Friday, July 12, 2013

Speaking of...

...our little Wild Man...

I've had so many people wondering what's been going on with Mr. Z's doctors/appointments...Zoe's medical needs have overshadowed Zane's from the beginning, with these last couple months more than trumping his waiting game...but I wanted to catch you all up on our Little Taz. :)

When we last had a heart-to-heart about little Z, we had made our first trek into the city and met with a good number of specialists. We were told the cleft would be the first batter...followed by a hit to second, oral/jaw (teeth were great, but he's missing the back jaw bone on the right side which they'll have to build)...and finally the home run hitter, the ear (around age 8 once the left ear is mostly fully grown so they can try to match it). For good measure, they also threw in a stint in the outfield, neurosurgery, and the always elusive bunt, genetics. (I honestly have no idea why I'm obsessing with the baseball references...other than I must be DEVASTATED that baseball season is over...yea, that's it...devastated.)

Just before Zoe's extended stay at the PICU resort, we had our visit with the neuro peeps. It must've been obvious that this was way above my pay grade, because the doc took it very slow and tried to simplify when possible. I was too grateful to be offended...my interpreter was absent that day...so dumb it down, my friend...dumb it down. He wasn't concerned at all with the misshaped cranium (insert your best Mike Myers impersonation here...hahahaha...sorry, couldn't be helped) but instead directed my attention to the "dimples" on his cheek and shoulder. He thought it very likely that these had nothing to do with the possible genetic disorder and were more likely caused by amniotic bands. This was pretty surprising as my exposure to these lovelies was very limited and very recent. My sister-in-law was told last year that her second baby may suffer from these amniotic "pinches" which often result in loss of limbs for the baby. Obviously we prayed our guts out for Myka Moo, and we were thrilled when she was born completely whole and perfect. God is so gracious. Anyway, the doc said if this bands were to blame for these "divots," then Zane would likely have some vertebrae fused together. He sent us down for an x-ray and, sure enough, C2-3 were fused. Then he ordered a kidney ultrasound because the same culprit causes kidney damage. We are still waiting to hear back on the results of that recent test. 

During our prolonged hospital stay with Zoe, I decided we should multi-task since Zane and I were there a good many days just sitting around. So I began calling offices of Zane's doctors to see what tests could be done while we were already there instead of waiting until we went back home and would have to drive straight back. Well, it should be no surprise to those that know me well to hear that I stirred up quite the hornets nest! HAHA! Shake things up...ya know...keep 'em on their toes, I always say...or maybe that's what I've taken to calling my aggravating people to no end..."keeping them on their toes"...yea, that sounds way better.

For all the incredible communication we had with every single one of Zoe's doctors, we couldn't get any two doctors of Zane's to say the same thing! We're waiting...we're going...he'll begin treatment this fall...this winter...next year...ACK! You get the picture. 


Multiple doctors said they'd need a 3d scan of his head before proceeding with any surgeries so I tried to get them to do that on one of our many visits. I couldn't get anyone to even acknowledge the order...like this is my favorite...making up bogus X-rays where you have to put my baby to sleep. Yep...nailed it.

There is sufficient reason to be concerned that there is nerve/tissue damage to the right side of his face as well. This will come into play when they do each surgery because they wouldn't want to do any further damage there. 

I also tried to get us into the geneticist while we were living up at the U, but the earliest we could get in was...are you sitting down...November! Who are these people?!?! I mean...c'mon! This side of the coin isn't vital now as it will not likely alter the course of any of his immediate treatments, but we would need to know if he has any genetic disorder for future reference. Anyway, another brick wall.

Dr. Edens (our beloved central hub for all-things Zoe) suggested we get our primary doctor...hereafter known as Situ (trust me...you want me to keep his name simple! :) Kind of like "Wagenschutz"!!!)...involved so we'd have a central go-to dude running the show. I finally took him up on that advice when I got a call a couple weeks ago from the cleft offices saying the next thing on the docket for Zane was tooth extraction with the oral surgeon...okkkkkk...since we haven't heard anything about TOOTH EXTRACTION, how's about we back up this train just a bit?!?!? HAHA. No, really.

After the cloud lifted earlier this week, it sounds like everyone is getting their ducks in a row, and we should have some answers within the week. No teeth extraction, no oral surgery anytime soon...likely 2-4 years away...and ear will still be last around age 8.  

Our original information was actually correct. The doctor wanted to wait a bit on the non-urgent side cleft just to give us some extra bonding time. That anticipated time is drawing near, and it's looking like Zane will have his first surgery on the cleft (to close up that side of the mouth) in September of this year. You can begin to pray for little man...it's going to be rough. Not necessarily because of pain and discomfort but more to the point, he will have to be calm and rest for recovery. Not his strong suit. No joke...we may have to remain sedated for a little while. HE NEVER STOPS MOVING. 

You can also pray for our other kiddos when Zane goes in. As you can imagine, the concerns of life and death situations are at the front of our minds, at the tip of our tongues...so we will begin praying now for peace and supernatural comfort as we make our way through these muddy waters. 

The biggest perk? We're wearing Holy Spirit floaties...and the Chief Lifeguard is watching closely...there's no way we're going under.








Sunday, July 7, 2013

Without 6, there'd be no 5!

Right now, you're thinking I've completely lost it...ok, yes. That has nothing to do with the title of this post...but, yea, ya got me...let's just stay focused for now.

(Or maybe you're rude enough to admit that you never even notice these catchy titles I agonize over for days...well, to you I'd say the all-time worst parental admonition, "If you don't have something nice to say..."  I say "worst" because c'mon...sometimes it's GOT to be better to say something not-nice than to CLOCK the offending party!!! Can I get a witness?!?) Anyway, now you've gone back to the title to try and make sense of my ranting. HAHA...I crack myself up. Who needs an audience?!?

"Without 6, there'd be no 5!" (Inserted here for those too lazy to scroll back up the page...ok, I promise to leave you alone for now!  No more smack downs...in the next paragraph at least.)  

Not to belabor the point, but I have good days and bad days...up days and down days.  This is to be expected, and I'm fully aware that this grieving process is a marathon, not a sprint. However, I've also realized that the more I own up to the situation, the quicker the healing. This stinks...plain and simple. Denial does no one any good and seems to simply prolong the inevitable. Transparency is the way to go. Here I am...messy and desperate...you're gonna get dirty and smelly if you're around me right now...but I'm game if you are. That pretty much sums it up.

Today marks the 1 month anniversary of Zoe's death. That's momentous enough. To heap coal to the fire, we also traveled to Indiana for a little bit of family time in between our weeks of summer chaos...the last time we were here, Zoe was with us. It was a long 4-hour trip. 

If you're starting to get the impression that there's a never-ending supply of "the last time" moments with Zoe, you're right. That's how it is with the members of this elite "nobody-wants-to-be-a-member" club...it's gonna take a loooong time to exhaust those moments. Tuck that little nugget away in your back pocket for safe-keeping.

I began thinking about the goodness of God during that trip...how gracious He's been throughout this ordeal, in spite of the fact that I can no longer cuddle up with my sweet angel. The most obvious sign of His grace...the most tangible showing of His compassion...is what I referenced above. You see, normally, you'd say, "Without 5, there'd be no 6!" But in our adoption story, that's reversed. Without #6, we'd not have #5. 

Most of you are familiar with our adoption story...how we saw Zoe's picture (the youngest of our 6 children) and began the adoption process. After we were fully invested emotionally with this little princess, we found out about her "best friend" who needed a home as well. He was a little older than Zoe, and although he'd been available for adoption longer, nobody was pursuing to adopt him. He seemed to simply need some plastic surgery on his malformed right ear, cleft, and jaw. Given the relationship between the two kids, we decided to adopt Zane as well...making him our #5.

I wish I could tell you that we would've chosen to take that step even without pursuing Zoe, but I can only say, "I'm honestly not sure." He looked different, he would probably hear different, he would likely even talk different...I'm just not sure we would've taken such a huge leap toward him if we weren't already figuratively carrying her in our arms. 

It's sobering and humbling to think what my shallow heart would've missed out on in that decision. This little boy...this 5th child of mine...is joy personified. I would challenge you to spend 5 minutes with him and not walk away smiling. It would take you less than 2 to forget he has any deformity whatsoever. His personality could fill up Texas Stadium. His smile is as broad and bright as the sun setting over an Iowa cornfield. His strong, yet tender heart is so precious, you find yourself taking baby steps around it so as not to allow even one more fear to creep its way in there.

It's hard to remember a time when Zane was not part of our family. He acts like he runs the show...further evidence that God deliberately placed him in our family tree. He talks non-stop...need I say more?!? Based on his demeanor, he is happiest when we are all together as a family. He is very distressed when even one family member is absent.

And we would've turned away...if not for #6. Zoe brought Zane...Cha Cha led the way for Jai Hia...and now she is gone, and he is here. I try to remember that precious gift she gave us in my moments of despair...or in those moments when he's screaming at the top of his lungs in the van...what a priceless treasure. Our house still rings of giggles...and running...and even screaming...even in the midst of great sorrow. 

6 gave us 5...so when the tears flow and the ache turns into a throb, I take a moment and say, "Thank you, Zoe. We miss you so desperately. You will always have a permanent place in our hearts and our family, but thanks to you, so does Zane."




Wednesday, July 3, 2013

Now what...

I'm not looking for a magic happy pill that will take away the pain. I'm just dreaming of the day when I won't suddenly, and without compulsion, burst into tears. 

As we approach the one-month anniversary of Zoe's death, I find myself equally frazzled and drained...with no distraction ever up to the task of occupying this frightening foreign land of grief. There is peril around every corner and enemy combatants lurking nearby. 

I've tried to get out of the house for lunch a few times, and mostly tried to avoid the dreaded, "How are you doing?" question. 

I was able to return to church a couple weeks ago...but sobbed through every song like, "Even though I walk through the valley of the shadow of death...Lord, You never let go of me."  

I've started working out again...even spontaneously did a 5k/13 obstacle Mud Run...I know, I know...cry for help. Trust me...I did...no one answered. And yes, for all you smart alecks, I did injure my good ankle...happy? I learned that I could actually do this race thing without Olympic training...and that God will use a big ol' pothole to teach you some humility when you're trying to beat someone to the finish line. But would you believe that even as I was vaulting (I use that term loosely...very...loosely) over these obstacles in a single bound (just go with it...), all I could think about was how much Zoe would've loved to watch her momma do this crazy race...screaming and pointing...pointing and screaming...just to be sure everyone was seeing this old lady make a fool out of herself. So much for the distractions.

It most often looks like 1 step forward...3 steps back. Leading up to days like tomorrow when we will spend the day together as a family...doing things like parades, talent shows, kids' games, cookouts, and fireworks...it feels more like 10 steps back. 

Returning her adorable 4th of July romper to the store? There's no distraction for that. 

Leaving the cookie batter unmade? There's just no pretending. 

Yet more to the point, and weighing heaviest on my heart these last couple days, is the stories I continue to hear of other children...children that have gone unloved, unprotected, mistreated, and flat-out ignored. 

I saw on the news last week that a toddler was killed from heat stroke. A drunk father went inside his house and passed out, as his son died alone in a vehicle, strapped in his car seat.

I read an article that there is a hospital, in the province the twins came from, that is SELLING abandoned babies. The problem is...there's no way to tell if the babies were indeed abandoned...or simply taken for profit. It's all about the "business" of children. 

As I left Walmart on one of my umpteenth visits last week...already in tears, mind you...an elderly man started ranting on and on to me in the parking lot about Steamboat Days in Burlington and promptly jumped to, "...and I don't believe what they're saying...I think that mom did kill her baby! I really think so...they're gonna find evidence...she KILLED her!" All I could do was shake my head in stunned silence.

My only response beyond prayer has secretly been, "Send them here! I will care for them!!! I'm a...(say it with me now...you know what I'm going to say...) I'm a HOT MESS...but I will be their mommy! It's just not fair! It's just not right! They just need a home...they just need a family...and they're being tossed around like Raggedy Ann and Andy!" 

It feels like salt to the wound...these stories and more. When did children become our possessions rather than our treasures?!? How does a party on a Saturday night trump the life of an innocent child? Gotta say...I'm at a complete loss. What some people wouldn't give for what others toss away so carelessly! 

Stories like these have always been dreadful to hear, but I can honestly tell you, there is no such dread as to hear these stories after your own child for whom you so desperately fought to give life is torn away. No such dread. In a way that I can not adequately express, it feels like a personal offense. How dare they? 

But if I'm being fully transparent, I would admit that until Zoe was taken from us, I never fully understood the pain of those families I've offered condolences to...I've never had to cling to hope so desperately while singing at all those funerals...I've never truly grasped the value of life...not like I do now. Guess I should say...how dare I? 

How many times did I say, "I'm so sorry for your loss"...and then go about my merry way? Far too many, I can assure you...because what I usually missed was the bigger implication into which I'm beginning to sink my teeth. Not only are we grieving the loss of our sweet angel now, we are grieving her absence in every future holiday, in every school field trip, in every concert, in every graduation, in every relationship, in her wedding, in our grandchildren...that will never be. 

We are grieving a lifetime with Zoe. 

I believe that's why you never fully "get over" such a loss. There's no distraction, there's no cure, there's no replacement...there's just emptiness that can only be adequately filled with complete hope in, and love for, a Savior who's got a death grip on me...He really doesn't let go...through the calm and through the storm, in every high and every low. Guess what else? He's got big enough shoulders for all of us to lean on. He never tires of our tears. He never says it's time to move on. He gets it...more than anyone else on earth could even pretend to know how you feel...He gets it. He full-on WEPT over the death of his friend, Lazarus...even though He already KNEW He was about to say the word, and he'd be alive again! Just let that sink in a minute! He wept...sobbed bitterly...then wiped his tears, said the word, and Lazarus was alive. He knows how much this aches inside my heart right now.

I'm so grateful for a Comforter who truly understands the sting and bitterness of death yet gives me the example of continued faith and endurance in the plan of the Father. That's how I answered that dreaded question this week to a friend...I'm completely and utterly trusting in the goodness and faithfulness of God yet still feel cheated and rocked to my very core that Zoe is gone. Balancing those two...while heavily leaning toward the first...that's how I'm doing.

SO...now what? Where does that leave me...this continued heartache and newfound appreciation for life and the blessings it brings?  Well, I'd still take them all in...that, I know for sure. No one will ever replace Zoe, but each of these children have a name and a need...maybe God will choose to send them our way. I pray my heart will continue to be broken...and my arms continue to be open...for those who have no one to love them. For some reason, I'm sensing that He's not done growing this chaotic crew, but if His plan is not a matter of quantity, I'm confident that He desires to improve our quality of life...both in the Carr's and in every life we touch. I'm praying for the humility to be pliable in the hands of the One who truly does love all the children of the world.