Tag: love

Food Is Love

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I am a big believer in showing your love by preparing food for the person.  Whenever my girls are down, I prepare their favorite meals.  For Penny, it’s Shepherd’s pie, all warm with ground meat, corn, and mashed potatoes, baked in a casserole dish.  For Wendy, it’s butternut squash risotto, bright orange and rich in flavor, complete with a little bit of nutmeg to finish. For Michael, he likes having his grandmother’s cookies, snickerdoodles, the rise and fall so quickly that they are a little bit chewy, topped with cinnamon and sugar.  It’s a show of my love, and a reminder of her love, all wrapped up together.

I remember each time we brought Wendy home from the hospital, there was always someone who had prepared a meal for us. Whether it was a meatloaf or pasta salad, knowing that someone cared enough about us to prepare something so that we could take care of Wendy, well, that felt like love. Eating is one of the things that you need to do every day, it can be a pleasure or a chore, but when you are in crisis, you often become much less discerning about what you put in your body.  You are eating to live, and you don’t always make good choices, especially when you have so much more to worry about.  

This last year in the pandemic when people were locked down, I started giving away food.  Though I have often given food away, during the pandemic it became a weekly event; I think the reason is for the connections food brings to people, even across distances, and especially when people are in crisis.  I learned how to bake sourdough bread, with a gooey starter that we had named “Gluttony.”  Every Friday I would bake four loaves of bread, the family would keep two loaves and we would deliver a loaf each to people whom we thought needed a little pick me up.  On Thursday evening, the night before I would bake, we would discuss who would get the loaves.  Maybe it was a couple who had just had a baby or a counselor who was suffering from covid fatigue,  or maybe it was a neighbor who had a tree fall on her car (true story!)  We even had a spreadsheet for each week to determine who would get a loaf of bread.  Then Wendy would drive the car, Penny would do the running, drop the bread, ring the bell, and we would all drive away.  Sometimes we needed to get the address of the person (both girls wanted to drop bread off at their teachers’ doors) and so I would have to tell them what we were doing. But we called ourselves the Bread Bandits and in that crazy time of isolation from others, we still managed to feel connected.

I still give away food, when someone is sick or grieving, I drop off some soup or some bread, or both!  Nothing says love like food, it’s just that simple.  And I’ve even started giving away hot dinners. If we have food from dinner that I don’t think will save well, I put it on our town facebook site and offer a free dinner or two, to someone who can pick it up that night.  Honestly, it usually gets taken within ten minutes, and though I would love to think that it’s because of my cooking, I think it’s more likely that it’s because food is love, and people need more love in their lives.  

So if you are reading this, cook something for someone you love.  Leave food for someone who needs it. And thank someone who does the same for you.  

Storms Make Trees Take Deeper Roots

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Fitting into the working world as a mom of a chronically ill kid can be challenging.  I have found that for the most part, part-time work has been the best fit.  It’s flexible, it’s convenient, and it allows me to still take Wendy to doctor’s appointments, or call insurance companies, or figure out prescriptions and durable medical devices, or whatever.  Being the mom of a chronically ill kid can be a lot of work.

But I still want to be a professional, and I have trained to be a historian, or a teacher of history.  For the past ten years I have worked part time as a history adjunct in both Vermont and Massachusetts.  Recently, the college where I worked shuttered its doors.  It was devastating to all involved:  students, professors, and administrators.  We had all been cut adrift with not so much warning; we were told in April that the college would close in May.

So I needed to take stock of what I had done for the past ten years.  I had cared for my very ill child, I had advocated for her in a hospital setting. I had monitored and adjusted her 24 different medications, her three different insurances, and her doctors in three different states.  I had spoken at Grand Rounds, had spoken to medical students and new residents.  I had helped to revise documents released to the public about medical conditions.  I had created a welcome video for children when they arrived in the Emergency Department, sick and scared.  I had lobbied politicians and representatives for medical insurance rights.

Here’s the thing:  no one cared.  No one in the medical world would give me a job based on these qualifications.  They thanked me for my service and after the initial interview I never heard from them again.

I also applied to many different part-time teaching jobs.  I had lots of experience, I’ve taught lots of different subjects, from world history to American history, to Native American, African American and women in American history.  I’ve taught courses on totalitarianism and brought students to concentration camps.  But when I was asked why I worked part-time, my response of taking care of my daughter while working was seen as a liability.  They thanked me for my services and after the initial interview I never heard from them again.

Let’s be clear:  I’ve worked hard for the last ten years.  I’ve had to do things to and with my child that I would not wish on my worst enemies.  I have been brought to the edge of sanity with grief and worry and sleep deprivation.  But as I suspected long ago, the rest of the world does not value that kind of commitment, or organization, or dedication to taking care of my child.  Most people see me as a liability, though I’ve never missed work, I’ve always managed.

I’m an excellent teacher.  I’m an excellent caregiver.  I can be both.  I have been both.

This time has really damaged my self-esteem, because even though being a parent of a chronically ill kid is hard, to be honest, I really thought I had my shit together.  The college closing was like a slap in the face,  the world I had created was shattered like a false mirror, revealing what the rest of the world really knew, really thought of parents of chronically ill kids.

I wondered if keeping this blog, after my experiences this spring and summer, was just an exercise in vanity.  Maybe, I thought, I should stop writing.  But I realized other people, other parents, must feel the way that I do, working the hardest job in the world, and feeling undervalued by society.  So I’ll keep writing, at least for now, or until no one reads the blog posts anymore.

As a postscript, I have found a job, and I really love it.  The problem is that it’s full time, and I’ve been struggling mightily with the other aspects of care.  My chronically ill daughter and her doctors’ appointments and insurances.  My other daughter who is well but seeing less of her mom.  My husband who is valiantly picking up my slack in those departments and whom I couldn’t do any of this without.  I’m sure that these will be other blog posts in the future.

Moms and Dads of chronically ill kids, know that I value you and I know how hard you are working.  I know from experience.  The world may not value the struggle but other parents recognize the hard work it takes to resemble normal.

Keep going.  Storms make trees take deeper roots.

Please Ask Me About My Bikini

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This summer, I will be wearing a bikini.  Not because I lost a lot of weight.

I haven’t.

Not because I have a burning desire to wear a bikini again.

I don’t.

The reason is because I have two daughters, and I want to show them that bikinis are ok, no matter who wears them.  Short, tall, skinny, fat, no matter the skin tone or the cellulite.

Let me tell you how hard this is for me.  I haven’t worn a bikini since I was in high school.  I’m not a small woman.  I don’t especially like to be looked at, especially when I’m in a bathing suit.   I couldn’t find a single picture of myself in a bathing suit, even though I lived across the street from the ocean for all of my childhood and went to the beach almost every single day.

Like most women,  I am very conscious of my weight, and am a product of a lifetime assault by the media about what my body should be.  I was on my first diet when I was in the third grade.  I read all those teen magazines trying to determine my shape and size.  I’m a pear, by the way.  I went through the low fat phase, I’ve joined Weight Watchers and LA Weight Loss.  Until this last house purchase, I didn’t own a full length mirror because I never especially liked what I saw, so I chose not to look.  Like our President who gives women a number, I graded myself with letters.  I was an A-B-C:  A intellect, B face, C body.

My parents have also always been on a perpetual diet, trying to lose weight for the next event:  reunions or cruises or the next beach season. My mother went through the slim fast phase, the cabbage soup diet, the grapefruit diet, the magical drops diet.  You name it.  They also were especially helpful monitoring my diet as a kid, limiting my portions, especially of sweets.

Since I’ve had daughters, I have tried mightily to not transfer my weight issues to my girls.  Our goal as a family is to eat healthy foods, make good choices, and stay active.  I’ve been in road races and triathlons.  I swim at least once a week.  The girls are active in team sports and individual competitions.  We don’t have women’s magazine in the house.  We don’t even have a scale in the house because I didn’t want the girls to see me worry about my weight.

So it came as a surprise to me when my daughter, Wendy, didn’t want to wear a bikini.  She’s thirteen, very active, and pretty self assured.  She also swims competitively.  The thing is, that a bikini would be so much easier for her because she has two medical devices on her body because of her diabetes:  an insulin pump called an OmniPod and a continuous glucose monitor.  A one piece bathingsuit is harder to get on and off and has a much better chance of knocking off the devices, causing lots of trouble (our insurance only covers so many applications per month).

Because she’s thirteen, I thought maybe it was a body image thing, as in, she’s got all these new curves now, so maybe she’s not exactly sure what to do about them.  So I talked to her about it, saying I really wanted her to try a bikini, that I’m sure we could find one she was comfortable in.

She replied no, over and over again.  It turns out that she doesn’t want people to see her scars.

Wendy has a constellation of scars on her abdomen.   The right hand side is from some intestinal surgeries.  The left hand side is from her kidney transplant, and the star shaped scar on the top is from a peritoneal dialysis catheter.  The truth is, you don’t really notice them, at least I don’t.  They’re not ugly or red or jagged.  When she’s examined by surgical residents at the hospital, they look at them in wonder, like they’re kids looking at the window of a candy store.  Those scars, to me, show me that she is a warrior, and they’re something to be proud of.

But she was afraid that people would see them and ask her about them, and she would be forced to give her whole medical history at the pool or the beach.  I get it:  that’s a lot for a thirteen year old.

So we made a deal.  If she was willing to try on some bikinis, and found one she liked, that I would wear a bikini too.  I told her, “Don’t worry kid, If I’m wearing a bikini next to you, nobody is going to be looking at your scars.”

Well guess what? She didn’t just find one bikini she liked, she found two.

So…I’m not going to lie…..I panicked a little.

I am ashamed to admit that my first instinct was to go on some radical diet, but what exactly would that showcase to my daughters?  That only perfect bodies wear bikinis?  Wrong.

I told some of my best friends, who had a myriad of reactions. Some sent me suggestions that were over the top, ridiculous.  Star Wars themed, gold mesh, or string bikinis that  were smaller than a tissue. I wouldn’t be able to blow my nose on a triangle that small.  Some friends asked me if I could take it back, go back on my word, or wear a tankini.  That  would reduce Wendy’s trust in me, so I couldn’t do that.  Some friends shared their own insecurities or their negative body image.  Some friends applauded me.

Buying a bikini wasn’t the easiest thing in the world, but I found a lovely size 12 black bikini with white polka dots.  I bought a lovely cover up to go with it.  I’ve got a hat.

One thing is certain:  I’m going to need a lot more sunblock.

I’m not going to say that I’m going to love every minute  of wearing this bikini in public.  But I am going to “fake it until I make it” with confidence.  That is the very least I can do for my daughters.

I want them to know that their bodies are beautiful and powerful and theirs alone to love.

So this summer, if you see me, and I’m in my bikini, please ask me about it.

Here’s What I Will Tell My Girls After the Election.

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I’ve been struggling this election season.  I’ve been having a hard time trying to find the good in all of this.  I’ve worried about what my girls hear in the news.  I worry about the assault discussions, the accusations, the lying, the accusations of lying.  I’ve worried about them seeing two people, people who have been nominated by their political parties to be the next leader of the free world, bicker and shout at each other, sling mud at each other, threats to investigate and incarcerate, calling their supporters deplorable.

These things are the exact opposite of what I teach my daughters the way that they should live in the world and the way that they should interact with others.  We do not shout at each other, we give each other time to talk.  We do not accuse each other falsely.  We do not, under any circumstances, lie.  And we are proud of our bodies and our place in the world; no one can take that from us with words that demean us.

So, this election has been a long row to hoe, trying to help them to navigate through the rhetoric.  Michael and I have taken issues individually as they have come up.  No, it is not right to start violence in a rally.  No, it is not right to set fire to the other party’s headquarters.  No, it is not right to sell guns with pictures of the opposition on the targets.  No, it is not right to grab a woman by her vagina and brag about it.

No, it’s not right, has been my go-to response this election season.

And I feel like that needs to be turned around, my response is not enough.  It is reactive and at the end of this extra-long, extra-dirty election cycle, I decided that I need to come up with a proactive list of statements for my daughters.  After some reflection, this is what I came up with.  This is what I will tell them after the elections are over.

Number One:  You are beautiful and talented.  Someday, a person will see your inner light and will love you for it.  They will want to be with you because of whom you are and what you stand for.  They will love all the parts of your body and they will tell you that.  But you need to love your body too, because it is strong and resilient and has carried you through many hardships.  Your scars are your battles that you have won.

Number Two:  Do not ever, EVER let a person demean or belittle you to think that you are not the amazing person that you are.  Speak to the meanness, say you will not tolerate those words.  You actually have to say that.  You have to say, “I will not tolerate what you have said to me.”  And they will either change, or you need to leave.  Sometimes the leaving hurts, but you do not need that person if they are going to diminish your inner light.  Sometimes walking away from toxic people is the most rewarding thing you will do in your life.

Number Three:  Words matter, names matter, accusations matter.  You cannot say one thing and mean another.   You cannot tell half truths.  One of the only things we have in this life for sure is our integrity, and you cannot lose it.  People need to rely on the fact that you are good on your word, that you tell the truth, even when it’s not popular.  Life is about choices, but in our hearts most of the time we know the right choice to make.  Stand on the right side of decisions, on the right side of history.

Number Four:  We are put on this earth not just to survive, but to make it better.  We each need to find the unique thing that we can do, either big or small, to improve the world.  The country has lost sight of the fact that we are one big community, and we need to take care of each other.  Find the thing that moves your soul and makes the world a better place and you will have found your calling.

Number Five:  There will always be people with whom you don’t agree.  Be sure you listen to their whole argument before you respond.  Listening is a gift you give to others, it tells them that they are important.  You do not have to change their minds, but an open discussion will lead the way to more open discussions and more open minds.  It never hurts to see the other side of an argument even if you don’t agree with it.

Number Six:  None of these things will be easy, but we are here with you to help you.  Your family is here to build you up and keep you strong.  There will be days that are hard, and you will wonder if you have enough strength to fight the good fight, but you do.  You do.  And those who love you will support you.  Always.

Number Seven:  You can be anything you want to be.  Anything.  Even President of the United States if you want to.  And I can’t wait to see what you will become and how you will impact this world.

—–

I am tired of this election.  I am weary.  I am worried that the vitriol will continue and will poison young minds.  We have to speak to this as parents, to let our kids know that this is not ok, this is not what we condone as civility.

It’s not who we are.  It’s not who they are.

We need to lead our children back to kindness, back to confidence, back to finding their own true passion.

No matter what the politicians say.

 

 

 

 

 

 

 

Diabetic Misadventures In Italy

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I love coming back from vacation and telling my friends and family about it.  Ok, I don’t really love coming back from vacation, but I do love sleeping in my own bed, petting my kitty cats and seeing friends that I’ve missed.  This year was a very special trip to Italy and its large southern island of Sicily.  While there, we visited with family and friends, we returned to the site of our marriage fifteen years ago, and we saw amazing places along the way.

Upon our return to the States, I tell our friends and family about swimming in the Tyrrhenian Sea, about eating at the same restaurant we did on our wedding night.  I talk about the flavors of Gelato, beautiful candy and earth colors of them lined up along the freezer, and of choosing new flavors like jasmine or pistachio-chocolate or green fig.  I tell them about the massive Greek temple ruins that the girls clambered along, about the graceful Baroque churches, or about the bell-towers or domes we climbed to get the best view.  I might tell them about the harrowing drives along the Amalfi Coast, with narrow roads hugging the cliffs or navigating traffic in Sicily where the street signs and traffic lights are more like suggestions than laws to native Italian drivers.  Maybe I share stories of encounters with the locals, like the sausage man who threw rings of salami in the air to the kids and persuaded us to buy a link as long as my seven-year-old’s arm.  These are the stories I tell them.  These are the stories that they want to hear.amalfi coast

But vacations are not all wonderful moments, and when you have a child with special health care needs, you not only have to plan more, but you have to be ready to roll with the punches when they come along, and that’s all a part of the journey, but not a part anyone wants to hear about.

My twelve year old has multiple health problems, but one of them is that she is a type one diabetic, which means that she cannot produce her own insulin to digest carbohydrates.  We have to give her insulin with every meal based upon what she eats so that she will stay healthy.  This has to be given subcutaneously, or under the skin, in order for it to work.

The first moment of terror for me this vacation was when I realized, suddenly, that we had foolishly forgotten the extra insulin for my daughter at home.  We had enough for a week, but we would be away a few days longer than that.  Calls were made to our insurance company, and we discussed overnight shipping, ice packs, and reliable addresses.  This didn’t sound like a good option.  So I learned how to say in Italian, “My daughter is a diabetic, and I would like to buy some more insulin,” Normally, my Italian is limited to restaurant menus and directions to the WC, so this was a stretch. We were in a tiny hill town called Castel Gandolfo, some twenty miles south of Rome, it holds the summer palace of the pope and contains the dairy cows used to make his special milk.  It sits on the edge of an old volcanic crater that now has a lake.  Our apartment looked out over the lake and we could walk the whole circumference of the hill town in under a half hour.  We went to the first farmacia, the Italian word for pharmacy, with a green fluorescent cross outside its door, located in the shadow of the summer palace. The pharmacist understood what I was trying to say, but told me in Italian that he didn’t have what I needed, but not to worry, other farmacias would, I just needed to keep looking.  Ok, onto the next stop.castello gandolfo

This was the town of Amalfi, when fifteen years earlier my husband and I got married in the presence of a handful of close friends and family.  We had planned to have dinner at the same restaurant as we did on our wedding night, so we arrived early to the town, walked around and waited for the restaurant to open.  I spotted a farmacia tucked away in a little square.  Amalfi is a seaside community, with steep cliffs and rocky beaches, and I was standing in line at the farmacia with beach goers who had gotten too much sun or mothers that needed more formula for their babies.  But luck was with me, the woman at the farmacia produced what I needed:  a vial of Humulog.  I finally was able to relax knowing that we could take care of our daughter for the whole vacation, and get insulin as we needed it.

noto dome

Which was good, because we needed it again, in a more dire way.  My daughter wears an insulin pump, and we were in the small Baroque town of Noto in south east Sicily.  We were admiring the large cathedral in town that was showing off its new dome, because the old dome had collapsed in the 1990s and it had just been reconstructed.  The church was beautiful, clean, cream colored, with gorgeous statues along the walls and spacious pews making the whole church feel light and airy.  When we heard the high pitched alarm, we knew immediately what it was, Wendy’s insulin pump had malfunctioned, and needed to be replaced.  I sat in a corner of the church looking at a statue, getting out the medical supplies, and making a new “pod” of insulin so we could put it back on Wendy.  That involves disconnecting the old pump, filling a new one with a large syringe and a vial of insulin, making sure it works, then re-attaching it, and turning it back on.  I wondered if anyone was going to stop me with the large medical bag and beeping equipment, but no one did.    I filled the new pod with the last of the insulin, and then I handed it to Wendy to apply it in a bathroom with an alcohol pad.  Normally I would help her, but Italian bathrooms are notoriously tiny, so she did it herself.

We walked around the lovely town thinking we had dodged a bullet, climbing the bell tower and looking at the magnificent view, but when we found a local trattoria and ordered our dinner, we noticed that Wendy’s blood glucose was too high and gave her a bolus of insulin before dinner.  It didn’t work and she went higher, so we gave her another bolus, but that didn’t work either.  Something was wrong.

It turns out that Wendy didn’t apply the new pod well to her skin and it wasn’t working.  I had used the last of the insulin on the new pod, and we had more in the refrigerator back where we were staying, an hour away.  We were with another couple, a childhood friend of my husband and his family, and we had all visited the town together, had dinner together, and we had promised the four children gelato if they did well in the restaurant.

single gelato

The problem was that Wendy’s glucose was too high to go untreated and give her gelato too.  It would have sent her sugar up to dangerous levels.  But all of the other kids were expecting gelato, in fact, the town of Noto is supposed to have the best gelato in Sicily.  We couldn’t tell them just wait while we drive an hour to get more insulin, reapply a new pod, hope it works, and drive back another hour.  It was late, it was dark, and the kids expected the best gelato in Sicily.

An option could have been to let the other kids have gelato but not Wendy, but honestly, that would be a scarring memory for her, and while we want her to know that she is extraordinary, we want her to know that she is normal too, that she can do normal things, just like the other kids, and that includes sampling the best gelato in Sicily.  Imagine watching your friends all eating gelato and you can’t at the age of twelve.

Now tell me what you would do as a parent.

Farmacia Italy-746316

So we went to a farmacia in Noto.  I spoke my sentence in Italian.  The first one didn’t have a vial.  We walked to a second one, and thank God, they did.  We opened the box, opened the vial, pulled out an insulin syringe that I also happen to have with me in the medical bag, calculated what she would need to give her to both reduce her glucose and give her insulin for a gelato too, and we filled the syringe, gave her a shot in the arm right there in the farmacia, admist little boys with tummy aches and people who needed band-aids, handed the used syringe to the pharmacist to dispose of safely, and we left the store.

Then we walked to the restaurant with best gelato in the world and ate it.

And it was delicious.

After it was all over, after the alarm, the new pod in the church, the dinner, the two farmacias, the injection and finally the gelato, it had taken the better part of the afternoon and evening, just for one little girl, just for one diabetic, just for one vial of insulin, just for one cup of gelato.

And what was the best part of the day for me?  My twelve year old, when it was all over and we were walking back to the cars after the gelato, ready for the drive back to where we were staying, took me aside by the arm, kissed me on the cheek, and thanked me for going through all of that.  She understood the effort it took, and she was grateful. That’s what I’ll remember, not how hard it was, but how much she appreciated being able to be just one of the the other kids joking and laughing and eating the best gelato in Sicily.

This is not a story I’m necessarily going to share with my family and friends when I get home.  Why not?  It’s not exactly what they want to hear.  They want to hear about the swimming and the churches and the beautiful art, the stories of the crazy drivers and the marketplace hawkers.  They don’t want to hear about the hard stuff, the worry, the difficulties.  Vacations are supposed to be fun, right?

But to me, this isn’t just a vacation, it’s showing my daughter that her medical difficulties can be overcome, that problems can be sorted out, even in another country, even when we don’t speak the language.  That if she really wants something, we will find a way.  That she shouldn’t be held back by the difficulties, but should look at them as challenges to be worked through.  Yes, it’s a beautiful location to learn this lesson, and yes, we are lucky that she’s healthy enough to do the travelling in the first place.  But to me, the travelling is showing her that solutions are possible.

The rewards can be sweet.

Pattern of Acceptance

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Once you get a diagnosis, how do you get to the point where you’ve accepted what’s happening to you, your child, your family, your life?

You may have heard of the Kubler-Ross model of grief.  At first it was applied to death and dying, but it has been spread out to many different kinds of grief.  You probably read about it in your psychology college textbook, because it’s not new.  I ran across it when Wendy was in the hospital and I realized that I was mourning our old life, the life before Wendy got sick, so I did some searching and rediscovered the Kubler-Ross model.  I am by no means a psychologist, but this helped me to get some perspective on our situation with a new diagnosis and a child that was never going to be the same again.  It’s a scary time, and your feelings and emotions run the whole gamut.  Sometimes I still check in to see where I am on the continuum.

But now, I like to think of it more as a pattern of acceptance than stages of grief.

Denial:  The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.  I remember thinking not that the doctors were wrong in everything they were telling me in the “Room of Doom” in the PICU, but I remember thinking that they must be exaggerating.  They weren’t.  I hoped that once we got home Wendy would improve.  She didn’t.  I remember the night I realized that she wasn’t going to get better.  She just wasn’t.

Anger:   This is often accompanied by guilt.   “Why me? Why her?  What did we do to deserve this?”  I remember walking up and down the streets of Beacon Hill being jealous of families that were enjoying the summer.  There was a woman who was yelling at her child by the “Make Way for Ducklings” statues because he had gotten his hands dirty from his ice cream cone and it was all I could do to tell her to get over it, enjoy this moment, because your kid could be in the hospital right now.  Thankfully I kept my mouth shut.

Bargaining:  This is a hard one.  It involves the hope that we can somehow avoid this outcome.   I could understand why people go to the ends of the earth to find a miracle cure for their child.   People facing less serious trauma can bargain or seek compromise.  Sometimes it works.  My father said if Wendy survived that he would quit smoking.  You get the idea.  It’s trying to find what you can do to change the situation.

Depression:  This stage can last a long, long time, and some people argue that in part of this stage, Anger comes back.  Everything feels hopeless and you feel rudderless.  All of your expectations and plans have to either be put on hold or moderated. You wonder how it can all be so hard, and why it’s so unfair, especially for your child.  You might want to find a counselor to talk through your feelings.  It’s really hard for a long time, and then at some point you realize it’s not quite as hard, and you slowly move toward the next stage.

Acceptance:  “We’ve got this”.  This is the idea of doing the best you can with what you’ve got.  Gratitude sets in and you might find yourself being happy and being surprised at the happiness. You realize that life is moving on and you’re moving on with it.

I think, though, that for parents of chronically ill kids, that there can often be another stage:

Empowerment:  This is the stage where both you and your child take the hand you’ve been dealt and play it.  When you join advocacy groups, when you allow you child to re-join sports or after school activities or when you begin to travel again.  When you do the things you love even with the obstacle, even when it’s not exactly the same. You may be a mentor to other parents of chronically ill kids, or you may write or speak to groups.  Or you might not.  Just doing the best you can is enough, and it’s inspiring to others.

Other members of your family will find acceptance at different rates.  For us, one family member stayed longer in anger, one stayed longer in bargaining.  It’s totally an individual journey, and it’s important to realize that we don’t all come to the same understanding at the same time.  It takes a really long time to be ok with your life not being what you expected, and a new normal grows and takes hold, along with real, genuine happiness and gratitude.

The other thing that I want to say is that in this continuum, you might be knocked backward into other stages or have to start all over again with a new diagnosis.  We’ve been dealing with some new symptoms for Wendy and I’ve lately been keenly aware that we might be starting this cycle all over again, but that’s OK, we’ve done it before and we will do it again.  But that won’t mean it’s not difficult, or heart breaking, or painful or nerve-wracking, it just is.

Finally….when Kubler-Ross was interviewed years later, she said that she regretted putting the stages of grief into concrete categories, because while these are common stages, they aren’t definitive.  Where is room for confusion?  For frustration?  For complications?  For disillusionment?  These things that you feel, they are normal to feel.  Being aware about them, being in touch with your feelings and being able to both experience them and express them, will hopefully help you to heal.  Be gentle with others who are on this path with you.

Empathy goes a long way in the healing process.

Picture:  A winding road in Tuscany, leading to Montalcino.

 

Communicating During Crisis

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In the beginning of Wendy’s hospitalization, Michael and I arrived at Massachusetts General Hospital at different times.  I had first flown with Wendy from our home in Vermont to Dartmouth Hitchcock hospital in New Hampshire.  Then a few hours later when it had been determined that Wendy was in kidney failure, she and I were taken by ambulance to Mass General.  Michael and my mom followed later in the car, and typically, got lost in Boston because everyone does.

After we had both arrived and had gotten settled, one of the first things we did was go down to the coffee shop in the hospital.  We knew that we were in for a long haul.  Suddenly we were two states away, our parents were arriving, and we knew that things were going to be really tough medically, emotionally, financially, all of it.  In a whirlwind of chaos, we knew that we had to set down some guidelines for communication, and stick with them.  We were both horribly scared, but we knew that we had each other, and we had to keep our lines of communication open.  We agreed to some ground rules:

Be kind with your words.  “Don’t ever say anything that you can’t take back.” You know those words, spoken in anger, using absolutes like, “You Never” or “I Always”. Those aren’t helpful. We are a team and we will act like a team.

Be honest with your emotions. Just saying your emotions out loud makes you feel better because you’ve put a name to them. “I am scared” is a powerful phrase.  Don’t expect to have the other partner know how you are feeling, you need to state it.

Say when you need a break. Sometimes we need to take a step back, get a cup of coffee, walk outside and breathe a little fresh air. We would feel overwhelmed at some point in this journey. Those few minutes where you can separate and regroup your thoughts will save you in the long run.

I honestly believe that this agreement preserved our marriage.

These ideas didn’t fall out of the sky, we had done these things, more or less, over the years.  We had learned good communication through a number of avenues.  One way was living in the Czech Republic together. After dating for about a year, and after we had both graduated from college, we had the crazy idea that we would move to Prague and teach English to Czech students.  We didn’t quite realize the situation we had put ourselves into.  We had arrived in a small town well outside of the city and were essentially the only two people who spoke English.  Unlike western cities that had dual languages for menus or bus schedules, everything was only written in Czech. This made for humorous meals at the local restaurants when all we could do was point to something on the menu and hope for the best.  The other “English”teachers in our schools were the former Russian teachers, who were told overnight that they needed to switch to teaching English or face losing their jobs.  Not only was their English not good, but they weren’t thrilled to have native speakers teaching along side them.  We were on our own.

Michael and I lived in a single converted classroom in one of the two schools in town.  It was inconvenient, especially because it also housed the early care for children, who liked to just walk in to see what we were doing.  There was no telephone, and it was only the dawn of social media.  The situation was less than ideal.

We realized quickly that if we had an argument that there was no one else to talk to in the whole town.  Necessity became the mother of good communication.

Prior to that, we also had experience with something called a “Full Value Contract” from Gettysburg College, where we both attended.  A full value contract was introduced to us through Gettysburg Recreation Activities Board, or GRAB.  The idea was that everyone had an equal say and it was up to the individual to be clear with how they were doing, as no one is a mind-reader.  Neither Michael nor I were in GRAB, but one of our best friends, Hutch Hutchinson, was one of the first student leaders, and he led trips for student groups, including groups that we were in.   Michael and Hutch hiked 500 miles of the Appalachian Trail together.  (Hutch continues this work at Boston University, where he leads the Common Ground seminar for first year students.  You can see a video of it here.)  “Full Value Contract” was a part of the vocabulary we brought with us to the Czech Republic, and it served us well.

Lastly, Michael and I knew that when we were stressed, that we used a certain “tone”.  You know that tone.  It’s 50% of communication, and when the words and the tone don’t match, it’s the tone that trumps the conversation.  Way before we got married, we agreed to state when a day was going to be stressful.  We would say, “Today is going to be tough, so I want to say I love you now, in case I forget later.”   This might include buying our first house, or going on a trip, or going into labor and having a baby.  This was an inside joke, almost a code for us that we needed to treat each other well not knowing what the day held in store for us.

We brought all of these tools with us to the hospital, and yet we still felt the need to take time away and actively state our three ground rules for communication when we got to the coffee shop.  This isn’t the recipe for every happy family in the world that is going through the trauma of a chronically or terminally ill child.  But what I’m saying is that you have to find what works for you, what will sustain you even through the darkest times.  Only you know what will work for you and your partner, but they key is to find it, agree to it, and stick with it.

It will serve you well in the long run.