So sorry for a long delay between posts. I ran into a bit of a technical issue with my blog that is now remedied. Since last writing, we have learned that Anna’s lung functions stabilized. She has about 1/2 her lung capacity. It has remained this way for about the last two months. Our hope is she stays at this level for the long haul. Anna has adjusted to the reduced lung capacity physically and doesn’t notice most of the time. We’ll know more about the progression of the chronic rejection this summer after Anna’s next Dr’s visit at Duke.
NEWS: I have a new website that will be up and running hopefully soon. I’m combining my Journey Forward website with my new, Journey Forward for Life domain. I am planning on offering videos and online workshops to supplement the Journey Forward Workbook. I also have an idea to create in-person retreats that will give a limited number of people the chance to go to a beautiful place where they can work on issues in a group format lead by me.
The first retreat will be on Self Care. You’ll have the opportunity to explore who you are, what you like and don’t like and how you can restore and recharge. We’ll dig into the whys behind the challenges you face in taking care of yourself or even knowing what you like. I’m excited about the changes to come. If you want to stay in the loop, please email me and I’ll get you on my email list. No constant filling of your inbox, just letting you know when I’m launching new offerings. Email me as well if you are interested in participating in my first retreat this summer: firstname.lastname@example.org
Here’s to humming along!
We have some answers about Anna. She has both acute and chronic rejection. Acute rejection is usually treatable. Anna has had this before. A few days of intense IV steroids have stopped it every time. Chronic rejection sometimes stops but the damage is irreversible. It causes scar tissue in the lungs. Lungs and scar-tissue don’t go very well together because scar tissue doesn’t expand like healthy lung tissue. As a result of the scarring, Anna’s lung functions have dropped to 62%.
Today, she started an IV treatment called rATG. It’s supposed to stop the acute rejection. I’m a bit confused about how or if this will help the chronic rejection. The rATG has some bad side-effects. Some people tolerate it just fine. Some end up with intense flu-like symptoms. Some have blood pressure issues and end up in the ICU. Some get PTLD. If you have followed Anna, you might recognize those four letters as the type of cancer she got. Side effects or complications are not one size fits all. Anna might be totally fine. At the moment she is in a Benadryl induced nap.
So here we are again staying in the here and now. I’m mad about the lost lung functions. I’m mad about the chronic rejection. I’m also sad about both. I stop there. I have to. I feel this heaviness in the center of my chest. It’s a ball of tears that just want to come pouring out. They will. I will let them, just not now. Right now Anna is staying upbeat and positive. She joked about how the last time she had Benadryl, she thought her hospital room was the portal to heaven and she called her brother and cousin to tell them they needed to get to her room or they would be left behind. So far, she’s not having that kind of fun!
I hear Dory sweetly reminding me, “Just keep swimming, just keep swimming…” So that’s what we will do. Breathe and make the best of now. It’s New Year’s Eve. We must celebrate!
On Thursday I was casually enjoying coffee with a friend. My plan for the day was to take care of a few errands and then head up to Buffalo, WY to enjoy my Birthday and New
Year’s with family there. I got a text from my step-daughter that my granddaughter was super sick and it might be good to put our trip off by a day or two. Plans change. Within an hour, I got another call. This one was from a nurse breaking the news that my daughter, Anna needed to get on a plane and head to Duke Hospital ASAP. Anna had gone to the Dr. for a regular checkup. While there, they discovered her lung function had decreased significantly. After a conversation with her team at Duke it was determined she needed to be treated there. By 5:30p we were on a flight to Raleigh/Durham. After we arrived, Anna was immediately admitted to the hospital. We don’t know exactly what’s going on. The likely culprit is rejection, but we won’t know for sure for a few days.
When I first heard about this I just listened. My next step was to call my husband and let him know. As I talked to him the gravity of it all started to sink in and I started crying. I cried for Anna because she, her dad, stepmom, brother and sister were supposed to leave on Sunday for their first-ever cruise. Anna was extremely excited about it and to hear she couldn’t go left her crying so hard she couldn’t tell me, that’s why the nurse called me. I also cried because I feared the worst: irreversible rejection. That’s where I started sinking. Fearing the unknown.
While sitting on the airplane I realized I was future-tripping. My eyes felt hot and tired and I started crying again. Then it hit me, I have no idea what’s going on with Anna’s lungs. This could all be an over-reaction. It could be minor rejection. It could be devastating rejection where the only solution is another transplant. These are all “could-be’s” none are a reality any human is aware of at this point. So I stopped myself. I said I will deal with reality when I know it. For now, stay with what I know is true and real.
That is what I am doing: staying in the here and now. It’s very freeing. Every time the sneaky future-buggers start yipping about how this might happen or that might happen, I quickly quiet them down with, “There aren’t any answers right now.” It simply requires awareness and intentional thought. Simple, not always easy, but always freeing!
(This is a rewrite of a previous post from November 2014.)
It’s the holiday season! Are you ready to be around people you find challenging? You know, the ones who say things and suddenly you no longer feel very good about yourself. Perhaps drama trails around them like Pigpen’s dirt cloud. Approaching these situations with understanding and compassion can help.
To begin, recognize you are never very far from hurting others. This awareness generally helps with the next valuable action to deal with dysfunction: seeking to understand. Understanding where someone might be coming from, what he might be thinking or feeling, helps us develop compassion for him. Understanding does not require that you agree.
Understanding, and its closely linked cousin, compassion can dramatically change any dysfunctional system, at the very least for you. As you put on understanding and compassion, you will notice you are not so negatively affected by the dysfunction. You more easily notice the dysfunctional barbs, recognize them as a product of the other person’s pain, process the feeling, and realize, “This is not about me.” Once you have metabolized your own reaction, you can then shift your focus onto at least being kind to this person.
If you want to be truly free, you must let go of any attachment you have to how others respond to you. What?! Yes! If you do things in order to receive accolades, approval or acceptance, you are setting yourself up for an unhealthy bondage. You will never please others all the time. Your opinions and theirs don’t always match up. Your execution might not be what someone out there was thinking it should be. If other’s approval is your goal, you are doomed.
I’m not saying just go about your life doing whatever the hell you want without regard for how you might be affecting people around you. That’s called selfishness and I am not talking about that. I am talking about the part inside of us that is crushed when we don’t get any likes on our Facebook post, the part that gets gloomy because no one noticed the trendy outfit we’re wearing or our manicured lawn.
Many of us are motivated to do something so others will notice and that is misplaced motivation. It’s extrinsic. Healthy motivation comes from within. Sure, it feels good when others give us a compliment but that cannot be our marker for our achievement.
Set goals for yourself because it will feel good to you to achieve them. Wear the outfit because you feel awesome in it. Care for your lawn because that’s how you like it. When you notice you are doing something for the stamp of approval from others, stop. Pause for a moment. Recognize what you are doing. Remind yourself you are putting your sense of accomplishment into the hands of others. That is a place it was never meant to be. Take it back.
I’m an advocate of boundaries. Through boundaries we define who we are, what we like, what we don’t like, what we find acceptable and what we don’t. It’s important to know who you are. It’s equally important to remember we are responsible for ourselves and responsible to treat others with kindness. We must allow others to have the views they have. If you demand other people adopt your views, you’re trying to take away their boundary.
It’s fine to disagree with people. We live in a country where we actually have that right. Here are some phrases that might help with speaking your view while honoring another’s right to hold a different opinion:
- “That is how you see it. My view is…”
- “I understand you have a different opinion. My opinion is…”
- “That’s your perspective. My perspective is…”
Notice there are no “buts.” When you speak your opinion avoid using any blaming, shaming or criticizing words.
I’ve noticed, not just in the last few days but for quite some time, how vitriolic people have gotten in their disagreements. Professionals and leaders sound like mean-spirited children. Telling people their opinion is stupid is not only unkind, it does nothing to bring people to a place of seeking to understand where each side is coming from. Pick any debate right now, there are many, and look at the way people on opposite sides speak to each other.
I am a marriage coach. I help couples who are in crisis learn new ways of communicating with one another to help bridge the chasm versus pushing one another farther apart. As I look at the dialogue going on in the news and on social media, I keep thinking, “If you all would get some training on effective communication strategies and do some work healing the wounds of your past that show up today as venomous hate, the country would be a much better place.” You might not agree with me. That’s ok. You get to have your view and I get to have mine. 🙂