Sunday, June 12, 2016

How We Got Here...

It's taken two and a half years of "back story" to get us where we are today, and quite frankly, that is exhausting to relive and re-explain.  Yet, we are constantly encountering well intended friends and family who want to know what's going on.  So, here it is for perusal at your leisure: the whole story (minus some minutae and emotional processing).

January 16, 2014 marked the official beginning of our adoption process.  Though, of course the heart work began long before that day.

February 25, 2014 we learned that Snuggs was growing a tumor in his noggin, which would (among MANY other things) result in the end of our adoption process. It's crazy to look back at those dates, just over a month apart, and think about the prayers, paperwork, and tears involved.  I still don't completely understand what God was doing there, and I doubt I ever will this side of heaven.

After almost two years, many forms of medication, countless vials of blood, several minor surgeries, and our fair share of marital strife, it seemed as though we finally had a good handle on this tumor and its side effects.  We began 2016 feeling like he could preschedule his procedures on a predictable timetable.

In March of 2016 we celebrated Cricket's 5th birthday aboard a Disney Cruise.  It was truly wonderful.  So wonderful, in fact, that we booked our next one while on board just to save 10% because we KNEW we would be coming back for Buttercup's 5th birthday.  His birthday was the final day of the cruise.  Once we were on land again, Snuggs called to check in with his mom, who had been having some stomach issues that had landed her in and out of the hospital periodically over the two months prior.  He was told that they had run some more tests, which they planned to discuss on the 8th, and that he could be included in that conversation via speakerphone.  She said she felt good about the care she was receiving.

We spent the entire next day being shuttled between various airport gates and airplanes.  We landed in our home state that evening, drove home and got the kids to bed shortly after 9pm.  Exhausted from a full day of traveling with a 3 and 5 year old, we drug in the luggage, dropped it in the kitchen, and were asleep by 10pm.

Shortly after 2:30am that "night" on March 8th, we were awoken by a phone call from Snuggs' sister, panicked and hysterical.  "Mom's coded 3 times and they've been working on her for 40 minutes."  All he said was, "I'm on my way."

We got up and rifled through the luggage to find what he would need in the event that he had to be gone for more than 24 hours, and less than 5 minutes after the call came in, he was out the door.  His mom was gone before he got halfway there.  He was the first family member to the hospital.  Later, he would tell me that he cried, held her hand, and spent roughly 30 minutes telling her all about our vacation and how much the kids had enjoyed it before anyone else arrived.

It's an interesting thing being SUCH an emotional woman married to SUCH a calm and steady man, one who encounters tragedy on a daily basis, at that.  I was by his side for as much as I could possibly be as he processed and prepared for her service, and aside from an occasional far off stare and less conversation than usual, I saw no further display of emotion.  Someone said at her service that he has tear ducts of steel.  I wanted to punch them in the face.  People have NO IDEA.  He is a problem solver, a caretaker, steady, reliable, just, and calm.  But he has the biggest heart I have ever known, and once the tasks are completed, the problems are solved, and everyone else is taken care of, he allows himself to feel it.  Mind you, still not in the dive deep and wallow sort of way that I do, but in small, controlled waves.  I can tell you that he has thought about his mom tons of times since she passed, that he has cried a little and prayed a lot, that he hates that she hurt and died, but being ever the optimist he is determined to find the shred of silver lining. 

Let me tell you, you should brace yourself, because the silver lining here sucks ass. 

There's just no other way to put it.

The silver lining in Snuggs' mom passing away is that those tests they ran days before she died, tests which she never even got to hear the results of, revealed some interesting things that led the overseeing physician to consider Multiple Endocrine Neoplasia Type 1 (MEN1) as a contributing factor.  MEN1 is a genetic condition caused by a mutation of chromosome 11q13, it is autosomal dominant, which means a child only needs one parent with the mutation to have a 50% chance of the same mutation.  At her funeral, we actually learned that Snuggs' estranged older brother had been diagnosed with MEN1 a couple of years ago, had the same tumor Snuggs has in his head, and had recently had 1/3 of his bowel resected as a result of other complications.

The next couple of weeks were messy.  We began a process to increase life insurance policies just in case this became a bigger problem.  We dealt with paperwork, thank you notes, and belongings that resulted from his mother's passing.  We requested a referral for genetic testing for Snuggs...and both kids.  We fell out of our normal steady routine and were just getting done what we needed to handle each day.

As the month drew to a close, I was baptized on Easter Sunday.  I stood before our congregation and confessed that I had spent far too many years trying to be good enough to earn God's grace, and that I had FINALLY managed to begin to wrap my mind around the depth of my depravity, the perfection of his love, and the gigantic gap between the two, that can be covered by Christ alone.  I stood before hundreds of people and told them that I was going to "keep right on rocking imperfection and rest in His perfect grace." 

I truly thought I was a mess.  I was honestly amazed at how much of my messiness I had allowed these people to witness over the last several months.  I was yet more amazed that they continued to love me and lead me to Jesus.  I thought I was a mess then.  I had no idea...but, of course, by this point you know I'm an incredibly Type A personality.  I like order, predictability, schedule, organization.  So I was thrilled when April 4th meant the first Monday in a new month.  I had a plan, and was determined to attempt a return to normalcy. 

The day began promptly at 6:30 am.  Folks, we were doing so well that day.  We were accomplishing tasks on a timeline.  Snuggs left for work at 11:30am, and on the way there received a call from a former coworker in another county.  The officer had called with a request.  Remember that estranged brother I mentioned?  "We need someone to ID his body and we can't get a hold of any other next of kin."
I think that was the point at which I completely gave up doing things MY WAY.  We made it 5 hours into my pretty little schedule before the bottom fell out.  We were on moment to moment stand by to determine if Snuggs was going to go ahead and work, or call off, load up, and head out of town to go identify the remains of his older brother.  Ultimately, they were finally able to send an officer to his brother's father's house and make contact.  Snuggs didn't have to go.
It's weird, you know, when people you are supposed to be close to die...except you actually weren't close to them.  So weird.  I'm sure there were some feelings that happened, but the next thing I remember is the next day when we learned that Snuggs' brother's 16 year old son, whom we thought had been living with his mother, had actually been in foster care since January.
That might not seem like an earth shattering fact to you.  But, let me take a minute to remind you that we had been piles of paperwork, case worker meetings, and multiple classes into an adoption process through DCS only 2 years ago. You know me, don't you?  You know my heart for kids.  You know I LOVE ALL THE KIDS.  You know I wanted to read this as a sign, right?  You know I wanted to dive in and open my heart and my home, right?  You know I cried, and cried, and cried.  You know we argued, I questioned, and I sighed the "WHAT THE Flip EVER" sigh, right? You know I found out that this boy's birthday happens to be the same day as my Buttercup and flat out lost it and dissolved into a sobbing puddle while my husband looked on in disbelief?  But, for a WIDE variety of reasons, our nephew will not be coming to live with us.  We are, however, going through the steps to be able to legally build a meaningful relationship and be involved in his life.  And yes, it breaks our hearts that there isn't more we can do without significantly endangering our children. 

Shortly thereafter, things started happening so quickly that I can't exactly remember the dates or even the order of events.  But, ultimately, over the course of 2 weeks and nearly a dozen blood draws, we got the official MEN1 genetic diagnosis, we learned that Snuggs' pituitary tumor is showing signs of growth, and that he has parathyroid tumors that need to be removed as soon as possible. 

Snuggs will tell you that he has received compliments from doctors about the organization of his medical files and information. He will also tell you that is exclusively because of me.  I have learned more medical jargon, read more scholarly journals, and filed more paperwork in the last month than I have in years.  However, there is still so much I don't understand. 

I know they can't treat the pituitary tumor until the parathyroid situation is under control.  I know that Snuggs had a very difficult decision to make regarding the placement of the 1/2 gland they will keep in his body.  You have four parathyroid glands (which are totally different from your thyroid, by the way) and his surgery will remove 3.5 of the four.  If they leave the remaining half intact, it is highly likely to regrow and require resection later.  This resection will require Snuggs to be put under, and is more difficult with scar tissue from the previous surgery.  However, if they place the remaining 1/2 in his forearm muscle, then when it regrows later, it is a quick easy, local anesthesia surgery.  However, the recovery time for leaving it in place is roughly 2 weeks, whereas recovery time for forearm placement is 3 months.  There is also a slightly higher risk of the gland failing to function at all if placed in the forearm, which would mean that the 3 months of recovery would become a lifetime of frequent medication (as in, up to every 30 minutes), and serious side effects including numbness and lack of feeling in hands and face. 

We weighed A LOT of factors, but ultimately he decided to leave the gland in his neck.  Surgery is scheduled for 11am on June 13. 

Once he recovers, the will likely run some full body scans to make sure we aren't missing anything before beginning some medication to shrink the tumor in his head.  This medication is very likely to make him quite ill for quite a long time, but we will deal with that when it happens.  There's also been some concern about pancreatic tumor, and we expect blood work results on that very soon. 

The kids are both scheduled for genetic testing July 11, which, quite frankly, just sucks.  As weird as it sounds, I was clinging to the hope that Snuggs' testing would come back inconclusive.  That would've been frustrating, but it would've meant there was no reason to test my kids because their results would've been the same.  But, of course, his results came back with a  crystal clear mutation, so now we face the 50/50 genetic game of chance.

Ultimately, I try not to think about it.  Maybe that sounds crazy, but I promise you that every single time I try to think about what the outcomes of those tests might be it goes south fast.  I'm learning A LOT right now, but above all else, I am learning that God's providence runs deeper and wider than I'd ever previously dared to imagine, and that I am totally horrible at predicting the future in light of His divine providence.  When I imagine, dream, or worry about the future, I'm placing myself in a world where I'm in charge, and I'm without God's provision.  It's not intentional betrayal, it's just the reality of the situation.  I am completely unable and incompetent to foresee the care He will provide for me tomorrow, because I am not there yet, and when I GET there, He will be right there with me in it. 

Or, as my friends like to remind me, "Manna comes in single day servings."

That's hard, you guys.  Manna for only today requires that I lean hard into God and trust that He will show up tomorrow and provide.  That when I can't even find a way to catch my breath today, He already has a perfect plan for me tomorrow. 

I am amazed at ALL the ways He has provided for us.  So many times I was frustrated with the way it seemed like my plans were ruined or falling apart. 

I get it now, Lord.  I know you were protecting, and providing, and preparing.  I know now, more than ever before, that what I *think* is best for me is a far cry from what You *KNOW* to be best for me in every single huge and tiny way.

Yet, more than any other single provision, I count our community as our single biggest earthly blessing.  I dare not tell you the number of times I have called friends in ALL STATES OF HYSTERIA.  But I will tell you that I have been completely flabbergasted that they keep answering their phones!  I mean, really, I am the absolute definition of a hot mess these last 3 months.  I have called ranting and raving, angry, sad, sobbing, confused, and needing IMMEDIATE assistance in all sorts of ways.  I am truly shocked each time they answer.  They can pretty much bank on me being some form of needy mess on the other end of the phone, and these crazy people still push that little green button and answer.  What in the actual what? 

Christ Jesus is ALIVE in these folks, y'all.  That is the SINGLE TRUE explanation.  My friends have shown up so.many.times.  They've come with food, childcare, tissues, encouragement, prayer, love, hugs, tears, and wine.  They've come at all hours of the day and night with plenty of notice, little notice, and absolute panicked urgency.  Some of them have sat in the car in a parking lot with me while I lost my composure, some have literally sat on the floor of the church and sobbed with me when I couldn't walk down the aisle for communion.  They've poured the sweet promises of Jesus into my heart, and shared a hard word of correction when I've given fear too much power.

We are getting there.  I am getting there.  It felt like a big day the day I finally felt my faith drive out my fear.  I won't lie, I still have some fear, but it's not the boss of me any longer.  I can see so clearly how God has loved us well through this mess, and I believe that He will continue to work all things for our good.  I have learned that I have a tendency to run and cower when I'm afraid of what is next, and I've learned that He is right there with me when I'm hunkered down refusing to face reality, unable to put one foot in front of the other.  He is so good, so kind, so loving, and He is so happy to hold me while I fall to pieces so that He can lovingly put me back together and push me on to honor Him today, or when today seems too much, just this very minute. 

So, that's where we are.  That's how we got here.  Aren't you glad you asked?

Please pray that our faith would continue to conquer our fear.  That's all. I briefly entertained the idea of asking for a laundry list prayer.  You know, prayer for the surgery, recovery, the doctors, my kids dealing with it all, but God has already provided for ALL OF THAT.  He already knows.  He'll be right there.  So please, join us in praying that we would simply REST in Him.  Me, especially, because if you know ANYTHING about me, you know rest isn't my strong suit.

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