans (now eight) started his own drama, not to be outdone by Heidi. As some may remember, our time in Texas from 2013-2015 was really really difficult on Hans' health (and my own). Texas was a valley for us, and a large part of that valley was the pervasive and toxic effects that mold wreaked on Hans' young body. Mold had debilitating psychiatric effects on Hans that were truly frightening and paralyzing for our whole family. When we moved to Wichita, he started to heal and unfurl and blossom. Then in March many of his symptoms started to reappear, though our rental home in Wichita was mold-free. It took quite a bit of sleuthing, but it was finally evident that he was having a PANDAS reaction to strep. (Google that if you want to be happy that all strep gave you was a sore throat - ha!) But just as we finally realized WHAT was triggering his health struggles (after a month of doctor consultations and head scratching), everything cleared up overnight. Instantaneously. GONE. Physical symptoms, psychiatric symptoms, emotional symptoms. Boom, over.

But then PANDAS came back in full force a few months later in June, right as we were in transit from Wichita to our new home in Raleigh, NC. If you take a look at our (many!) medical bills over the summer, they basically follow us eastward, as we stopped on the way and visited doctors. We were all treated for strep (because we were all positive asymptomatic carriers, except Heidi), and Hans started feeling better. But then boom, back again. This was something more. He was clearly reacting to strep, but that wasn't all. We'd even managed to confound his PANDAS specialist. He wasn't responding to treatment anymore, after a brief initial improvement. It was truly scary and completely debilitating for him and for us all.

Did I mention we'd just moved across country? And were learning a new language for our deaf daughter, finding professionals to help Heidi, establishing new relationships in Raleigh, trying to start back up homeschooling, get involved in our local church?

Among Hans' incredibly-extensive battery of blood tests he had over the summer was a Western Blot test for Lyme. You must understand that he'd been tested a few times before for Lyme, by multiple doctors, always with a negative test result. But you also must understand that Lyme tests are incredibly poorly-designed and yield beaucoup false negatives. I'd suspected he had Lyme back in Texas, but his tests came back negative and all his symptoms seemed to be able to be explained by the pervasive mold we had, so we moved on and didn't pursue further. But one key to the puzzle is that mold sensitivity and PANDAS can both be caused by the underlying issue of a chronic Lyme infection. And yes, good guess: his test this past summer (finally) came back positive for Lyme.

We flew out to Seattle in August (me, alone on a plane with 4 kids, one of whom was completely psychotic at the time - an experience), combining a trip to my parents and brother and family with a visit to a Lyme specialist. And then we entered the complicated, expensive, lengthy, and time-consuming world of chronic Lyme treatment.

It's a long road. Lyme is not an easy thing to conquer. Having friends who have walked this road before us, I knew it was a long journey, and honestly, chronic Lyme is one of those things I've feared. One of those "Dear Lord, please just don't give me THAT trial" sorts of fears.

But God doesn't promise to keep us or our loved ones from trial or physical suffering. He does promise to walk with us through it, though. He walks through the fire with us, and He promises that the flood waters will not overcome us. Scriptural promises like these have been very dear to me this year. Texas felt like a valley of dry bones. I KNEW God was there, but it was so hard to feel His gentle touch. Texas felt like a very severe mercy, but He brought us through that. Wichita was an interim period of green meadows, spiritual refreshment, nourishment, and refocusing. Then we were led into another valley. But He has been there too.

If I could sum up Hans's experience when strep and Lyme are attacking him full-force, I would use three fictitious characters: he is Kay in the Snow Queen (pierced in the eye by a sliver of mirror that causes him to see the evil in the world and not the good), he is Peeta in The Hunger Games (hijacked by Tracker Jacker venom, unable to distinguish truth from fiction), and lastly, he is Dr. Jekyll and Mr. Hyde.

Hans is not all those things all the time. He was all those things this past summer, and the old Kay/Peeta/Hyde comes back to visit periodically, as his body flushes out Lyme. Lyme is a very cyclical treatment, where you start to feel better, then tons worse as you clear toxins, then some better, then worse, etc.

Chronic Lyme manifests in different ways for different people. For some, it's primarily chronic pain, for others it may be heart or thyroid issues, for others fatigue, autism, early-onset Alzheimer's, fibromyalgia, etc. Basically, Lyme is the great imitator. Which is another reason (besides poor diagnostic testing) that it can be hard to diagnose.

For Hans, he continues to struggle with fatigue, intermittent aches and pains, and periodic psychotic episodes (that have thankfully lessened and spaced out dramatically with treatment). We have Jekyll for several days, and then Hyde comes to visit. We have to watch what Hans eats and drinks, monitor his meds, make sure he gets rest and sleep, but also plenty of exercise, mind refreshment, the whole nine yards.

And somewhere in all this, school is still supposed to happen. This has been quite the year of adventure for homeschooling. By some miracle, we did get our goal for schooling done by the Christmas break, and the kids have learned so much, but it has been quite the year of innovative educational options. alternate scheduling, adaptations, and sometimes just hair-pulling :-). Ha!

2016 was a hard year full of trials, but it was also a good year. Hans has grown so much spiritually through his struggles. I really treasure so many deep spiritual conversations we've been able to have with him, and the insights he's shared not in spite of his trials, but because of his trials. If you're familiar with the Hunger Games and Peeta's slow recovery from hijacking, Hans' story has so many eery parallels, and the real/not-real games that helped Peeta sort out fact from fiction have helped Hans as well. I will always think of Lyme as tracker jacker venom. And I will always think of the Gospel and scripture as the antidote, because we've seen that in Hans' own life. Yes, he needs physical remedies, but he also needs the balm of scripture.

We're all starting to settle into Raleigh life and a new welcoming church. We've enjoyed living just a few hours from my sister and her husband, and enjoyed many visits back and forth with them before they head overseas again in early 2017. We enjoyed a week-long visit from Adrian's brother and his family in November, before heading to Charlotte to spend a week with my whole family for Thanksgiving. My parents flew here for Christmas and Heidi's 1st birthday. And now boom, a whole year is gone, and we're into 2017. Hans' treatment will continue for quite some time, and we go back out to Seattle for another check-up in February. Heidi will hopefully have cochlear implant surgery sometime in the next few months.

My own health was up and down for a good portion of the summer and fall (in a more stable place the last 6 weeks or so), but pales in comparison to Hans'. When I couldn't get out of bed myself for several hours at a whack on random days, and we're already working around Hans' treatment, it can make homeschooling even more challenging. I'd love to write a post soon about homeschooling through chronic illness (either child or parent). It's been a unique experience.

Gretchen and Martin have barely received a mention in this post! Gretchen is 6 and my creative, crafty one. She is my non-squeaky wheel. She is a good help, and loves to spend most of her time doing crafts: origami, cross-stitch, drawing, beading. . . anything she can get her hands on. She joined an American Heritage Girls troop this year and loves it. She, Hans, and Adrian all are doing Tae Kwon Do too, through a local TKD school.

Martin is 3 and all boy. My aunt got him a tiger shirt this summer that said "Life is an adventure" and "It's a jungle out there," and that pretty much sums up Martin perfectly. Rambunctious, fearless, exuberant. . . and also can be a perfect crank if he's over-tired or his blood-sugar has crashed ;-). He's a prolific talker, and can wax eloquently(?) for long periods of time about Octonauts or Wild Kratts, should a victim arise who will listen ;-).

Life is full. Challenging, but still good. God works all together for good for those He has called, and I count myself blessed to be of His number.