Friends,
Doctors are wonderful. Doctors are smart. For the most part, doctors have the ability to encapsulate so much complicated medical knowledge in a way that we plebian commoners can understand what is wrong with us. They help us heal. They suggest healthy options. Doctors have a vaunted place in our society—and rightfully so—as our modern day oracles of health. And, over the past six weeks, these same “oracles” have stood before Elizabeth and shrugged their collective shoulders. She completely confounds the best of them. She amazes and confuses them. She does not follow any textbook, study or diagnosis. She has been blessedly, brilliantly, and boldly exhibiting the miracle of her creation for them to study—and probably laughing at their looks of confusion and wonder. It’s been a busy six weeks, but a pretty cool time of seeing God’s “logic” among the furrowed brows and shrugging shoulders.
First on the tour was a follow-up appointment with our super-duper neurologist/geneticist (rare disease guru) in Dallas. Elizabeth had had labs taken to send off to the University of Chicago Genetics Lab to perform some pretty intensive genetic testing to see if there was some sort of anomaly that would help us find out what was causing the developmental and neurological delays. Now, let me step back just a bit and explain this “taking labs” thing. Basically, you have to take Elizabeth’s blood to send off to test. For reasons not completely clear to me, they apparently want to take as much blood as humanly possible to accomplish this. Elizabeth is also very adamant that no one should take blood from her. Ever. She is notoriously hard to even find a vein to accomplish this with. This time, the “pro” at Children’s Dallas shrugged off Kathryn’s and my warnings that it may be harder than normal to find a vein, because she “does this all the time, and has seen everything”. Yeah, right. Well, sister, you haven’t seen anything like E, and well… just go ahead and poke her and see what happens there, Needle Ninja. Sure enough, no blood--and one EXTREMELY ticked off diva. How’d that work out for you, pro? Once again, my wife kindly suggested that they needed to take blood from the top of her hand, but Madame Sticks-a-Lot just said that she knew better. So, she called in some middle linebacker to assist her and once again tried the “pro” sticking method. Well, that was a dry hole and E was moving into full plate-throwing meltdown mode. At this point, Stab-itha expressed her confusion at why this wasn’t working. Kathryn snapped, “well, if you would try the top of her hand…” Finally, the tech rolled her eyes at us hayseed parents who obviously didn’t know the first thing about blood drawing, and just to placate us, decided to try our crazy method. Well, what do you know?! Blood flowed forth. Gaw-llee, I guess us backwoods parents aren’t as stupid as she thought. Mollified, she gave E a princess sticker, E gave her a look that would fell small animals, and the blood was off to the lab.
A few weeks later, we received an e-mail from our geneticist with the lab results. In it, he said that the tests had ALL come back completely normal—there were no mutations. Further, this last round of tests was the absolute last set we could do, because we had completely tested each micro-array of genes that are available. In other words, we had reached the “end of the Internet”. There were simply no more tests we could do. So, in essence, there was no indication of any mutation or anomaly in her genes. Our super-duper neurologist/geneticist was simply stumped. He said that until medical science was able to come up with some new and more intensive tests, we were simply done with trying to find a genetic link. Now, this is both frustrating and awesome. It is frustrating to us, because we would really like to have a diagnosis—some diagnosis—to work with for E. We know she is unique and awesome, but we would really like to know that someone has seen something like her before to know how best to care for her and what pitfalls to look for. But, no such luck. God has other plans. The result is also awesome when you look at it, because it simply and clearly points to the wonderful way God created this little lady. I have said before that we are certain he created Elizabeth perfectly—we are just trying to figure out what “perfect” is. We had performed every test in such amazing detail and with such specificity that you should be able to see what was going on with her. But, God, in all His wisdom, has hidden the map pretty deep-knowing that we would reach our technological and scientific limits well before finding it. It is almost like He is once again saying, “ Matt and Kathryn, trust me. I know what I am doing and what I did. Don’t look for the problem. Just acknowledge the miracle.” Pretty cool. We have to quit searching so hard for the “answer” so that we can stop and see the wonder of having to totally and completely depend on Him for guidance. We have to know that this is Elizabeth, not some amalgamation of syndromes and mutations. Somehow, it makes this so much easier-- and at the same time exponentially harder—to know that we may never know what Elizabeth “has”, but can know with definite clarity who Elizabeth “is”.
So, later that same week, we had a yearly check-up with her pediatric neurologist (different neurologist than above—this one is in charge of prescribing her seizure medications and monitoring her epilepsy). In all candor, this was more like a fifteen month check-up, as we really had not been medically stable enough to get her there for this appointment earlier. We arrived and Kathryn went back with Elizabeth, while I waited for them with the other two kiddos. (The older two kiddos went with us this time which was great, as Elizabeth pretty much worships these two and is very upset when she is not able to be around them all the time.) Our neurologist is very nice and a good doctor, but he is a bit socially…awkward. He is undoubtedly brilliant, but does not have the basic tact a regular human has when having a conversation. Not a big deal, just the way it is. So, he entered the room and greeted Kathryn with, “I’m really glad to see Elizabeth. I wasn’t sure she was going to be around this long.” Yep, ladies and gentlemen, the doctor just expressed his shock that Elizabeth was still alive. This appointment was going to go GREAT! He explained that, since Elizabeth is on some pretty heavy and strong anti-seizure medicine, her liver would have normally shown signs of failure. In fact, he added to his sunshine explosion by saying that he had never seen a child with only some of the things Elizabeth has live this long and exhibit no signs of liver problems. And, yet, here we are, Doc. E’s liver is fine and she has shown no signs yet of problems. He was needless to say shocked and stumped. We truly know he meant well, but it was a bit of a downer. Then, Kathryn and I started talking and realized how—looking at this from another angle--this visit was really a huge encouragement. God once again was telling us through the stupefication of the doctors that Elizabeth is purely His and in His care. He is watching over her, and I really don’t think He cares too much about what is normally expected medically in this situation. That is cool. So, we left that visit with another doctor shaking his head in confusion, and with us nodding our heads in acknowledgement of His grace.
The third and final stop on our medical mystery tour occurred two weeks ago. We once again went to Dallas, but this time we were going to have the dreaded full-body MRI. Friends, this procedure was one that Kathryn and I had been dreading for months. An MRI of a child under any circumstances can be hugely stressful, but in our case, we were just now able to do it because Elizabeth had just now been medically stable and big (weight) enough to handle it. As she was just a baby, they were going to have to fully anesthetize her and that process brought with it some risks. Our neurologist said that sometimes anesthesia can serve to “re-boot” the brain in neurological cases such as this. Great, just great. Further, they were going to do an MRI of both her brain and her abdomen, which took much longer and involved injecting color contrast dye into her abdomen. We’ve already discussed how awesomely great Elizabeth is with needles and IV’s so, needless to say, that made us doubly nervous. But, this test was necessary for a couple of reasons: (1) It would show us the architecture of her brain and would maybe let us know if we were going to be dealing with any other issues (other than the ones we already knew); and (2) would show if she any internal hemangiomas that were ulcerating like the one on her tummy. (oh yeah, we are still dealing with that, too. Elizabeth gets her laser treatments now about every 10 days!) Anyway, there was an obvious need for this test, but Kathryn and I had just a bit of trepidation about it. So, we finally went to Children’s and got our sweet little Elizabeth ready for the test. When we got there we were told that she was going to be in the tube for the MRI for about 2.5 hours! Oh, goody. So, we waited with her until it was time for her to go back there. I will honestly say that handing her to that nurse was one of the hardest things I have had to do. I would like to admit to each of you that I was confident that God had her and would protect her, but that would be a lie. I had allowed that always present fear to creep up and take over. My mind swirled with silly fears: she was finally doing so well, why are we doing this now? What if the anesthesia erases all the work we had done to help her? What if she had a seizure in the machine? Would the doctors notice? Etc. Etc. I only tell you all that to show how quickly and how easily you can let silly fear creep in and erase any peace you may feel. It’s normal, but it shouldn’t be. God had her the whole time and He was in charge. I need to just let go a bit. I guess I’ll always be learning that lesson. So, with two and a half hours to kill, Kathryn and I wandered about Children’s trying to keep our minds off the test. Riiiight. But, God used that time, too, for His glory. We had a wonderful, honest, hard, ultimately hopeful conversation about Elizabeth and were able to really just sit and talk to each other (without the kids and the constant pulls of life). We expressed our fears and our hopes, took hard realistic looks at where we were with Elizabeth and where, in all likelihood, we would be in the future. These conversations are all too rare anyway, but that one was really nice. (I would have liked for it to have been in a more atmospherically pleasing place than the basement cafeteria, but hey, you can’t pick the location sometimes.) We went back up to Radiology and finally—finally—Elizabeth was given back to us. The MRI had gone flawlessly and once Elizabeth woke up, she showed no negative side effects to the anesthesia. God once again showed us that He had her and was caring for her. (Really, by now, it seems like He’s hitting us over the head with a tack hammer about this, but we seem to need it) And, guess what? (I bet you can see this coming a mile away…) the radiologist sent the results to us, and, of course, there were no internal hemangiomas (praise!) and Elizabeth’s brain showed no surprises about its formation. (She does still have significant neurological issues, but there wasn’t anything that was new or surprising!) Once again, God says to us, “Listen, guys, I appreciate the Herculean efforts here, but I’m not going to give you all the medical answer. Elizabeth is a testament to My creation. She tells a story of perfect grace in an allegedly imperfect vessel. Quit trying to figure Me out! I’ll tell you when I need you to know something.” (Not sure if He actually says that (especially invoking a Greek god and all…)but hopefully you get my point.)
So, here we are. Sixteen months later, we are still unable to classify Elizabeth on a human medical scale. She is sixteen months old, is 11.5 pounds, is about the normal size of a three-four month old, has significant developmental delays as well as neurological limits. But, she is simply amazing. She is a fighter like no other. She is fully aware and very responsive. She laughs, she smiles, she screams, she cries. She knows people by their voice and responds accordingly. She has made up several hand signs to tell us what she needs (and did this on her own). She loves to be with her brother and sister, and is nothing short of astounding. She can communicate a plethora of thoughts with a single look (just ask Stab-itha!), she has her likes and dislikes just like everyone else. And, she is loved fiercely by all of us. She may be a mystery to the medical community, but to God, she is His vessel to share of His perfect grace. She is a constant source of inspiration to Kathryn and I. We cherish our time with her and look forward to see how her story can hopefully in some small way encourage others to look beyond the world’s supposed limitations on us and exhibit the gleeful rebellion of pessimistic diagnoses. Elizabeth is unique, but her struggles are not. We all have “stuff”. We all deal with stresses, confusion, disappointment, sadness, and anger. We all have our own circumstances that seem to be uniquely “challenging”. But, hopefully, in our updates on our Divine Miss E, you can see that everyone’s “stuff” is really God’s method for showing us uniquely how He is in control. It’s not always easy to see the method in the supposed madness, but is always rewarding when you do.
Now, be not deceived: we know with clear and unaltered accuracy the prognosis and possible likely outcomes regarding Elizabeth. But, I hope you all will understand if we take those prognostications with just a bit of a grain of salt. So far, no one really seems to know anything about her, except her Creator. And He loves her perfectly. So shall we.
Our best to each of you and our continued humbled thanks (which are not enough) for your constant and vigilant prayers.
Matt, Kathryn, Caroline, Michael and Elizabeth Rowan
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