rambling reflections on the eve of Zoe's first birthday

I want tomorrow's post to be encouraging and happy and celebratory, because it is, after all, our baby girl's first birthday. We're celebrating it as much - if not more - than we did for our oldest two.

It's not the same, though. To be able to write the post I want for tomorrow, though, I need to get all the differences off my chest first.

When Jocelyn turned one, I thought of her due date one year before. She arrived promptly at 40 weeks, though she made me labor for 19 hours that day before I got to meet her. She burst into the scene, yelling at all of us and demanding attention. (In many ways, not much has changed, huh?) She had trouble gaining weight in the beginning, but we got the hang of nursing and she thrived after that. The learning curve was steep, but we cherished those early days with our newborn firstborn.

When Robbie turned one, I thought of our trip to the Marbles kids' museum on a Sunday afternoon a few weeks before his due date. As they closed and we headed toward the exit, contractions started. We walked around downtown with Jocelyn, wanting to let things progress a bit more before we headed to the hospital, but  contractions were coming faster and furiouser (nope, that's not a word. I don't care.) than they had with Jocelyn, so we drove home. As we waited for the Plan C friends to come watch our girl (given that Plan A was in Charlotte and Plan B was at a church program), my water broke. We made it to the hospital with just enough time for the epidural (oh, sweet modern medicine, I love you.), and he literally spiraled out with just one push. He ate and grew like a champ from day one, and his big sister doted on him.

Tomorrow Zoe turns one. A year ago, I was heading to my first post-op physical therapy appointment following my knee surgery. That day I found out that my knee was infected, and we started antibiotics. My blogging that month was sporadic, understandably so due to the surgery, but I posted on both blogs the day Zoe was born: on our family blog, sharing about the infection and including a picture of the chocolate chess pie my Bible study leader brought us with dinner, and on our special needs ministry blog, sharing a hodgepodge of links.

I had no idea that a baby girl who would be our daughter was being born on the other side of the planet. I didn't know that our youngest child was making an early entrance to the world at a teeny 2 pounds and 15 ounces and a petite 14 inches long. While I try to imagine her small frame, I cherish the details we have: that she breathed well on her own, that she maintained her body temperature without assistance, and that the only issue needing immediate attention at birth was jaundice. In other words, our Zoe has been a tiny fighter from the beginning, not letting pesky details - like a premature birth or a heart defect or a brain that wasn't completely formed - get in her way.

As we share these differences in birth stories with our children, we'll be able to tell precious Zoe that she was labored over twice: once by one mother in a birthing center in Taitung and once by her Mommy and Daddy through an altogether different labor of paperwork and court processes.

Oh, how we love our almost one-year-old girl! Zoe bug, we cannot wait to celebrate your first year of life tomorrow.

our funny premarital counseling questionnaire

When Lee and I were engaged, our pastor had each of us fill out a lengthy questionnaire, separate from each other. Then we turned them into the pastor, and he reviewed them to look for matches and mismatches that needed to be addressed in premarital counseling.

Some questions addressed the things you'd expect:
...the number of children we each wanted (we both said 2 or 3 total, and each indicated that at least one would probably be adopted... my, how plans change!),
...the place we planned to live (here in good ol' NC),
...and our plan for managing finances (on which we agreed that Lee focuses on the daily stuff - bills, etc. - and I do the longer term stuff - goal-setting and taxes and so on, which is how it's been).

Others were a bit odd. Like, "If you could be anything in the world, what would you be?"

Lee's response? 

"A structural engineer in Japan."

Because he is already a structural engineer, and he loves his job, and the buildings and bridges are pretty amazing in Japan.

My response? 

"A dog."

Because I like to sleep and play and hang out with loved ones.

Yeah, our pastor didn't know what to do with that one.

Other than laugh with us. (Or was that "at us"?)

yes, we had a jousting ring (and rock climbing wall and moonjump and obstacle course and pool table and bungee run and dunk tank and snowcone machine) at our wedding reception. doesn't everyone?

the past week & a half of blog silence has been brought to you

by tough things like:

migraines and
dizzy spells

probably caused by anemia and
my thyroid being out of whack once again

a doctor's visit and bloodwork, all for me
(finally. I was stubborn and should have gone a couple months ago, in which case the previous items would have been addressed before they got to the point that they got... because, you know, it's not like we've had anything else going on in our lives...)

and by wonderful things like:

starting Zoe's physical and occupational therapy

cuddling with my son

watching my big girl get a writing award on her school's TV morning show

serving at our church's respite night outreach, which was marvelous

setting up another 10 linear feet of bookshelves

celebrating the life of a beautiful friend of mine who turns 25 tomorrow 
(without whom, by the way, respite night and other aspects of our church's special needs ministry would be impossible... and without whom I would have lost my sanity approximately 1.3 million times)

Happy quarter of a century, Mouse!

Not that I am speaking of being in need, 

for I have learned in whatever situation I am to be content. 

I know how to be brought low, 

and I know how to abound. 

In any and every circumstance, 

I have learned the secret of facing plenty and hunger, 

abundance and need. 

I can do all things through him who strengthens me.

{Philippians 4:11-13}

Welcome to therapy land. (aka "why does Zoe need therapies?")

Nope, not therapy for me, though I'd be up for some Jubala Village Coffee therapy with any of you if you're interested. (Any takers?)

Zoe is beginning physical therapy (for gross motor skills) and occupational therapy (for fine motor skills). Or, in hipster special needs momma lingo, PT and OT.

I usually focus on what she can do, but some people have asked, "Well, if she's doing so well, what's the therapy for?" Well, she's 11 months, but she was born approximately 2.5 months early. That means we look at what she can and can't do in comparison to a typical eight month old. (Special needs etiquette lesson of the day: "typical" is usually the preferred term for kids without special needs.)

Right now, a typical eight month old - per the Mayo Clinic - can do a lot of things Zoe can't: roll both ways (she can, but she doesn't like to because it's laborious), sit up (not even close yet), scoot or rock or crawl (nope), use both hands well (her left hand does okay, but her right notsomuch), pick things up with a pincer grasp (nope, she's a fist girl), and so on. We'll work on those last two in OT and the others in PT. In between therapy appointments, we'll do home exercises.

In both OT and PT, we'll do lots of stretching (which we do daily with her too) because she - like many kids with cerebral palsy, Zoe's official diagnosis - has increased tone in her muscles. To use an analogy, think about the last time you had a muscle spasm in your leg in which everything got tight and you had trouble relaxing. That's kind of like what happens with Zoe, except it's not that severe and it's a constant issue. After stretching time - which she doesn't love but does tolerate - she is visibly relieved and obviously more comfortable.

An amazing trait of our sweet Zoe, though, is her tenacity. She is smart, and she gets frustrated when she can't do something that she wants, like when she wants to drop a toy to pick up another but her grasp tightens instead of loosening. She is motivated to do more, which can help a lot...

...however, this also means that she knows what she doesn't want to do. Consider tummy time for babies. You probably didn't think about it this way, but it's a physical therapy exercise we do for all kids. Some don't mind it; some hate it. But we do it anyway, because it helps.

For Zoe, some therapy activities she likes, and some she hates. We know, even if she doesn't, that they are all helpful, so we keep it up.

"What?" she says. "You're going to keep doing those exercises I don't like?"

On another somewhat related note, I find that adoptive and special needs parents alike tend to be a bit prickly. If you Google "what not to say" and "adoption" or "disability," a whole lot of hits come up: nearly a million for "adoption" and more than half a mil for "disability." While a bit of language etiquette can be helpful, it can also make people outside of the adoption and disability communities scared to say anything, out of fear of an unintended insult crossing their lips.

I'm not easily insulted, and if I ever am (or have been), I'll tell you kindly and in person (rather than passive aggressively using you as a "what not to say" example on my blog). So do you have any therapy-related questions? Or other special needs- or adoption-related ones?

(I'm not prickly, I promise, so ask away.)

a rambling post in which I'm asking for the favor of friendship

Yesterday evening a friend texted me and asked what I was doing that night. I'm not sure what fun thing she was going to suggest because I had to text back, "Resting in bed. I have some sort of bug." (In retrospect, I think something I ate didn't agree with me, but still: no night out.)

This morning, Zoe girl woke up with a fever. She has the same cold that her brother and sister last week, but I thought she was over it on Monday. She's not. The playdate I was going to have with another friend today? Cancelled. 

It's days like this that I have to fight for joy.

I can handle being benched for an evening or a playdate, but I've been down this road before, and I'm a bit scared. My body broke after Jocelyn was born, with one autoimmune disorder and then another and then crop after crop of infections as we learned that some treatments made me dangerously susceptible to opportunistic illnesses. (Those treatments and I are no longer on speaking terms, so I'm mostly healthy nowadays.)

While the autoimmune disorders aren't going anywhere, I've figured out a nice combination of dietary, lifestyle, and pharmaceutical choices that make life pretty normal. Praise God! But from not long after Jocelyn's birth in 2007 until around Robbie's first birthday in 2010, I spent three years in daily pain. Those years are a blur. It's hard to recollect much when every movement of every minute of every day hurts for more than 1,000 consecutive days. I praise God for all He taught us in those indescribably difficult years (for example, this post and this one), but my heart grieves over them sometimes. While we've found a happy place with my health stuff, I haven't figured out how to mend the friendships the painful years stole away.

That's why I'm scared. 

It's hard to be friends with someone who is sick. Friends had to put up with cancelled plans and apologies and more cancelled plans and more apologies and... well, you get the picture. I can speculate at all the reasons, but the fact is that many friends gave up. Eventually, many people stopped making plans with us, and I was too scared of having to cancel again that I stopped too. Our friendship was too hard, for them and for me.

No one but Lee and God saw my lonely tears in those years.

As promised to Israel in the book of Joel, God has fulfilled the promise to "restore to you the years that the swarming locust has eaten." We have friends, some who rode out those tough years with us, some who we've met since, and some who we knew then but know much better and more sweetly now. But...

It can be hard to be friends with someone who has a child with special needs. I know this from stories shared with me by parents from our church's Access Ministry. I'm starting to see a bit of that. For starters, as we get started with multiple days of therapy each week for Zoe, I know playdates are going to be hard to come by. I am too tired by evening to want to go out most of the time, but with driving Jocelyn to and from school (which I cherish) and getting therapy time in for Zoe, I don't know where friends will fit. Sundays are full of church activities, and most of my friends seem to do family activities on Saturdays.

I fear that I'm starting another season of life in which friends will be lost. 

If we are, it is 5000% worth it. (Yes, 5000%. I never was keen on the rules of math.) Zoe is worth it. Adoption is worth it. Following God's call for our lives is worth it regardless of the cost, because He loved us first and considered us - sinners, though we were - to be worth the cross.

But can I ask you a favor?

Would you try to ride through the stormy part with us? Would you be that community I admitted I needed in this post? Would you see through the second or fourth or eighth cancellation of plans and understand that I'm trying? Would you be willing to look past the smile on Sundays and wonder if that same smile is on my face during the lonely days in between? Would you get that I'm tired and might not be up to reaching out to you myself and extend sweet grace by picking up the phone or sending the email, even if I didn't reply to the last email or phone message?

Would you be my friend, even when it's not easy?

Thanks.