The Remembrance of Life

Yesterday I attended the celebration of the life of a childhood friend who passed away in November. It was lovely to hear about the ways he touched so many people. Person after person - from all facets of his life and all different stages - described him similarly. 

He was a bright star.  He was the life of the party. He loved to have a good time and loved to make people laugh. He was adventurous. He liked to push the envelope and was able to challenge authority in charming ways that mostly kept him out of trouble. He was creative and curious. He was a prolific writer and thinker. He was entrepreneurial.  And though he sought fame, he also treasured people as individuals. When he talked with you, you knew he was listening and interested. He made sure you knew you mattered. He was a good friend to many, many people. And in that way, he made a real difference.

As I listened to his sister read to us from some of their correspondence over the years, I was struck by his deep faith. And as his family members talked and shared how the group’s collective remembrance of my friend was an expression of faith (the community part of church - my words, not theirs), I was impressed with the peace they seemed to have reached. I’m not there yet. 

After death, we try to remember people for their best parts - it’s how I want to be remembered. And that’s how I remember my friend. 

But also I can’t seem to shake what came later for him in life. What I think makes his death so tragic.

My friend was 49.  He had been diagnosed with a schizoaffective bipolar disorder 2 some time in the last decade or so. Up until then, I’d been following his adventures online-  he was a balloon artist and a magician. He worked in Las Vegas as a performer. 

But his social media posts took a turn. His once light-hearted song lyrics and stories became mean. He wrote screeds against family members that seemed inconsistent with what I knew to be true. I began to worry. Not an all-consuming, up-all-night kind of worrying. But a back-of-the-mind, constant itch.

My friend became homeless in my city. Not for lack of resources or support - more by choice. Or really by inability to make good choices, I suppose. 

I would watch for him when I was out and about downtown, even though I wasn’t sure I’d recognize him if I saw him. I wondered how he was spending his holidays, if he knew how much his family missed him, and if he missed them, too.

But the intellectual side of me also knew that he had to choose the help that was available to him. He had to stay clean. He had to take medication to control the mental illness, and no one - no matter how strong their love - could do that for him. And so, instead, we waited. Or I waited.  His family continuously reached out to him. Offered him their love and more material support. I am sure they felt his absence as he missed holidays and weddings and reunions. His death makes all this effort- all their outpouring of love- seem to me like it was meaningless or maybe wasted.  And I think that’s what I’m struggling most with  because I know it wasn’t for naught, even though it didn’t bring my friend back to them.

My sadness overwhelms in some moments, when I think of all that could have been and now will never be.

I don’t feel comfort in knowing he is out of pain. I don’t feel peace because of my faith. I feel angry. I am mad that his future was robbed by the disease.  I am angry his family had to suffer at the hands of his mental illness, holding their collective breath in hope that he might recover and some former version of him might re-emerge. I don’t feel half-glass-full that he had so many bright, fun-loving years or grateful that the period of our lives that overlapped came predominantly before the difficulties his illness created. I am furious that his brain chemistry betrayed him.

I know this is my grief talking. I know my anger won’t change his last years or bring about a cure or convince some other person to seek and follow treatment. It won’t make his parents feel better about the child they lost twice, first to mental illness and then to death. But I cannot reason my way out of the sadness and the anger. Memories of his bright smile or his promise don’t offer me peace because they highlight what’s gone. I’m mad at him for not doing the work to get better. It’s so inconsistent with the kind of person he was- the loving, compassionate parts of him I knew. I’m furious at the randomness of it. The lack of logic to it.

One of my friends suggested that some of what I’m grieving is the loss of hope, the finality of it all.  Because as long as he was alive, there was hope he could recover and come through the other side. Another friend suggested the grief is recognizing that because of our shared history, some of what I’m grieving is a loss of my own history. I think they’re both probably right.

I know, intellectually, that time will help heel my heart. I am not in this alone. I have friends and my own family who knew him, and we have grieved some together.  But the grief feels lonely all the same. 

Belonging

 Here is something I love about my kid’s high school. Every student is given a “Red Sea” t-shirt at registration. Early on, new students are told “On Fridays we wear red!” And by and large, they do. They all have something red because every single kid gets a shirt. 

These pictures are from a couple of the school’s Instagram accounts. One is of the seniors waiting to welcome the new students this morning. Wearing their link crew shirts. A uniform of sorts. (My kid is buried in there somewhere.)

The other is of the student body. You’ll see some other colors in there, but there’s a lot of red. 

I love this. 

Giving students shirts to wear on the first day (and every week thereafter) takes away a tiny bit of anxiety about what to wear. It makes sure everyone fits in, no matter their economic situation. It helps students feel they belong, right from the start.

It's Been a While - Savoring the "Last Firsts"

 I have not posted in a while.  A long while.

Some of it is the busy-ness of days.

Some of it is that blogging seems sooo 2000s.

But most of it is that as my kids have aged and my day-to-day life has grown increasingly intertwined with and dictated by their lives, I've wanted to respect some semblance of privacy.  

But when my middle kid headed out the door to her first grade of her senior year of high school this year, I looked back at her first day of kindergarten, and I was so glad I blogged.  The seniors at her school do "kid backpacks" as a nod to their younger days.  We remembered that she had a Hello Kitty backpack as a kid.  And a Dora one.  So she went looking for a large-sized one of those.  Even though the colors and themes are no longer of interest to her.  She landed on Hello Kitty and tried for a mostly black one. But ended up with a pink one instead.  But when I looked back at her kindergarten picture, I discovered that she didn't actually use a character backpack at all! (Must have been preschool.)

Anyway, here she is.  Off to her "last first day." 

In fact, today marks the beginning of a series of "lasts."  It's her "last first day."  It means less to her than to me, as we start this march toward post-high school-adultish life.  It will feel slow sometimes, I know.  maybe even painfully so.  But I know I will look back and wonder how it blew by so quickly.  So I'm going to try and saver every "last" this school year.  Hopefully without smothering.

Breakfast

When I was growing up, I learned breakfast was the most important meal of the day. I mostly skipped it because my high school day started at 6:30, and I basically rolled out of bed and dashed out the door to arrive on time. In college, I was smart enough to mostly avoid early classes, so I wasn’t hungry when I woke up. When I was teaching, I forced myself to eat breakfast during the morning nutrition break so I wasn’t so hungry by lunch that I’d overeat. But on the whole, I’m still pretty hit-or-miss when I comes to breakfast.

A couple years ago, a mom in Tate’s grade kind of mommy-guilted me about his lunches. I was sending him with standard kid-lunch food. You know, sandwiches, fruit, chips. She told me she noticed how much he admired her kids’ lunches. She sent them with taqueria and other “hot foods.”  I thought it was a little outrageous. But I started sending him with taquitos.

Then last spring, he had the cleft surgery and I was sending him first with thermoses of liquid for snack and lunch. When he graduated to soft foods, bought a normal food thermos and filled it with rice or pasta for him. I don’t know why I didn’t think of that sooner. It’s continued ever since. Some days he still eats sandwiches. But he also takes hot food. (He also has access to hot lunch offered by his school, but he refuses to eat cafeteria food.)

All this to say Tate is a bit spoiled when it comes to his food. At least I think so. My older kids don’t want thermoses of food, but I think they secretly roll their eyes at how kind-of high maintenance this seems.

I’m not spending the same amount of time in the mornings making Tate lunch anymore. So now he gets real breakfasts. Like this:

And because I know it matters to Tate, who also announce back in August that he no longer wanted to eat mammals, those are turkey sausages.

Sheltering at Home

A friend’s infant has a diaper rash, and I remembered that I had an incredible cream recipe for it from when Marcie was an infant. So I looked up the post. And that led me back down memory lane, reading some of my posts from a decade(!) and more ago.

I’m so glad I blogged when the kids were young. Those small, everyday occurrences are so easy to forget. Especially if you are the kind of person who tends to focus on big picture emotions. And as the kids have gotten older, of course I’ve been reticent to post because it just feels so much more intrusive to do so.

But this year for lent I decided I’d try to journal every day. My goal was to find one inspirational quote and to write down one thing I’m grateful for each day. And with one exception. (I fell asleep!), I’ve kept up so far. Little did I know my journaling would coincide with a pandemic, which has informed and flavored my attitude and experiences.

I’ve really enjoyed others’ humor about the situation. I’ve read tweets mostly - But in the end, it’s a way to connect. Or at least potentially connect. and I think that craving is pretty universal.

Today I was touched by this video made by Berklee students and posted on NPR:

https://youtu.be/QagzdvzzHBQ


Enjoy!

Post Op Appointment

One week after surgery, we were scheduled for a post-op follow up with a physician assistant at the craniofacial clinic.  Tate was cranky. I think he was tired. And maybe a little mad he finally lost at a board game against my mom. (Though he confided in me that he did pretty well in poker against my dad. - Don’t worry, there was no betting!)

She removed the dressing on his hip and said it looked good. He wanted to know why it was lumpy, and she explained that skin is sewn that way because it collapses over time.

After the stitches fall out in their own, we will begin massaging the area around the scar for scar tissue reduction and to improve plasticity.

She looked in his mouth and said we need to do a better job cleaning food particles away from the stitches and the area of the graft. Which is a little crazy because he is on a full liquid diet. And he eats/drinks with a mouth guard in. So the particle issue should be minimal. Anyway, she suggested more zealous swishing and a water pick.

But he is cleared for school, which he is looking forward to.

Happy Easter!

Tate's recovery is going well.

He's been mostly off pain medication completely, with an occasional Advil.  (We finally switched to pill form this morning at his request.) We had anticipated hip pain today, when the injection given in the hospital wore off, but he seemed pretty fine.

He's been in his own bed the past couple nights, and he's been sleeping in. I had to wake him and the others up for church - but it was a good excuse for getting dressed up.

I'm still trying to figure out how to get some greens into him.  Hoping that probiotics and some spinach in his smoothies will help.  He's also figured out how to use our amazing Ninja blender to make some of his own milkshake concoctions.

Here's where we are at with the liquid diet:
So far, clam chowder has been the most successful food item.
He had chicken noodle soup liquefied today, but he said it was too hot.
He didn't like the liquefied macaroni and cheese.
We made some chips and clam dip with milk into a drink, and the flavor was good, but it was weird to drink it.

So we're still working on getting the right sweetness and consistency in food.
The best flavoring so far was the cheeseburger. We actually cut up his burger and bun and dropped it in the Ninja with some beef broth.  It was just a little warm, and it was actually quite good.

On deck this week we have more clam chowder, more milkshakes, more fruit smoothies, and we may also try spaghetti and even a meatball sub.

He's out of school until after the post-op visit. I know he wants to get back, but we have to make sure he's healthy enough and healed enough to navigate elementary school with a weakened hip and mouth.

Home at Last!

Finally at home, it was time to try some "real" food.  We started with a fruit smoothie, that wasn't very sweet. But he seemed to like it fine.

One of Tate's friends stopped  by to give him a colorful stuffed bunny and visit. Tate told me it was fine. But then he fell asleep and was super grouchy when she got here.  I felt badly about it. But she and her mom were super understanding.

In terms of medication, we were given the antibiotic, motrin, tylenol, and hydrocodone. I told the pharmacist I was hoping not to expose him to the narcotic, and she said if we could avoid it, we should.  Tate was in a lot of pain right after surgery, though, so I was a little worried about what would happen when we got home.  I didn't need to be - we gave him tylenol and motrin, alternating, for the next 24 hours. His pain level never rose above a 2 with those medications, so that was good.

The first night home, we let Tate sleep in our bed to provide him with some comfort.  I slipped out early for work on Friday morning, and Jason stayed home to hold down the fort.

Discharged!

Two of Tate's surgeons visited us bright and early at 7:00am on Thursday to check on Tate.  I started to grumble about the lack of sleep in the hospital, and then I realized these are probably two of the worst people to complain to - one a resident and the other a fellow!

They said Tate looked good and if he could hold down non-clear solids, they would release him for discharge after lunch.  The nurse would report back to them.  They showed us how to remove the mouth guard, which is basically a plastic retainer that covers the entire roof of the mouth. I think of this as a "no no" for the mouth so his tongue doesn't play with the stitches. They showed us how to use the mouthwash rinse, which Tate hates because of the inevitable spit follow-up.  And then they left us to our own devices.

Tate still wasn't 100%. He asked the nurse to please remove his IV (this was the singular thing he complained about most).  I don't blame him. I think those suckers hurt in your hand. But they were giving him anti-inflammatory medication and pain killers and antibiotics through the IV, so removing it before discharge was pretty much a non-starter.

I managed to get Tate up and walking a little.  We made it to the play room for a while, where we found a couple of eager volunteers, who played a game of Sorry with us.

That mostly tuckered out Tate, so we headed back to our space for some rest. But then, along came Polly, a dog visitor!  At check-in they gave the option of having a visit from a dog if one happened to be volunteering, and Tate happily agreed.

Polly was a definite bright spot.  She showed up in bunny ears and even convinced Tate to smile a little.

Tate and I also watched some Netflix.  One of his favorites is the movie Candy Jar.  He likes how fast the debaters talk.  The wifi kept kicking us off every 15 minutes, but once we figured that out, we were less irritated by it.

Once Tate had a couple of shakes in him, our nurse made the discharge request.  Tate napped.  We didn't really account for the location of the hip incision high on the hip, and Tate's clothing waistband sits at that spot, so they let him wear their hospital pants, which had a loose gathering.

Finally, the medication was ready.  No one every asked us if Tate uses chewable medication or he swallows pills, and we didn't think to offer the information. So when I got to the pharmacy, everything was in liquid form.  Tate hates the taste of liquid medicines, but I didn't want to mess around with the recommendations from the doctors.  So I took the supplies and left to trek to my car in the garage, where I waited in a long line to exit.  Finally, I was able to leave my car standing and the nurse helped me wheelchair Tate right to the curb where the car was waiting.

He was pretty tired, but he stayed awake on the drive home.

Hospital Stay

Hospitals are not my favorite. That said, the nurses at Rady Children’s have been amazing. And Tate has a good support system at home, too. His speech therapist sent him a get well package (which is super nice of her, but if you knew her, it probably wouldn’t surprise you because she’s super thoughtful like that). She knows Tate very well, and she sent him some baby Calico Critters to open. Which he did. Then promptly fell asleep.

When he woke up, he tried to smile for me and put on a brave face. His face and hip were both hurting, and he was nauseous. So they gave him some more medication to help with the pain and nausea. 

The hospital is on some pretty serious lockdown from visitors  because of cold and flu season. They allowed us to designate two “support people,” and my parents came by to visit. It was mostly a visit with me, though, because although Tate woke briefly, he slept through most of it. I was glad they came. I was really hungry and nervous about ordering from the hospital menu. They brought me a delicious Sprouts sandwich. 

Earlier in the day, Tate has been more alert. And hungry. We played Sleeping Queens while we waited for some beef broth and blue Gatorade. 

Tate is a snuggler. So he asked me to stay as close to him as possible most of the time. 

This was his first full “meal.” He didn’t really love it. But he drank all the Gatorade. 

Our room was pretty small. I had this chair bed to sleep on, which is where I started the night. But around 11, Tate asked me to get back in bed with him. I don’t know if they gave us a large bed or he and I are just petite enough to fit in a regular one, but I was glad. I was freezing in my chair, even with long sleeves, a sweatshirt, a fleece, a hospital blanket, and a soccer blanket. Tate runs warm, so sleeping with him helped warm me up. 

Hopefully we will get to go home today. After being awoken every two hours for vitals (and sometimes waking to our neighbor in the bed next to Tate), I’m exhausted! 

Recovery

We hunkered down for a three hour wait. Our nurse called about an hour after we said good-bye to Tate to tell us what time surgery began. And around 12:15, we decided to head over to the Ronald McDonald House to see what they were serving for lunch. No sooner had we signed in than we got a call from a surgical nurse saying the surgery was finished and they were ready to talk to us in the postop consult area.

We high-tailed it back to be escorted into our consult room. We wondered if everything had gone okay - why was the surgery so short? We’re they unable to do it? Was it simpler than anticipated?  Why?  (His palate repair also ended super early, also in about half the anticipated time.)

We waited about a half an hour for the surgeon. He explained that everything went well, and he was pleased. They used bone from the right Iliac crest. His tissue was very malleable with good margins, and that helps it all go more smoothly. He told us that scar tissue tends to bleed more and sometimes they have to chip away at it, and you don’t know what you will see until you are in there doing the surgery.

I think this bodes well for his recovery.

We knew we had at least an hour before Tate would awake and they’d let one of us into the recovery area, so we headed back to lunch (pastrami sandwiches and salad).  Then we returned to the waiting area and settled into he quiet waiting room.

Another hour passed. And now it was about the time we anticipated we’d be able to see Tate in the first place. Finally, our pager went off, two hours after the procedure was complete.

Hospital personnel escorted me back to the recovery room, where Tate’s eyes were fluttering awake. Only one parent is allowed at a time because of space limitations. So I got to go first. Tate told me he was hot and in some pain. The nurse offered fentanyl or Oxycodone (I probably have both those names wrong), and the first drug would kick in faster because it would be intravenous. So that’s what we opted for, and it took the pain down to a 2.

I wasn’t with him too long before he asked about Jason, so we swapped until Jason had to head home  to take Marcie to volleyball.

Here is Tate, just awake:

Getting Ready for the OR

They were pretty organized at the hospital.

We took an elevator to the acute care center.  Tate seemed pretty excited.

We got our visitor badges, with our pictures on them. Then we headed to the waiting area for our official registration paperwork. We passed the twenty or so minutes of waiting by playing mini Connect Four.

After registration was complete, we waited to get called back into the preop area.  We found a section near windows, where there was a pretty cool train display.  It reminded me of Casey's obsession with Thomas the Tank Engine.  We played a couple games of Sleeping Queens. 

Next we went into an area with lots of small-ish "rooms," which were more like alcoves with curtains to provide privacy.  There, the assistant checked Tate's pulse and oxygen levels.  Tate took this quite seriously.

 They gave Tate some flowy pants and a hospital gown top to change into.

And then it seemed like a well-spaced streammof professionals came to see us. There was a nurse who had us sign a couple forms about the specifics of the surgery. And the primary surgeon who stopped by to verify the form (and actually update it to allow for some flexibility.  He also put his initials on Tate’s face so they’d do the procedure on the correct part of his mouth. (I appreciate the caution, but it’d be really weird if they got that wrong even without the initials!)

Tate met with a child specialist who showed him pictures of the operating room and explained how the gas mask would work. She helped him pick out the scent he wanted.

We met with our own nurse, whose job it is to update us throughout the procedure. She said they are very short-staffed today and she is covering for others. I hope that means she is covering for other parent nurses and not that surgeries themselves are under-staffed. She told us what to expect in terms of communication.

Then the anesthesiologist talked with us. He listened to Tate’s chest to make sure it’s safe to do the surgery with Tate’s cold. He said Tate’s lungs sound pretty clear, and Tate said his gentle touch gave him “goodies.”  The surgical fellow stopped by - Dr. Hsieh - who we met way back in December.  And finally the nurse from the surgical team came by. We asked her about the antibiotics they would give Tate because of his allergies and because we don’t know his family history. And we asked about what anesthesia they would use.

When she left, she took our bright, energetic boy with her. And now we wait . . .

Good Morning- it’s a great day for bone graft surgery!

Tate is a character.
It was like Christmas morning. Well, not quite as bad. He slept in until almost 6:00am.

He practically pushed us out the door.

The Day Before Cleft Bone Graft Surgery

Because Tate's surgery is on a Wednesday, we didn't sign him up for camp this week.  His older siblings are off for spring break, so it didn't seem like it would be a good use of money.  Instead, each day, I leave each child a list of things to accomplish and a deadline for doing so.  For instance, today Tate's list said:

• Empty the silverware
• Clean up your bedroom
• Pack for the hospital (with a list of items)
• Read for 30 minutes and write a summary of the book you read
• Practice violin for 30 minutes

Complete these things before 4:30pm

I left work a little early because we had a busy evening planned.  I wanted to keep Tate's mind off the pending surgery.

When I got home, I noticed Tate had been busy in his room:

It's not the best lighting, but what you're looking at is his low loft bed, with a second mattress on the floor next to it.  Because they are slicing into his hip for the surgery, we were anticipating he would not be able to climb the three steps of the loft to sleep when he gets home.  We were planning to put the mattress on the floor for him, but I wasn't worried about the timing because I know we'll be in the hospital for at least one night.

Tate is a planner.  It's something I love about him. He noticed we had left Marcie's old mattress in the hallway (she got a new one last week), so he dragged it into his bedroom rearranged his doll furniture (you can see the 18" doll classroom in the corner), and then proceeded to make up the bed.  With sheets and everything.  He's sleeping on it now.

He also received a couple surprises today. First, one of my very thoughtful, former coworkers and his family sent a "get well" and "good luck" gift to Tate today - a Project Runway fashion design kit with colored pencils.  Tate has it packed to take with him to the hospital.  And he also got a care package from his Speech & Language Pathologist at his elementary school.  I won't let him open it until after the surgery, but it's a couple of baby Calico Critter packets, which he loves.  He is particularly endeared to his SLP, and this really made his day - all these wonderful people fussing over him!

Yesterday after work, Tate and I went grocery shopping. At the preop appointment, they gave us some recipes for liquid foods, but, honestly, it's a little hard for me to stomach things like liquefied spaghetti and meatballs.  So for the first few days, my plan is to stick to milkshakes and smoothies.  The food as to be SUPER liquid, meaning nothing he might need to chew. So really more juice-like than smoothie-like.  Tate picked out a bunch of fruits he thought he might enjoy in juice or smoothie style for his first few days home, along with some soups.  I told him he could pick anything he wanted for his last solid food meal.  At first, he asked for meatball subs. But once we were at the grocery store, he changed his mind.  Here's what he planned:

Breakfast dinner! Those are kodiak pancakes, thick cut bacon slices, sausage patties, and scrambled eggs.  (He's also wearing his Camp Cosmos shirt, which is the camp I mentioned in the last post - the one for kids with craniofacial differences.)

After dinner, we scurried out to a movie - and watched Shazam! It was $5 movie night at the theater, and because everyone had just eaten a big meal, no one wanted much concession food.

We did get one tub of popcorn, but only about half was eaten.  Tate and I also enjoyed our favorite drink:  Grape Fanta.  Sugary deliciousness.  

When we got home, he took a shower, and fell into bed. I snuggled with him until he fell asleep.  He told me it would take hours and hours, but it really only took him a few minutes.

And now it's my turn to pack.  We don't have to be at the hospital at an ungodly hour, and it's only about 20-30 minutes away, depending on traffic. 

Tate's Bone Graft Surgery (Alveolar Bone Graft)

When it came time to mentally and emotionally prepare for Tate's third cleft-related surgery, I was surprised to find that there's not a whole ton of blog posts by families who have been there, done that.

It could be that I wasn't looking in the right place.

It could be that people are too tired or too busy to blog about a surgery so long after the palate repair.

It could be that once our children start to become more and more their own people, it feels like more and more of an intrusion to share their stories. I know this is the thing that's kept me from blogging these past few years.

But knowledge is power, or so they say, and so I'm blogging the experience.

The Back Story
Tate is 9 years old and in third grade.  This is me with Tate on our date at Disneyland April 1:

At his last Cleft Clinic check-up, they told us to make an appointment within the year to see the orthodontist (the one who specializes in clefts and works closely with our Children's Hospital's craniofacial team). 

In early December 2018, we saw the orthodontist. He determined that it was time for Tate to have the alveolar bone graft because he has some teeth that want to erupt - but have no bone to erupt into. If they break through before there's bone, they'll just erupt into open space.  So he sent us off to the craniofacial surgical team for their evaluation.

When Tate smiles, you only see a typical-looking smile.  But it's pretty different than my mouth on the inside. This is what Tate's mouth looks like:

The Insurance
Side note here - we switched to an HMO for our insurance when I started a new job last year. We'd always had a PPO or some kind of hybrid before.  If our child needed to see an orthopedist because he grew too fast and couldn't touch his toes (or his knees!), we just did.  If Tate seemed like he was having a lot of breathing issues, we could just make the appointment with the ENT doctor. As long as the doctor was in the system, we could manage our healthcare and pay our copays.

But the HMO, which is the same exact system of doctors, was so.much.cheaper.  So we went for it.  And it turns out that now we don't get to manage anything.  To get the appointment with the orthodontist, we had to get a referral from Tate's pediatrician.  Same to see the plastic surgeon.  Then the insurance company had to preauthorize it.  Our pediatrician is very good about paperwork. But what a pain.

The Consult
Anyway, after seeing the orthodontist, we saw the plastic surgeon and his fellow.  The plastic surgeon who did Tate's cleft palate repair has handed off a lot of his surgical work to the "new guy," Dr. Samuel Lance.  At first, I was nervous about this.  Tate wanted to know if he could have Dr. Amanda Gossman, who he met at a summer camp she runs for kids for craniofacial issues. 

So I googled Dr. Lance. Then I clicked on everything I could find.  I'm not sure what - if anything - I could have done if I didn't approve.  But he seems to be top-notch.

Here's his picture, in case you're interested:

We met with him and one of his fellows.  They explained the surgery.  They recommended taking some bone and bone marrow from Tate's hip and putting it into the space in Tate's mouth where there is a gap.  (Just in time, Tate told them. Rice keeps getting stuck in fistula, and it's tiresome!)

In case you're wondering if there are other options, we were, too.  So we asked.  And they told us that they could use cadaver bone instead of Tate's bone and bone marrow, but the results aren't as consistently successful.  (We were really just wondering if some other bone could work - didn't mean to open a can of worms!) 

I asked what the mortality rate was for the surgery, which I think surprised them. They didn't know. And that's okay.  I tried to find the answer online, but I didn't really find anything. So it must be pretty low.  The surgery is pretty standard for kids with clefts, so it's not super risky.

The medical group billed us for this visit, even though it was pre-authorized. It was just a clerical error on their part.  But holy heck, are doctor's visits with specialists seriously expensive.  We were there for about 45 minutes, and the bill was over $500.  Having practice law at a couple of big firms, I know that's nothing in comparison - but I sure am glad for insurance. 

The Scheduling
Tate has a crazy school schedule, if you ask me.  His school is not year-round, but it is "extended." This means they start August 1 and then basically have a week off almost every month of the year.  They get two weeks for spring break, so we were hoping he could have surgery that first week and miss no school.  Of course we aren't that lucky.  But they had an opening for the week of spring break, so we took it.

More Insurance Woes 
Before surgery, we needed to visit the orthodontist again to have them create a mouth guard. The surgeon will use this during surgery, and then Tate will wear it after, to protect his mouth while he heals.  But before we headed back to the orthodontist, I wanted to make sure we were authorized.  I was able to confirm from our pediatrician/primary care office that we had authorization on the orthodontia. But the surgery was not authorized, and only the plastic surgery medical group could do that, we were told.

So I called them. They directed me to the surgery authorization department, which confirmed the request had been made December 17.  They couldn't tell me why, as of April 1, there was no authorization.  They said they would make it a high priority and told me to call back in a couple days.  Which I did.  That person told me there was no way someone told me two business days earlier that she could help me because I was talking with the outpatient department, and Tate's surgery is in-patient.  (Seriously, why would I make it up and give the person's name?) This person referred me to a supervisor and transferred me.  When the number transferred, the person said to leave a message and I'd get a return call.  I left the message.  No return call.

So by the time of the preop appointment, I was worried. What if we weren't authorized for the preop appointment? What if we didn't have authorization for the surgery?

The Preop Appointment
It turned out we did get authorization for the preop appointment. It came through 15 minutes before the appointment was scheduled to start.  Super helpful.  But still not surgery authorization.

In any event, we met with the surgical resident and then with Dr. Lance.  They explained, again, what to expect.  They told us they'd likely take bone from the hip opposite the cleft so different surgeons could be working simultaneously.  The procedure should last 2-3 hours. The hip is the most painful part of the recovery.  We gave them the health and nutrition form from school because Tate will be on a full liquid-only diet for at least four weeks.  And they sent us on our way.

The Cold
Of course, Tate came down with a cold.  Fortunately, it's been mild - no serious coughing, no fever. He stayed home from his day camp program one day so Grandma could help make sure he was "on the mend" (Tate's words). 

The Authorization
And we did finally get authorization for the surgery.  On Friday.  Three days before the surgery.  I don't get this at all.  Why wait so long?!? Anyway, at least that's all set.

Overparenting

Have you read the NPR article The 'Overparenting' Crisis in School and at Home?

I've given this some real thought.  I don't think we overparent.  We do not do our kids' homework.  Or talk about how "our" soccer team is doing.  We aren't pushing any particular college, major, or career.  We aren't even pushing for specific performance in school (you know, beyond always doing your best work).

 We don't routinely bring homework to our kids at school.  Or food.  And one of our middle school parenting philosophies was that it is the perfect time to make mistakes and learn from them because the consequences were less severe.  We don't email our kids' teachers until we've insisted our kids contact them and try self-advocacy first.  (Though I admit that for IEP and disability-related issues, we will just reach out directly.)

We know that disappointment is healthy.  And overcoming adversity is a desirable skill.

We want our children to be come independent.

So this overparenting - that's not us.

But then, in the back of my mind, there is this small voice that reminds me, "But we still cut up their meat."  And then I'm not so sure . . .

And he’s off!

There have been so many firsts about which I have not written. Plenty of anxious and proud tears over the past decade.

Today Casey heads off to visit his birth family. Without us. Or any adult.

I was able to get an escort pass so I stood with him in a very crowded airport while I waited for him to board. I didn’t feel sad. Or overwhelmed by an inexplicable lump in my throat like I sometimes am with “firsts.” No tears.

I feel some nervousness. But mostly relief with a tinge if worry.

I hope he has fun.

But I hope he misses us, too.

UPDATE: (12:55pm)

So promptly after writing this and proceeding to work, I began using airline tracker software to watch his plane zoom across the United States. So I know he’s landed.

As soon as I saw he’d landed, I wondered, “Why hasn’t he called or texted yet?”  And I immediately texted him. No reply. Yet.

The Golden Shoes

Tate has his own sense of style.  He's opinionated.  He's not shy about sharing his thoughts (last week he said, "Mom are you wearing those shoes with that outfit?" This afternoon, he sighed when he saw me and told me my knee socks, just barely peeking out of my boots, were pulled up too high).  And he knows what he wants.

Since Christmas, he's been asking me for a pair of golden shoes.  They arrived last week.  He was giddy with excitement on Monday, the day he knew they were scheduled to arrive.  He wore them to school Tuesday, and when I picked him up, he told me the after-school-care director told him they were so fancy that he could wear them to the Oscars. On Wednesday morning, he said, "Mom, these shoes are awesome.  Even the fifth graders are talking about them!"

He's not wrong.  They are awesome.

Soccer Post-Season Success

Have you read those articles where they tell you not to put too much pressure on your kids because you don't want to scare them away from the sport they love?  I think the one I remember best is the Ride Home one from Changing the Game. I read it a few years ago, and it always stuck with me.  I mean, I feel a little conflicted. I think talking about strategy and visualizing success and evaluating what went well - and what didn't - could be important, too.  If you know what you're talking about.  But I don't.

So, instead, each game I try to find something specific that Casey did well, and I point that out.  Like this past weekend, he scored the only goal in game #2 at a tournament- which helped his team make it out of bracket play and into the finals.  I don't think he's scored a goal in quite some time (you'd think this is the type of thing I might track because I actually handle the game cards and report the results to the league, but I really don't pay too much attention to it).  And it was exciting. It was, of course, a team effort. There was a pass. And a little of a ping-pongyness to the play.  And then I watched him chip the ball up over the keeper's shoulder and - boop - into the goal it rolled.  But what I remember from the game came later -- when he chased down a player from the goal box of the opponent and caught him before he got to the goal box on the other end of the field.  I watched him fly out of nowhere.  I know he can be fast - but where did that speed come from in the heat of the day?  I love watching it.  So graceful.

He had his not-super-great moments, too.  He missed a play or didn't cover a man or whatever.  I bet he knows exactly what those moments are, though.  So I try to just remind him of what he did well, too --

Is it making a difference?  Probably not.  Maybe so. I don't know.  But I know he likes having me there.  And I like being there.  And that's good enough for now.

They won the tournament, by the way.  In a nail-biter of a final game.  When the boys scored, we jumped out of our seats to cheer for them.  Casey took notice -- "Everyone was yelling - but because they were happy!"

Casey is second from the left, front row.

After the game, the tournament had the team captains from each team present the awards.  The finalists went first, and they were super gracious.  Then our boys went and were equally gracious.  They celebrated their team success - and even called out their keeper for managing a shut-out.  Quite a weekend. . .

The Five-Year Familyversary

Well, it's been almost a year since I posted.

It turns out it gets harder to post as your kids get older.  It's not the lack of time (though that doesn't help).  It's the interest in privacy.  If I write about how kiddo X is struggling with ______, will kiddo X read that in 5, 10, or 15 years and be angry that I wrote about it?  (Who am I kidding?  What are the odds that kiddo X will ever care enough to read this blog?)  In any event, it's been harder.

But I'm still here.

And today is our last familyversary.  "Last" in the sense that it's the one that completed our family and turned us from a foursome into a fivesome.  Of course, I'm terrible about tracking these sorts of things.  Marcie's familyversary was just about a month ago, and it completely escaped me.  Between birthdays and "gotcha" days (our familyversaries) and official, legal adoption days, it gets hard to track.  But the timing of today worked well.

Tate's transition to public school has been a little rough.  Last year, in Transitional Kindergarten (TK), we got called more during the school year by the school than we have by both other kids in the past 7 years (12 if you count up Casey and Marcie separately).  This year seemed to be going better.  Until they went from 1/2 day school to full-day school this week.  I mean, we haven't gotten any calls from school yet, so that's good.  But Tate seems pretty unhappy.  Tate has always complained that school is boring -- "too much sitting, not enough playing," he says.  And he gets sent to the "thinking chair" too much, he says.  But now that it's sitting for even more of the day, he is not happy.  And this is only day 3 of full-day kindergarten.  Actually, today was an early-release day, so it wasn't even day 3.

Anyway, when I picked him up from school today, I told him that today is his Familyversary day, and he took to it right away.  "It's my China Day!" he announced.  And he's been repeating it ever since:

  "We can have Chinese food for dinner because it's my China day."
  "We can go out for frozen yogurt for dessert because it's my China day."
  "I can have dessert even though I didn't eat all my dinner because it's my China day, right?"

The kids knows how to work the system.