My family has a tradition of going to the lake each year for the fourth of July. My mom’s birthday is on the fifth, and the lake is one of her favorite places to be, so this holiday usually calls for gathering up the family and spending some time on the water.
Exactly one year ago, my parents rented out a big house on the main channel in Guntersville, Alabama. We did all of our usual things: cooking meals together in the kitchen, sitting outside on the dock in the sun, skiing, long cruises on the boat. For me, time at the lake often results in some internal reflection. Besides reconnecting with family, there’s usually time to just think. At this point one year ago, God was moving mightily in my heart and in the heart of my husband. We had been trying for almost a year to have a baby. We were considering what our next steps should be, and I felt very strongly that we were to pursue adoption. I remember sitting on the porch swing with my mom one of the mornings we were there, telling her about how we had been speaking with a couple of adoption agencies and researching our options. I was genuinely excited about what the next year would hold, knowing that this desire to either find or conceive a child of our own was a desire straight from the heart of God, and that He was softly, yet urgently telling me that this was the time.
I thought, “Yes! This is exactly what God must have in store: molding our hearts to pursue adoption- to take in a child who needs a family. He must be shaping our former dreams into something altogether different than what we had expected.” He was certainly doing something different than what we expected, and even this “new” plan that I thought He was playing out wasn’t His plan at all. Oh, how our God is full of surprises and how naïve we can be. It makes sense, in hindsight, that at a time when I was so desperately trying to figure out what His plan was for us at that specific time, He instead showed me a better way: to watch, pray, and joyfully look for the open doors as they come. It was a long time coming, but at this point I had mindfully given the desire to have our first baby up to Him. During that weekend at the lake, unbeknownst to us, sweet little Caleb was already inside of me.
And what a year we had lying ahead of us.
I am increasingly grateful that we aren’t given the ability to see into the future. It would take away so much of the realness of life that we live in as we go about our day, moment to moment. Knowing what is to come might make things a whole lot easier on our end, but there would be no growth. It seems obvious, but it helps sometimes to remember that two of the greatest displays of God’s goodness toward us are our free will to make our own decisions in this life, and our inability to see beyond the ‘now’. Both result in downfalls, disappointments, difficulties… but the alternative is a life with no lessons learned, no surprises, and no adventure.
Of course, in a perfect world we would have unity with God at all times, which comes with all of the adventure and joy imaginable. In the interim, while we still have the enemy to contend with, we must face each new day and its uncertainties as they come. As children of the one true king, we have the immense privilege of knowing that our plight is not in vain. Even though it almost always feels like we are taking a shot in the dark, or just getting by day to day, it’s comforting to know that He is so much greater than our circumstances.
With this truth in mind, we can comfortably follow His lead, listening for His voice, as sheep to a shepherd. His voice is loving, powerful, protecting, and familiar. He leads us by still waters and makes us lie down in green pastures. We have nothing to fear because his rod and his staff are there to point us toward the next destination; whether it be a place of rest, a new endeavor, or a storm we have to pass through in order to make it to where we are destined to be- that place where we are our very best selves.
This has been a year of weaving through the valleys of storms and mountains of blessing. Our little family has expanded from two to three, and our lives have been turned upside down with the joy of a precious new life to take care of. For me personally, I’ve experienced some of the greatest highs and lowest lows of my life simultaneously. Needless to say, I’ve been tired, both emotionally and physically. I know Tucker has been too.
In brief, I experienced some health difficulties during my pregnancy that were new and strange. Without publicly throwing myself a pity party, which might make me feel better but would do no good for anyone, I will attempt to tell my health-story and where I stand currently. A few months before I became pregnant with Caleb, I began to have some sinus trouble, which turned into multiple ear infections over the span of many months. I came to find out that pregnancy can exacerbate these problems, so my assumption was that I must have developed some sort of allergy or sinusitis that worsened as the pregnancy went on. I was treated by an ENT, had tubes inserted, and ended up with a range of issues that resulted in some pretty significant hearing loss and pain throughout the day, every day. Going to bed with a hot pack, and pain radiating through my sinuses and jaw became the norm, particularly in the evening hours. I just did what I could to get by, as we so often do when things like this come up. Being pregnant brought me so much happiness in the midst of the difficulties, and life was busy with work and preparations for the baby.
I learned what it was like to be nearly deaf for the span of a couple of months. I was able to laugh it off most of the time, but I came to the realization fairly quickly that life is a whole lot harder when you can’t hear. Most every social situation, my ability to teach, lead meetings, etc. were all affected, and I realized how very much I take my hearing and overall health for granted. In the mean time, I received positive reports at each prenatal doctor’s appointment, as Tucker and I took in all of the newness and disbelief that comes with a first pregnancy. I watched as my belly grew bigger while our precious baby filled up more and more of that monitor during each ultrasound.
During the final weeks of the pregnancy in particular, we felt the love and support from friends and family pour on as we prepared our home, hearts and minds to welcome this new life into the world. My coworkers were wonderful to me. Even though I would come in, 8 months pregnant, with pain in my head and ringing in my ears, they made sure I was taken care of and that I got breaks when I needed them. The children were precious, too, and were patient with me during those days.
Caleb was four days early, but the labor process was much longer than anticipated (another story for another day). By the end of those few miraculous and exhausting days in the hospital, we were holding a healthy, beautiful baby boy in our arms. The joy that filled our hearts the day we brought him home was unexplainable.
He has been a dream. As I continue to battle unknowns and new health problems, little Caleb has remained a source of goodness and purpose for me. Everything has been new, fun, exciting, and tiring all at once. I didn’t realize that it was possible to love a little human as much as I love that boy. It’s a different and new kind of love, one that comes from the very core of my being.
When he was about a month old, I started to notice that my knees hurt when I used the stairs. Around the same time, I developed a pretty nasty double ear infection, which was discouraging as I had hoped that once the pregnancy was over, my chronic sinus issues would magically go away.
I began to see new specialists along with our primary care doctor: some of the kindest, most intentional people- somehow we had a family connection to each one (with the exception of my rheumatologist), and I began to have tests run. Allergy tests, scopes in the nose, ear cultures, a CT scan of my sinuses, blood work. My joint pain progressed to the point where it was difficult to get out of bed in the morning, and certainly kept me from being able to take care of our baby the way I wished I could. Around Easter was probably the most difficult time for me in this journey thus far. I was in a significant amount of pain throughout the day in both my head and my entire body, felt lots of extra fatigue, had trouble getting around, and was not sure why. I didn’t know how much longer this would last, and felt guilty for having to rely on everyone else to make sure Caleb was well taken care of. I wanted so desperately to just be a “regular” new mom, and probably pushed myself too hard at times when I should have been resting. Our entire family jumped into action and offered to drive up to Nashville on any given day to keep him while I had an appointment, or to just be with us at home. Our local friends did the same, and we were overwhelmed by the support. I even got to have my beloved sister-friend Stella stay at our home for a few days while she was here visiting from Kenya.
As for Tucker: he has always been a protector and has never failed to serve me with determined love, but during this time, his devotion to his little family emerged like never before. On a lot of the more difficult days, I failed to see how much my personal suffering weighed on him. He was (and continues to be) on the go at any given moment making sure that things are being taken care of around the house, and that I have everything I need.
Without going into all of the nitty gritty details, thanks to the tests mentioned above, I first found out that I had mastoiditis and sphenoid sinusitis (infection within the mastoid cavities behind my ears at the base of the skull and in the back sinus cavity behind the nose). Those are two of the most difficult areas to clear infection, so I anticipated possibly having to have surgeries to clear those out. Next, I discovered that I have no common allergies that would have been causing these problems. So as my joint and sinus problems continued, I saw our wonderful primary care doctor who ran a multitude of blood tests. She ended up referring me to a rheumatologist, suspecting rheumatoid arthritis. He listened intently to all of my symptoms, and thanks to his knowledge and intuition, I was given an additional blood test for vasculitis. This came back positive- I had two antibodies and one protein present that led him to make the diagnosis of Wegener’s granulomatosis, or as it’s now called granulomatosis with polyangitis (GPA).
I am incredibly fortunate that ALL of the doctor’s I have seen have been knowledgeable and have led me to these answers. Wegener’s is a rare form of autoimmune vasculitis that usually affects the sinuses, lungs, joints, and kidneys. It manifested in my sinuses first, and from all appearances, has not negatively affected other organs. There is one place on my lungs that is being monitored, but even that is not something that I am worried about at this point. From everything I have read about this disease, I was extremely fortunate to be diagnosed when I was.
I have been on steroids and antibiotics for a few months now, and am taking weekly injections of a stronger medication to hopefully suppress my immune system just enough to provide relief. I did my third injection a few days ago, and feel that it is already making a difference. Last week, I took a few steps backwards, which was puzzling, but this week has brought feelings of relief, regained energy, and a feeling of normalcy that I haven’t had in quite some time. I believe that once you begin to be reminded of what you ‘should’ feel like, after being sick for some time, you have such a greater appreciation for feeling ‘normal.’
In recent days, I have done my best to appreciate the times when I am not in pain, when I can sleep normally, walk normally, hear normally, and on and on.
We spent this past weekend and the beginning of this week at the lake once again for the fourth and my mom’s birthday. Yesterday, after bouncing down the stone steps at the back of the lake house, I realized that I didn’t have to hobble down them. I paused right where I was, and tears rolled down my face. Even if I were to wake up and have trouble getting out of bed tomorrow, I knew that at that moment, I was fine. I felt good. Progress is being made.
I now have an even greater respect for those who have struggled with chronic illness for some time, and even more so for those who are in the midst of a battle with a sickness like cancer. I have found that illness, especially one with unknowns tacked onto it, can be like a dark cloud that engulfs you and makes you feel isolated, sad, and helpless. Being in that cloud long enough can almost turn you into a different version of yourself- one without the ability to think beyond your current circumstances. When one can overcome that, even for a short time, it is a miraculous and respectable thing.
So here I am, having learned that I am capable of mustering up strength from a source outside of myself. I have been stretched further than I ever have, and yet I am still me. My spirit can’t be shaken, even though I’ve let that dark cloud block my vision on more days than I’d like to admit.
Every day might continue to bring new challenges. Whether my health continues to get better or if this is only the beginning of a long road to remission, I am meant to move forward. My first step was returning to writing for the first time in a long time. Next, I will determine to mother, teach, love, and live to the fullest as I hold the hand of my Savior, who is the victor over any sickness or darkness that this world may throw my way.
Leave A Reply