Saturday, January 07, 2017
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.