...You have until age 9 to correct the problem...after that, the damage is permanent

Yea...you read that correctly. I think my new plan is to just avoid new specialists...no more bad news! :) Who's with me?!?

I think I've shared before that Zane's vision is the only other major issue that has come from his Golden Har syndrome. Besides the cranial/facial deformities, it can also affect the heart, the kidneys, the liver, and the eyes. 1 out of 4 ain't bad, I guess. 

The few of you that have been riding along with us for awhile now will recall when little man got his first pair of glasses...we had to go with the sport goggles because he's missing an ear and all...or you might not have realized because his personality is bigger than the Statue of Liberty...for the love. SO...the goggles had a strap from eye-to-eye. Perfect solution. Except for the complete and utter smashing of his poor little face, eyeballs touching the lenses, etc. He sure looked cute, but he was in constant pain and aggravation. I found myself telling him, no less than every 2 minutes, PUT YOUR GLASSES BACK ON!!! I may or may not have even resorted to, "Don't you realize you'll go BLIND in that eye?!?!?" He pretty much thumbed his nose at the Blindness Kings and shoved them up like the coolest pair of shades ever! 

We called in subs, we scolded and punished, and then we...well, we basically just gave up. Blast it all. 

The glasses persecution lasted Feb-June. Then it was time to revisit the eye doc. Since I knew I'd be in the fetal position if I walked into that hospital in the month of June, Captain America took big Z in my stead. Unfortunately, his eyes had gotten worse. I was completely shocked after we had given up all efforts to correct his vision. Just shocked. 

Guess what happens when your eyesight worsens!?! You get a new prescription! 

Guess what happens when you get a new prescription!?! You...say it with me now...GET NEW GLASSES. 

For the love. I can't even. Ain't nobody got time for that...and every other overused catch phrase of our day.

We won't even go into the time lapse between that dr visit and a certain Mother of the YEAR actually going in to get the glasses...maybe a couple weeks...give or take 3 months. AND that was only after our primary doc said, "Eyes. Deal with that NOW. Nothing else. Focus on the eyes." Pushy people, over here in Iowa. 

Of course, when I finally meandered into the vision center and begin to pick out frames, the sweet gal said, "Oh, you really should bring Zane in so we can fit him for the glasses." You remember him, right, lady?!? Cute little Asian dude...one ear...was running laps around your little store filled with GLASS?!? So how's about you and I just wrap this thing up, shall we? 

We went with regular frames and a band that slid onto the stems...hoping that he might cooperate more if they didn't hurt so badly. Again, more insanity as they tried to deal with the cranial malformation that most people never notice because of his hair...I felt like just calling the ear dude in Iowa City and whispering in my best stalker voice, "Give the dude his ear. Now. And no one gets hurt." 

So here we find ourselves...Zane seems to not fight the glasses issues quite as much because they aren't killing his face. But it's just tricky because he's got a strap going east-to-west around his head, for the glasses...and a strap running north-to-south for his hearing aid. Yikes. Sounds like that leads us to another post...soon.

Gotta love our little terrorist...we sure do!

Where oh where to begin on the little man...

Here's the funniest part: I scrolled back through the blog to find out where I'd left you on the Z updates, and I was seriously laughing out LOUD at the last entry. Go back and read it. Just for kicks. It'll brighten your day. (To be clear...I recall that day like it was yesterday...with no fond memories, I can assure you! But sometimes...or always...ya just gotta laugh! Maybe it's so when he's smearing poop all over the car, I can think, "Hey, at least he's not terrorizing an entire hospital right now! Nope. Just me." (That story is for another day. I'll give you plenty of warning.)

Anyhoo, I thought the quickest way to get back in the swing of things would be to update you on Zane's mouth/surgical recovery, since that's where we left off in his story!

For the most part, Z healed nicely from the surgery with the mouth closing nicely. Unfortunately, that same spot where they removed the pit continued to be stubborn (shocker) so Dr. K had to do the needle-less injection several more times to convince the scaring to just chill and obey. More pain for the little dude, more strapping down for the 'rents. 

We began working on the following vocab word: KARMA. So far so good. Pretty sure he's gonna get that one on a tattoo instead of the "I love Mom" one that we had planned. Whatev.

The biggest concern in regards to the mouth/face surgery is nerve regeneration. Oh the things you learn about the human body when yours doesn't perform the way it should! As always, here's the Eva-version of the state of affairs: Apparently the nerves that allow you to control the function of your mouth, run down the side of your face. You might say, "DUH!", where someone else (yours truly) might say, "Interesting!" So these nerves...

In order to close the side cleft properly so that Zane would be able to completely control keeping food and drink INSIDE where it belongs, they had to "weave" those nerve fibers right into the muscle tissue and lines they created. Therefore, it looks great...until he smiles and you realize that side of his mouth (where once the Grand Canyon resided) doesn't "open" the same as the other side. In effect, it initially appeared like they'd made a mistake and closed it too much. But the true culprit is...say it with me, class...nerve regeneration. It takes time for that to happen so that his smile and basic mouth function appears balanced on both sides. The only distressing element here...it may never return. So they chose the lesser of 2 evils, so to speak, and we began watching and waiting to see if it would gradually come back. If it doesn't come back fully by 6 months or so, the "damage" is permanent. Bummer. And so we waited. (The benefit of my prolonged blog absence is that you no longer have to wait for unfolding details! That's how much I love you.)

As it now appears, Z has regained some, but not all, of the nerve sensation on the right side of his face. Most people cannot tell as it's definitely less noticeable at this point. 

I may or may not have told Chris that I regretted the surgery, after a month or so, because I missed the gigantic smile of Zane's. Yes, it was that big because of the gapping side of his mouth...but, man, did he have a great smile! He still does...I love it...it's just a little smaller. 

Good thing his personality makes up for that! :)

It's time.

Yes, it's time. Time to re-enter the land of the living...or the blogging, as it were. 

You'll notice that you haven't heard or seen me around the blogging world since Zoe's birthday, the end of April. I thought I'd keep you updated through those following months, but truth be told, it was more difficult than anticipated...and I was thinking it was going to be a nightmare, so...

Although I would never claim to be on the other side of grief...is there such a thing?!?...I have been able to process through a great deal of heartache over these past several months so I'm grateful for your patience with me. 

There are a million updates on Zane's antics, plenty of family updates, and even some specifics thoughts about the anniversary of Zoe's death. I've been saving all these for you...until I felt strong enough to share them. Thanks to my longtime friend, Christina Widup, for the courage to allow you to grieve and pray with us.

Ready or not...here I come. 

Happy Birthday, Baby Girl

April 30th was one of those days you dread when in the throws of grief…a momentous day that comes, no matter how comfy you find yourself in Denial-ville. I mentioned to a few thousand of my closest social media friends that this was one of the top 3 most-dreaded days. I stand by that statement. 

May 21st was the day of Zoe's heart surgery…it was also the last time we heard her giggle, saw that beautiful smile, and felt her arms around our neck. That's gonna be a tough one. 

June 7th will be the anniversary of Zoe's death. That day will probably be the ultimate trump card. There's no forgetting the awfulness of that day. I can still hear the doctors words and see their looks of overwhelming sorrow as they said there was nothing more than could do. Valium will likely be on the short list.

But, yesterday…yesterday rounds out the top 3. Yesterday was Zoe's 4th birthday. There was no escaping the lack of balloons…the absence of presents and cake…no friends and family gathered to celebrate. The joy vacuum seemed to suck the happiness out of every second. 

I bounced back and forth between avoidance and celebration. 

8:00 am-Eva decides we should just let our busyness distract us from the grief of the day. 

8:02 am-Eva decides we should have cupcakes and balloons in Zoe's honor…the whole nine. And so went the entire day, in 2 minute increments. Yea. 

So many sweet friends gave ideas of how to remember Zoe's birthday, but nothing seemed to "fit" our family. Sentimental is difficult for us…primarily, I assume, because it's most difficult for the one who's "supposed" to lead the charge…the mom. 

Another interesting turn of events made the day brutal. Our family has been fighting sickness for about 2 weeks, and it all met a breaking point when the king of our castle bit the dust. Zane started hacking about 10 days ago…screaming in pain with every cough…much worse than his double surgeries. High fevers led us to the doctor where I was sure they'd find strep or the like. Nada. All that progressed was his need to share it with yours truly…so then I was down for the count. (Chris took off most of the week following Easter…all he did was take care of me and the little man.) A couple days later, Chris began to "feel it"…it was bad…then it grew into pneumonia. He hasn't been to work this week either, for the most part. (If you know Chris, you realize how bad it truly is for him to miss that much work! This is nasty stuff.) The girls are beginning to feel the sore throats and fevers, while the boys are avoiding the rest of us like the plague. Moral of this side story??? We had a massive distraction handed to us on a silver platter. It's not what I would've chosen, but this virus straight from the pit has definitely kept our attentions diverted.

Of course, I still want to acknowledge this special day! (Remember that whole back and forth deal.) I think I've found a happy medium that'll be a sweet celebration for our crew. We are in the process of making some sweet mini panda cupcakes (the process comes into play because of all the sickness I mentioned…ugh)…we will place some pink flowers at Zoe's graveside…and we'll spend some time talking about our fun Zoe memories over dinner. Personally, my favorite times lately are when we watch the few videos we have of Zoe…probably because the most crippling factor at this point in the grieving process is that I'm struggling to remember her voice and her laugh. Those videos are like salve to my open wounds.

Zoe's special friends, (and ours too) the Davis family, sent a beautiful flower bouquet yesterday with the following card, "Celebrating a beautiful life!" I think that's the key for us. Celebrating a precious baby girl that we had the immense privilege of loving intensely in her short life. I always tell my kids they should be grateful for what they have and not complain about what they don't. The enemy is sneaky with that one. Sounds like this is yet another instance when Mom needs to take her own advice. Because Zoe's life was beautiful…and it is worth celebrating.

The best way I can think to do that for you all is to bring you into one of these special moments. Big sister, Landry, gave me permission to share one of the many clips we have of Zoe. In spite of her heart/oxygen issues, Zoe LOVED to be chased…and LOVED to be scared! She would scream and waddle away as fast as her little legs could go! She thought she was Speedy Gonzalez. It was awesome. This video was shot about a month after we brought the kiddos home from China. You'll notice the Chinese/English language combo. "Be-ow" (totally not spelled that way) means something like, "I don't want that/I don't want to." We heard that constantly from Zoe while we were still in China…she wasn't happy with shift in power we had going on! As you'll see…once we got to the states, she continued to say that, but in a teasing way. We may or may not have taunted her with it as well. So wrong. 

Anyway, back to the video…Landry is trying to carrying Zoe down the stairs…Zoe's not having it. Then Landry goes ahead of her and hides…keep watching when it goes black…Zoe was loving it. 

Happy birthday, baby girl. We celebrate the beautiful life that you were. We will giggle with you. We will smile at your sweet face. The joy you brought to our family will always provide such sweet memories.

We remember you on this special day. Happy #4, Cha Cha. We love you so and miss you dearly.

Missing our sweet angel

more news on the little man

Hey friends. How 'bout a brief, and hopefully, final, update on Zane's recovery? I say "final," because if all goes as planned, his mouth surgery will soon be old news. And can I just say…with his terrorist plots in full swing, this little mouth thing NEEDS to be old news. Ain't nobody got time for that. Yes, I just went there. 

Little man and I made another trek up to the U, roughly 10 days ago. Dr. K wanted to check on the scarring and that pesky hole in the mouth. We'd already gone to soft foods but were counting down the days to normality…as if. 

Let me just say…somebody slap me next time I get lofty ideas of taking Zane anywhere by myself. Seriously…SLAP me. I set expectations of a short dr visit, followed by a yummy trip to Chick-fil-A (because the restaurant gods continue to frown upon SE Iowa), and then a fun time at the children's museum in the mall. DOES THAT SOUND SO WRONG?!? Call me crazy. Instead I spent my time full-blown RESTRAINING this cute little hoodlum. If you've ever been at an event and saw Z sitting in my lap (his least favorite family member) with my arms completely encircling his sweet self, then you know what's going on. One moment, he's entertaining the masses with his enchanting charm and astounding wit. The next, he has flipped the switch into full terrorist mode. Then you better hide your wife, hide your kids…you get it.

That's exactly what happened the morning of our adventure into the city. Switch was flipped. So with my dreams…and soul, apparently…crushed, Zane and I got some precious cuddle time at the U! :) (How's that for your daily dose of sarcasm?!?)

I'll give you one small example. Every now and again, big Z will twist the truth. (Sounds better than lying, right?) The downward spiral started when he insisted that he had to go potty on the way up to the hospital. After my own demands that he would have to wait until we finished our hour+ drive, I shifted into "save the van" mode and desperately began looking for a handy toilet, amidst the back seat panicking about having to go NOW…and me yelling from the front, "YOU HAVE TO WAIT!" You get the picture. Even though it was going to make us late, I finally found a gas station, jumped through car seat hoops to get him inside, accomplishing what could only be classified as an Olympic event. You can see where this is headed. Plop him down…nothing. "I was just kidding. I no have to go potty." Somebody hold me. 

This was at 9 am. We have a flag on the play. 15 yard penalty. This dude plays dirty, and the refs aren't calling a fair game.

This little smoke screen happened 3 more times…before we ever saw the doctor. I'm sure the hospital security had been called by the last time we were in the coveted bathroom, and the words, "So help me…pee better be coming out of you in the next 2 seconds," came out of my momma-humiliating mouth. Zane added to our joy by attempting to destroy the doctor's room like a little tornado. So you can imagine both of our state of minds by the time the doctor got into our room. I want my mommy.

Best news of the day…the hole inside the mouth had closed. Sweet molasses…that was awesome. (Of course, given the above information, imagine what had to happen for us to figure this out! Yea.)

The scars at the mouth itself looked really nice. Remember I mentioned before that he was going to have a pretty sweet initial tattoo at the corner of his mouth. The envy of the playground.

Unfortunately, the scar where they removed the pit was looking pretty angry…so they fought back with a needle-less steroid injection. I didn't tell you about his demeanor for nothing. Just try to imagine with me, the team of medical professionals it took to accomplish this little pop of an injection on his tender face, especially on a day such as this. For real. I will admit that I told the doctors this must be karma. But I was kissing his sweet head and comforting him in my best Julie Andrews. Does that count for some mothering points? Maybe 1…2? I'm pretty confident it doesn't outweigh the rest of that debacle of a morning. Say it with me…MOTHER OF THE YEAR! (I'm a shoe-in this time.)

Of course, the morning wouldn't be complete without several follow-up visits added to the books…something to look forward to! :) 

Because of the scarring issues, we will have to return the beginning of May to see if he needs another injection. That should be fun since he now knows what that means. Super. We will also meet with the hearing aid peeps to discuss a soft band hearing aid (Baha). That would mean he'd have a band going front side to side with his glasses and another going top to bottom with the Baha. I did ask if there was such a thing as a clip-on Baha that could attach to his glasses. They looked at me like I'd broken the 11th commandment. I did cancel the endo appointment they'd set to check on his slow weight gain. He's fine. I need a sedative. 

Any wonder why I waited 10 days to share this update with you, my fine friends?!? Let's all go eat some peanut butter and forget this happened…except the part where we have our amazing little Asian that we adore and couldn't imagine a day without…yea, except that part.

news on the home front

Hey there, old buddy…old pal!

Just wanted to let you in on a little secret. There are a several blog posts in the works right now…some to make you laugh, some to share a tear, and some to keep you updated. But those posts are not for today. 

Today I'm just telling you that there is no specific post for today. 

Keep 'em wanting more…that's my motto. I'm aware at some point, you'll want to collect, but for now, we'll just roll with it.

Nope, this post is to simply tell you that new things are on the horizon. A new look, some new content, a new vibe…the suspense is palpable. Keep on eye out for the nail-biting unveiling! You can cut the tension with a knife. 

Yea. That's all I got. 

woulda…shoulda…coulda…

It's April. 

I should've been planning a birthday party…instead I took Zoe's name off the bedroom wall.

I could've been picking out princess party favors…instead I put away the rest of all traces of princesses at the house.

I would've been finding a puffy party dress for our sweet Zoe to wear…instead we took her bed out of the room she'd once shared with Zane.

Please don't confuse these actions with the much-awaited "moving on" that keeps floating around my ears. They needed to be done…whether I wanted to do them or not. Moving on, however, is way overrated. As much as you wish the grieving parents would move on, please stop suggesting that they do so. This is not helpful in any way…for you or them. It implies that there is a magical moment when this won't be the most awful thing a parent could ever experience. It also adds insult to injury by adding guilt to their already full plate of disappointment, anger, heartache, inadequacy, depression, and more.

In a few days, we will mark 10 months since Zoe's death. In the amount of time a tiny human grows inside its mommy, we've had to get adjusted to the loss of another tiny human…our human. It doesn't get worse than that…until somebody says, "Enough already. Get over it." 

We have to stop trying to push people past their pain and heartache. It's part of who they are now, and you're letting them know they're not good enough anymore…not if they have the nerve to bring their baggage with them. You're basically saying, "I'm good with part of you…the part that doesn't make me uncomfortable…but I don't really want to be around that other part. It makes me too sad. I don't like not knowing what to say, so could you stop talking about your sadness. I'll feel better then." 

Yea. That's the message you're throwing down, hoping they'll be strong enough to pick it up and swallow it…for your sake. Cut it out. For real. 

It's April. I should be planning a birthday party for our miracle baby. Instead…I'm spring-cleaning. In case you're wondering, I'm more of a party-planner than a cleaner. 

The hubs says Zoe will have the best birthday party she's ever had this year. I believe that to be true…100%…I just wish we could celebrate with her and all her heavenly homies. That's a party I could get into…