Inspiring Lessons of Connection from Parents with Critically Ill Children

The past few days, I’ve had a chance to see both the best and worst of humanity. The stark contrast presented by a unique week of interaction has me pondering the importance of connection, personal power, fear, and our contributions to our own misery.

Okay, admittedly that’s a lot of territory so, for now, let’s look at the best and see if there’s anything we can learn that will help us improve the quality of our lives so that our families can thrive.

My week started with a photo shoot of several families who have children that are critically ill, injured, or have recently received a transplant. As I asked each family if they were having a good day, I received varied answers. One family’s son had just had his chest tubes removed after his third open-heart surgery. He is three. The mom told me that she was grateful to have learned it doesn’t matter what color your skin is. When you are told your child may die, it only matters who you are and what’s in your heart. A family that had arrived in town because the mom went into labor on an airplane and we had the closest airport, moved carefully because of her recent Caesarian. Her new daughter is still in NICU, she is having to shower in a communal bathroom, and her husband has been unable to start his new job. She calmly instructed her 3-year-old son who has to wear his blue sweater several days per week because there’s been no chance to locate other clothes. She wasn’t much for talking; her quiet smile said it all. One young mom wrestled her 4-month-old son who recently had a heart transplant. He has gorgeous red hair, a feeding tube, a mask over his face, and he cries incessantly. He was frightened by the photographer’s strobes. As he wriggled and screamed, his young mom remained relaxed and gentle with him. Her unflappable serenity shines through in the photos.

All day long, I kept expecting to see people at their worst – exhausted, frightened, struggling, hopeless. What I kept discovering was that I was seeing people at their best. They may have felt exhausted, frightened, and helpless, but what I experienced was calm strength and total presence in the moment. Without time or energy for the usual niceties or pretense, connection was natural, easy and inspiring. Over and over again, I felt an immediate connection. With each meeting of our eyes, each smile or look of empathy, I knew my presence made a difference. I felt honored, humbled and powerful.

For these families, life has been stripped down to the absolute essentials. Their challenge is to embrace each bit of kindness, joy, or relief that appears while surrounded by the most difficult of life’s realities. If they choose to spend five minutes wondering why their child must suffer when others don’t, they know that’s five minutes they aren’t fully relishing the time they have with their child. What a choice!

It’s easy for most of us to draw a contrast between our everyday lives and that of these families, but maybe there’s something we can learn from them and apply to our everyday interactions:

Because these families are painfully aware that the time we get in this life is limited and uncertain, they focus on making the most of each day. We can all benefit from this type of focus. Our priorities will then allow us to rid ourselves of the activities or friendships we have chosen that do not feed us or contribute positive energy to our lives.

While they have real reasons to worry, these folks recognize that worry is a distraction that keeps us from being present in the moment and thereby prevents us from fully connecting with each other. It is through this connection that we can give and receive empathy, care, comfort, and love. 

Although presented with heart-wrenching circumstances, the families I observed show up each day to face the situation and make difficult choices. We too are faced with everyday choices that affect our health and quality of life. Do we choose to cower in denial or do we gather our courage and make the choice that best serves our overall well-being even if that’s not the easiest choice?

In the role of parent, the adults recognize that they must function as adults. If they weep and wail and act helpless, their children will become frightened. If they are disrespectful to the nurses or staff, they may inadvertently jeopardize their child’s care. If they decide that they just can’t handle the stress of the hospital, their child will be left alone. These loving parents do not choose to burden their children with adult matters so they summon their best selves and find the strength to cope with each difficult day. How often do we fail our children by neglecting to summon our inner strength to set and enforce limits on sugar consumption, screen time, rude behavior, or frivolous spending?

When parents are separated for days or weeks by taking shifts to provide a continuous presence in a child’s hospital room, the importance of adult time to connect without the children cannot be taken for granted. Are we remembering to value our connection with our partner? Do we make time and space for connection on a regular basis? Do we present a united front to our children?

As days turn into weeks and the world begins to shrink to the size of the hospital room, these parents must find small ways to care for themselves and keep a connection with the larger world in order to remain inspired. There is no energy to feel guilty for a few “selfish” moments; in fact, there’s a realization that feeding their own spirit is not just important, but critical. Some of them make sure to take a walk and watch the sunrise or sunset. Others read a book that allows them to empathize with the characters. Some schedule a meal out once a week so they can get out and people-watch. Some moms just take a long bath and a nap or get a massage. Do we measure our worth in self-sacrifice that causes us to lose our identity or feel guilty when we take care of our spirits?

This week in the midst of tragedy, I had the privilege of seeing the best. I also had the experience of seeing the worst. This contrast reminded me that life-changing events are a chance for people to reveal their real character. Sometimes you learn that your partner, sister, aunt, mom, or dad is too fearful to be supportive, too needy to put another’s interests first, too interested in comparison to have compassion, or too threatened by real connection to let down their walls and be there for you. Can we have compassion for their weakness and the courage to let go of our expectations of more from them so that we can recognize and be open to receiving what we need when it presents itself? 

When we allow ourselves to see the truth, we may be faced with other difficult life decisions. Can we be grateful for a chance to face our fears, embrace grief, loss, and change in order to move forward and heal ourselves?

While we may never have a critically ill child, we will all face trying circumstances. Some of us will choose to live in chaos, pain, worry, and dissonance without ever recognizing that we’re making a choice. If you are struggling at the moment, can you tell yourself the truth and begin experimenting with tiny changes in your behavior? Can you take inspiration from what resilient parents have learned? 

 If so, are you willing to share your story? We’d love to hear it.

Only one thing changed. Why do I feel like EVERYTHING changed?

It’s Saturday afternoon and this weekend I have no water at my house.  My pipes developed a leak that was running even with the faucets off.  Already, I know I’ll have to replace the entire ceiling of my downstairs bathroom and part of the office ceiling. There may be more. Rather than pay a plumber’s emergency rate, I decided to dry out the environment with a dehumidifier over the weekend and have the plumber come next week. The earliest appointment I could get is late Tuesday afternoon.

 On Thursday, I had all sorts of goals for this weekend punctuated by a wedding shower I’m attending on Sunday afternoon. My running list included proofreading some recipes, working on the website, designing some new packaging for an upcoming product, and testing some recipes. I was focused on what I felt I needed to accomplish. 

 I also felt an edge of foreboding and dread knowing that I wasn’t exactly feeling up to tackling such an extensive list right then so I’d have to drag myself kicking and screaming (internally so as not to scare the neighbors) toward those goals. Bummer, but I’m in this spot more than I’d like to admit and I know I can push myself and accomplish any goal I set.  So, I jerked my bootstraps a bit tighter and set forth.

 But there was a problem. Really, problemS. Trickle, gush, slosh – everything changed! My list no longer mattered because there were immediate practical needs that superceded my well-laid plans. 

Ceiling
Before the leak, this was a periwinkle blue ceiling.

 My first thoughts in the moment were to mobilize and start a new plan.  My mind began to churn: I’ve had some recent unexpected expenses. How can I avoid going to a hotel?  I can shower at the office, except I have no clean towels. I have a key to my neighbor’s house while she’s gone, so I can borrow some water for tooth brushing and toilet flushing.  Of course, as soon as I have that thought, I get a text telling me to give the key to the dog sitter. 

 Finally, I stop pushing forward. I shift my focus. Breathe. Take a moment. Think about what’s really important.  Oddly, I notice that the moment I shift, I feel more grateful than annoyed.  Thank goodness I know how bad the leak is before I head off to work out of town for the day.  I even begin to smile as I recognize how quickly the importance of my weekend goals pale in comparison to figuring out how to manage the basic tasks of life (Where will I shower?  How can I brush my teeth?  How much water will I have to pour down the toilet for it to flush?  Do I have a clean dress for the wedding shower?). I notice I feel relieved by the chance to ditch my original list and start over.  

 Thank goodness for the occasional curve ball life throws us! When a sudden change gets our attention, and we stop planning the next moment and lean into this one, we may realize that our brains are headed down a totally different path than our hearts. 

 Okay, trickle, gush, slosh, I’m paying attention.  How can I best take care of myself through a weekend without water and still not break the bank?  What are my intentions and priorities? How will I feel if I don’t accomplish a single item on my original list?  Will I be able to sit still knowing a renovation is imminent? Can I avoid revving back up and pushing myself?

 Through the generosity of friends, I have the key to an apartment across town where I can shower and do laundry.  I hauled some water for today, so I’ve been able to make coffee, wash my hands, brush my teeth, and water the plants.  I’ve even gotten the toilet flushing figured out, although it took more water pouring than I remembered to make it work.

 The funny thing is, I keep feeling like everything is broken and I can’t do anything – watch TV, use the microwave, cook on the stove, dry clothes in the dryer, sweep the floor, wash the dishes.  That’s silly.  The gas and electricity work.  There’s no reason at all to stay at Heather’s to dry the clothes.  I can bring them home wet and use my dryer.  I can heat leftovers in the microwave, and if I heat some water on the stove, I can wash the dishes by hand.  Admittedly, it makes more sense to use paper plates, but I’m fascinated by the fact that I feel limited in other areas when only one thing has changed. 

 Yes, it’s one thing that affects many everyday tasks, but it’s only one thing. I feel like it’s EVERYTHING. I can’t seem to find a comfortable rhythm for the day. What felt like plenty of water yesterday seems like way too little today, although in reality I still have an adequate supply. Somewhere down there, I think I feel scared.  Of what? I don’t know. Just uneasy like if one thing shifted something else could too.

 I tell you this because I recognize that this may be how some of you feel when you find out you will be healthier without gluten.  One thing has changed, but it feels like EVERYTHING.  And that feels scary.

 As I explore how to best take care of myself on this off-kilter, scary day, perhaps you’ll find some inspiration for moving through your fear.  

 First, I’ll take inventory. Am I missing anything I need to eat, sleep, bathe, dress, work, or socialize comfortably? At this moment, I have enough water to drink and make coffee tomorrow plus some for tooth brushing, etc.  If I should need more, I have retrieved the keys to my neighbor’s house or I can go to the office.  There’s no real chance of running out.  I have precooked food on hand. I have paper plates. I have washed the dress I want to wear to the wedding shower.  I have purchased the cards and the gifts for the shower.  I have books, TV, and internet for entertainment, or I can go for a walk.  If I want to shower later, it’s a short drive to the apartment.  I have everything I need.

 Next, I will take the time to notice that I feel grateful for how little effort it has taken to procure what I need.  I will sit with that gratitude for a moment.  I may even get out a piece of paper and make a very specific and detailed list of things for which I feel grateful.

 If I feel too restless to be still, or like I’m speeding up into a frenzy, I will plant my feet firmly on the ground and look around.  I may grab a pillow and hold it while I do this. I will look at the colors or objects around me focusing on the tiniest details. Once I can be still, I will explore where in my body I feel the fear that is causing me to feel restless. When I feel the fear localize, I will allow myself to feel it for as long as I can at this moment.  I know that I can trust my body to support me and I know that the longer I can sit with this fear, the less likely it is to be triggered by a similar event in the future. I will exercise the courage to face my fear, but I will choose patience and kindness toward myself.  I will stop when I have reached my limit.  Then, if I need personal contact, I will call a friend.  If I need distraction, I will watch a comedy.  I will acknowledge how proud I am of myself for leaning into fear rather than running from it. If this process lasts for hours or for days, I will be patient with myself and know that eventually it will end. There is no reason to panic.

 If I pay attention, I will be presented with an opportunity to shift my point of view and move toward feeling good.  At that moment, if I choose to let go of fear, anticipation and excitement will replace it and I will be prepared to embrace joy.  Momentary happiness requires no preparation, but joy requires us to embrace our fear and let it go. I know this because sometimes I manage to do just that. I intend to practice this more often. This weekend is the perfect opportunity for me.

I am grateful for my increasing courage.  Are you prepared to join me?

Cheri

The Benefits of Cooking – Part 2: The Fun!

Some of you are probably reading this just to see how really crazy I am.  I get it.  Your initial thought when hearing the word cook may be more along the lines of: time consuming drudgery, additional work, pots & pans to wash, a disaster waiting to happen, or too much trouble…blah!   I’m with you. Those phrases don’t sound fun. So where is the fun to be found in cooking? Let’s explore the possibilities!

 In addition to providing sustenance, cooking can lead to compliments, camaraderie, spoon licking, new creations, toys, play, shopping, new friends, and chances to learn about other cultures.  Much more appealing terms to be sure, and really…is there anything better than licking the spoon?

 My fun often begins before I ever reach the kitchen. I’ll grab a reusable shopping bag and walk to the local farmers’ market.  If, like me, you enjoy fresh air, sunshine, walking, and the smell of seasonal flowers blooming, you’ll be having fun as soon as you hit the door.

 Most farmers’ markets are filled with an assortment of brightly colored fruits, vegetables, and herbs that are mouthwateringly appealing. Some also offer grass-fed meats.  Others have live bands performing and sell handmade baskets, jewelry, soaps, and clothing.  A morning of shopping and people watching often gives me enough funny stories to last all week.  At the very least, I know I’m supporting the local economy and going home with beautiful, healthy ingredients.  

 Farmer's Market Produce

 Shopping at an outdoor market can add fun when you travel as well.  I once drove through the North Island of New Zealand in an RV.  Along the route were incredible outdoor markets full of kiwifruit, silverbeet, asparagus, and oranges.  Not only were these items fresh, flavorful, and inexpensive, they provided a unique chance to meet people.  On the edge of every town was an RV park with a community kitchen.  The kitchens were stocked with pots and pans larger and more numerous than the RV kitchen could carry.  They also sported industrial size sinks and running hot water for doing dishes.  

 These $15 per night RV parks also offered electrical hookups and large community bathrooms with showers.  They were affordable and popular.  That usually meant sharing the kitchen with several locals.  There’s no better way to find out where the trout are biting, what kind of flies to use to catch them, and where you can buy the best flies.  Even though I’m not a big one to chat with strangers, the common denominator of food made it easier to strike up a conversation.

 Shopping and cooking in a foreign country can leave you with a rich cultural experience that you will never forget.  One of my favorite things to do when I travel outside the US is to visit indigenous grocery stores.  I notice the similarities to, and differences from, what I experience at home.  Some European package design is totally charming making me want to buy products on which I can’t even read the labels. 

 In the same vein, I find it fun to visit the ethnic markets in my town.  I recently tried Milk Cake upon the recommendation of the checkout girl at the Asian market.  A combination of buffalo milk and sugar, this cake is moist and dense.  While it didn’t turn out to be my favorite dessert ever, it provided a good deal of entertainment at a neighborhood dinner party when I took it in the original packaging.

 Some of us could shop ’til we drop, but then we’d never get any food on the table.  Perhaps it’s time to move on to the fun found IN the kitchen.  For those of you who love gadgets, the kitchen can offer an endless supply of specialized toys.  There are blenders, mixers, openers, graters, grinders, peelers, processors, choppers, skewers, colanders, sifters, tenderizers, muddlers, ballers, mortars and pestles, mandolins, juicers, whisks, knives, rolling pins, tongs, herb mills, thermometers, corkscrews, molds, cutters, stones, smokers, and special grapefruit knives.  Available in electric and unplugged versions, many of these can be purchased in bright colors for an additional element of fun.  If you love toys, you’ll love playing with them too.  I’m ready to chop, puree, macerate, pound, slice, cream, cut-in, muddle, grind, juice, measure, smoke, mix and match.  Whew!  Recess was fun.  Is it nap time yet?

 Coming up with new flavor combinations or preparing familiar foods in an unfamiliar way offers entertainment for both your mind and your palette.  My grandmother used to grow radishes in the garden.  She would cut the sides part of the way through to form the petals of a radish rose.  These roses formed a garnish on many of her salads.  I don’t like the bitter-hot, biting taste of radishes, and I’ve never voluntarily used one in the kitchen…until last month.  

 Ben has been building greenhouses for an organic garden.  One day he showed up with some arugula and some tender young radishes.  Feeling appreciative of the gift, I wanted to eat the radishes rather than give them away.  Since I knew I wasn’t fond of them raw, I decided to try a sauté. The result was a delicious change of pace.  I quickly consumed two servings and thought of several variations I wanted to try. I requested more radishes from the garden.  

Sautéd Radishes
Sautéing Watermelon and Red Radishes

 The next bunch arrived with the most beautiful green tops.  I decided to see if the greens are consumable.  They are!  Now I had another challenge – what to do with the greens.  I don’t know about you, but I love learning and I love puzzles.  I needed to learn more about the greens, and I had a chance to put together the pieces of a taste puzzle.  I was excited to see what the resulting dish would be.  Creating something new in the kitchen is supremely fun for me!

 The only thing that makes creating something new in the kitchen more fun is to compete with my boys in a cooking challenge.  The informal rules are that we will all cook the same main ingredient in any way we chose as long as we make the recipe up as we go.  We gather in the kitchen and the chaos begins.  We can all be quite competitive and we’re used to combining lively conversation with meal preparation.  The atmosphere in the kitchen is light-hearted and electric.  

 Last Thanksgiving, James and I had a pie cook-off.  Maybe it was supposed to be a piecrust cook-off, but it turned into a full-fledged competition.  Luckily, James wanted to make whipped cream for his sweet potato pie.  I say luckily because he makes the lightest, fluffiest whipped cream ever.  He always puts the bowl and whisk in the freezer before he starts, and he always lets me taste test when he adds the sugar.  Both of us won in the compliment department, but James’ pecan pie beat my parsnip pie as the favorite.  That’s okay.  Next time I’ll challenge with my lemon meringue pie.  And who won was not as important as the camaraderie in kitchen.  I think it’s safe to pronounce that all family fun should be topped with whipped cream!

James' Pie
James Won the Pie Contest with this Pie

 Relaxed family time can provide many moments of fun in the kitchen.  When the kids get excited because they get to ice the cupcakes and then lick the knife, when they jump up and down because you let them add the chocolate chips to the cookies, when your daughter’s friends want to eat at your house because you make macaroni and cheese from scratch, how can you not feel good about cooking? 

 I know that sometimes you’re too tired to cook.  Don’t force yourself.  Eat gluten-free cereal and milk or yogurt and fruit, or tuna straight from the package and a banana. Giving yourself a break when you really need it will leave you free to remember the fun of cooking.  Forcing yourself to perform in the kitchen when your heart isn’t in it will leave you resentful and less likely to get back in there and have fun another day!  

 Just be careful not to fool yourself into thinking that you “can’t” cook, or it’s ALWAYS drudgery, or it HAS TO take way too much time.  Sometimes it’s easier to say these things than to face our real feelings about food or to recognize that we miss the love we felt in our grandmother’s kitchen when we raided the cookie jar. Sometimes we don’t want to acknowledge that we feel pressured to DO so many things, we don’t relax enough to find the fun in the routine activities that fill our days. Please recognize that every time you stop yourself before you start, you may be missing out on a chance for a rewarding connection with yourself and with your family and where’s the fun in that?

 Cooking engages all our senses:  sight, touch, taste, smell, and hearing.  It can feed our intellectual curiosity, our desire to collect or create, our desire to make order from chaos, or our desire to get our hands dirty.  Best of all, it offers many paths of connection to the earth, our communities, our friends, and our families.  When it comes to cooking, the possibilities for fun that satisfies the body, mind, and soul are truly boundless.  

 Next up The Benefits of Cooking Part 3: The Fixin’ in which we’ll explore the skill sets we master when we cook.  Don’t worry if you’re too busy having fun in the kitchen to read it immediately, you can always go to the archives and read it later.