Posts Tagged With: cystic fibrosis

On Being In-Between

Sometimes we live in limbo. It seems we are in-between steps in our journey. We are finishing one step and preparing for another step but it appears that nothing is happening in that space. Are you there? Have you ever been there? Is it possible you might be there again someday? I know this place and I’m beginning to think about it differently. I don’t think limbo is really limbo. I think it’s just a part of the process of living and as much, if not more, happens in our development during that phase.

A year ago I was temporarily living in Durham, NC while my daughter got a life-saving double lung transplant. On October 12, 2013 she received her transplant and was recovering at Duke University Hospital. That journey was full of waiting: waiting for an answer on what to do about her damaged-by-Cystic-Fibrosis lungs, waiting to be on the waiting list for donor-lungs, waiting with mixed emotions for the “right” person to die (loss for one family meant life for my daughter…hard to work through that!), waiting for her to heal after her surgery, waiting for rejection to go away, waiting for getting back to living a normal life. Now we are in a new waiting phase as she has battled lymphoma since June. Today, it’s waiting to find out if the chemo worked. We won’t have an answer until early December.

Lots of limbo. Going through this season has been one of intense growth. It isn’t about waiting for the situation to change. It’s been about growing each moment of each day while not knowing very much about the next moment. But isn’t that how every day is, really? We never know without a doubt what is going to happen in the next moment. We think we do. We have bought into the lie that we have control and things should work out the way we want them to. As time is marching on and we are less insulated from the pain and unpredictability around the world, we are beginning to understand the concept of living in the moment and not hanging on too tightly to our expectations of how we believe life should be for us.

I challenge you to accept where you are right now. You don’t have to stay there forever, but it is reality for right now. Growing has more to do with accepting reality than pretending it’s not happening. Are you thinking about ending a relationship, changing jobs or in the middle of your own health crisis? You’re not certain of the ending, but to be certain is an illusion. Do what you need to do to get through this moment. Sometimes that may be taking a breath, feeling the air come in and out while acknowledging your presence in the here and now. You may not have the answers right now, but that is ok. I believe the answers will come in their time. As you breathe, let go of the need to predict your future. You can’t predict it and hanging on to the future is sucking energy and focus that is useful for growing in this moment.

I found this quote and put it on the wall of my daughter’s hospital room while she endured her chemo treatments:

“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” ~Vivian Greene

Categories: Acceptance, Emotional Healing, Growth, Healing, Recovery | Tags: , , , , , , , , , , | Leave a comment

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.

Categories: Boundaries, Forgiveness, Growth, Recovery | Tags: , , , , | Leave a comment

Self Care: Healthy Eating and Exercise

I’m taking a bit of turn from writing about emotional health and venturing into physical health. They are intertwined. Our emotional health is tied to our physical health and our physical health is tied to our emotional health. Given this, it makes sense to address a bit about physical health. I might tick a few readers off with this post. Opinions have a way of doing that sometimes.

I believe, and I know I’m not alone nor proposing something new, that processed foods are not good for us. I’m of the camp that believes in eating real food. I eat real butter, drink whole milk and enjoy red meat. I love vegetables and fruit, grains, poultry, eggs, cheese and even homemade cookies (sorry, no seafood…I just can’t get that stuff past my tastebuds!). I like to know the origins of my food. A Twinkie may have origins but most of a Twinkie or Velveeta cheese slices for example, are not actually food. Like the food you would see on a farm. I like the taste of Twinkies and Velveeta cheese but that doesn’t mean I should eat them.

Our bodies need good, healthy, unprocessed food to grow, to regenerate cells, to thrive. I learned about a year ago of the importance of good fat for our brains. Now, at 48, I am more interested in doing anything I can to help my brain. So I made the switch from 2% to whole milk and started using 1/2 and 1/2 in my tea. I have not gained a single pound and am just as healthy since I made that switch.

My daughter, Grace loves to bake. When she’s home from college she usually whips up some sort of decadent delight. They often involve ingredients like real butter, cream and chocolate. Rarely do we actually consume all of these delicious treats. We have some, but we don’t devour them. The yumminess is not obsessed upon but rather enjoyed in moderation.

Food or beverages claiming they are fat free or sugar free are more than likely not good for you. Unless we’re talking about water, an apple, fruit or vegetables that are naturally fat free. Sugar free products are usually filled with some sort of sweetening chemical that really shouldn’t be inside your body. I recently discovered fat free half and half. Now if half and half is technically half cream and half whole milk what exactly is fat free half and half? Is that an oxymoron? What was done to make it fat free and why would I ever want fat free half and half? Like, what exactly would that accomplish? So, if you’re eating or drinking something that, in its natural state has fat and/or sugar, choose the real deal over it’s fat and sugar free artificial cousin.

Our country has become so obsessed with fat free and sugar free. Is it a way to cheat the system? Doesn’t cheating usually come back to bite us? And are people really losing weight or getting healthier by eating fat and sugar free products? Most people I know who choose the fat and sugar free items are not healthy. It’s a challenge these days to find full fat products. Take yogurt for example. Go to the grocery store and count how many brands are fat free and then try to find a whole milk version. They exist, I have found them, but not in abundance. In fact, at the grocery store closest to my house I found one, just one yogurt that is not fat free or low fat.

I became increasingly aware of the dilemma of finding whole fat products years ago because my daughter, Anna, the one with cystic fibrosis who just got a double lung transplant, has to eat high fat high calorie food. At times I thought, I’m going to have to hand her a stick of butter because that’s the only product I can find that is whole fat.

I have never had a weight problem and enjoy good health. You can say it’s because I have favorable genes or because my parents set a balanced, healthy example for me. And both of those are true. But I also believe it’s because I have spent most of my 48 years taking care of myself. I generally eat in moderation (for the most part…there’s always that occasional binge on something really bad for me like sour cream and onion potato chips). I exercise regularly though not obsessively. I usually walk or get on an elliptical machine a few times a week. I started lifting weights while I was in NC a few months ago because I’ve heard weight resistant exercise is good for strengthening bones. I also attend a yoga class about once a week. Nothing intense but I try to be consistent.

Exercise can be anything that gets your muscles moving and your heart rate up. Dancing is free. You can dance anywhere to songs in your head. You can walk laps in your apartment or home. If you have stairs, go up and down for awhile. You can join an exercise facility or find drop-in classes in your area. You can get an exercise DVD or find programs on your television. You can go outside for a walk. If it’s not so cold you’ll get frostbite, you can bundle up; the fresh air will do you good. When the weather’s hot, get outside early in the morning before the temperature soars.

My point, take care of yourself by eating real food and exercising. If you have issues with food or body image that create a strangling weed in your mind or emotions, find a good therapist or coach to help you work through those issues and gain freedom. Or join a group like Weight Watchers. Sometimes, we are simply stubborn. We’ll dig our heels in and say we refuse to succumb to the weight obsession in our culture. We continue in our unhealthy lifestyle in defiance. That is not a good reason to avoid taking care of your body. That, and I’ll be blunt, is a really unintelligent choice. Is it defiance or is there underlying hurt and the defiance is your cover-up?

The best action you can take is address head on why you are neither eating well nor taking care of your body. This is a beautiful act of self care. It can’t be for anyone else. It can’t be to look like a person in a magazine or to make someone take notice of you or to prove you’re better than others. It has to be from a pure place within that says you are worth taking care of yourself!

Here’s to moderation! Here’s to healthy eating and exercise! Here’s to you!

A Note: Some people take really good care of themselves and still end up sick from diseases or cancer. Please don’t hear this post as condemning. Rest in knowing you have done what you could; you just didn’t get fair cards.

Categories: Depression, Growth, Self-Help | Tags: , , , , , , , | Leave a comment

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.

Categories: Depression, Relationships, Self-Help | Tags: , , , , , , , , | 2 Comments

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!

Categories: Depression, Relationships | Tags: , , , , , | 8 Comments

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