Day 27 & 28: Wrestling With Pain

Warning: ***The following is a bit graphic, so if you are an enormous babychild you may want to skip this first part.***

Several years ago, after having my second daughter, I had excruciating pain on the right side of my abdomen. I could feel a relatively large mass just below my rib cage and it was not only strange and worrisome, but it seemed to be the source of my discomfort. The pain wasn't constant, but when present, it was often unbearable. At one point, after a long car ride, I was in so much pain I started feeling quite dizzy and nauseated. When Tom finally pulled into the driveway I was so eager to get out of the car that I immediately opened the door the moment the car stopped moving. It was too late though. As soon as my door opened I passed out onto the driveway. I still remember "coming to" and Tom saying, "I don't know what happened, I put the van in park and looked over and you were gone!." It was all very mysterious and a touch dramatic. 

To my frustration, my doctor couldn't find anything abnormal. The ultrasound and CT scan results were totally normal. No mass. Nothing inside me that was out of the ordinary. I was asked a lot of questions that made me feel that doctors believed that these might be psychosomatic symptoms, or postpartum depression. Still, the pain persisted. In waves. It was sometimes there as a dull ache, and sometimes it was sharp and acute. Desperate for answers, I started paying very close attention to the pain. What positions caused me the most pain? What actions or movements were more comfortable, or less. Was my body reacting to something that I wasn't paying attention to? When was the mass there (sometimes visible!) and when was it gone? I would make Tom feel the mass when it was there so he didn't think I was crazy. This went on for close to two years. 

In this process I determined that sitting for any amount of time was the most painful. I went to yet another doctor with my observations and she listened to me and got creative. She did an ultrasound, but instead of just lying there on my back, she had me lay on each side. She had me sit up, she did an ultrasound on my abdomen while standing up and contorting myself in all different directions. 

And ya know what, she found it. Wanna know what that mass was? It was my kidney. Except it was floating around my body instead of staying up where it belongs. When I was laying down it would swim up where it belonged and was, therefore undetectable during a CT or typical ultrasound. She sent me for a kidney function test, and also a sitting and a standing CT and the images were clear - my right kidney was dangling below the protection of my rib cage. When I was sitting, my rib cage would jam into my kidney, restricting blood flow and causing a great deal of pain. My right kidney was functioning at just under 20%. The official diagnosis was Nephroptosis or floating kidney.

I ended up having a surgery called a nephropexy - where they litterally stitched my kidney up to my back muscles. To this day it feels super weird to run or jump on a trampoline or do handstands and cartwheels. Not just because I am 36 or 37 and am probably too old to be participating in these shenanigans, but because I can actually feel my kidney tugging on my back muscles. No matter how much time passes, no matter how much I choose to live an exuberant life, I can always feel the pain tugging inside me.

That is grief. 

I have always lived an exuberant life. I am loud and spazzy and embarrassing. I bust out handstands and loudly sing (incorrect) lyrics in my unfortunate singing voice. When I make people laugh it's like a power-up on a video game for me. Laughter makes me louder and spazzier and more embarrassing. I am like a toddler up past their bedtime. I am not unhappy. I am full of life and I have so much joy and am able to dance with such reckless abandon that it might be my spiritual gift. 

Still. No matter how much time passes, no matter how much I choose to live an exuberant, full life... I can always feel the pain of grief tugging inside me. It doesn't stop me from doing cartwheels. But it's always there.

For Day 27 we were supposed to have Frank over for dinner and a cake presentation. If you don't know who or what I am talking about, you might want to watch this video:

We ordered the cake and I have to give a shout out to my friend and neighbor Maggie for understanding how computers work and for using one to create the bird and milk carton graphic that we put on the cake. 

Sadly, Frank and his family were not able to come. He was under the weather, so we have to reschedule. :( We were very sad that we couldn't present him with his beautiful baptismal cake, but I don't think he'd mind me telling you that when we connected over the phone for the first time he said how touched he was that Tom remembered him and his kind actions so many years later. We look forward to reconnecting with Frank soon. 

For Day 28, we livestreamed (I don't really know what live streaming is, so I might be using it wrong.) our girls' final cross country race.

It was the county championships and Annalee and Marlie did awesome, both breaking personal race times. We haven't yet received the official results for the whole race, but we do know that Annalee (our 8th grader) came in 6th in the county!

This is my blog, and I reserve the right to shamelessly celebrate for a sec because I am beyond proud of my kid that can run a 5:53 mile (and smokes the boys on a regular basis.) ;) Our family in Michigan and Chicago don't get to see the kids' events so using Facebook Live to make a fool of my spazzy, exuberant self while recording their events is a gift to our family. 

We also bought the girls a county race shirt. These shirts are ill-fitting and over priced and parent confession: the girls usually buy their own merchandise if they really want it. They do not ask us to buy stuff. It's a reflection of who they are, and their perspective and understanding of life with lots of kids in the family. We simply have to say no to the extras. Even though they came prepared to purchase their own shirts, we surprised them by buying them. It sounds like a small thing, but $56 bucks for two long sleeve shirts that are way too wide for my little slim babies is a big deal to us.

Watching some sports impacts me more than others. There is something about wrestling and cross country that makes me wistful. Wrestling - in part - because Adam was such a wrestling phenom and I grew up in the gym watching wrestling meets.

But also because wrestling and long distance running take so much discipline. Both sports take a tenacity and endurance that other sports don't seem to require. Yesterday, I watched my girls push through their pain to run their best race. 

That is grief. That is life really. That no matter how much life we live, no matter how much ground we cover... we cannot outrun our pain. It stays with us, and it requires a tenacity and endurance that many of us have no choice but to develop. The pain is a non-negotiable. Running the race well is the choice. The pain isn't going anywhere, but whether or not we press on, and still laugh and eat cake and do cartwheels... that is the decision we must make. 

Life in the Tension

Sometimes I like to imagine what my kids will remember me teaching them throughout their childhood. What will stick? Will they remember all the "I love you's?" Will the "you're so brave's" and "tell me about your day's" be the words that become fastened to their memory? Or will something else overshadow the sweet and encouraging sentiments? One thing I frequently tell them that they find less favorable (but I am certain they will remember me saying) is "that is not a real problem." Let's run this down so we are all clear on what a real problem is in our house.

Scenario 1: You are four years old and you have no food to eat. At all. Ever.

Correct, that's a real problem. 

Scenario 2: You are four years old and you do not like "beet taste." 

Not even close to a real problem. (Also, beets are delicious.)  

Scenario 3: You must spend a half a day walking to a source of (questionably) drinkable water. 

Yes, this. This is a real problem. 

Scenario 4: Your food touches.  

No. Having your hot, nutritious food touch other bits of hot, nutritious food? That is - comically - not a real problem. 

You can see how they might remember me saying this. Because it is said frequently. And trust me, we are a big 'feelings' house. We talk about our feelings, we validate each others feelings, we use lots of expressive feeling words. There is no shutting down how they might feel about beets. This is a safe space to feel strong dislike for "beet taste." While I strive to always hear and even affirm their feelings, I don't pretend for a second that this is a real problem. 

I was discussing this with my friend Megan the other day. (Some of you might remember her from previous #AdamsActs posts about the heartbreaking loss of one of their sweet little twin girls, Zoey.) Megan and I were discussing our very low threshold for problems-that-aren't-really-problems. I think that low threshold is directly correlated with experiencing great and tragic loss. It changes you. It changes your perspective on what suffering is. It changes your capacity to tolerate complaints about that which is not a real problem. 

When facing challenges of various kinds, the leaders at our church will often use this phrase, "This is a tension to manage, not a problem to solve." Ugh... I love this, and oh how I wish that this concept would go ahead and just embed itself in my memory already! There are some challenges in my life that I have viewed as problems I desperately need to solve. Or avoid. Or feel sorry for myself about. These "problems" are not really problems to solve, they are simple tensions to manage. 

Instead of graciously managing the tensions, I have tried to control the tensions. I have tried solving the tensions. I have attempted to escape or avoid or blame the tensions. Shoot, I'd punch the tensions in the face if I could. Yet, nothing changes... the tension remains.

I recently shifted my definition of a problem to something more like this: a problem is only a problem if there is an actionable step one can take to work toward a solution. If no actionable step can be taken, there can be a lot of tension. That tension needs to be managed in a healthy way.

Parenting a child with a pretty severe behavioral disorder can feel a heck of a lot like a life-consuming problem. Except for one thing... there is no actionable step that I can possibly take to work toward a solution.

I must live in the tension. 

I can pray in the tension. I can cry in the tension. I can seek wise counsel in the tension. I can adjust my attitude about the tension. But I cannot solve it. I must accept it. 

The focus then is not on how to "solve" my son's disorder, but on how I can remain emotionally, physically and spiritually healthy enough to manage the tension that surfaces in light of my son's disorder.   

You may be wondering, "Who cares? What's the difference?" But the difference is everything. It's the difference between overwhelming shame that I cannot heal my child, and accepting him where he's at in his process. It's the difference between feeling exhausted and infuriated by the sheer volume of time spent supervising every little move, and recognizing our family's need for respite in order to prevent that fury and exhaustion. 

The difference is the understanding that I cannot play the Holy Spirit in my child's life. In the tension, I can only manage my own reactions, my own health, my relationships. But in the tension, I can know that I did not cause my child to have Reactive Attachment Disorder any more than I can cause my child's aversion to the glorious taste of a perfectly roasted sugarbeet. 

I did not cause either of these phenomena, and I cannot "cure" them either. I can only manage myself in the tension. 

It's hard to suffer well. And the greatest suffering occurs when there is no actionable step to take, because we cannot solve our way out of our pain. We cannot bring back the child that died. Or the parent who left. We cannot heal the primal wound that is left within the child who is separated from his first mother. 

We must simply learn to live, and accept, and love, in the tension.

So, when my five little ones are all grown and they reflect back upon their childhood, I hope that what they remember most is all the expressions of love, encouragement and adoration. Yet, I don't mind if they also remember me clarifying the difference between a real problem - real suffering - and something that is simply a tension to manage. Not only do I hope they remember hearing me speak these truths into their life, but I hope they remember me living, and loving, in the tensions... and teaching them to someday do the same. 

Jay, age four, confronting his greatest fear, a beet.  

Handle with Care

It's amazing how there are seasons of life where it feels like everything is crashing down around you all at once.  I have to say, I am in one of those seasons.  I feel piled up with all my own heavy stuff, and the heavy of those around me.  I am choosing to be thankful... for my home, my marriage, my mind blowingly precious kids, and for the life that I have, which is so fragile and easy to lose.

As much as I want to spill all of my guts, I am just going to share a quick update about Jaylen's health because I know that so many of you are hounding me for an update praying for him so faithfully. :)

Our insurance will not cover the center where we were hoping to have him thoroughly evaluated.  If we choose to take him there, it would be self-pay and we would have to move into a refrigerator box.  Instead, we are opting to go to one specialist after another in order to come up with some diagnosis.  If/when special needs are established, Jaylen will qualify for medicaid, and then that center will be covered.

At this point, we have only gotten in to one specialist.  I don't know why it takes 1,000 years to get a baby's heart and hearing and vision checked... but, it does.  His first appointment yesterday was with a pediatric dermatologist to rule out a genetic condition that presents with cafe au lait spots and hearing loss.  I feel like I know in my bones that he had meningitis and that that is what caused his hearing loss, because it wasn't handled properly by the hospital, so it was not surprising when she said that we were not dealing with that genetic condition.  She did say that one of his birthmarks was harmless, and the other wasn't a birthmark at all (despite what I was told at the hospital) and would have to be removed for it's risk of melanoma.

So, while I was hoping to check one specialist off the list, I actually have to add a pediatric plastic surgeon to the list... and we are still no closer to clear answers.

I feel like I am beginning a very long road that I am not equipped to handle.  I also feel like I love Jaylen more than I could possibly express, and I am thankful that I get to be the one who tries to have what it takes to handle this.

God is teaching me some ridiculously hard life lessons right now, and the biggest one is that I have underestimated the fragility of my life.  It is very scary being aware of how breakable everything is.  It is terrifying to know that my heart, my marriage, my kids' health, my relationships, everything... is breakable.  It is scary, but it is also a good reminder that I have to work hard to be a good steward of what God has entrusted me with, and it helps me long for heaven... where things can no longer break.