BFW, Year One.

It’s been quite a year.

I started this blog one year ago, with the intention of writing one blog post a week. My goal was to make a space for parents of kids who have chronic illness.  I think that I’ve reached a number of those people, and I hope I have been helpful.  Being the parent of a child with special health care needs can feel very isolating and scary, and you aren’t sure how much to share with loved ones and friends.  I hope that this blog has alleviated some of those fears.

I think BFW has had more impact than I anticipated on parents of kids who are not chronically ill, and I think that it has brought awareness on what it’s like to be a parent of a kid with special health care needs.  I’ve heard from many people that parenting is universal and looking at parenting through a different lens has made them want to be better parents themselves.  I’m so grateful to hear these stories, and it has normalized my own experiences as a parent.  I no longer feel like “that parent” who needs to over-analyze and over-schedule and over-plan.  Ok, I still do feel like that parent sometimes, but I also think that we all feel that way sometimes.  That’s the new understanding.

The one thing I didn’t expect was all of the amazing people and organizations I would come in contact with as a result of the blog.  Part of this contact was because I knew that I needed to write a blog post a week, and let me tell you, that’s not so easy, so I knew I would need some new material.  But the other part of it was that I needed to be open to the opportunities.  I needed to try new things.  I needed to make myself available to these experiences.  And these people, these organizations, are doing amazing things.  There is an unseen web of individuals and groups who help families like mine, and this blog has opened me up to many of them.  For that I am incredibly grateful.

Since starting BFW, I find myself always looking to see what lesson I am  supposed to be learning from my experiences.  What can I bring back to the blog?  Not just my experience or my personal feeling about something, but why is it important to sick kids and their parents?  I like to think of this blog as a resource, not just a sounding off point.

I have grown personally as a result of this blog.  There has been a lot of study recently that writing about your life helps you to process through it better, and I can honestly say that in my case it is true.  Writing about the hardest points in my life has allowed me to no longer let them hold me prisoner.  I have also never really considered myself a good writer, in fact I consider it a weak point, but this blog has forced me to write whether I like my writing or not, and most writing teachers will tell you that you only get better at writing if you write more.

Finally, I think that this blog has helped me with my communication with Wendy, who is my chronically ill kid and who is about to turn thirteen.  Thirteen!  The blog has allowed me to  try out how I’m going to talk to her before  I actually have to about tough topics.  She doesn’t read my blog, but sometimes I read it aloud to her, and to her little sister Penny, for their critique.

Thank you if you’ve read this blog once, or fifty-three times.  Here are the annual numbers for 2016:

10,700 Views

7,552 Visitors

50 Countries

I anticipate keeping the same format as last year, and maybe writing a book in 2017.  I wish you wellness for 2017, in all its forms.

Love, Darcy

 

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Here’s to the Friends Who Remember What I was like Before I was a Parent of a sick kid.

Two nights ago, Wendy had a fever.  We had just opened a bottle of wine and I had made a nice dinner.  We had weekend guests.  The fever, the phone calls, the worry, the not-drinking of the wine, the not-enjoying of the dinner.  The  continuing worry overnight,  sleeplessness, wondering if we had made the right decision to wait until the morning to get labs.  Then the next morning, where I didn’t make breakfast for our guests but offered cereal or yogurt. Then there were more phone calls, more appointments, prescriptions to fill, follow-ups to be made.

Thank God it was nothing major, and did not require a hospitalization.  But the day was basically shot, Wendy was shot, I was shot.

We weren’t much fun.

Don’t get me wrong, we all know that parenting has a lot of moments that aren’t much fun.  There’s a responsibility to keep the kids fed, clothed, and safe.  There is a lot of slogging:  carpools and dirty dishes and laundry.  But being the parent of a chronically ill kid has all of that PLUS the additional medical stuff.  Daily medications.  Drinking requirements.  Blood sugar checks and insulin pump changes.  Doctors’ appointments and conversations with the school nurse.  Refills of prescriptions, paying out-of-pockets for items not covered, but still needed for life.

That’s not including the days where normal life goes off the rails, and you have a sick kid who is heading to the hospital for tests.

It’s a lot to keep track of, it’s not that much fun, and it’s made me look and feel older than I actually am.  I’m told stress will do that.

So it is nice when I’m reminded of a time when I was actually a good time to be around, when I had few responsibilities and a healthy sense of adventure.  There is no better way to remember that than when I’m with friends who knew me BEFORE I had kids.  Now, Michael and I had kids on the early side, Wendy was born when I was 28, so I’m talking about people who knew me in my early twenties.

I recently was reminded of a story by my friend Sarah,

“Remember when we hung 300 condoms outside the College Union Building to protest the condom policy [during the height of the AIDS crisis]?”

Oh my God.  I really had done that.  Me, the woman who carries around a mobile medical lab in my purse.  I had hung all those condoms in protest. We got called into the Dean’s office over that.  Later that same Dean offered me a job.

Or my friend Hutch, who reminded me of the time I convinced him that he and I wouldn’t need money to go to the bar one night in my senior year, because we were cute enough to have people buy us drinks.  It turned out, I was right.

Again, me?  The woman who stops at one drink most times or a wild night of two drinks so she can accurately tabulate blood sugars?  That was me?  I did that?

Thank you, friends, who remind me of what I was like before I had a sick kid, who show me what my inner core is, who I really am, or was.

Here’s the thing.  I probably won’t do those things again.  It’s just nice to be reminded that I did do them.  And the common thread between the stories from my friends is that I was more spontaneous and less afraid.  The fear is hard to minimize:  parenthood makes cowards of us all.

But I am going to try to be more spontaneous in the future.  That’s something I can give myself back in the New Year.  I think that I would really like that to be a New Year’s Resolution:  Say yes more, be more spontaneous, worry less, plan less.

At the very least, my kids will have really great stories about me, and that alone would be worth it.
 

 

Life happens, adulting is hard, coffee helps.

I was hurrying from my classes the other night, on the way to the launch of Wendy’s cartoon at the Boston Society of Architects.  There were roughly seventy people there, all there to support the endeavor that took over two years to create, from start to finish.  There were some of Wendy’s doctors, some college friends, some neighbors.  There were the architects who worked on the cartoon, some administrative types from Massachusetts General Hospital, and other parents from the Family Advisory Council.  Wendy brought a half dozen of her closest friends, and wore her Christmas Tree hat to celebrate both the cartoon and the season.

If you told me ten years ago that this is what my life would look like, I would tell you that you were patently insane.

Ten years ago I was living in a small Vermont community, with a perfectly healthy, almost-three-year-old daughter.  I had been to Boston for two weekends in my life.  I had never heard of Massachusetts General Hospital, knew exactly one architect, had never met someone who had received an organ donation, and had only heard of e-coli from the Jack in the Box outbreak from 1993.

One year later, my almost-four-year-old was fighting for her life, on more pumps than would fit on the pole, with no clear answer what was causing this massive infection that had weakened her heart as well as all of the damage done to her other organs.  She spent every holiday in the hospital that year and we lived on and off in Boston for a year and a half in hotels, apartments and hospital rooms.

It just goes to show you that you never know what life is going to throw at you.

Now, we live in a different town, we have different jobs, we have additional friends.  I’m on the Family Advisory Council at MGH, we open our homes to strangers through Hospitality Homes, and I’ve met amazing advocates for patients and families in the world of health care.

It has been a very long road, but here are some things that I’ve learned.

Don’t pray for deliverance.  Pray for strength.

Make decisions from facts and not fear.  When you know you are looking to fight another battle, figure out what you need, and then make it happen.  That’s the reason we moved, to be closer to the hospital.  We knew that big battles would come in the future, and we wanted to be as prepared as we could possibly be.

Ask for help when you need it.  There is an ethos in place that we shouldn’t ask for help, but the fact of the matter is that we all need help sometime, and you need to be able to clearly define what you need when you are going through a crisis.  People who love you want to help you, but they don’t know how.  Help them to help you by telling them exactly what you need.

Let yourself feel the feelings, and give them a name.  If you’re scared say so.  If you’re angry, say that too.  If you’re nervous, figure out why.  Once you name your feelings, they have less power over you because when you name them you are no longer ashamed to be feeling them, and shame makes all of those negative feelings double.   Be prepared that others will be surprised when you give a name to these feelings.

Even when you are going through hell, listen to others’ worries and fears.   Really listen. They have hard times too.  Even when you are going through your worst days listen to the stresses of your friends and give them the space to express them.  That is friendship.

Be grateful, even when it’s really hard.  Find things to be grateful for.  Be grateful for the small steps.  Be grateful for the people who support you.  Be grateful for the sunrise.  Tell people how much they mean to you.  Thank people for small actions.  It will help the everyday crap that you have to slog through, because we can escape a lot of things, but not bureaucracy and bullshit.

Be open to new experiences, even when they’re hard and you are worried or scared or nervous.  I actually have to say to myself, “I am open to this moment.  I am open to this experience.”

Give back.  When you’re ready.  When you can.  With what you have.

Know that hard times are going to come.  All of our roads are bumpy.  But while I don’t believe that everything happens for a reason, I do believe that we do the best we can with what we’ve been given, and then we’re grateful for that too.

Teach your kids that these things are important, and not just with actions, but with the words that go along with them.  It encourages you to be a better person and a parent when you actively remember that your kids are watching, they are listening.

Life happens, adulting is hard, coffee helps.

And finally, I’m not sure that being the parent of a chronically ill kid ever gets easier.  It is always scary.  There is always a feeling helplessness.  The difference is, now I know it can be done, whereas before I thought it might be impossible.

That is perhaps the greatest lesson.

Impatient, Empowered

Yesterday, Wendy received the Patient View Impact Award, the only national award given to patients who make a personal impact in medicine. Payette was given a special award too, for being a champion of the project.  (In reality, without them it wouldn’t have been possible. )  The awards were given by the Patients’ View Institute, a non-profit organization committed to organizing and amplifying the patient voice, so we can have more impact on the quality of care we receive.

The Patients’ View Institute collects patients’ stories, organizes them, and allows them to be viewed by others going through similar circumstances.  It also awards a few great stories once a year at the annual meeting of the Leapfrog Group.  The Leapfrog Group is a non-profit committed to transparency in medicine.  Hospitals send them their quality and safety reports, and Leapfrog gives them an A-F grade based upon their reporting. The best hospitals are brought to this annual meeting to receive their award.

So, Wendy was given an award in front of representatives of the best hospitals for quality and safety in the nation.  Think on that for a second.  If you could tell three hundred people who have the power to change the day-to-day  operations of a hospital, if you had their undivided attention, what would you say to them?

Here’s what struck me about the day.  Everyone in the room was trying to make healthcare better.  Everyone was worried about the cost, the consistency, and the safety of healthcare.  But most of the people were looking at it from the institutional side of it, the bean-counting side, if you will.

Wendy’s story was one of a few individual stories of patients who were empowered to make change in the medical world.  The most prominent story, however, was the keynote speaker, Epatient Dave, who talks about patient engagement and empowerment.  His TED talk is one of the most viewed talks in history.  I highly recommend it.   He empowers patients to know their health history, and to connect with each other.

Another parent was there winning an award, named Becky White, is also the parent of a medically complex child.  Not 0nly did she go back to school to get her nursing degree, but she went back again to get her MBA.  She stressed that as a parent of a medically complex child, that she needed to know how to speak three languages:  the language her child would understand, the language the medical world would understand, and the language that the business world would understand.  She invites hospital administration to round with her when she is taking care of children so that they understand what is necessary for caring for a medically complex child.

Another parent, Liz Minda, is an advocate for her child who has had over 11,000 seizures in her lifetime.  Liz advocates for medical marijuana, and has spoken to media and legislatures about its impact on her daughter’s health.

You can read about both of these women here in the PVI press release.

It took me some time to process the whole day.  There was so much information, so  much intention by everyone in the room to improve health care, that it was hard to keep it all straight.  I took copious notes.

What struck me about the other patients and parents, though, was that they were both empowered and impatient.  They were there because they were creating change.  Wendy and I were there because we wanted change too.  The kids in these stories are extreme cases, but they don’t have to be, they don’t have to be the kids who are frequent fliers in the hospitals.  I think, though, that the amount of time our children spend in the hospitals make us as parents want to make the entire medical experience better.

Some people write books about their experience; some write blogs.  Some people speak at TED talks.  Some people create cartoons.

What can the average person do?  That’s what I was thinking about last night. Does it have to be such a grand gesture?  Of course not.  Those things get noticed, surely, but lots of good can be done without a media blitz surrounding it.

I came to this idea of the Patient and Family Advisory Council.  It is a council at hospitals that really bridges the divide between patients (or families) and providers.  Let’s say a family has an experience at a hospital and they know a way that it can be improved.  For example, a family notices that there are no pediatric wheelchairs.  Where can they go to get them ordered?  The Family Advisory Council.  A family notices that the pain medication that was prescribed in the Emergency Department doesn’t transfer up in the orders when they reach the floor.  Who can they tell?  How do they create the change?  The Family Advisory Council can point them in the right direction.

When Wendy and I wrote the story for the Emergency Department Cartoon, I brought it to the Family Advisory Council to help me figure out what to do with it.  The co-Chair of the FAC, Sandy Clancy, helped me to create a committee of people who needed to see it to approve the content, including doctors, nurses, social workers, child-life specialists, psychologists, you name it.  There would have been no way for me to know whom to contact or how to do it.

Likewise, the Family Advisory Council is a resource for the hospital as well.  Different departments come to us for advice about any variety of things.  New blueprints for new departments are brought to the FAC to see if they have any suggestions.  FAC members review and edit information that is given to the public. Parents speak to residents on their first day in their new job about the importance of bedside rounding.  We even sponsor a Grand Rounds every year about family centered care.

I wrote a piece about family advisory councils for Courageous Parents Network a few months ago.  You can read it here.  (It lists me as Casey Daniels, though.  🙂

If you want to be a part of a Family Advisory Council, contact your hospital and see if they have one.  Usually there’s an application process.  If your hospital doesn’t have one, consider starting one.  The Institute for Patient and Family Centered Care has created a whole series on how to start an FAC in your area.  You can look at their information here.

In conclusion, though it’s not exactly important what I said at the conference with 300 quality and safety people in it, since I posed the question, I will tell you what I decided to say, concerning the cartoon.

I said, since we all arrived by airplane and every airplane in America has a safety introduction before they take off, everything from fastening your seatbelt to what to do in the event of a water landing, why don’t we have introductions to every Emergency Department in America, when people are sick and scared and hurt?

Though it may not change anything, hopefully it gave people something to think about on their flight home.