All:
It is hard to believe that it has been over three months since I updated everyone on our favorite little diva. We have not been sitting idly in that time, I can assure you! We like to describe our house as "wonderfully chaotic" and, in some instances, I think we may undersell that. Elizabeth honestly relishes the frenetic energy. She absolutely loves nothing more than to be sitting in her "recliner" (bouncer) watching Caroline and Michael rush around with whatever project/hunt they are presently on (most recently it was a chase where Michael was threatening to have Caroline smell his shoes! (I know! It's like Norman Rockwell up in here!)) Elizabeth cackles constantly with those two. Plus, she has decided that her voice needs to be heard in the cacophany as well. She is usually squeeling and vocalizing to great extent --trying to have her say about the events. Caroline and Michael just love it when Elizabeth starts "talking". They frankly encourage it--and if I didn't secretly love it as well, I would be a bit more on top of squelching the protests.
Elizabeth is no shrinking violet, and has absolutely no problem letting everyone within earshot know exactly how she feels on a subject. As an example, recently, I apparently woke her up from her nap to change her diaper and do a couple other "upkeep" type things, and I was subjected to her wrath. She screamed at me, and shot me some looks that made me feel two inches tall. She was inconsolable. Yet, when Kathryn entered the room, she cooed like a little angel and gave her one of her show-stopping smiles. I'm no fool, so I handed over the diva to her mom and went on about my business. However, whenever I would enter the room again, Elizabeth would interrupt her sweet cuddling and cooing with Kathryn to let out a little vocal protest directed at me. I was properly rebuked. While that example is funny and completely normal for a little kiddo, I will fully admit that that incident and others like it fill me with an unspeakable joy. You see, there was a time not so long ago (January 2010, in fact) when Kathryn and I sat in a windowless basement office with a radiologist who had the emotional depth of an amoeba--and were told, while staring at an MRI image of our sweet unborn child--that our precioius third child would most likely not survive the birth process, and if she somehow did, she would be a lethargic, unresponsive vegetable with no quality of life. Then, as if to add an exclamation point of insensitivity to that bombshell, we were summarily escorted out of the office to process this little nugget of sunshine on our own. So, now, when I see our little gift squeeling, cooing, and marinating in the happiness of being with her family--expressing her displeasure with a ferocity and her joy with equal passion--I just sit back and thank God for His eternal blessings, for being there to hold us up as we left that basement room, for being so faithful and loving to know that even though the human doctor had proclaimed Elizabeth's limitations, He had full and complete knowledge of Elizabeth's greatness and was not bothered with some doctor's opinion of His creation. It's an unbelievably cool reminder for Kathryn and I of God's perfect and unfailing plan for Elizabeth. Preach on, Elizabeth! We cherish every sound.
We are fast approching an important day in our family--April 13. That will be Elizabeth's first birthday. While each birthday of all of our kids is special (in fact, it seems that Caroline and Michael begin a countdown to thiers about six months ahead!) this one will have a particular resonance for us. It is hard to believe it has been a full year since we first met Elizabeth. So much has happened. We have learned so many lessons, been blessed with so many little insights into God's wisdom, His perfection of plan, His grace, His strength, His faithfulness, His provision in times of difficulty, and His preparation of us to handle things we couldn't fathom. It kind of makes our heads swim. We have been inordinately blessed to watch our family grow exponentially with the arrival of Elizabeth. Caroline has matured into a such a caring, sensitive little lady. She has retained her silly loquaciousness, her giddy love for all things new, but has tempered that with a strength I can barely fathom. She is completely unfazed by her sister's seizures--but, takes the time every single time to pray for her as they occur. It is the most touching thing I have ever seen. It is so completely Caroline and such a beautiful expression of her understanding of who is in charge of Elizabeth's well being. Caroline is my hero in many respects and I love seeing the young lady she is becoming. (but, she is still restricted from dating until she's 40!) Michael has assumed the role of court jester in our family with his usual zeal. Michael does nothing halfway. He always plays with Elizabeth and makes silly faces, funny voices, and generally does anything to make Elizabeth laugh. And laugh she does! She lights up when Michael enters the room--clearly expecting to be entertained by him. But, Michael is also a soft, gentle spirit with her. I have enjoyed watching him quietly hold Elizabeth holding her hand and being at peace. He fiercely defends Elizabeth when anyone questions what is "wrong" with her. (She is just a baby, he says, duh!) He is her knight in silly armor. He is a very cool kid and we just love him to peices. (But, seriously dude, we've got to work on those shoes!) So, we ALL will enjoy her birthday in a few weeks. We will celebrate Elizabeth's joyous first year--filled--as everyone's years are--with unspeakable joy and bouts of pain, of lessons learned and those yet to come, of God's consistent Hand holding ours as we traverse. (And a special piece of her birthday cake will be sent to that radiologist who pronounced her limitatons...stick that in your MRI and study it!)
The last three months have also brought some very interesting visits with new doctors for Elizabeth. We continue to go on Elizabeth's Magical Medical Mystery Tour, where we usually travel to Dallas to have various specialists in various areas stare in wonder at Elizabeth and express their confusion about how she is who she is. We have, frankly, started to find all of this rather funny--we get some enjoyment at watching doctors of all kinds just shrug their shoulders. It also gives us a chance to share with these learned people the real reason why she is such a blessed dichotomy. It forces Kathryn and I into our "witnessing" mode pretty quickly. Most recently, we had been referred to a Rare Disease Pediatric Neurologist and Geneticist at Children's in Dallas. He has a very specialized practice where he only sees the most complex issues. He has a two year waiting period to even see him for a consult. But, thanks to the nicest Geneticist I have ever met (and we've, amazingly, met plenty) we got in to see him in only two months. So, two weeks ago, we traveled up there to see this super-duper specialist. In all candor, Kathryn and I were a bit cynical about how this would go. We have seen dozens of doctors since Elizabeth arrived and each one usually just shakes their head and just stares. No idea how to proceed. We understand the confusion, but also rest easy that our Great Doctor is in control. So, we fully expected this Genetic Guru to be the same way. But, God is pretty funny. He sets you up to think one thing and then, with dexterity, pulls the rug out from under you to show that He is running this show and has myriad surprises left. We met Dr. Pasqual and he immediately shocked us. He was very nice and friendly, genuinely interested in us and sweet with Elizabeth. (usually, we have found that as you progress up the pyramid of medical specialites, the doctors get more and more cerebral and intellectual in presentation. Their ability to communicate is somewhat lessened. They are undeniably brilliant, but they lost a bit of the bedside manner in the exchange. I'm not complaining, mind you, just observing.) But, Dr. Pasqual was easy to talk with. He spent over two hours with us (unheard of!) and went over all aspects of Elizabeth's medical diagnoses. He put pieces together from her voluminous medical record that we had never thought about before. And then, when Kathryn asked if he had ever seen anything like this, he answered. "Well, yes and no. I have seen some of these things, but not all together. But" he paused, obviously thinking back "I think I have read about a child with similar things from a study in Spain in the 1970's. In fact, I have talked to the doctor who wrote that study (he's in his 90's now) and I will have to call him and see if he has some additional insight." As innocuous as that may sound, to Kathryn and I it was amazing. First, I have trouble remembering my computer pasword...much less reading some study from the 70's in Spain. Plus, he was in contact with the obviously retired doctor and wanted to find out more. While we don't assume that this is dispositive of the issue, it was an enormous relief to know that God was putting this doctor here to help us find out more. It was almost as if God was saying: "See, guys, I've got this. We're moving forward a bit. Don't worry. Let me put these people in your path in my time frame." It was a wonderful moment for us.
Now, let me explain a bit more why this is big for us. Elizabeth has been perfectly created by God with some neurologic issues. Her development is not conforming to any chart or expectation (except God's!) We struggle daily to get her to gain weight. She eats her super fortified mush all the time, but we fight for every ounce we can get! We think that there is obviously some metabolic issue involved, but those are notoriously hard to ascertain. E tipped the scales most recently above 10 pounds and Kathryn and I nearly jumped for joy! As you all also know, she has frequent and significant seizures (which are mostly controlled by medication now!) and further is taking a bit longer to hit certain milestones (sitting up, etc.) We are truly walking into unchartered territory with Elizabeth. We have no medical guideposts with which to follow or previous cases with which to compare our progress. Elizabeth is doing great and we are so proud of all that she accomplishes daily, but it is very hard for us parents to know where we are headed or how we will get there. We are truly breaking ground with her. God is guiding us and we have cherished the lesson we are still learning about having to give up our fear and worry about the future and lean entirely and fully on His wisdom. We have nothing else to rely upon. (And we, in a twisted way, kind of love that!) So, when God gives us someone who may allow us to see a glimpse of where we are headed or some guidance on a small aspect of Elizabeth's make-up, we are almost giddy with excitement.
Anyway, later in our visit with Dr. Pasqual, he called in two other neurologists who he worked with to meet Elizabeth and see her. They were also very nice and kind. We visited with them, and one lady was talking to us while examining Elizabeth. Elizabeth reached out and held her finger while she looked at her. The neurologist smiled and continued to talk with us. Elizabeth never let go. Soon, this lady looked at us and asked how we were doing. (We never get that question!) Kathryn, my simply amazing wife and steel magnolia of epic proportions, immediately started to share the reason why we weren't curled up in a corner wimpering like idiots. She boldly witnessed to these three neurologists--sharing that our strength and peace comes from our faith in God and His provision for us. She then told them that God would never leave us or Elizabeth and that Jesus was the reason we could all have hope for the future--whatever the outcome. It was a beautiful moment that I will cherish. My sweet wife, who hates any attention or focus on her, boldly just told them all about it! And, in a moment of awesomeness, I got to witness three neurologists of amazingly high academic learning in tears--hanging on Kathryn's every word. Unbelievably cool. My wife rocks! I looked down during this conversation and Elizabeth (that little miracle) just kept holding onto that neurologist's finger with all her might. It was as if she was in her own way making sure that doctor heard everything her mother was saying. (And, if you all don't already know this: Kathryn is pretty much the most amazing individual I have the pleasure of knowing. She is a stunning, strong, spitfire of a lady who daily teaches me to be a better person. I'm still not sure why she decided to marry little ol' me, but I'm honored she did!)
After Kathryn had finished, the neurologist holding Elizabeth's hand had the biggest smile on her face and she looked up and said "Well, Miss Elizabeth is quite a rock star!" Elizabeth let out a little squeal and let go of her hand, apparently happy that she had been recognized for her rock star status. It was a really wonderful moment. In sum, that appointment was exactly what Kathryn and I needed to encourage us that this medical journey was not some Sisyphean effort--where we roll the stone of Elizabeth's myraid diagnoses up a hill to only have the unique nature and mystery of thier combination cause it to roll down again. In other words, God put those doctors in that room to be an encouragement to Kathryn and I to continue to search for a medical route to explain the miracle we daily see.
So, we are now back in our old routine--wonderful chaos--feeding Elizabeth and watching her mature and grow at her pace--seeing the awe-inspring ways that this sweet little person is pointing people who meet her to the wonder of her Creator. We have our good days and our bad days, but we are constantly at peace because of each of your cherished prayers for Elizabeth. We remain truly humbled by your interest in Elizabeth and our little family. We thank God every night for the friends, family, and acquaintances who have been such an essential and encouraging part of this journey. We remain in constant awe of God's blessing, His faithfulness and His promise. Now, we just need to find a way to contain this rock star diva and get her to eat her mush!
Matt
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