“ The waltz is a silly, useless activity. After ceaseless spinning and turning, religious adherence to a repetitive beat, and the unfortunate requirement
to make small talk of questionable wit, you just end up back where you started—slightly winded and dizzy.”--Mikhail Brӧm
Friends,
While Mr. Brӧm sounds like a real party-killer, I have found this quote running through my head of late in relation to the continued journey Kathryn and I have been on with our beloved Elizabeth. I’ll attempt to explain a bit. Elizabeth is now approaching 15 months old and is nothing short of astounding. She continues to simply amaze so many people-medical and otherwise-with her stubborn refusal to be boxed into a diagnosis or treatment plan. I really think that Kathryn and I have almost become numb to the consistently flabbergasted looks we get when we meet a new doctor and they look up from Elizabeth’s voluminous (and, probably, depressingly bleak) chart and see a smiling, cooing, gloriously happy blonde diva. It must be frustrating for them to have spent so much time learning about all those conditions, syndromes, and mutative symptoms—to have an encyclopedic knowledge of the ways the genetic process could go “wrong”—and be presented with someone who is clearly defiant of all of these learned treatises. I am starting to think that is the way God likes to work—with His plan in focus He will use whomever He desires to make His point: “ I am in control. I have this child in my arms. I will give her the strength to tell my story in a new and unique way—so that you may see Me in her existence.” Sometimes, I fully admit that Kathryn and I get caught up in the pure chaos of daily living with our three wonderful kids (school, tee-ball, soccer practice, swimming lessons, physical therapy, feedings, homework, doctor visits, etc., etc.) that we miss that message. Most days we see it and thank God for it, but sometimes we don’t. That’s the journey, I guess. 1,2,3...1,2,3…
Anyway, Elizabeth continues to grow—slowly, but surely. For all of you who have been so stalwart and unbelievably kind to pray for Elizabeth on her weight gain, we thank you. It is working! (Please, don’t stop! We will be constantly fighting this battle with her!) She is tipping the scales now at almost 11 pounds, and her appetite is steadily growing. As many of you know, we literally fight for every ounce with Elizabeth—we have spent much of the last nine months constantly stuffing her precious face with any and all possible combinations of rice cereal and high calorie yogurt, supplements, cream, vegetables, fruits, formula, olive oil, and anything else that looks fattening! One day, I got home from work and Kathryn met me at the door looking excited and almost jumping up and down. “I found some yogurt at the store!” she exclaimed, “It has 200 calories in ONE little bottle! And E likes it!” I look over to our little wonder in her bouncer—bib around her neck—face covered in blueberry yogurt—grinning like a Cheshire Cat. I immediately turned around and left to go buy as much of the yogurt as I could. You can’t waste discoveries like that! (That yogurt is now a foundational ingredient in all of her meals.) We find ourselves reading labels of everything we buy at the store now—not for nutritional information, but to find the highest caloric foods for E—it’s our new “normal”. So, in sum, Elizabeth has turned a corner on her eating. That is completely due to the laser-focused intensity and hard work of Kathryn. She simply refuses to give up and has found ways to make Elizabeth eat. And, all that hard work has paid off. When we went to her pediatrician, we had Elizabeth’s blood work done and she was right on target nutritionally—that meant that the dreaded g-button (a feeding tube in her stomach) was not needed. It’s the little victories, I guess. 1,2,3…1,2,3…
But, we should have known that once you tamp down one fire, another would spring up. And, so it did. About four weeks ago, Elizabeth began to have trouble sleeping—in other words--she simply wouldn’t! That was undeniably odd. After a couple of sleepless nights, we began to realize that her crying seemed to be from pain. (and, this kiddo is no sensitive soul, so if she was wailing from pain, we knew it was significant!) We finally figured out that what was apparently hurting was her hemangioma. Now, for those of you who may not know, Elizabeth has a hemangioma (raised red mark) on her left lower torso about the size of a silver dollar. It appeared after she was born, and while it was unusual, every doctor said that it was not painful for Elizabeth and would eventually involute (deflate) and reduce in size. We were told to not worry about it (riiiight!) and since it didn’t seem to bother Elizabeth, we did shift our focus to other more pressing issues. To show you all how this tapestry of miracles God has given us are unquestionably related, this same hemangioma is located exactly at the site where we would have to insert a g-button (feeding tube) if necessary. Because it is there, there are some significant complications that would be involved in getting a g-button inserted. So, as we were fighting ceaselessly to not get a g-button anyway for her feedings, I called it ”God’s stop sign”. Anyway, this hemangioma was now ulcerating and she had multiple ulcers on the surface that were obviously painful. This just destroyed Kathryn and I. We literally had to sit holding Elizabeth for a week while she screamed in pain and there was nothing—absolutely nothing!—we could do for her. It was awful. Our prayers became more and more desperate to just alleviate her pain. (Yes, we were seeing doctors about it during that time, but all agreed that we needed to see if the spot would involute before taking any further measures.) I will fully admit that at this point Kathryn and I began to wonder why God had caused Elizabeth to have so many obstacles to overcome in just 14 months. It just seemed horribly unfair and mean. Every time she would bust through a seemingly impossible obstacle, another higher and worse one would spring up. As she wailed in intractable pain, we joined her wailing as we tried to make sense of this sudden, painful, and completely unexpected change. Our prayers focused on simply bringing relief to her. We weren’t sleeping—Elizabeth surely wasn’t sleeping!—and everyone was on a razor’s edge of frustration and fear. 1,2,3…1,2,3…
In the middle of this maelstrom of happiness and joy (it was a Wednesday), we received a phone call. Dr. Pascual (the super-duper neurologist who had taken an interest in Elizabeth and was doing intensive genetic testing on her) wanted to see us and Elizabeth in his office on Friday (two days later). The nurse making the call wouldn’t tell Kathryn why he wanted to see us or what the visit was about. Great. Just great. Our minds swirled with the possibilities. We are no fools. Usually when a doctor calls out of the blue and wants to see the patient on short notice (especially a doctor that is notoriously hard to get into anyway) it’s not to just check and see how everybody is doing. Since we had been without sleep for a week and were trying to console an inconsolable child, our thoughts went more quickly than normal to the bad possibilities. ( In all candor, we try very hard every day to be positive and be filled with the hope we know to be present through God’s grace. He has supplied with an inexplicable peace about this whole process so we normally rest in that. However, this week was not a “revel in heavenly peace” kind of week!) So, we cleared out the day and let Caroline and Michael be with their grandparents (and those two kids are such troopers! They took the opportunity to have a fun day with a joy and excitement we loved to see! (though, in all truth, they probably wanted to escape the screaming-in-pain filled house run by those two worry-warts!)) and began a stress-filled drive up to Dallas. We got to the office and saw Dr. Pascual. Despite our worrying and stress, he merely wanted to see Elizabeth to get her signed up to be a part of the Human Genome Project and also to recommend a full body MRI. (While we appreciate all that he does, we could have seriously been forewarned about the subject matter a bit! I mean, a little note on the chart that this was a visit about future diagnostics would have been awesome, sir! But, then again, I wouldn’t have learned the lesson to lean on God and trust that He is in control. Man, I just hate life lessons sometimes!) Apparently, Elizabeth is going to be one of the first in our region to have her entire human genome mapped. This will help many down the road to be able to find and locate mutations and prepare for what is to come. (On a side note: While I know many of you are somewhat hesitant about the whole human genome mapping stuff for a host of reasons, I would encourage you to read a great book about the process and its founder, Dr. Francis S. Collins, entitled “The Language of God”…it is truly fascinating and very faith-affirming!) Also, Dr. Pascual looked at Elizabeth’s hemangioma and said what we had been afraid of for a while. He was adamant that we needed to start laser treatments on it to stop the ulcerations. These treatments could make the ulcers worse (you basically zap the ulcers with a laser to encourage them to close up…it has a possibility of causing more pain and making them open up more…(sorry, doctors, if that is a bad description, but it was what this silly non-doctor dad heard!)). So, we faced a big decision—do we have the laser treatments and risk significant additional pain for Elizabeth and possible increase of the problem, or treat it as we were and hope that the topical treatment would cause it to involute? Yeah, those are the fun Friday night decisions we get to make now…don’t be jealous! 1,2,3…1,2,3…
At our most desperate point (isn’t that usually when God works His best?!), our dear and trusted friend—who also is a dermatologist—and who had been treating the hemangioma for a week or so to try to avoid having to do the invasive laser treatment--finally did the perfect thing for us. She was talking to Kathryn about all of this and Kathryn was presenting all the back and forth we were having. Then, our friend put everything in perspective. The topical stuff wasn’t working (insert sound of Elizabeth’s constant screaming in pain here), we needed to do the laser treatment to give Elizabeth an option. We owed it to Elizabeth. And, plus, we can’t live in fear of possible bad results when we have our loving God supporting Elizabeth. The bad results may happen, but when there is no other option, the decision is made. That did it. Kathryn and I snapped out of our indecisive funk and made the call: Laser it! So, we did…that afternoon! Kathryn and I were complete messes—emotional and sleep-deprived. I’m sure we presented quite a sight at the doctor’s office. Elizabeth went in—screaming in pain and expressing her displeasure in her best diva manner---and came out of the room after treatment quiet and calm. Apparently, with Elizabeth, God doesn’t do things subtly. Since that treatment (and we will have to have more to complete the process) Elizabeth has not been in any ascertainable pain. She has been kicking and cooing, smiling and very alert. She interacts with Caroline and Michael and is back to our routine of barely controlled chaos. She’s back. All in all, this treatment (this leap of faith) was an unqualified success! (Many, many thanks to the talented doctor who performed this procedure! It may not have seemed like much to you, but it was a huge thing for Kathryn and I!) God taught us something through all that: Trust Him. Now, don’t walk into decisions uninformed or check your discernment and curiosity at the door…He wants you to use those attributes He has given you. Question things. Learn the risks. Weigh your options. But, don’t marinate in the decision and be afraid to move! At some point, you have to decide—make your best educated decision and trust…truly trust…that God is there to get you through whatever happens. He doesn’t guarantee a wonderful blessed outcome, but He does guarantee a strong hand to hold you through whatever happens. Elizabeth has taught us that we can’t just rest on our laurels and hope for the status quo…we have to prayerfully constantly move forward. The journey is just beginning! 1,2,3…1,2,3…
So, like that silly waltz, we return to the place we began--the quote from the beginning of this e-mail. (If you’ve stuck with me this long…) During this last few weeks I have felt like Kathryn and I were just spinning around—walking through needlessly complex machinations with doctors and diagnoses, genetic findings and mutations, feedings and seizures—dancing to a tune that seemed both pointless and hypnotic. It seemed everywhere we turned we found more questions that would lead to more questions that would lead to befuddlement. Like that quote, we were moving with religious adherence to a repetitive beat—not thinking that we could do anything else. We became frustrated at the conductor of the music—God—and why He would make us dance this silly dance anyway. We didn’t understand it. The more we danced the more we just returned to the place we began—confused and scared, slightly dizzy from the experience and with no forward motion seen. We have such a precious gift in Elizabeth and we desire so deeply for her to flourish as we think she should that we lose sight of the fact that Elizabeth is not dancing to the same music. In fact, she has her own dance to learn. God is crafting a perfect and lovely tune for her. He has already done it. And she is dancing to it! We just need to stop and watch the glory of the performance! So, you see, that quote earlier by that cynical, bitter man is simply wrong! The beauty of the waltz is not about where you end up…it’s not about the end of the dance…it’s about the process of dancing. The joy derived from participating in the actions. We should not become frustrated with the conductor, we should be appreciative that we can participate and enjoy the beauty of the moment. I’m not getting all granola and hippie here, but the point is that we should not judge the event by how it ends. We should rejoice in the journey and praise God that we have music to hear. And, so our family hopefully will do just that. Elizabeth’s journey…and our precious time along it…is to be joyfully recounted and used to point anyone wanting to join in the dance to the conductor and the genius sound He has created. So, get down and boogie, sweet Elizabeth, we can’t wait to see what you can do!
Our best to each of you and our continued thanks (which are not enough) for your constant and vigilant prayers.
Matt, Kathryn, Caroline, Michael and Elizabeth Rowan
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