The Roller Coaster

I’m sidetracking from the theme of my recent posts and will get back to them in the next few weeks. For now, my roller coaster car is slowly, loudly, frighteningly clicking it’s way to the top of yet another peak. Last October my 22 year old daughter received a life-renewing double lung transplant. Last Friday she ended up in the ER in Denver with very little blood in her body. She needed blood but wasn’t bleeding from anywhere. So what happened to her blood? After a few tests, the culprit seemed to be cancer. Anna and I flew in an air ambulance back to Duke Hospital for further testing. This week, we heard again that she likely has cancer. We do not have any definitive results yet, but everything is pointing toward a version of lymphoma that is hand-picked just for transplant recipients: Post Transplant Lymphoproliferative Disease. At this point nothing is for sure, hence the click-click-click as my roller coaster car inches up, up, up. It may be chemo, it may be a different, less intense drug therapy, it may be we stay in North Carolina, it may be we go back and forth between NC and Colorado, it may be any manner of events; it’s just a lot of “may be’s”.

That’s how life is sometimes. We don’t know what to expect. We only know this moment in time. We only know to breathe in and breathe out and then do that again. Support is key during times like this. Reach out to those who can hold you right where you are. If you need to grieve possibilities, name them as possibilities and let the tears flow. If you’re angry, then let yourself feel the anger and give it an appropriate outlet. If you are gripped by fear, name it as well and let it have its space. Though it’s important to process what we know is true and real, possibilities are, at times, all we have and we find them affecting us. We give them a place to be heard and expressed so they can be processed.

Click-click-click, breathe-breathe-breathe

Living Blame-Free…It’s Not Easy

I recently read a post by Dr. Henry Cloud in which he explained the difference between those who take responsibility for their lives and those who blame. In the very week I read that post, I experienced my own opportunity to exercise this. My daughter, the one who got the double-lung transplant in October, ended up in the hospital with pneumonia. Not realizing she was going to be hospitalized, I took her to our local hospital for some lab work. I haven’t done that since she was three. Every time she has been sick I have taken her to Children’s Hospital. That is where she has received medical care for her disease, Cystic Fibrosis. They are the medical staff who know everything about her. Unfortunately, they do not perform transplants so we had to go to a different hospital for that.

I guess I was hoping for simple and easy. The local hospital is 15 minutes from our house; Children’s is 45 minutes in good traffic. After day two in the local hospital, concern started growing in my mind. It was becoming clear the Dr who was treating Anna was in over his head. He wouldn’t admit it and I was not sure what I should do. Each day I would think, “Anna will get out today, so let’s just stay where we are.” By day five, I hit my limit. When the Dr indicated Anna would need to remain hospitalized for several more days, I immediately requested a transfer to Children’s Hospital. I felt so powerful in that moment. Like I had finally stepped up and done what I should have done on day one.

Part of me wants to blame the Dr. Yes, I do believe he has responsibility, but I cannot change him. All I have control over, really, is me. So I stepped back and looked at the events. It was clear my first mistake was assuming Anna would get the kind of specialized care she needed at a basic hospital. It hurts inside when I think about that. I feel the pangs of regret. If I don’t let myself feel that, I will squelch my learning and quickly put a salve on it called ‘blame’. So, even as I write this, I feel the regret. It hurts. I feel hot tears in my eyes. I’m letting them spill out and with the tears comes relief from the hurt. I can sort of feel it work its way up from my chest, into my throat and out into the world. I don’t need to hold onto it. I can let it go. Awareness and acceptance of reality coming hand in hand offering me the beautiful gifts of forgiving myself and growth.

Next, I’m celebrating that I finally took charge and did what had to be done to get Anna the quality of care she needed. That feels really good. A lightness and strength accompany that thought. I didn’t wait too long to get into action. No irreparable damage had been done. The Dr.’s at Children’s stopped the negative treatment the previous Dr. had been doing as soon as she set foot in the hospital. Confirmation that what we thought wasn’t right, truly wasn’t right. Not for Anna. Not for someone with a lung transplant and Cystic Fibrosis.

Anna is home now, and doing very well! I am celebrating that, too.

It isn’t easy staying away from blame but it feels gratifying taking responsibility for my actions and letting the responsibility of others sit in their court.

Who is in Your Cage?

I’m stealing a post from another therapist, Dr Henry Cloud.  I’ve posted before about the importance of sharing our lives with other people.  Well, here’s some scientific evidence of the positive effects of this from our friends, the monkeys.  As I have walked the path of my daughter’s lung transplant, this need has become so apparent.  I am more calm, in part because of the support system I have.  This past week I was concerned about how she was doing.  We have learned that one of her medication levels was too high which was a contributor to her nausea.  No big problems, just little ones.  It was a friend who helped me put my concerns in perspective which brought a calming effect.  Left to myself, in isolation, I can percolate on problems and turn them into seemingly insurmountable obstacles.  Ah, the gift of companions!

Dr. Cloud says, “One of my favorite studies was done years ago with monkeys, measuring the effects of relationships on cortisol levels in the brain. (Cortisol is a hormone associated with high levels of stress.) In this particular experiment, a monkey was put in a cage and exposed to a high level of psychological stress, including loud noises and flashing lights. They pretty much scared him to death. 

When the monkey was totally terrified, the scientists took a baseline measure of stress hormone levels in the monkey’s brain as it was exposed to these stressors.

Next, the researchers introduced one change into the experiment: they opened the door and put a buddy, another monkey, into the cage. That was it. They exposed the monkeys to the same loud noises and flashing lights, and then took another measure of stress hormones. The Result? The level of stress hormones in the brain had dropped in half. The lone monkey was only half as good at handling stress as the pair was together.

So my question for you guys… who’s your monkey?!”

I got a kick out of one person’s comment to this.  She said there are certain monkeys she has to remove from her cage.  They don’t help her at all.  She is choosy about the monkeys she lets in.  Good advice for all of us!

Checking the Rearview Mirror

Three weeks after surgery

Just after surgery, hanging on

It’s important to live in the present. It can be helpful to learn from the past. If you are still alive, a given if you are reading this, then you have survived whatever you have gone through. At times, when we are in the midst of something intense, we can be overwhelmed by the unknown. We don’t know how things will turn out. We feel we can’t possibly survive the experience. We don’t know how we will move on. That’s what happens when we are looking out the windshield of life. When we see what is happening to us. Sometimes we add to the view with stories we create that may magnify what we are looking at and skew our view toward the awful. Possibilities become certainties in our mind.

At times like this I think it’s helpful to look at the rearview mirror, all the experiences we have had. We can see that, although incredibly painful or difficult at times, we have survived everything that was once in our view out the windshield. We may have lingering effects of the experience like PTSD, anger, bitterness, resentment, distrust, a negative view of ourselves, but we have survived. The lingering effects can be healed with good therapy, supportive friends and sometimes medication. We can move forward in our lives, stronger, and more determined to live knowing we can deal with the windshield because we have the rear view mirror.

My daughter waited 20 days from the time she was put on the waitlist for a lung transplant to the day she received her gently used lungs. At first the wait seemed interminable, but then we settled into a routine of just being ok with each day and whatever it brought to us. We let go of being home by Christmas. We just took life a breath at a time, and it was not intolerable. Then she got the call, “We have lungs for you!” This started another journey of unknowns. Her surgery, while successful, nearly killed her. The doctors had to heavily drug her to get her heart to beat. Then the once fabulous lungs, began to fail. Her life was on the line. There was a chance she wouldn’t survive. She was put on a lung bypass machine called ECMO. All her blood was cycled out of her body, oxygenated, then returned. She was heavily sedated and clueless about her situation for a few days. She was on a ventilator. She was kept alive by machines and medications. I had no idea what was going to happen to my daughter. Would she wake up so I could see her beautiful blue-green eyes? Would she slip away and be gone after giving one last ditch effort to survive? I knew nothing and the windshield presented very little, a few road signs indicating danger but mostly the fog of uncertainty. I had to hang on to her being OK. Each day I saw her alive. That was also part of the view out my windshield. A daughter who was still breathing, it was through a machine, but she was still breathing. I had moments where I broke down in tears. It was just too much to hold. I had to release the fear and sadness. Mostly I tried to keep my view on reality, not possibilities, because the ‘could-be’s’ were not the ‘are’. This took every bit of strength I had. In part I wanted to be focused and strong for my daughter. I didn’t want to bring doom and gloom into her ICU room.

After almost a week in the ICU she progressed beautifully. Her heart started working and her lungs began to do their job oxygenating her blood on their own. At this time the doctors discovered her epiglottis was paralyzed. A paralyzed epiglottis means no eating or drinking ever again. The epiglottis protects the lungs from the food and liquids we eat. Getting anything other than air in the lungs could mean damage and eventually failure of the lungs. The price paid for these lungs by the person whose gift in death was life for Anna is too high to throw away on the satisfaction of eating. I was so angry about this, angry that God would allow it. I shouted my “not fair” to him. I know life is valuable but think about how much of our lives and social connections revolve around food. Would she have gotten through this? Sure. But as a mother, I did not want her to trade one negative for another. Guess what? That sleepy epiglottis woke up. It took until just recently to fully function, but wake up, it has!

What’s in my rearview mirror? The reality that everything can work out well. All the happenings of the past five weeks have been like a roller coaster ride. Everything that could have ended badly, hasn’t. My daughter has a long road of healing ahead of her. She will also face a heightened risk for infections due to the immune suppressing drugs she must take for the rest of her life so her body won’t reject her lungs. She must deal with nausea, tremors, a puffy face, and just not feeling like herself because of all the medications she takes. She has to wear a mask and avoid being in crowds to protect herself from all the viruses and bacteria the rest of us spread every time people take their illnesses out of their houses and into the world around them. (Yes, a message to stay home any time you are sick to protect others!)

You get it, right? A lot of really wonderful things have happened for my daughter but there are hard things, too. And she will deal with them since she can look in her rear view mirror and see how far she has come! I am reminded how important it is to be present and look out the windshield with those ever necessary glances out the rear view mirror to remind me, I can do this!

Purging Disappointment

Sometimes life goes the way we want it. In that space it is easy to be content, even filled with joy. We smile and laugh easily. The world around us tends to take on rich, extremely pleasing hues. I love that space! Reality is we aren’t in that space all the time every day. How do we find contentment when life isn’t going our way?

I’m finding myself in this very place right now. My daughter and I have been away from home for seven weeks and she is still waiting for her lung transplant. I had an expectation I would be home by Christmas. As the days slip by, my expectation becomes less and less a possibility.

Some days I find joy and peace. I sit comfortably in the place of waiting and examine the positives in my experience. I understand at a deeper level the disappointment of circumstances not cooperating with my expectations. I know what it feels like to want, to wait, to be let down. Without these experiences I cannot truly empathize with the rest of humanity. I would become isolated from reality. The disappointment and waiting parts of me are getting a workout right now.

Some moments I am angry, discontent or sad. These are not negative states. I see them as the eruptions of toxins inside of me. Volcanic eruptions, boils, whatever analogy you’d like to visualize. The icky stuff inside of me which is a natural byproduct of disappointment must come out before it turns into something more sinister and destructive. When I feel it surfacing, I let it out. Sometimes the release is in writing, sometimes pouring it out in a conversation with a friend or my daughter who is the best at really understanding because she feels it, too.

We have dump-fests now and then. The verbal purging of our frustrations or sadness. We don’t respond to the other with a positive, “it’s all going to work out” because we have learned those types of phrases really don’t help. We know deep down that whatever happens is part of God’s plan. But in a purging moment, we’re getting out the stuff that gets in the way of accepting that. The well-meaning words are like dams to our purge.

After a release of the ick, I feel better. I experience a balancing within, an acceptance of reality, a surrendering. I’m ok with being here however long it takes. I let go of my attachment to expectations and I find myself settling into the sweet spot of being at peace with my circumstances. I don’t stay here all the time. There’s a cycle:

1) Peace and contentment

2) Disappointment sets in as a result of wishing my life was different or my daughter gets a call there might be lungs for her which later turns out to be a “no” or I hear of a friend getting his transplant (excitement for him, sadness for us) or…

3) Anger or sadness begin to surface I think about it, churning the situation in my mind, creating stories of how long we’ll be here, seeing the worsts, getting madder or sadder or simply just feeling the reality which is sad and frustrating

4) Talking to my daughter, a friend or writing down what I’m experiencing, allowing a free flow of thought and emotion (usually tears) to pour out of me uncensored

5) Receiving a hug, words of understanding, essentially sitting in the pit with me without condemnation

6) A renewed sense of being able to get up, get out of the pit and journey on, at least for this moment

7) Peace and contentment

There’s no magic or short cut. I think this is the way we deal with disappointment, get stronger and simultaneously more compassionate.

Get Through This Breath

Taking life a moment at a time has never been more profound than in this season of my life.  I’m away from my husband, my other children, my family and my friends while I have taken on the role of primary caregiver for my daughter who needs a double lung transplant. We are in Durham, NC awaiting her transplant at Duke University.  Some days I just move along fluidly in this current. It is effortless to be here but it is intensely strenuous to stay here. I’ll explain because that seems a bit incongruous. When I’m in the current it requires very little work on my part. I’m going the direction of the path I’m on. Moments arise when I’m looking at the river bank or an alternative current and I want to go there. As I struggle to fight my way into the other current or seek safety at the river bank, I get exhausted.

I want to go home. I want to be with my husband hanging out and enjoying his company. I want to be in the kitchen when my son comes home from school. While he’s busy getting himself something to eat, he talks to me.  I treasure that time before he disappears into his room to do homework, surf the net and play games. He’ll be graduating in two years. My youngest child will be going to college and our kitchen talks will be gone. I want to meet with my friend, Karen. We get together every other week at Starbucks to connect and challenge one another to grow. I miss hopping in the car and within a few hours being with most of my family. I miss the camaraderie of my Tuesday night Solutions group. We laugh and cry with each other as we learn to live healthier lives while watching and discussing Henry Cloud and John Townsend’s Solutions DVDs. I miss the comfort of my own home and I miss my dog!

I feel a bit like an Israelite wandering in the desert. God is providing for every step of our journey. I’m thankful for that but I also miss a lot! I wasn’t in slavery in Egypt like the Israelites. Colorado really is my home and the place I ultimately belong. It is not where I find myself today. When I think about all the things I don’t have and the place I am not, I begin to sink. When I think about how long I will have to be here, waves of panic crash within me. I can’t breathe. I freak out. Before I lose consciousness and succumb to the drag of the water, I remember one very important detail. I do not have to survive this for a really long time. I don’t have to think about being here for three months, six months, a year. All I have to do is focus on this moment. I just need to get through this breath. That’s it. Ah, relief! I can do this. 🙂  I know I can’t survive being here very long. But I know I can survive being here for this breath.  As time goes by all those breaths add up to an hour, a day, a week and so on. That is so much more manageable.

Live your life one breath at a time.  It really is the only way we can survive or enjoy the current we find ourselves traveling.

So You Think You Don’t Need People in Your Life?

I’ve heard and thought at times, that some of us need people in our lives and others are just fine going it alone.  Some say extroverts need people and introverts don’t.  Some say people aren’t trustworthy and it’s best to go it alone.  That’s the group I was part of; I didn’t trust people with my deepest thoughts and feelings so I held everything to myself.  That was until I totally flipped my life upside down when I had an affair several years ago.  Maybe it was an explosion of sorts.  Like all the parts that I kept to myself couldn’t take it anymore and burst out of me in a ground rocking, life shattering display.  At that lowest time in my life when I looked the ugliest and had the most to be afraid about trusting with others, I finally let people in.  I started the process of allowing myself to need others.

I recognize how heavy life can be sometimes; much too heavy to bear alone.  I bring people in to my experience not to burden them but to soak in their care, kindness and encouragement.  In the process of sharing my thoughts and emotions a connection begins to form between me and others.  As time goes by that connection deepens.  I am there for my family and friends and they are there for me.  I could keep everything to myself, holding my cards close to my heart.   I don’t think I would live very long though.  I also think my body would react negatively to the “holding on”.  Studies have shown that those who are going it alone have higher incidences of gastro-intestinal and cardio-vascular issues.

At this point in my life, it’s worth taking the risk that some with whom I share my life will betray my trust.  I would rather be stung by being open and connecting than be protected but alone and isolated.  The benefits to me far outweigh the risks. I have all these fabulous people with different perspectives who speak into my life or just listen if that’s what I need.

The extrovert-introvert argument doesn’t actually hold water. The general definition of an introvert is they are drained when they are around people and extroverts are energized by being around people.  But “being around people” isn’t the same as connecting.  An introvert may feel more comfortable in the moment being alone but an introvert needs trusted people just as much as an extrovert.  When extroverts are being extroverted, it isn’t the same as forming deep connections with people.  Deep connections have nothing to do with introverted or extroverted personalities.  An introvert can have just as deep of a connection as an extrovert and vice versa.  It’s not about personality type but rather a need of all humans to be deeply connected with at least a few people.  It’s about our survival.

And it’s important if your daughter wants a lung transplant!  Several of the pre-screening questions for me as her primary caregiver were on this very topic.  Who do I turn to for support, how often, how am I dealing with her disease and need for a transplant??? Years ago I would have thought I was the best person to be her caregiver because I didn’t need anyone.  I thought I knew so much and was so capable of taking on the weight of the world…I was wrong!

Clarity for Next Steps

As we move toward living a healthier more productive life relationally, physically and professionally, moments arise when we have no idea what to do next.  I firmly believe that God will show us our next steps.  For the past three weeks I have been facing my 21 year old daughter’s need for a lung transplant.  If you read both my blogs, this might be a bit of a repeat.  My daughter has a genetic disease called Cystic Fibrosis (CF).  CF causes the mucous throughout the body to be thick and sticky.  It blocks ducts and airways, creates a breeding ground for germs, inhibits proper weight gain and destroys the lungs.  Anna’s lungs are now at 25% capacity.  Most of us are around 100%.  The fact that she is still alive at that number is a miracle.  The chance for her continued survival at this point rests on her getting new lungs.  My life has been absorbed with investigating the various transplant centers around the US, pouring through statistics, reading transplant recipients’ blogs and watching YouTube videos.

I want answers for what to do and where to go immediately.  That has not been my experience.  Repeatedly I have been reminded that when the time is right the answers will be there.  I read it in The Language of Letting Go by Melody Beattie.  I heard my pastor speak about anchoring to God’s foundation last Sunday.  Friends have reminded me that we will find the answers in due time.  I have this great vision of the foundation of my steps.  At the moment only the place where my feet are right now is visible.  The next steps have nothing…literally nothing there.  So I stopped trying to move forward.  How can I move forward if I don’t know where to go?  Without clarity, the best decision is to be still and wait.

At my daughter’s suggestion, our family gathered together and we all talked about our feelings and thoughts regarding transplant centers and the transplant process.  Our family consists of my husband, my ex-husband, his wife and our three children.  Though my daughter is most profoundly affected by this topic, everyone in the family is touched in some way and everyone’s input is valuable to the final decision.  At the end of the meeting we had a unanimous decision and our next step was there: begin the application process at Duke University.

I have a renewed sense of the importance of being in the moment at hand and doing only what I have clarity to do.  We don’t have guarantees of how any of this will turn out.  Duke might not accept my daughter as a transplant recipient.  We aren’t dealing with any of that because that information is not known to us in this moment.  This moment is another ‘be still and wait’ moment.  We will have moments with movement or action and we will have many more moments of being still and waiting.  One step at a time!