“Consider it all JOY, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”
--James 1:2-4
“From underneath the rubble/ sing a rebel song” Coldplay, Every Teardrop is a Waterfall
All,
Lissencephaly. There, I said it. What a silly sounding word! It is hard to believe that this one ludicrous word has been such a shadow over Kathryn’s and my thoughts over the last twenty-two months. But, it has. It has been the “big bad” in our lexicon—so much so that we would never refer to it, except as the “L” word. Back in January 2010, we first heard that word in a cold, dark basement office of a radiologist in Dallas after Kathryn had received a fetal MRI. We were scared and uncertain about what the future held with Elizabeth--clinging to each other and most of all to God—hoping beyond hope that the problems seen in Elizabeth’s development were nothing serious , but we had never heard that word. And then…”What we see here is that her brain is not developing. There are no signs of any gyri or sulci anywhere. This is serious. There should be lots of gyri forming. We call this “lissencephaly”. It is not good.” And the hammer fell.
Now, I always hesitate to try to explain medical concepts with any deep accuracy, as I will no doubt get it embarrassingly wrong. (And, I also know that many doctors read these e-mails and snicker at my medieval attempts to describe their intricate science…there is a reason I went to law school!) But, here goes: Lissencephaly is a condition where the gyri and sulci (wrinkles in the brain) do not form. It is often called “smooth brain syndrome” or referred to as “smooth brain”. In other words, if you looked at the brain of a sufferer of this condition, it would look smooth and round as opposed to the wrinkly form we are used to. This is very significant, as the gyri and sulci (wrinkles) in the brain provide for much more mass and surface area for neurons to form. We need these wrinkles as they allows the brain to have much more density and surface area than its size would normally allow. The more surface area, the more brain mass. The more brain mass, the better the development of the brain. As brain cells only exist on the surface of the brain, the more surface area the better. I have had it described to me that if you folded up a piece of paper with writing on it, the same information would take up less actual space than a flat piece of paper. We want wrinkles—we need wrinkles. If we don’t have wrinkles in our brain, development will be significantly delayed or stopped. Significant problems can occur and neurological development is hampered. It is not a good thing at all. Further, it is not something you can “fix”. You cannot make a brain form gyri and sulci. Also, when a baby is developing in its mother, the first “fold” of the brain usually indicates that the gyri and sulci are forming. This first fold usually takes place in and around the 18th week of gestation. It is imperative that the brain begin to fold to initiate the process. We had Elizabeth’s fetal MRI at week 26. No folds were found. Her brain was not forming gyri or sucli. Therefore, we were given that word to consider: lissencephaly.
This was one of many words we got to learn after the MRI. As you all have heard many times, there was a veritable constellation of issues with Elizabeth’s neurological development found on that silly MRI. This was just one of dozens of issues. But, it was the major one. It was the one that concerned the doctors most. And, once Kathryn and I did what we were told absolutely not to do—get on the internet to research—it terrified us. It became the “L” word. It became the “big bad”. And, it became the focus of our fervent prayers.
I simply cannot really describe the next three and a half months in any way that would encapsulate the maelstrom of emotions Kathryn and I felt. Every day we tried to go on with our “normal” lives—raising our two wonderful children, get everyone where they needed to go, work, etc. And, usually, Kathryn and I could tamp down the sheer terror during the day—when the cacophony of our lives kept us from visiting that well of worry. We prayed that God would take the burden from us so that we could do what was best before Elizabeth arrived. It would do us no good to worry about it. We shared our worries and fears with our family—really only detailing the exact fears to those beloved and trusted prayer warriors who we were blessed enough to be related to. And they lifted us up like no other. But, then, night would come—the kids would be asleep and Kathryn and I would sit down to enjoy the silence—and the ever-present fear would erupt. The weight of the diagnoses would fall and we would succumb to the worry. I thank God every day I had Kathryn to hold during that time. It was unbearably hard. We prayed—no, we wailed—to God to please fix Elizabeth. To initiate the development of those wrinkles. Because ONLY He could do it. Medically, Elizabeth’s die was cast. But, we knew God was bigger than that. (And I think Einstein even said something about Him playing dice!) Every night, Kathryn and I would desperately beg and plead God to do His will with Elizabeth—to provide a miracle of perfect healing of her brain as a testament of what He could do. We put that lambswool out every night hoping for a rainstorm—knowing God could do it—but, you know, God had already done that with Gideon--and He had other plans.
There is nothing worse than a feeling—as a father and a VERY Type A “fixer” to boot—that you are simply unable to do anything to help your child. But, there I was, every night, holding my wife’s strong hand and weeping over wrinkles in the brain. The fortress of peace and control we had built around our family was crumbling—building piles of rubble around us—threatening to bury us in the remains of our false sense of security. It was an unfathomably hard time for us—daily getting up and doing the normal things of life—trying to project a strong, calm image to our kids to keep them from knowing the terrifying things we knew. That stupid “L” word. It hung in the air around us—always in our line of sight. But, God was working…He always is. While it was a horribly dark and difficult period for us—it was also a time of great blessing. Kathryn and I both grew in our faith—it became real, tangible, essential in those days. We learned that we couldn’t do this alone—or even together—we had to lean on Him fully. We struggled to find the joy in the trial—to strive for the endurance and its perfect result. Some days we were better at it than others. Some days the joy seemed very well hidden. But, through it all, we both became more bold and clear in our desire to tell others of how we were able to even stand up then. We were able to see the big picture of this time during it—and that is rare. We were learning to accept and even appreciate the rubble building around us.
So, Elizabeth arrived in April 2010 and astounded the doctors in myriad ways. She was a testament to God’s amazing and miraculous ability to teach us about relying upon Him and that his perfect Will is always exactly what we need—no matter the package or the seeming “limitations” set up by man. Kathryn and I have tried to tell that story as much as we can, because it is glorious. Like I had said, God was working in that tough time to form Elizabeth exactly as He wanted to. We love her exactly as she is—no exceptions. She has beat many expectations and continues daily to show us that the grim discussion we had months before in that basement was merely an imperfect person trying to describe a masterpiece being painted. Now, many of the things discussed in that basement were correct. But, the thing that wasn’t immediately present on that MRI film was the hand of God at work. He will not be limited. He has a bigger narrative to tell. He will use whatever tools are necessary. And He will do it on His timeframe.
So, we fast forward to a couple of weeks ago. Elizabeth has been doing really very well. Ever since she had her second MRI (in July), she has been eating well and often. She is gaining weight a bit and looks healthier (at least to this Dad). She is much more vocal and has no problems expressing herself. She has started a second set of physical therapy as well as speech therapy (to help with her swallowing). She is responding well to this new activity and seems to be gaining strength. It is slow going, but we are progressing well. Her hemangioma has healed (a.k.a. LaserFest 2011) and we are enjoying her regained love of sleeping on her stomach. So, we went to see her pediatrician for her 17 month check-up/well check. (As an aside: her pediatrician has been simply wonderful through all this. He is a superior doctor, and a great person to boot. We consider him almost family!) Anyway, Kathryn was in the office and our pediatrician came in. “I’ve got the results of the MRI y’all had a few weeks ago. Did you all go over it?” Kathryn said that we had received a very basic initial report the day of the test, but had not gone over the full report. “Well, let’s talk about few aspects of it”, he said. Kathryn bristled. Understandably, we are a bit sensitive to MRI results and discussing results. We remember all too clearly the rubble we were buried under the last time we talked about MRI results. And, then, our pediatrician shared with Kathryn that the MRI report was interesting in that the radiologist had reviewed Elizabeth’s film (and then had done it again, and asked for several others to do so) only to find that this picture of her precious brain contained multiple distinct wrinkles. Yes, wrinkles! Gyri and sulci! In fact, the report (which we have a copy of to review in case we begin to disbelieve it!) states that there are significant enough signs of gyri and sulci on the surface of the brain that the radiologist cannot, in all candor, call Elizabeth’s brain lissencephalic! So, she has wrinkles on her brain--not as many as we would like—but, they are definitely there. We were floored. Simply speechless.
God heard our tear-filled prayers those many months ago. There is no other explanation. He folded Elizabeth’s brain when He wanted to…at a time when it simply could not be done—except if He wanted it to. And, then He waited. Waited to show us the miracle until after we had already seen so many others. Waited until Kathryn and I had moved on down the road of our journey with Elizabeth where that dreaded “L” word held less terror in our lives. Waited until Kathryn and I were in a place where we could appreciate the miracle for exactly what it was—and the importance it held. You see, Elizabeth hasn’t changed since we found out about the MRI report. She still is amazing and wonderful. She still has hurdles to overcome. Nothing has changed. But, it was a simply beautiful statement from God that while He was forming sweet Elizabeth with attributes and abilities we didn’t even know to ask for—preparing that little diva to emerge ready to blow away expectations in tons of ways—and preparing her parents to listen for the miracles great and small—He was also simply and profoundly answering the fervent prayers of His children. He was listening to the rebel song amidst the rubble. He knew that if Kathryn and I had known of these wrinkles at the time of her birth or soon after, we would miss the amazing story of Elizabeth. The “L” word lost its power when overshone by the perfect creation of Elizabeth. It became just a word…a meaningless diagnosis that did not define who Elizabeth is. It was relegated to its proper place in our life.
And, we needed to go through what we did (with the “L” word in its falsely magnified state) to allow God to teach us lessons about faith, strength and true hope. You know, many people have told Kathryn and me, while trying to comfort or encourage us, that God never gives us more than we can handle. While I know this was meant well—it’s just wrong. God always gives us more than we can handle. Because the lesson is to give the excess to God. We silly humans simply cannot handle the things we are given—they seem overwhelming because they ARE! But, if you give things over to God and let Him carry the burden, it is truly amazing what you all can do! So, God always gives us more than we can handle—it’s what we choose to give up that speaks to our success. Only after all that—after we had imperfectly dealt with the existence and reality of the diagnosis, and come to understand the peace that God had given us about it—did God pull back the curtain to let us see the deeper miracle within. Only after Kathryn and I realized that Elizabeth didn’t need to be “fixed”—that she was perfectly made by God—did we get to see that God had indeed moved as He saw fit. Only when we could see that an answer to our pleas as prayed over those three months wouldn’t really cover the fear or calm the storm, did He expose that He had done as we had asked—and more.
It is also hopefully a clear and unambiguous example to each of you who have spent so much time and effort in prayer over Elizabeth that your prayers have been heard. Kathryn and I are unable to really express in any coherent way how much each of your thoughts and prayers mean to us, but maybe this little vignette can serve to speak to you in a way we never could that there is hope in those prayers—there is power in petitioning God. We have seen it and continue to see it. And our prayers continue to flow for Elizabeth—but now, hopefully, we can focus them on things that will not only help her, but will serve to tell the bigger story as well.
Kathryn and I hope that these little updates serve to show each of you in some little way how amazingly encouraging this journey is. There is always sunshine behind every cloud. There is constant joy in the journey. Everyone has stuff—your own personal “L” word that you try to tamp down or fight, your obstacle to overcome—the situation is in no way unique, though it may come in a unique package. But, lift up your voices in a rebel song beneath the rubble, and you will be heard. And then you will be blessed by the perfect answer…all in good time…wrinkles and all.
Matt, Kathryn, Caroline, Michael and Elizabeth Rowan
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