Confessions of the Alpha Parent

I am the Alpha Parent.

I’m pretty sure that for families with a kid who has special health care needs, there has to be one parent who has more control over the medical life of the child.  I have to say that my husband does a lot:  when Wendy is an inpatient at the hospital, he is the one who does the overnight shifts.  When we are home,  he gets up at two in the morning every night and checks Wendy’s blood sugar.  He is there in the morning to give Wendy her first round of medicine.  He helps with site changes for both her insulin pump and continuous glucose monitor.  And he is the one who largely deals with the health insurance that is connected to his employment.

In short, I am by no means alone in this partnership.

However.

I am an adjunct professor at small college ( I teach three classes per semester).  It’s part-time, so much of the day-to-day responsibilities fall to me.  These include, making Wendy’s lunch with a break down of the carbohydrates, having near encyclopedic knowledge of all of the carbs in her life, checking her blood sugar and making adjustments to her insulin ratios as needed, keeping in contact with the school nurse, making and keeping appointments with Wendy’s doctors, along with other tests and bloodwork, keeping track of her prescriptions, and being the “parent on call” in case of emergencies.  These emergencies might include high blood sugars, fevers, or symptoms that might land Wendy in the hospital.  Because she is immune suppressed, she gets sick easier and faster than other kids and it is a constant, everpresent fear.

This is, of course, in addition to the normal parenting duties: carpools, after school activities, sports, sleepovers, cooking dinner, and keeping the house clean enough so I’m not mortified when we have company over.  Oh, and then there’s the never ending paperwork for all of the above, and the fundraisers for Diabetes Camps and Transplant Olympics, and the few committees that I’m on at the hospital to make it a better place for sick kids.  It’s  a lot of work, parenting is hard, and these extra health issues make time tighter and more stressful.  I always maintain, though,that none of us know what we signed up for to be a parent, and we walk the path that we are given.  Mine just happens to have a lot more medical intricacy than most.

The bottom line is that, ultimately, I’m the one that keeps it all together.  I keep both the pantry and the medicine cabinet stocked.  I make sure that appointments are made, met, and followed up on.   I have the memory of all the medication, the insulin ratios, the carb count of numerous items, all that I can recall on command, along with most of Wendy’s current blood chemistries and her A1C.  I keep the ship afloat, so to speak.

So what happened when I was offered an opportunity to go with a group of students for a week to Central Europe to study the Holocaust?

Well, to put it bluntly, I panicked.

The thing was that  I really really wanted to go and had  a lot of offer my students:  I used to live in Central Europe, I’ve written a novel about it, I know the cities, the people, the culture, the history.  I’d be really good at this thing, leading students through holocaust sites and memorials.  It would be intellectually fulfilling and meaningful to me, as most part-time jobs just tend to be place holders for someone else, this would be real work that would affect the global outlook of these students.

I hadn’t been away from my family for a week since Wendy was born, and certainly not since she had gotten sick.  Michael had been away a few times, for a week or longer, but the longest I had ever been away was for four nights, and that was only with one child.  Now we had two.

Michael  was supportive of the trip.  He said I should go, that he would handle it.  So I set a schedule with all the names, dates, and phone numbers of the extra kids I pick up in the morning, or kids that come for an hour after school, all of the minutia that I probably hadn’t told him throughout the weeks.  I stocked the fridge with easy meals (Michael doesn’t cook) and I made sure that there was enough medicine. I also made sure that there were no doctors’ appointments, outstanding library books, or gaps in child care.

Then I took a leap of faith and left.

And nothing happened.

By nothing, I mean that I had a fantastic time.  I got to see a lot of places I haven’t seen in years, I got to be the “resident historian” on the trip, and I got to have real interaction with students, many of whom were going to Europe for the first time.  I missed my family, but they had a normal week, with all of their activities and events.  No one landed in the hospital, no one had an emergency.  It all went smoothly.

This fall, I was asked to go again over spring break 2016, same cities, same schedule.

I said yes.

And, predictably, I panicked.

AGAIN.

I guess that I’m a little bit of a control freak. As long as I have everything scheduled and monitored, I feel like I’ve got the best chance of keeping Wendy out of the hospital.  Fortune favors the well prepared.  But being in Europe fosters all of the “what ifs” in my life.  What if she gets sick before I leave?  What if she gets sick while I’m gone? What will Michael do? Who will watch Penny?  How long will it take me to get home?  Will my family feel abandoned?

Seriously, these things run a loop through my mind, along with the accompanying guilt and worry.

Having said that, I know that Michael is incredible and capable.  I know that we have a caring community filled with people who would help if there was a problem.  And I know that we have family that can fly in if necessary and get there before me.  I also know that Wendy’s in a really good place, that her health has been stable for a while, and that in the future it may be more questionable for me to leave, right now it’s a safe wager to go.

But as the Alpha Parent, it’s really hard to let go of the worry and guilt, which ultimately lead to doubt.

It’s the doubt that I have to overcome.

(Photo:  The John Lennon Wall, Prague)

“Life is what Happens when you’re busy making other plans.”  –John Lennon

 

 

 

 

Normal is a Moving Target

We went in to the hospital with a child who at the age of three was already potty trained, swam in the pool without a flotation device, and was so active, she probably could have been considered hyperactive.Eight weeks later we were discharged with a child who was an insulin dependent diabetic, with high blood pressure, and a long list of dietary restrictions, who needed medicine a few times daily, and who had to have her blood sugar monitored, food measured, carbs counted, and insulin given.  She had trouble walking and eating.

While in the hospital,  I had learned how to take her blood pressure, how to give insulin shots into an orange, and what medicines she needed.  But I was terrified that suddenly I was going to  be in charge of doing all of the things that needed to be done.  It was a whole new normal and it was totally overwhelming.  I remember wondering if I was up to the task and also knowing that I didn’t really have a choice.

That was almost nine years ago, and I can still feel the panic of the first discharge day in the pit of my stomach when I recall it.  I’ve learned a lot, which can be boiled down to just a few suggestions.

Take stock of what you need.  Just like bringing a baby home for the first time, you’re bringing home a child who needs special care.  Just like you make preparations for the new baby with diapers and onesies, wipes, and blankets, you have to be ready to take care of this sick child.    Do you have all of your medication?  Do you need to make a schedule for the medication?  My husband set up an alarm system on my tablet that beeped and told me what medication to give when.  We arranged little cups with the medication all drawn up before we went to bed with times labeled on the cup “11 pm” , “2 am”, “5 am” so we knew what medications to give at what time, even when sleep deprived and groggy.

We developed similar solutions for breakfast.  I was terrified of trying to count carbs first thing in the morning before coffee.  However, I also knew that Wendy basically ate the same 10 things for breakfast, so I wrote them down on a piece of paper with the correct carbs and taped them to the kitchen wall, so I didn’t have to keep looking up the 10 items over and over again.  After a while, I just knew them.

Determine who or what your resources are.  Is there someone in the area who has a similar situation?  For us, there was a parent’s group for diabetic kids at the doctor’s office.  We would meet once a month for lunch and talk about challenges we were encountering.  They would have good ideas from their own experiences and trials.  I’m also a member of some facebook groups for parents of kids with Wendy’s kidney condition, and I am a part of a group called STOP Foodborne Illness which gives good advice on food safety. They set me up with a buddy parent whose child had gone through a similar course with her illness and it was incredibly helpful to be able to talk with a parent who knew exactly what I was going through.

Ask for help when you need it.  We had a very specific problem:  Wendy  had diabetes and kidney damage. The diet for diabetics has a lot of protein in it, while the diet for kidney damage seeks to limit protein that has a lot of potassium (like meat).  I couldn’t figure out what to do, so  I asked Wendy’s pediatrician and she referred us to a dietitian.  Together we figured out what was the best solution for eating for Wendy.  Again lists of foods were written down and taped to the wall, so they would be easy to access when I needed them.  Neighbors found recipes on a site called DaVita that had both kidney and diabetic options, and then, bless them, they took turns making those meals and bringing them to our house so we could figure out the rest of this new normal.    We also asked for a visiting nurse to come once a week to help with some more difficult medical issues that we couldn’t manage alone.

But normal is a moving target.  There will always be stumbling blocks, there will always be new problems that need solving.

Here’s a recent example.  I was waking up at 2 in the morning, every morning, totally stressed.  I was worried about Wendy’s new medication.  Her new blood pressure pill looked exactly like her Vitamin D pill.  I was worried that I would accidentally give her the wrong one, which would be a huge mistake.  There had to be a solution to this problem, that would let me sleep at night.

I went to the pharmacy. The first thing I did was buy an alternate Vitamin D, one that looked completely different.  I also bought a pill counter, with a flip-top container for every day of the week. I bought one of those big ones that has four spaces for each day, color coded.  And I started putting all of her medication in there by time of day that she needed it.  That way, there was no worrying about dosage, or whether or not we had given.  Michael and I didn’t have to ask each other at 6 in the morning who gave the medicine  or leave each other notes saying we had given the medicine.  It was so easy it could be considered a no-brainer, but it helped me sleep at night and it only cost 30 dollars.  Later Michael and I wondered what took us so long to come up with that solution.

The truth is, even with our best efforts,  our good ideas don’t always work.  When Wendy was first sick I had decided that we needed a small fridge (our old college dorm fridge) for all of the medication and insulin, and to keep it in a different part of the house, because I didn’t want Wendy to get upset every time I opened the kitchen fridge and associate her insulin shots or medicine with food.  It lasted a few months before it seemed like overkill and it’s back to being a beer fridge.

Thomas Jefferson once wrote, “Eternal Vigilance is the price of liberty.”  I guess that’s true, the harder we work, in a smart way, the less likely Wendy will go back into the hospital.  And we work knowing that our vigilance keeps her as healthy as she can be.

However, it is certain that Wendy will be admitted many times, and when we are again discharged, it is again certain that something will have changed:  her medicine, her diet, her blood pressure, her routine, you name it.  The normal will have changed again, and again we will have to find our footing.

(Pictured above, the day I decided to consolidate all of the medical supplies and put them in one place.)

Resilience, A Beautiful Oops

Penny came home from school today SUPER EXCITED.

She said, “Mom, Just WAIT until you SEE this BOOK that I got at the LIBRARY!!!!!”

She showed me the book, Beautiful Oops! by Barney Saltzberg.

The gist of the story goes like this:  Even when something goes terribly wrong, with a little imagination, you can create something that will make you smile, and with the right point of view, it is beautiful.  Take a ripped piece of paper for example, it can turn into a crocodile.  Take a bent corner  and it can be turned into a penguin.

The idea is that even when life doesn’t go your way, you make it work.

And I thought, “Oh My God, she understands resilience.”  Or, at the very least, she knows that we value it as a family.

I wear very little jewelry.  But I happen to wear two bracelets, which I never take off. I even sleep with them.  They are both on my right wrist and from from Mantra Bands.  One says, “Persevere” and the other says “Choose Joy”.  I wear them because I have to be reminded every day, and some days are harder than others.  I’ve sometimes thought of getting a tattoo, but I don’t want to think about what it will look like when I’m ninety.

To me, the combined message on my bracelets the definition of resilience, persevering and choosing joy, and this is what I try to teach my kids.

I’m not going to be some glib, everything is going to be all right, happiness peddling soothsayer. It glosses over the real hardships of life.  The truth is that being a parent is hard, being the parent of a chronically ill kid is (arguably) harder, and there are lots of things that you can’t control that will drive you crazy, make you cry, and wonder about the fairness of the world.

But in our family, you take the problems, you look at what you’ve got and you either make it work or you change it and if you have a choice, you choose happiness.

When Wendy was recovering and we were waiting for a kidney, we found ourselves in an apartment in Charlestown, Massachusetts, a full two states away from our home.  Though we had amazing, uplifting support from friends and family, not many people lived near by.   Most of our week was taken up with doctors’ appointments, visiting nurse appointments, and lab tests.  But this was also a time for Wendy to recover and grow stronger.  We had decided to not send her to the rehabilitation hospital at Spaulding, because to put it quite bluntly, it was depressing and we just couldn’t do it.  Day care was absolutely out of the question, but Wendy needed to see and be around other kids, healthy kids.  I couldn’t just keep her in the apartment watching TV.

What we ended up doing was buying family memberships to four museums:  The Museum of Fine Arts, the Children’s Museum, the Science Museum, and the Aquarium.  Every day that we had a doctor’s appointment, we also went to a museum.  I would pack all appropriate medication that she needed along with a lunch, and we would be gone for the day.

At first , Wendy was so weak that she was just in a stroller and she tired easily.  We would have patterns of things we would do at each museum.  At the MFA, we would go to the gift shop first and pick out three post cards of art work she liked.  Then we would go on a scavenger hunt and find the pictures.  When we found each one we would sit for a moment and look at it and talk about what we thought was important or create a story from what we saw.  As she got stronger we found statues and mimicked their postures. (See picture at head of blog post.)

 

At the Science Museum, we always went to see the science in the park exhibit, where you could see science in action from outdoor equipment like the swings or the teeter totter.  We would also go and see the chicks and the monkeys.

At the aquarium, we would go to see the penguins.  For Wendy’s birthday, because she had been in the hospital for so long and because she spent her birthday in the hospital, the Child Life team adopted a penguin for her, whom we named Poppy, and we would go and visit him, then walk up the corkscrew ramp, while looking at all of the sea life in the giant cylinder that was surrounded by the ramp. When we got to the top we would look for the turtles. Then we would take a ferry home from the Long Wharf.

At the Children’s Museum, we would play with the trucks or the water works.  When Wendy got stronger, she would climb the webbed construction in the center of the museum while I would sit at the bottom and watch her.

On the days that we didn’t have a doctor’s appointment, we would walk to different parks around the city.  As Wendy got stronger, she would attempt newer and more exciting structures at the playgrounds.  It was rehabilitation and education through play, and gave our days structure besides just going to the doctor, getting a blood draw, having the visiting nurse come.  We made it work.

Another issue was Halloween.  How do you go trick or treating with a diabetic kid?  For other parents the question might be, How do you take a kid with nut allergies trick or treating?  How do you keep your kid safe while still feeling like a normal kid?  Our solution at first was to go ahead of time to neighbors and give them items that Wendy could eat so that when she came trick or treating she could enjoy what they gave her. As she got older, we paid her for her candy, by the piece.  We would let her pick out 10 pieces and then pay her for the rest, which we would give away to charities, friends who didn’t trick or treat, or to the college students who studied where we worked. We had to make it worth Wendy’s while, so that she wouldn’t think it was unfair that she couldn’t eat all the candy she got.

 

Now there is the teal pumpkin project, which is an amazing solution.  Parents agree to have both candy and non-candy items, and then paint a pumpkin teal to tell parents of kids who can’t have traditional sweets that there is something their child can enjoy.  It’s a fantastic idea.

Every day we try our best to make Wendy feel as normal as possible enjoying as many of the things that non-chronically ill kids enjoy.  The target is always moving, both with Wendy’s health, her growing up, and new technologies that are on the horizon. The latest challenge has been sleepovers at other kids’ houses. But we do the best we can, with what we’ve got.  We teach our kids to do the same thing, find solutions that work.  Solve the right problem.  Be flexible.

Make it work.

Sometimes with the right point of view, the result is beautiful.

 

When People Say Stupid Things

We lived in a small Vermont town.  It reminded me of a cross between the towns in the Gilmore Girls’ Stars Hollow and the town in Lady and the Tramp.  It was so small, it didn’t have a traffic light.  It did, however,  have a train station, and the Amtrak stopped there twice a day as well as multiple freight trains going back and forth from Canada.  We had a few restaurants, a few shops, and a pharmacy or two. We had a movie theater, that played one movie, once a day, and the proprietor sold you the tickets from one window and turned 90 degrees to then sell you concessions out of another.  There was a coffee shop that also served as a community center, a place to get the latest news, get a warm cup of coffee and a pastry while discussing everything from Cold War politics to sugaring season.  I was convinced that if a stranger came into the middle of town and asked five people if they knew me and knew where I lived, that they would be able to find me.    It was just a typical small town, full of characters and stories, and lovely to be a part of.

We lived in the area known as Hospital Hill, because it was situated around the hospital, on the hill. We lived on Church Street, which also had the Catholic Church. Our house was one of a few dozen Victorian houses that had been built in the turn of the last century, and had all of the original woodwork and tin ceilings. The houses on Hospital Hill shook slightly when the train went by.  All of our houses had crooked pictures on the walls as a result and it was a mark of endearment to go and slightly adjust your neighbors’ pictures while you visiting, because they failed to notice that they were crooked anymore.  All the kids from the neighboring areas trick-or-treated in our neighborhood because we were the only bona fide neighborhood in a very rural area.  In the spring, local farmers would practice walking their oxen up and down our street so they could get used to side walks and man hole covers before marching in the Fourth of July Parade.

Our neighborhood was teeming with children, as almost all of the houses had recently turned over with young families who were willing to take on the sprawling houses with many repairs and large heating bills.   There were over thirty children under the age of ten, and they were barefoot Bohemians in the summer time, going in and out of each others’ houses, climbing each others’ trees, drinking from each others’ garden hoses.  Really.  It sounds like the 1950s, but this was the place where we lived, where people knew you and loved you and your lives were interwoven in a sweet and meaningful way.

One day, a few months after Wendy had originally gotten sick and before her kidney transplant, a neighbor whom I adore, saw me working in the yard and came over. I was pulling out weeds in the front garden bed, trying to give the day lilies some room to grow.  She came over to hug me, and see how I was doing.  We had been given a series of casseroles and meatloaves, and we were starting to recover from the trauma that we all had suffered earlier that summer, licking our wounds as it were.

She said something that shocked me.  She said, “I’m just having such a hard time getting over how much you have lost.”

I’m sorry, what?

She thought of all of our time and money that we had to spend, and would continue to spend, keeping Wendy healthy, with fewer options for vacations, sleepovers, or summer camps. That we would have to give medications every few hours, wake up at 2 am every morning, check blood sugar, etc.  Perhaps she thought about the medical hurdles in the future…..what she thought of were our limitations.

But, I didn’t think of our trials that way at all. I felt incredibly lucky.   My daughter was still alive, we had a great team of doctors and nurses, our family and community had rallied around us, and we had made it home. Wendy was happy and was starting to resume the things she did before the initial onset of her illness:  bike riding,  swimming, or playing with her friends.  Honestly, I thought of it as a victory, not a defeat.

People say stupid things.

Another example:

Same town, a year earlier.  I had suffered a miscarriage, early enough in the pregnancy that I wasn’t showing and I had only told a few key friends and loved ones.  When I miscarried, those key friends and loved ones sent flowers that were accompanied by both condolence and get well soon cards.  We only had one florist in town, who was located right on Main Street.  The proprietor also sold ice cream from a side window in the summertime and took your photos if you needed them for a passport.

On the same day, the floral delivery person made three deliveries to our house.  On the third one, she asked what had happened.  I told her that I had miscarried.  And after she said she was sorry, she then said, “Well…Better Luck Next Time.”

People say stupid things.

Sadly, it happens all the time, no matter the person, the location, or the situation.  I don’t want to single out my tiny Vermont town, because it happened everywhere (and continues to happen.)

Many times, when it comes to Wendy’s illness, I get the “Oh, that’s terrible” or “I’m sorry.”  These are perfectly acceptable things to say.  It is terrible.  But just as often I get the  people who say something like, “How do you deal with this?”  or “I could never do what you do every day” or “I would need therapy if I were you.”

How do I deal with people who say these things?  The first thing I do is instantly forgive them.  Really.    They didn’t mean to convey that my reality is incomprehensible to them and that I live a horror movie version of life.  I know that this is the first thing that came to their minds and flew out of their mouths.  Their intention was good, but their delivery was bad.

Then I figure out how to respond.  It has taken me a long time to find the right words.

The answer to those statements is, “Of course you can. We do what we can with what we’ve got.”  or “There is no other alternative, so we do what we have to do.”  Sometimes I say, “We never know what we signed up for as parents, but we signed up for all of it.”

People say stupid things.

My one pet peeve, though, the thing that drives me crazy, is when people try to make sense of the illness and tell me that this has all happened for a reason.

Then, after forgiving them and taking a breath, I tell them that I don’t agree with them.

I don’t believe that my daughter suffering happened for a reason, I say.  I don’t believe that there is a plan in place that includes children in pain.  I also don’t believe that either she or I have done anything wrong and are being punished for it.  Bad things just happen sometimes.

However, I say, I do believe that you can make the best out of every situation, and that you can create good from the bad, in a picking-up-the-pieces kind of way.

I don’t believe that there is a happily ever after scenario for a lot of chronically ill kids and their parents, but I do believe that you can still live a good and happy life with what you have, and if you don’t like something that you can change, then you need to change it.

People don’t always know what to do with this answer.  And that’s ok, it took me many years to formulate it, it will take them some time too.

You might wonder what the right thing to say is.  Saying your sorry, while slightly off the mark, is fine.  You didn’t do anything, so there’s nothing to be sorry about.  Rather than saying “I don’t know how you do it”, say rather, “I admire your strength and determination,”  Or “I know that you have a lot of obstacles, but I can see you are working hard to overcome them.”  You can also say, “Your child is lucky to have a parent like you.”  These are all things that empower the parent.

I love when I call a friend to say that Wendy is going into the hospital and she says, “I’m here for you and whatever you need.”  And I know she means it. It’s important to feel supported.

It only takes a little thought and consideration to transform a statement from degrading to uplifting and I don’t think it’s wrong as a parent of a chronically ill kid to redirect a misguided statement.  I don’t do it all the time, honestly I am sometimes still caught off guard when it happens.  It’s amazing what people say without thinking.

People say stupid things, but they don’t have to.  They shouldn’t.

We can all do better.