Archive for January, 2019

January 15, 2019

You Can Never be Too Prepared…Can You?

planYou can never be too prepared…can you?

As small children we learn to stop, drop, and roll. As teens we’re encouraged to be prepared to practice safe sex. As adults, we are oft admonished to prepare for the future by contributing to a retirement account. That’s three examples of ways we’re encouraged to prepare, but there are hundreds: take AP courses to prepare for college, get your flu shot, have a safe place to go in a tornado, wear your seat belt, have enough savings available to cover 3-6 months of bills, buy life insurance, know the best glide speed of your airplane, rehearse your dance moves before a performance, practice shooting free throws, learn CPR, take an umbrella, put your gloves in your pocket, etc. Much of our time and energy is spent preparing for something.

When I was learning to fly, most of the training time was focussed on preventing or preparing for a malfunction or emergency. Once I had mastered the procedures, my instructor deemed me ready to fly solo. Could I have flown the plane before that? Yes. And I could have done it safely as long as everything went as planned. But I would not have been ready to make a lifesaving split-second decision in the event of a catastrophic event.

Preparation is a good thing. It allows us to excel in sports and academics. It makes for productive meetings. It gives us food that is elevated from its original state. It calms our minds. It sometimes saves our lives. I am all for being prepared. In fact, I believe it’s sometimes critical.

But is it possible to over-prepare?
prepare
Preparedness or Fear?

I have a friend who describes traveling with his former girlfriend as a regimented execution of her meticulous planning. Each attraction, restaurant, and hotel was identified in advance and mandatory in inclusion. His hankering for BBQ rather than Tex-Mex simply could not be accommodated.

This begs the question of whether the girlfriend was over or under prepared. Obviously, she was logistically prepared, but it seems she was not confident and relaxed enough to vary from her plan even if it would have enhanced the overall experience.

This is an example of how fear can cloak itself in preparedness. When this happens, preparedness takes on a life of its own and begins to hold us back rather than providing a foundation for us to move forward.

My sister prepared for over a year to become gluten-free. She researched taco seasoning mixes, doughnuts, restaurant menus, one-to-one flour mixes – everything that she needed to know to feel prepared. Then she did a pantry challenge to make sure no food went to waste. The preparation period went on so long that she started to believe going gluten-free would be really hard.

Luckily, she didn’t talk herself out of the original goal. After a year with less pain, more energy, and fewer sinus problems, she admitted that she had made things much harder than they needed to be. She had prepared past the point of readiness.

While my sister still managed to move forward, my 98-year-old cousin stopped herself from the trip to Alaska she wishes she’d taken. She was so focused on saving for the future that she stayed home while her friends had the time of their lives. If she had been struggling financially, that could have made sense. She wasn’t. She had more than enough. Again, fear masqueraded as preparedness.

You’ve probably known someone who buys way more food than they need because they fear they’ll run out, or keeps going back to school but never pursues the new job for which they’re more than qualified. You may know an amazing artist whose work sits in the back room while their spreadsheet of galleries to contact grows. They are all adequately prepared to move forward, but may tell you they’ll make the move as soon as they prepare in x, y, or z way.

Preparedness vs Being Present

When you spend your time preparing for the future, you cannot fully experience the present. The truth is, we can never prepare for every possible circumstance that will affect us. This is an area in which it is wise to choose our battles.

Choose to Prepare…or Not

What are some things to look for when making preparedness choices? Here are five questions to ask yourself:

1)Does it require buying something, using a specific service, or taking a medication that is being advertised to me? If so, it is good to think twice. Some marketers and advertisers prey upon fear to drive sales. This is sometimes disguised in rhetoric of prevention or preparedness.

2)How much time, money, or effort will the preparation take in relation to the likelihood of the threat? If you live in Missouri, there’s no real need to prepare for a hurricane. On the other hand, it is a good idea to know the safest place in your house in the event of a tornado.

3)Am I laying the groundwork for moving forward, or am I avoiding something? Preparing yourself for the worst possible response from your spouse may keep you from broaching a topic that needs to be resolved. You can also avoid cleaning out the closet by continually exploring containers, racks, bins, and other organizational tools before you get started.

4)Have I reached the point of over-attachment to one specific approach or idea? Over-preparing for a meeting may keep you from really hearing a potential client’s objections because you have become so focused on the script you’ve rehearsed in your head. Over-preparing for parenting can mean you fail to notice the most effective way to motivate a specific child.

5)Am I truly preparing, or just shielding myself from making a decision? As long as I’m still in training or strategically planning, I don’t have to make an active decision to do anything. It’s great having one foot in and one foot out. I can hold onto the dream that makes me sound good in conversation and still stay stuck in the muck.

I say all of this to prepare you for the posts that will come next. Many of us must heal our bodies, minds, and spirits in order to thrive. The path to healing has common elements for all of us. Mapping the process can help you know what to expect along the way.

It’s easy for “experts” to tell us we will see a difference in days or weeks or quickly when we begin healing process. That can be true, but it’s not the whole story. If it were, no one would give up on a health plan after 6 months, relapse, or go back to an abusive relationship. Having a map to guide you can help you persevere in the moments when backward feels better than forward.

Don’t worry, amidst all this mapping there will be cooking too. The food and the process offer many tools for healing.

Next up, we’ll prepare…you had to know that was coming.

Until then, I wish you warm hugs and kind words.

https://news.vanderbilt.edu/2017/09/22/personal-preparedness-why-prepare-2/

http://www.cooking2thrive.com/blog/think-going-gluten-free-is-hard-visualization-can-help/

http://www.cooking2thrive.com/blog/time-is-on-your-side/

January 8, 2019

I’d Tell You, But Then I’d Have To…

I’d tell you, but then I’d have to…quit talking because you’d have tuned me out anyway! And you thought I’d have to kill you. No, you’re safe. This year, I really want to map out some expectations for the healing process. I feel like that’s a missing piece of the puzzle for many of us.

But that map will not start today. Why? Because life has handed me other priorities. I know you’re familiar. In random waves of difficulty, life can interfere with the best of intentions sapping your energy for anything other than the essential.
meds
The virus I had on Christmas lasted a good 14 days. Two days later, my medically fragile granddaughter came to stay with me while her parents travel out of state. She is sick. Her cough sounds like she has the same virus I had.

In the average baby this would not be of great concern, but this 8-month-old has spent 50 of the past 128 days in CVICU (Cardiovascular Intensive Care Unit). The last cold she got put her in the hospital so oxygen dependent that when the oxygen supply accidentally became disconnected, she coded. That’s short for they called a code blue meaning she required immediate resuscitation.

Em has a paralyzed vocal cord and has not even attempted a bottle since August. She hasn’t successfully eaten more than half an ounce from a bottle since she was 6-weeks-old. She isn’t comfortable with swallowing. That means the only way she has figured out to get rid of the drainage down her throat is to throw up.

Again, not that big a deal…except she often starts coughing during a feed and then throws up to clear her throat. (During a feed – that’s how you start to talk when you spend lots of time in a hospital.) We fill her tummy through a button attached to a gastrostomy tube (G-tube). Three times a day, we add medications to her food. If she doesn’t get enough diuretics, her lungs fill with fluid so keeping the meds down is essential.
gtube
This is my main priority – keeping meds in her. Second is monitoring her pulse ox. I’ve had to keep her on oxygen the past few days. That means lots of logistical maneuvering and plastic tubing snaking through the kitchen into the living room, dining room, and bedroom. I move the oxygen concentrator in the morning and evening, but I don’t want to have to move it all day long.

Now, you’re probably either thinking, “bless your heart, I can’t even imagine” or “yeah, that sounds awful, but you’ll get through it and everything will be better”. Either way, I’m sure you’re ready to tune out unless I get to the point.

pumpWait…I haven’t even told you how long it takes to measure out 1.6, 1.875, and 5.625 mls of 9 different medications. I haven’t explained that her thyroid medication comes in 2 different pills. Depending on the day, I have to choose a 25mcg pill or cut a 75mcg pill in half, crush the pill, add water, place the resulting mixture in a slip tip (yes, that’s really what it’s called) syringe and inject it into the button. I haven’t mentioned any of the almost daily issues with equipment – a tube that slips off the feeding syringe and soaks me during a feed; the feed pump we use at night reading NO FLOW OUT even though there’s no obstruction and I can prime out liquid; an auxiliary port on a tube that gets caught, comes open and dumps meds and milk in the crib; the pulse ox sensor that has too much ambient light to work, etc. I haven’t told you that Em has panic attacks during which she starts gulping air. That means she needs constant burping through the burp tube, but she also needs to be held close to calm down. Those can’t be done by one person at the same time. Oh, and Em can’t sit up on her own yet. She has Down Syndrome and has spent so much time in the hospital she is way behind. Because she weighs 17 lbs, that adds another level of difficulty. Yeah, I know blah, blah, blah.

But that is the point. To feel like you understand what my days really look like, I need to tell you even more details. When I do, 98% of people stop listening. I can visibly see it happen. Some people want me to buck up. Others just don’t want to think about it. Others wish I’d say something interesting for a change. Many stop me by saying something they mean to be comforting, but often reflects that they haven’t absorbed what I said.

I am lucky. For me, the relentlessness of caring for a child who can go from okay to critical in 24 hours is a temporary situation. For my son and daughter-in-law, it is every day on top of jobs and caring for a two-year-old. When Em’s in the hospital, one of them has to stay there with her.

Not only do they have the stress of the routine, they have to make some really tough decisions. Em has pulmonary hypertension. There are 12 cardiologists who consult on her case and they fall into two different camps on treatment. Half of them would have her living in the hospital right now. How do you decide whether to bring her home or keep her hospitalized when the experts can’t reach a consensus?

And to all of you who want to say, you’ll get through this and everything will be okay – yes, we’ll get through it and it will be okay, but we do not know whether her health will improve. It may not. Getting our minds around the fact that this may be our new normal is more than any of us have been able to do. It just feels too sad. And that’s when it’s not feeling too overwhelming.

When you’re up from 2am to 3am with the average baby it’s tiring, but you’re buoyed by memories of holding your baby close or hearing her laugh. When you’re up from 2am to 3am with a medically fragile baby who is sick, you worry that you didn’t spend enough time holding her because you were too busy performing the tasks that keep her alive. That is a lonely, emotionally exhausting 2am.

I think we all just want to know we’re not alone with this. We want to feel a sense of support and connectedness in this situation life has dealt us. There’s simply no way to feel that if we don’t feel seen and understood. I don’t say that just for me or my family. We are just an example. It applies to all of us. It is the real gift we want from each other.

As humans, we may be geared to need connection, but somehow at this moment in time we seem to be lacking the will to stay tuned in when things are hard to hear. That means those who most need support are least likely to get it. I don’t know if that’s why we have so many people who feel the need to escape through drug and alcohol use, but I think it may be related.

Speaking from your heart is a vulnerable experience. Listening with your heart sometimes feels even more so. When you really see people, it changes your perception and not just of others, but of yourself. Keeping your heart open requires strong boundaries and oceans of courage. This is the real work of a full life. And many of us miss out.

Em and I saw a beautiful example of connection this week. I flipped on the Ellen show during a feed. Dax Shephard was on and it was his birthday. During a segment called, “Ask Dr. Dax,” his wife Kristen Bell asked from the audience what he would recommend giving someone special like a spouse for their birthday. He answered, “I would say please, please, please give that person love and support for 11 years, give them two beautiful baby girls…and you’re good.” Kristen’s eyes filled with tears, as did his. It was a beautiful thing to see.

Not everyone has a spouse, partner, parent, or child with whom such a connection is available. Today, you may have the privilege of being the only person who can offer active listening to someone you encounter. You may be the one person who can hold the space for someone to heal. It may not be instinctive or easy. It may interrupt your busy life. You may not feel appreciated in the moment. In spite of this, should you choose to listen, you give a valuable gift when you find the courage to stay tuned in.

If you have made it this far, thank you for listening.

https://pedsurg.ucsf.edu/conditions–procedures/gastrostomy-tubes.aspx

https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977

https://www.cdc.gov/ncbddd/heartdefects/coarctationofaorta.html

https://www.mayoclinic.org/diseases-conditions/atrioventricular-canal-defect/symptoms-causes/syc-20361492

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4070778/

https://www.psychologytoday.com/us/blog/emotional-nourishment/201612/why-we-need-each-other

https://armchairexpertpod.com/

https://www.youtube.com/watch?v=2cF-PXWt_bQ

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”