We have had the privilege over the past few days of visiting with some dear friends from our church. Kevin and Heidi are traveling missionaries who have lately been away more than they’ve been home. Kevin offers IT support to various mission agencies while Heidi uses art and science to teach kids (often ours!) truths about God.
Usually when we visit with them, we only spend about three minutes in the car to get to their house, but this time, they invited us to camp with them out in central PA…
…in the comfort of Kevin’s parents’ back yard!
We had a wonderful three days. The weather wasn’t always cooperative. But we had some good times outdoors…
This bike ride was curtailed by a thunderstorm! Quite an adventure for our four big kids!
Coraline takes shelter from the rain with Heidi.
Kevin and Trevor take the 4-wheeler out for a spin. The kids loved going for rides on this once Daddy learned to drive it!
Photo op only! Once the boat was in the water, we decided it was just a teensy bit too windy for a boat ride.
Lots of opportunities for Trevor to do boy stuff!
A friendly salamander.
..and indoors, too!
We are so thankful for these precious friends and the time they have invested in our kids over the last couple years. We’ve enjoyed getting to know them better, and we’re blessed to have them in our lives.
On our way home, we were blessed to attend a picnic for larger-than-average families organized by Susanna from The Blessing of Verity. Susanna’s blog has opened the eyes of many to the suffering faced by orphans with special needs in Eastern Europe. I discovered Susanna’s blog soon after we traveled for our first trip to meet Niko in June 2011. Susanna traveled just a week or two after us to the same country to meet her daughter Katie, who has Down Syndrome and was so severely neglected (physically and emotionally) that she weighed only 10lbs at 10 years old. This family’s story is so much a part of the fabric of my heart now, that I sometimes forget not everyone knows it. I showed the blog to my step-mother last week before we left for our trip, and when she saw the before and after photos of Katie (oh, how Katie is thriving now!), she was immediately in tears. She just didn’t know. And that made me think I should be showing this blog to more people!
It was such a joy to meet Susanna (as well as Katie and Verity… and James and Laura) and get to know several other moms at the picnic. If you have ever considered special needs adoption, please take a moment (or two!) to read Susanna’s most recent post. It articulates many aspects of special needs adoption with such sweet truthfulness. Maybe even check it out if you’ve never given a thought to special needs adoption. It’s that good.
And now… we are home. And tired.
It was good to sleep in our own beds again last night!
For a while it seemed like Spring would never quite settle in, but it finally has. We are firmly in that perfect time of year with lovely warm days and crisp, cool nights that make for perfect sleeping conditions. Our last few weeks of school seem like no bother at all since we can spend them mostly outside. Also, Pippa’s already had her homeschool evaluation for this year (our first!), so we can relax a little and know that third grade is pretty much in the bag.
My friend Mary had her baby (a bit early, but mom and baby are doing well) three weeks ago. I am looking forward to my first ever playdate with my best friend, and her deliciously adorable new daughter, Maura, this coming Monday! Congratulations to their sweet little family.
We are looking into school options for Niko for next year. We have been in the process since January of having him evaluated for special services by our local school district. He does indeed qualify for speech therapy among other things, as we knew he would, but it remains to be seen what the school district will actually provide to us as homeschoolers, if anything. We are watching hopefully to see what God might do here, but also wanting to push on other doors in case this one closes.
To that end, we went to a Cyber Fair today to check out some of the many wonderful online public schools that our state offers. I think we found at least a couple that would be a good fit for our family, so we have a bit more homework to do if we decide to go this route. The concept of having a public school beamed right into my home may take some getting used to, but I am thankful to know that Niko could receive all the services he needs this way (for free!) without my having to sacrifice precious face time with my boy. Wisdom, anyone? Thoughts? Experiences?
Post Office Photo Op
Trevor is starting his second week of night shifts (following two weeks of training during normal business hours). While it is very strange to be dateless on a Saturday night, I think we are both thinking this schedule is actually going to be pretty great once we get the hang of it. In exchange for 3 or 4 nights a week of 12 hour shifts, Trevor will be home with us (and awake!) Wednesday through Saturday or Sunday each week. So far, we seem to think it’s great mostly when we’re in the middle of the not-working part of the week, but the overall first impressions are good.
Finally, we have a new bike-rider in the house! Thanks once again to the fantastic New York Method of no-training-wheels bike learning, Beatrix became our 4th bike-rider just this week, at five and a half. If you don’t have time to watch the video, the gist is this: take off the training wheels and the pedals. Let them learn to coast and balance using their feet for a while, then reattach the pedals and off they go. We have taught four kids to ride this way now, and it is so much more effective than all the time we spent with training wheels before we discovered it.
Here’s our girl. Doesn’t she still seem too little to be doing this?!
Hope you’re all enjoying the beauty and newness of the season, too!
Little man is back to being all boy and no halo! And of course, being Niko, he is still smiling. We are thankful to God for seeing him safely through yesterday’s surgery as well as through this whole process, and we are thankful to all of you who prayed us through it. Bring on Christmas!
Doesn’t Coraline give a convincing impression here that she’s taking some of her very first steps?
But take a closer look at the toes…
Do you see how firmly curled up they are? How decisively rooted to the ground?
In fact, our girl loves to be on her feet, and can stand unassisted for quite some time now, but has still yet to venture a single step without support. And as for this picture…
In the immortal words of Woody, it was merely “falling with style.” Only, perhaps, without the style.
She will be 14 months old this week and could really take the plunge any day now, so, by our family’s standards, she’s right on track. Plus, you know, she’s super cute, so we’ll keep her, even if she’s not exactly a motor skills prodigy.
Meanwhile, the boy…
…lost his very first tooth today!
I was so thankful when Niko came home 10 months ago that he still had all his baby teeth (Romilly, his twin but for three weeks, had already lost two by that time). It made me sad to think of him possibly having had that rite of passage without the proper fanfare. But I did expect them to start falling out pretty soon after, and he kept us waiting! Finally, when they extubated him after his surgery in September, one of his bottom teeth was knocked wobbly. Even then, it took its time, but today was the day, at 6 years 9 months old. And he was so delighted. We ceremoniously put it under his pillow, and we called Daddy at work to tell him the news. It was a happy day.
A week today, if all goes according to plan, will be another happy day: Niko is having his halo removed! Although he has seemed completely unbothered by wearing it, I will be very excited to have my little boy back in a more easily cuddlable form. It will be nice, too, not to have to carry straws in my purse all the time and to be able to pull shirts over his head again. It is worth noting, though, that he has not been confined exclusively to front-opening shirts for three months as we initially thought he would be. After about a week home from the hospital, in a desperate need for variety, he discovered that he can actually wriggle into most of his shirts feet first. “See, Mommy? I no needa button shirt. I so skinny!”
Yesterday was busy. We squeezed in what little school we could before heading to the pediatrician for Coraline’s 1-year-well visit.
Do you know that our former little peanut now tips the scales at 20 lbs. 3 oz!? Why, that’s practically average! (35th percentile, to be exact, same as her length.) The doctor looked at her chart and commented “Hmmm… Failure to Thrive? I think we can call that… resolved.” I don’t remember those words ever actually having been spoken to me, but they had certainly hung around in the dark shadows of my mind during those long months when we struggled to get her to gain even a couple of ounces for all of my pumping and supplementing. It seems that our tiny little miss was just holding out for the good stuff: as soon as we started giving her table food, the stuff she’d been longingly watching us eat for months, she put on 6 lbs in just three months! I bet at our next appointment I get the talk about the perils of childhood obesity (not naming any names, but it wouldn’t be the first time!)
After lunch the four big girls got to go to my sister’s soccer game with my mom (a welcome relief from a grueling schedule of appointments lately) while I took the boy and the baby to the Children’s Hospital to see the surgeon again. And this week… Niko is officially done with distraction! (That is to say, I don’t have to turn his screws anymore… he probably won’t be any better at staying focused on his handwriting.) He will still wear his halo for another two months in order for the bones to fill in and consolidate, but we don’t have to trek down to see the doctor there again for a whole month! It was a happy day all around.
We are currently about halfway through the process of forever changing the landscape of our son’s face (although Niko will wear his halo for about 3 months in total, we only actually adjust it for two weeks – the rest of the time is for the bone to strengthen so that it all stays in place.). The surgery and week of recovery in the hospital ended up (by God’s grace!) being much less of an ordeal than I had prepared myself for, and Niko is continuing to take the whole thing in his stride, but I have to say I’m finding this part of the process to be rather strange and a little unsettling.
Every morning we wake up, have breakfast, and turn Niko’s screws. Each new day I have to make a conscious decision to move my little boy’s face forward by one millimeter. And each day I feel just a little tug of “What am I doing? His face was so perfect already!”
We found a video less than a week before Niko’s surgery that shows a little girl’s journey through (basically) the same process Niko is in now. In some ways, her experience seems to have been different and more difficult, but it was still a great resource in preparing us for what lay ahead. I’ve shared it by word of mouth with a few family and friends, but I thought I’d share it here, too, just by way of clarifying just what this surgery was/is all about for Niko.
I trust our surgeon completely, and I know this surgery will do so many good things for Niko’s health (protection for his eyes, more room for breathing in his nasal cavity, a more efficient bite), but then there’s the other part. The part where we are changing our little boy’s face and making him look just a bit more like other kids. That face that we fell in love with on the waiting children page two years ago. The face that said, “Pick me, I’m your son!” We’re changing it. Forever. And although I am so thrilled for him that this may spare him some of the cruelties of this world, I am also sadder than I thought I’d be to say goodbye to that face.
The Photo That Started It All: Niko age 4, 2010
Thankfully, his emerging new face happens to be totally adorable too, which helps a lot, and it’s also entirely still Niko.
Sweet Boy Today: Halfway through Distraction Process
I am writing this blog post from my TV. (Will the wonders of modern technology never cease?) Unfortunately that means I can’t include any photos right now, but I know how many of you have prayed for our sweet little man this week (Thank you! We have really felt them!), and I wanted to let you all know how he’s doing.
Monday’s surgery went very smoothly. The surgeon was thrilled. Niko’s recovery has also gone really well. Today was day 4 and the only pain medication he had today was Tylenol. Our boy is a trouper!
He has taken everything in his stride, and his biggest complaints so far have been about his catheter (which ended up getting removed at 2 AM on night two or else neither of us would have gotten any sleep!), and his nose packing (he had like a foot of gauze up each nostril – who can blame him for finding that a little irritating?). His halo, though, the cumbersome bit of metal that he has to have screwed into his head until Christmas or so, he seems to treat with a curious sort of respect. He has not complained about it at all, and only occasionally reaches up to ever so gingerly investigate it with his fingers. Of course there is still plenty of time for him to decide that he hates it, but so far, so good.
We did have a little setback today: the CT scans have shown that the pins of his halo distractor are not staying put quite as well as the doctor would like. Tomorrow, he will have another minor surgery to reinforce them, but he should be able to stay on his road to recovery, since this is a much less traumatic procedure than the one he had on Monday.
There is so much more I would like to share about God’s grace on us this week, but I am home with the girls for one night only to try to get a good night’s sleep, so sleep I must!
Niko’s first round of specialists went really well today. In 4-6 weeks we will get the results of genetic testing that will tell us for sure whether he has Apert Syndrome or Pfeiffer Syndrome. It was satisfying just to know that he really is a bit of a mystery, even to some of the country’s leading genetics and craniofacial experts. My money’s on Apert, just for the record.
The craniofacial doctor (I can’t make myself call him a plastic surgeon, though he is) and his staff were really wonderful. We will be getting to know them well over the months and years to come, especially since Niko’s midface surgery is scheduled for September.
Over the next month or two he will see four more specialists at CHOP as well as have a CT scan and a sleep study. We’re going to be busy for a while.
Little Man was a brave wee soul about his bloodwork (two owwies!). He is simultaeously terrified and fascinated by it. He cannot take his eyes off the whole process, unlike his mommy who will always look anywhere in the room except at the needle or risk fainting and rather embarrassing herself in the process.
Today was definitely a wake-up call from three months of feeling like despite having completed a “special needs” adoption we had somehow ended up with a completely normal little boy, but we did know this was coming, and we feel peaceful about walking through it.
I don’t usually post about shocking, disturbing things here. It’s kind of not my style. But sometimes a thing so shocking and disturbing is going on right under people’s noses that you just have to say something. You’re going to want to grab some tissues. I’ll wait.
Six years ago, a new mother thousands of miles away from here met her beautiful baby boy for the first time. Instead of basking in the overwhelming joy and celebration that should have accompanied his arrival, she was given the worst news of her life. Her baby was born “different”. He would never be “normal”, never get a job, never get married, never have any “quality of life”. He would be a terrible burden to her and her family. Her best option would be to turn him over to the government, let the professionals handle it, and move on with her life. My heart breaks for her every time I think of the lies she was told, the lies thousands upon thousands of new mothers are told around the world every day about their babies who are born with special needs. Look what she missed out on:
Niko at 18 months.
Adopting Niko has been such a heart journey for me. When we first began talking about adopting, special needs were not even on our radar. I can only say that God led us to the option of waiting children with special needs through an incredible and unlikely series of events, one of which was discovering Niko’s picture on Reece’s Rainbow, an online adoption ministry for children with Down Syndrome and other special needs.
Niko doesn’t have Down Syndrome, but, as we discovered through researching and following the blogs of other adoptive families, his fate in an Eastern European country would likely have been the same as theirs had he not been adopted: a lifetime in a mental institution, shut away from a world that fears and scorns those with any noticeable difference from the “norm”. His days were numbered at the comfortable baby house we adopted him out of, and there was no place in his society for him to go but to be locked away out of sight.
All over Eastern Europe, children with Down Syndrome and other special needs (blindness, walking difficulties, facial differences) are routinely transferred to adult mental institutions when they age out of their baby orphanages at 4 to 7 years old. Many die in the first year. Those who survive face a lonely, heartbreaking existence.
It is tempting to look in judgment on those around the world who do not have such a politically correct view of those with special needs as we enlightened Americans do, but take a closer look. When was the last time you saw a baby or young child with Down Syndrome? Compared to Niko’s condition, which affects only (approximately) 1 in 65,000 births, Down syndrome is a fairly common diagnosis, affecting around 1 in 700 pregnancies… where are all of these precious little ones?
The staggering, jaw-dropping, punch-you-in-the-stomach truth is that in the “civilized” western world, with the technology of pre-natal testing at our fingertips, around 92 out of every 100 babies diagnosed with Down Syndrome before birth are aborted. Ninety-two percent.
Right here in our own comfortable, picket-fenced backyard, expectant mothers are lied to. I don’t mean that a doctor or an ultrasound tech lies to them. I mean that our entire culture tells them that they are doing their precious, created-in-God’s-image child a favor by sparing them from the “poor quality of life” they would experience by living with Down Syndrome.
The truth is that 99% of people with Down Syndrome report being happy with their lives. If you’ve ever met one, you most likely didn’t need me to tell you this. Here is the one God put in our lives back when we lived in Scotland. If only I had known then what I know now, I would have made an effort to get to know him better. Even knowing him a little bit was a tremendous blessing.
So, today, as you may have guessed, is World Down Syndrome Day. That means that around the world those who know the truth about these amazing and precious people are spreading the word. In Bulgaria, for example, an American mom of four adopted blessings with Down Syndrome (as well as three other sweet kiddos) is holding meetings to help change perceptions and encourage parents of children with Down Syndrome who have chosen to raise their children despite overwhelming obstacles rather than give them up.
Here at home, the battle rages on to turn the tide so that children diagnosed with Down Syndrome before birth get the chance to live and be an immeasureable blessing in disguise to their families.
If you have four minutes to spare (come on, you do!), I’d encourage you to watch this beautiful video made in honor of this special day. It will change you.
After you’ve been changed, if you’re feeling like you’d really love to do something to help *right now*, I’d encourage you to hop on over to a tremendous giveaway going on at Micah Six Eight and donate to help many orphans with Down Syndrome and other special needs as well adoptive families. There are awesome prizes, in case you need a little extra nudge. Click here to read more about the giveaway and enter.
If you’ve read this far, thank you for indulging my soap box moment! This is an issue that has become very close to my heart through the process of our adoption, and I believe it is one that is close to God’s heart as well. Please pray today for the efforts being made around the world on behalf of so many voiceless little ones.