We can never be sure when or how the Lord is going to cross our path with that of another individual, someone completely unexpected. During some downtime at work about a month ago, I found myself browsing the most recent news updates on the website for the Tuberous Sclerosis Alliance. This website has proven helpful in reading the latest features and research updates, as well as discovering which states and cities have a group of volunteers represented. Kentucky doesn't currently have an alliance, but Ohio has an extremely active volunteer base. In my search, I came across a news article about little 2-year-old named Meghan. As with many cases of TS, Meghan's family had no knowledge of the condition until she began having seizures. Tests showed that little Meghan had growths on both her brain and heart. The family, both Meghan's parents and grandparents, have been heavily involved in volunteer opportunities and raising awareness about what is still a very unfamiliar condition to many.
Since first reading this news article, I have been corresponding with Meghan's grandmother, Cheryl, via email. They have provided information about the alliance in Ohio, including dates of the events that are scheduled for 2009. While I am still uncertain as to the possibility of attending these events, I have been so surprised at the amount of families involved in the cause! You learn so much about the love of closeknit families, and all who are involved can be encouraged knowing that they aren't alone. In our most recent email correspondence this past week, Cheryl asked that I provide for her a detailed account of my story. She seems to be the type of individual who welcomes insight from anyone willing to provide it in regard to TS, and I was more than happy to give her a glimpse into what the journey has been like thus far. I am not sure at this point in our "conversation" where she is at in relation to the Lord, so I presented my story in a way that gently, and directly, emphasized how I have seen the Lord's hand in everything that has occurred thus far.
From a very young age, maybe around the age of four, I had a red "birthmark" on my face. My mom tells me that it started as a very tiny spot on my right cheek, as if there was just a blood vessel close to the skin, and it grew until sometime when I was in elementary school. My "birthmark" felt like a signature mark on my face as I saw it in every picture taken of ,and it was a spot noticeable to everyone. There were numerous visits to doctors throughout my childhood, from family practitioners to dermatologists, who stared in awkward silence at this skin abnormality to which they couldn't assign a known cause. One doctor called it a mole (right), and another pulled his monster medical book from the shelf and flipped through the pages for what seemed like hours. All that to say we never received an answer or suggestion for where to go for specific assistance.
It wasn't until college that I started thinking more seriously about the other skin problems. The patches of bumpy skin on my lower back were nothing like those on my face (I now have two areas on my face, the one on my cheek and one that developed under my jaw line). Those areas on my back spread very gradually, but it was still very obvious that they were, in fact, spreading. There was also the question of why I had patches on my arms and legs where there seemed to be no pigment in the skin. My mom became increasingly more insistent that I visit her new dermatologist in the Dallas/Fort Worth area in hopes of getting a more informed opinion, and my boyfriend (now husband) agreed that it would be a good idea.
My mom accompanied me to her dermatologist in the fall of 2004. I didn't have high hopes for being told anything new. Within minutes of meeting the dermatologist, he glanced at my face, back, fingernails (definitely a first), and told me that he was almost certain of the diagnosis. He also asked to schedule another appointment to have a biopsy of one of the spots on my back. After all of this was done, he informed me that all signs pointed to Tuberous Sclerosis (TS). I understandably didn't know at the time what that meant exactly, but there was definite relief to finally have an answer.
I moved to Louisville, KY in June 2005, and scheduled appointments with a dermatologist and neurologist as soon as my medical insurance went into effect. Both doctors recommended a CT scan of my brain and chest (lungs), as well as an ultrasound of my kidneys. Through personal research and consulting with them, I found out that these are the target areas checked for any internal growths caused by TS. I will never forget the phone call I received from Dr. Donovan, the dermatologist, with news of the test results. She informed me that night that a spot had been detected on my brain. Of all the places for there to be tubers, there was one on my brain. While growths related to TS are not malignant, there was no way to tell if this spot had remained the same size all these years or if it was continuing to grow. Since I hadn't had my first scans until 22 years of age, they wanted to follow-up with more tests a year later to see if the spot had grown. (There were a few other minor spots and calcium deposits, but only one spot that was the cause for concern.) The second round of testing in 2006 involved an MRI rather than a CT scan in order to provide the doctors a more detailed image. Much to our relief, there was no indication that the spot on my brain had grown, so my neurologist suggested that I wait a couple of years until the next MRI. At this point, my doctors have suggested a scan of my brain every two years unless growth is indicated, and a scan of my lungs and kidneys every five years since there are currently no concerns there.
Those are all of the medical details to date. I have been overwhelmed by the vast amount of information doctors have been able to provide, particularly considering how new TS still is to the medical field. I have seen God's hand at work in this since the first steps taken three years ago to get actual answers. One such example of His involvement in all of this has to do with the simple fact that I moved to Louisville when I did. Not only did I unknowingly move to what is a huge medical hub, transitioning from blank stares to concrete answers and real help, but my neurologist here is an acquaintance of Dr. Neil Franz at the Cincinnati Children's Hospital. Dr. Franz is a pediatric neurologist and head of the Tuberous Sclerosis Clinic there in Cincinnati, primarily focusing on children since TS is seen overwhelmingly in children rather than adults. I visited the clinic and Dr. Franz in 2006 and 2007, and he provided some of the most current information there is available nationwide. I was absolutely overwhelmed by his level of knowledge in this area, and saw myself as fortunuate and truly blessed to have been linked with one of the leading doctors in the U.S.
To be perfectly honest, though, when I stop and think through my struggle with TS and the reality of living with such a relatively unknown condition, I typically don't think of myself. In the process of researching TS and gathering as much information as possible, my husband and I have been faced with an even more sobering reality. Because of how I have been affected by TS, because of the genes that have been affected, any children I have biologically will have a 50% chance of inheriting the condition. And to take it a step further, within that 50% chance, any children I bear have an 80% chance having a much more severe manifestation. I learned that this large percentage of children are are born wtih seizures or some degree of mental disability. For someone who has a deep, nurturing desire to bear my own children, this came as a blow for which I wasn't exactly prepared.
The thoughts of family planning cross my mind at least once a month. Being faced with a condition that affects me individually is one thing, but knowing that I could pass along a potentially debilitating condition to my own children can make my stomach turn. However, there are things I have learned since that first official diagnosis in 2005 to remind me that none of this has occurred by accident. It is no accident that I married a man who was himself adopted, and there is no question in our minds that adoption is a high probability when it comes to building our little family. Little did I know just a few short years ago that the Lord would provide a man with whom I am like-minded in such issues, and one who would lead me in truth and not in my emotions. When I am prone to despair, I know that he is going to bring me back to reality because of the way he already leads our home just six months into our marriage.
On a personal note, my perception of myself, both emotionally and physically, has been directly challenged. The Lord brings even these conditions into our lives for the ultimate purpose of finding our only hope in Him and clinging to Him alone in this life we have been given. I look at myself in the mirror every morning and night, and I would be lying if I didn't admit that it can be a struggle. Even with a husband who is more supportive and encouraging than I could have ever hoped for or imagined, I still spend many moments in front of the mirror only seeing the imperfections. The Lord is gracious to use these difficult moments to remind me that He created every detail, every "imperfection" of who I am. The question is not whether I am beautiful, but why I am beautiful. I am who I am because He created me according to His own will, and He has redeemed me for His own glory. I am so quick to forget such earth-shattering promises and the hope that is Him alone, but that's why I can only focus on that which is true. If I believe the lies while looking back at my reflection, it doesn't take long for me to downspiral. But when I cling to Him and that which He has said is true about His purpose in creating me, the imperfections don't seem so imperfect. The truth is that we live in a fallen world, and with that will inevitably come pain, sickness, disease, disaster, and ultimately, death. The question I have to ask myself as one who has been redeemed through Christ is whether or not I reflect Him. In the context of this world, is He evident in and through me? That is my daily prayer, and those who trust in Him are never driven to despair.
The family has also put together a website for the specific purpose of providing updates on Meghan's development. She has certain therapists she meets with on a regular basis, and her family provides both insightful and encouraging information regarding all they are learning during this process. Through Meghan's website, I found that the family has linked to numerous other families that are doing the same thing for the same purpose. I had to make myself get back to work after all of my new discoveries because I was so mesmerized by all of the many websites I was coming across. Who would have thought that reading one news article would lead to this? I am excited to network with others, but I have been especially touched by what I know of precious little Meghan's family. I pray the Lord is evident and at work in all of my correspondence with them...