Wednesday, December 16, 2015

Deja vu

FB Memories has been messing we me again. Yesterday, the day after Ren's surgery, this memory popped up:

Sky's three wishes from fall 2014.
Apparently, a year ago, Sky was wishing his dad's spine would get better and that our overall stress level would decline (I wrote a post about this here). As I was wandering the halls of the hospital two days ago (a.k.a. a day before this FB memory appeared), waiting for Ren to get through surgery and thinking about just about everything under the sun, I came across a wall of artwork drawn by children from a local middle school. Their artwork, created to cheer up the poor souls in the hospital, made me think about our kids and about how they will never be able to think about a hospital without remembering the many surgeries Ren has had.

Looking at those pictures, I realized that most of the young artists had probably never had a family member in the hospital or never had to have their parents taken away from them for long periods of time due to injury, illness, or major surgery. They have probably never been told to cut it out because Daddy can't get out of bed today and Mommy can't handle everything unless they start pulling their own load. They probably haven't cried about the days of old when Daddy could carry them and let them ride on his back playing horsey.

Generally, I preach acceptance and joy to the kids. I tell them that we are lucky because we have each other and that we have hope because of our faith. I help them focus on the positive while acknowledging that some of this really stinks! But, when I looked at those works of art, it hit me that these spine surgeries and Ren's increasing lack of mobility will most likely be a defining, if not THE defining, event in their lives.

As parents, we all know that there are hurts from which we can't fully shield our kids. As a parent with a spouse experiencing significant health issues, I've learned that there is also no way to make life completely "normal" for our three young ones. Multiple times in the last four years, I've left them with sitters, friends, or relatives so that I can go keep vigil while their father has surgery. We've dragged them to appointments with a multitude of specialists as we try to get to the bottom of Ren's issues. We even left them with their grandparents for 10 days, so we could make the trek to Mayo Clinic. All of these times, we've tried to be upbeat and to keep their routines as routine as possible. But, they've had to learn some really hard lessons really young: Moms and dads aren't invincible. Sometimes it seems like God isn't hearing our prayers. Life isn't fair.

On Monday night, when I got home after 12 hours in the hospital with Ren, I found the kids asleep and this Pink P creation on my desk:

"Dear mom how is daddy?"
Pink worries about her dad. She wants to know he's okay. When he's gone, she mourns his absence, even when I explain it will be just for a few days. All of my kids feel the stress of these surgeries and the subsequent imperfect recoveries. And, despite their amazing resilience, I know they have all lost a little something along the way.

I've learned not to pray that my kids won't experience pain or hardship. Instead, I hope for them a life full of joy no matter what the situation. I hope for them people who love and accept them. I hope for them the words to express how they're feeling and a way through the hard times that perfectly suits each of them. And, I hope for them to discover new paths in their relationships with Ren, so that no matter what happens with the spine, these momentary sorrows will be overshadowed by so many more years of joy and happiness.

Tuesday, December 15, 2015

The Imperfect Art of Waiting

Ren's fifth spine surgery is in the books! This last one, like the lumbar surgeries before it, was loooooong.

If there is something as needlessly exhausting as sitting in a hospital waiting room, I don't know what it is. The chairs are never comfortable, and the room is usually crowded with strangers who come, wait, and then leave sooner than I do. Plus, invariably, Ren's surgeries go an hour or more longer than anticipated by the surgeon, and he takes FOREVER in recovery. The waiting can seem eternal.

The cruel (but helpful) monitor that helped me track Ren's progress.
I've tried a number of strategies for making the waiting seem more finite and less tedious. I've charged up all my batteries and saved a line-up of films and programs to watch on my iPad. I've had friends come sit with me. I've left for a couple of hours to shop or eat a meal. This go around, I added Christmas card completion and the publishing of copious posts to social media (sorry, everyone!) to my distraction tool kit. Regular text updates to family and friends, including a spirited exchange about whether one of us needed this super large Christmas tree ornament from HomeGoods, also kept me busier than previous surgeries.

We decided that neither of us needed this monstrosity.
All of these strategies work to a point. I mean, no matter what I am doing, I am plagued by a nagging sense that things are definitely not right. And, if I am having anything resembling a pleasant experience, I feel guilty to boot. Besides, none of my time-killing efforts ever seem to do me any good past the five-hour mark.

The guilt-inducing Thai curry that I had for lunch while Ren was in surgery.
Watching TV for five hours is exhausting, and since the hospital waiting room is an awkward social space, I run out of things to talk about with friends and family who occasionally come to sit with me. After a complicated surgery, it's important to be there when the surgeon comes out at the end to give me the low-down, so even if I go out, I can never leave the hospital for longer than a couple of hours.

Yesterday, Ren's surgery started at 11:30 a.m., so I got back to the hospital at 2:30 pm. The doctor had told me he thought the surgery would last for four hours, and 2:30 was at the 3 hour mark. At that point, I hadn't watched any movies or addressed any Christmas card envelopes, so I thought I was on good pace to keep myself properly occupied for the entire surgery time. But, then the nurse liaison found me at 3:15 and told me there was at least another hour to go (putting total surgery time at as long as 5 hours). No amount of planning helps me get through the anxiety that sets in when I realize the surgery is going to go an hour longer than the surgeon's longest estimate. So, I did what anyone in my situation would do. I started watching old Dateline murder mystery episodes.

Waiting with bad TV.
Ren came out of surgery at 4:10, so technically the surgery lasted ONLY 40 minutes longer than the doctor expected. When I met with the surgeon, he was amazed by how much nerve impingement and damage there was in Ren's spine but also optimistic that the surgery should provide some relief. He also told me that I'd need to wait another two hours until Ren was out of recovery and that he anticipates Ren will need a full spine fusion in the next 5 to 10 years. So you know, the good, the bad, the ugly.

Two and a half hours later, or 9 hours after we parted in pre-op, I saw Ren again in his hospital room. The re-meeting is always bittersweet. Seeing him covered in gauze and hooked up to drains and wires, I'm always struck but just how much struggle lies ahead. He, on the other hand, is loopy on meds overly effusive. Plus, his English achieves a whole new level of proficiency. Of course, he never remembers anything we talk about when the anesthetic is wearing off. Ever.

Did I do anything helpful during my long day of waiting? No. Did my presence wandering the halls of the hospital, watching bad TV in the waiting room, and drinking weak tea in the cafeteria make any kind of difference? No. Still, I was there, and I sent him in and saw him through to the other side of yet another major surgery. Maybe next time (spine surgery #6 and major surgery #10) I'll figure out a way to feel less like I am trapped in limbo. Suggestions welcome!

Friday, December 11, 2015

Sensory Bins on Steroids

Every year about this time, you know, when the weather turns cold, and I start to contemplate being trapped in the house for hours with stir crazy kids in the midst of an eternal winter break, I write a post about sensory bins (click here for the 2014 one or here for the 2013 one). You might call my sensory bin obsession a compulsion (albeit, a compulsion brought about by the real fear that the cooped-up kids might finally get the best of me). It's not like we don't use the bins in the summer months. We still do, but, for a number of reasons, they get a lot more play once the weather turns cold and the leaves fall off the trees. In the crush that is the birthday-Thanksgiving-birthday-semester end-Christmas combo, I do a lot of my shopping online. This is especially true when Ren is down and out with his back. This year, two online impulse purchases (they were SO cheap, I couldn't resist) have added hours of new life to our old sensory bins.  First, I found a set of 16 very cheap-looking Star Wars figurines on sale for 50% off, and I decided to throw the set into my cart at the last minute thinking they would be just enough to reinvigorate the Star Wars bin.

I had no idea how well this would work. Since I put the new figurines into the old bin, Stow has played with them practically nonstop. No, really. Take a look:

Old Star Wars sensory bin with new Star Wars characters added.
Day 1, 7:30 pm
Day 2, 6:30 am
Day 2, 8:40 am
Day 2, 1 pm
Day 2, 7 pm
Day 3, 7:15 am
Day 3, 3 pm
Day 3, 8 pm
I could keep going, but I think you get the point. Stow is obsessed with this thing. He asks for the bin the first thing in the morning and goes back to it all day long. He even invites his siblings and Ren and I to play with him (though I still haven't figured out how to be the good guys without making him mad). 

At about the same time I bought the Star Wars guys, I also bought a "Mystery Pack" of 10 Schleich figurines, again for more than half off. With three kids of varied interests, I figured there would be at 3 or 4 things in the pack that at least one of them would like. When the package arrived, I found this inside:
The biggest most unnecessary fairy tree ever.

Needless to say, I was kind of miffed. Where were my 10 unique figurines, and what in the world was I going to do with such an excessively large tree?!?!  I tucked it into my closet and tripped over it for several days as I waited for an opportunity to pass it on to someone who might actually like and use it. Halfway through day 2 of Stow's Star Wars bin obsession, however, I decided to give the tree and the old fairy sensory bin to Pink, just to see what would happen. 

Big-a** tree + fairy box = hours of fun.

Day 2

It turns out the fairy trees are pretty cool, especially if you already have a box full of fairy stuff. Pink is not as obsessed as Stow is, but she's been engaged with the sensory bin on and off for two days now, too. My favorite times have been when the Star Wars guys and the fairy guys get together to fight the forces of evil from the fairy tree.  

The moral of this story is a universal one, I think:
When making impulse buys, sometimes you will get an unexpected fairy tree that takes up half your living room. That's okay, though, because it is worth it just for a few hours of uninterrupted, cooperative play. 
No? Not universal enough? Okay, how about this one?:
Impulse buys are stupid even if they sometimes work out in the end. 
You know what? Forget it. You just take from my story whatever you will. I have a feeling that's what you've been doing all along anyway!

Wednesday, December 9, 2015

'Tis the Season...

Our advent wreath
For the last couple of weeks, the kids and I have been observing advent. We've talked about how it is a time of waiting but also one in which we celebrate the "coming" or "arrival" of Jesus. Each candle we light reminds us of the hope, peace, joy, and love that we celebrate at Christmas time. Generally, the kids get all squirmy when we're having these talks and just want me to hurry up to the part where one of them gets to light a candle and we all say a prayer before they scatter in different directions, but I am glad we've started this new tradition. The weekly lighting of the candles been a nice way to slow down and get them to focus on what Christmas means.

Besides the wreath, we've also been keeping up with our usual traditions: each day, the kids jockey over whose turn it is to do the advent calendar. And, all three of them were excited to hang their 2015 ornaments as the first ones on our tree again this year.

Even our host student from Japan got in on the act.
Our playlists are set permanently to Christmas music. The gifts are bought (but not wrapped), the holiday cards have been ordered (but not sent), and I've got the teachers' gifts sorted out! We've even had our first (and hopefully last) snow of the season.

On our way to 16 inches. Fortunately, it all melted within a week.
In other words, things are going about as we'd expect them to in the weeks leading up to Christmas.

There's one major difference, though. This advent season, we're doing another kind of waiting. We're waiting for the imminent arrival of lumbar fusion number two. Ironically, we find ourselves preparing for it in the same way we might prepare for the arrival of a new baby. We're cramming in a lot of last-minute doctors' appointments. We're making sure there are people to help take care of the kids and that we have enough food. We're negotiating the details of how we will handle the shift in the household division of labor. And, we are waiting with not a little apprehension to see just what life will be like after this particular arrival.

The message of advent--of the anxious anticipation for this baby who would bring hope, peace, joy, and love--has taken on a very different meaning for me this year. Our lives will surely be different once Ren has the surgery, whether it be for a few months or forever. Being able to meditate on the meaning of this advent season has helped me to keep my focus on the positives--a co-worker who set up a Meal Train account that was filled almost immediately; offers of help from people I never even thought to ask; kids who have suddenly become unnaturally cooperative; two raffle wins in the same day (for gift certificates to multiple local restaurants)--instead of dwelling on all the negative. All I know for sure is that a very big and very long surgery will take place five days from now. As for the rest of it, I'm going to focus on the hope, peace, joy and love of advent and let everything else work itself out.

Friday, December 4, 2015

In Which an Old Post Reminds Me of Some Eternal Truths

Today Facebook took me back to this day in history in 2009. That was the day when Sky's private preschool sent home a note telling us that he couldn't go on the school field trip to choose a Christmas tree unless I, his mother, accompanied him. The school, which was closely tied to the college where I was teaching, knew that I worked full time. They also knew that Sky's dad was our stay-at-home parent. Surely, no one was stupid enough to put something so sexist and potentially racist in writing, I thought. This was the question I asked my FB friends in the post that popped up on my wall today.

To try to understand what the note could possibly mean, I scheduled an appointment to talk with the head of the school. Surprisingly, she actually WAS being both sexist and racist. She didn't realize it, of course. But when she said, "Sky might just respond better to you on the trip than he does to his dad" and "Sometimes we feel like we can't communicate as clearly with Ren as we can with you," I tried to imagine a situation in which she would send a note to a family telling them their child couldn't go unless his dad would take the day off accompany him or a situation in which she would tell any other family in the school that communication was difficult. I couldn't imagine it, though. We were being triply marginalized--for having a difficult child, for being a non-stay-at-home-mom family, and for (some of us) not speaking English as well as a native speaker--and it broke my heart.

Sky was my first kid, so it took me a little longer than it should have to realize that private school was not the place for him. I really wanted it to work and felt more upset about taking him out of the chaotic, child-driven, project-oriented school than I ever should have. This was pre-diagnosis, though, so I try to cut myself some slack. Learning how to parent any child takes time, and it takes just a little longer if your kid is on the autism spectrum.

Facebook's time hop reminded me to tell you this: It will be okay. Go with your gut. If a place doesn't seem right for your child, it probably isn't, no matter how good it looks on paper. The road is long, and it can seem daunting at times; just take things one step at a time, and eventually you'll find yourself some place pretty darn good.

Today, six years later, Sky is thriving in a public school a few miles from our house. His teachers and IEP support team are Ah-Mazing. Not only is he mainstreamed in honors classes, but he loves going to school. Most importantly, though, he has friends and a true sense that his quirkiness is A-OK because there are people around (usually hiding so far back into the wings that he can't even see them) who understand where he's coming from and accept him just as he is.