... this post has been a long time comin' and I already know it's going to be long (seriously, way long. Sorry bout that.) I wanted to wait until Crabman's birthday or something where it would make a little more sense to post it but it just seems so appropriate now with all of the attention on Rick Burgess' family. Plus, I've had about
four times the usual traffic on here since posting about Bronner's situation that I didn't want to squander any of these extra readers. If you haven't done so already, PLEASE take/make the time to listen to Rick Burgess' message at his son's memorial. It's long (parts
1,
2, and
3 for a total of approximately 30 minutes) but it could change your life.
Anyway, here's sort of my tie-in to this story with the disclaimer that I no way equate my past experiences with the Burgess experience in hopes of precluding any nasty comments. The reason I feel
led to post this at all is because I've had similar Holy Spirit-filled moments that I KNOW that I KNOW that I KNOW were not figments of my imagination or emotional outburts from the heart. I can 100% understand how Rick Burgess stood up there at his son's
funeral because we are weak but HE is strong. So here's my story, less famous and less dramatic (unless you lived it) in hopes of pointing everyone who may ever read my words to
JESUS because whether Auburn, Alabama, our even Tennessee (smiles)... I love you all and want you to have what I have in my life: Freedom in Christ!
It's hard to find a place to start and even harder to figure out what details are mundane, unnecessary, etc hence the title "Bear with me." As many of you know, I have an autoimmune disease called
lupus. Feel free to ask me anything you want about it. I'm no lupus advocate but I'm not shy about it either. Anyway, I have lived a relatively healthy life and while I always appreciated this reason to acknowledge my own mortality, it basically did not interfere with my life beyond making me extremely tired. When I was pregnant with our firstborn, Ricky Bobby, we ran some tests at my request and found out my ANA (a benchmark lupus lab) was still sky-high but I was already 5 months' along so not a lot was done. Despite the fact that I now realize I was probably preeclampsic when I spontaneously delivered him (after a UA football game that I was at-- a story for another time), Ricky Bobby has always been relatively healthy. So about a year and a half later, I found out I was pregnant again, which was a good thing because we always wanted our kids close in age. Things were a little different this time and by now I had an "official" lupus diagnosis so we ran extra labs and did an ultrasound at 8 weeks. Heartbeat: Good. Labs: Bad. On Father's Day 2002 (a Sunday mind you), I got a call at home from my rheumatologist himself saying that some of the labs were sky-high requiring some additional testing as the pregnancy progressed. We never got that far as in July (the 13th to be exact) a trip to the ER brought the news I had always feared... we had lost the baby. I had not miscarried in the physical sense but there was no heartbeat on very in-depth ultrasounds so our baby was gone. And I was far enough along to warrant a D&C. Bad, bad days as I wondered what I was doing when the baby's heart stopped beating, where I was, was it a boy or girl? Still hard to think about that baby turning 5
this month had things gone as
I had planned. Nonetheless, in something that can only be attributed to the Holy Spirit and not me in any way (as this is something completely contrary to my own "bratty" disposition), I blurted out "God's will, not mine" in the ER exam room. I remember they gave me a Xanax to take since I was upset. Of course I was upset... I lost a baby and no pill makes that better! I remember the nurse asking me why I was crying as I waited for my D&C. Cause it hurts my heart, that's why! Still, I can honestly say that I wasn't as physically or mentally disraught as I could have been and I honestly felt God was asking me to give Him a chance with another baby one more time.
So after waiting until I had sufficiently passed my original due date (I was weird about not wanting this to be a "replacement" baby), we found out we were expecting again in September 2003. We had a whole "game plan" for this pregnancy that included a meeting with a perinatalogist (high-risk specialist), my rheumatologist (lupus doc), and my OB. Everything went smoothly (well, other than the twice-daily heparin shots to my tummy) and we had 8 (yes, e.i.g.h.t.) ultrasounds with 5 non-stress tests, including the ultrasound and NST on what turned out to be D-day! The baby looked good, I looked good (or at least significantly better than when I was carrying Ricky Bobby... I'll have to scan and post those pics for your enjoyment at a later date. Can you say "swoll"?) So after a neighborhood cookout, I sat on the potty (cause that's what preggos do... they pee, A LOT) and discovered that either I had a hole in my bladder or my water had just broken. Either way, I thought I needed medical attention. As a funny sidenote, Plumberboy thought I was crazy and even managed to convince me I might be crazy during the 10 minute drive to the hospital. It took one of those "litmus tests" by the L&D nurse to convince him otherwise. Too funny as I was already strapped to monitors and fully admitted to the hospital! I think he was in shock since Crabman seemed to be coming about 3 weeks early. Anyway, after a very short and noneventful delivery (much like Ricky Bobby), Crabman was here and beautiful if I do say so myself. I don't know what he APGAR'd but he seemed fine. We all got to hold him and then the nurse took him up to the nursery for vitals, etc while they wheeled me to my room. I threw up on the way (mundane details, I know) but once I got settled into my new room, the very sweet nurse who took Crabman came right in. She informed me that he needed a little oxygen to pinken up and would be sent down to us in a little while. Well, minutes turned to hours and before long it was obvious something was amiss. I was quickly starting to panic so Plumberboy took Polaroids of him (wasn't that long ago but still, no one had a digital camera in the family yet) and brought them to me and eventually I had the emotional strength to go see him in the special needs nursery. I waddled down there and what I saw took my breath away. Crabman was panting like a dog... literally. He was already skinny and it looked like he was about to suck himself through the table. He had a big astronaut looking oxygen hood around his head and if we touched him or talked to him, he seemed to struggle more. Still, we went down there as much as we could and by the end of a long first day, my bruised up body was so swollen I couldn't put my legs together in the shower. I was assured over and over by the medical staff that he would get better as just needed to turn the corner on prematurity. Afterall he was, as they stated, "
a wimpy white male" so he should be better soon. To the point... he wasn't and after two days Plumberboy, with the help of my sister and parents, insisted we transfer him. We didn't care if it was to Children's or just a larger regional hospital with a NICU but someone needed to come get him. Let me tell you, that transfer was tough.
This thing came and we couldn't even ride with him. It was a long, long hour to the new hospital with indescribable relief when we saw it parked in the loading bay. Once there, it didn't take much time at all to get him assessed (first miracle, literally a miracle) and in less than an hour the neonatologist had come out to inform us that Crabman's lungs weren't working, not because he was premature but because his heart wasn't working. All we were expecting was a blast of
surfactant, not expecting to hear that he might need
ECMO, a
trip to Boston, or
the things they do when your heart is really bad. They agreed to keep him at this hospital and treat him with what they had, which was steroids and a ventilator. This news literally knocked me down. All the internet research I had done, all the precautions we were taking... THIS was worse-case scenario and I'm an already paranoid person, people! So yes, it appeared that Crabman was afflicted with the infamous
neonatal lupus syndrome, which other than miscarriage (been there, done that) or stillbirth, is the worse complication that could happen. And it's rare too--very, very rare. Lovely. Also, the NICU waiting room was horrid. It was dimly lit and full of people we didn't know and uncomfortable chairs. (Holy Spirit reminded me that during Jesus' time on earth, he frequently didn't have a place to lay His head.) Luckily we had a few nurses show us some mercy and we hunkered down for the rest of the day and night. Over night, Crabman was moved from a regular ventilator (the kind you see on ER that seem somewhat peaceful) to an
oscillating ventilator that rather looks and sounds like a washing machine. And, uh yeah, it "breathes" for your kid at 200 breaths per minute. So our 4-lb baby was strapped to this quasi-Maytag overnight, without any notice, because the conventional vent wasn't doing the job. Things looked bleak and I literally cried out to God, "If he's goind to die, take him soon because I can't stand this agony." And I meant it too. Again, that's all the Holy Spirit and none of me because my fleshy heart wanted to rip the heart out of myself or anybody for that matter (except Ricky Bobby) to make him better. I'm telling you, if I had the power to have made him better at that time
no matter the cost, I would have made some terrible decisions (can you imagine The Father's agony as Jesus hung on that cross?) But the Holy Spirit required of me submission, especially since there was nothing I could do anyway. I'm sure in God's eyes I looked like a bratty 4-year-old threatening to give Him a spanking or something silly that little ones do when you, the parent, know good and well they can't. Anyway, the minutes crept. Literally. That was a loooonnnnnnggggg night. But wouldn't you know that after that prayer of unwilling submission on the guidance of the Holy Spirit, Crabman turned the corner. The steroids were working, the dobutamine was kicking in, and the next morning his cardiologist (Dr. Rula Balluz, one of the greatest docs ever!) explained that she thought Crabman would pull through. It was still a long journey with 17 more days in the NICU, including 4 more days on the ventilator (a dozen or so collapsed lungs and a partridge in a pear tree.) There were ups and downs along the way with lots of prayers and tears spent over his bed. I can't describe what a miserable place that NICU is but I assure you it is
not God-forsaken. I can only speak for myself (though Plumberboy would probably agree) that God the Father was there with me every step of the way, with every breath I took as well as Crabman. There wasn't a single day that went by that I didn't have a "mini miracle" occur (in other words, things that could be explained away but they were entirely too coincidental--especially considering just the sheer volume of these events-- to not be considered miracles.) There are literally too many things for me to go into them here (ie
this) but one other thing that really sticks out to me was the next to last night of his NICU stay. We were all set to go home with bags packed in the van, mandatory classes attended, and nothing left in our "room in" room but his carseat on the bed when one of the docs walked in (after he had skipped his hospital duties to have supper with his family) and informed us Crabman was
not going home. His labs were all of the sudden showing up abnormal and now they're thinking infection, leukemia, they don't know. That news was almost worse than the initial news in the NICU. This time I was hysterical so the Holy Spirit literally led me to the Gideon Bible tucked away in the nightstand and guided me to the story of Jesus in the Garden of Gethsemane. Right then and there I held tiny Crabman in my arms and prayed aloud (on nothing but the leading of the Holy Spirit as there is not even one fiber of this in my being) for if God willed, please let this cup pass from me. I agonized for over an hour just repeating loudly (and probaby incoherently) for, if God willed, this cup to pass from me. I could not believe I would have come that far to have it all yanked out from under me. I felt like
Abraham with Isaac. Why would God ask this of me? They ran the labs again and slowly they seemed to improve. Not good enough to go home but I could keep Crabman with me... I could keep him with me. So, to the point (cuz I know this is super duper long, but what do you care...you're probably at work!), Crabman was released from the hospital the next day and released to go all the way home the next day. We went to the doctor every couple of weeks for a while for echocardiograms, EKGs, and bloodwork to see if he was improving. Let me tell you, 3+ years and counting, Crabman has never looked back. There's NO TRACE anything was ever wrong with him. And this is well-documented... I have the EKGs in hand to prove it. In hindsight, I realized that once he started getting better, they couldn't wean him off the vent fast enough when he was in the NICU. A few weeks after the dust had settled, God revealed to me that I just had witnessed a modern day
healing of the paralytic. You remember the guy lowered down from a hole in the ceiling by his friends for Jesus to heal? Then Jesus looked at him and said "son your sins are forgiven." And everybody there was all "what? His sins are forgiven?" Then Jesus knew their thoughts and asked them "What's easier to say? Your sins are forgiven or get up and walk?" Then He said--now pay attention because
THIS IS THE WHOLE POINT OF MY STORY-- "
So that you may know the Son of Man has the authority to forgive sins on earth: (Talking to the paralytic) Get up, take your mat, and go home." And the paralytic got up, took his mat, and went home. You see, I've struggled lots of times when I hear of someone losing a child (and I've known some personally) as to why my boy was healed and others were taken. And with this whole Bronner situation I've had another realization courtesy of God's word and messengers.
It was not about me at all. It wasn't so I wouldn't know the heartache or because Crabman is just such a delight that the world needed to know him (although that might be true... wink, wink!) it's because it was HIS WILL that he survived that situation and it's my obligation to tell people about Jesus...that through my
own experiences I know He's real, which means He's coming back someday (and as some Baptist preachers might say, "boy is He mad!) He'll do whatever is necessary to reach you and He wants you to turn to Him, knowing He has the authority to forgive sin and He holds in His hands abundant, eternal life. Thus, I don't want the story of Crabman to go untold and I'm glad I didn't get to vote as to whether or not it happened to me because if given the choice beforehand, I would have never chosen it for him or our family. But contrary to every bone in my body, God's will be done on earth as it is in heaven. Amen.
Your "reward" for making it all the way to the end... Crabman in '08:
They're both my favorites...
Posts
