#KeepKidsCovered

Medical care for children is suffering because of politics and it is driving me crazy.

Kids, who through no fault of their own, are born with certain conditions or have contracted certain illnesses are not getting the care they need in the greatest and richest country in the world.

This should never happen.

As I’ve said many times before, I’m in a special club, a club that no one ever wants to  be in.  It’s a club for parents of kids who are chronically ill.  I’m tapped into advocacy groups, medical news sources, and the American Academy of Pediatrics, and I hear lots of stories.  Life for these families is always hard, juggling the needs of your child and the needs of your family, doctors appointments, medical bills, school accommodations like IEPs and 504s, prescription medicines and medical device procurement.  A lot of these kids qualify for special medicaid programs that help parents get the care they need for their child, but I can tell you, the process is long and infuriating.  I have my master’s degree, I do research for a living, and I can tell you that the powers that be make the forms and the process as difficult as possible to get benefits for your child.  I joke, though it’s not funny, that I have spent years of my life on the phone with ombudsmen, insurance companies, government offices, and pharmacies.

Parents have enough to worry about if their kid is sick.  They shouldn’t worry about if their health insurance is going to go away too.

Maybe you don’t know about your Medicaid programs, that’s ok.  The American Academy of Pediatrics has designed a program called #KeepKidsCovered.  You can click on it and see what your state is doing for Medicaid.

If you’re so inclined, you can also write to the secretary of Health and Human Services in support of the Affordable Care Act.  His name is Tom Price and you can write him something like this (or you can cut and paste this):

Dear Secretary Price,

We are one nation, and we take care of our children, especially the sick and vulnerable ones.  Please keep provisions in the Affordable Care Act to protect chronically and terminally ill children, including keeping them on their parents’ insurance until they are 26, eliminating the lifetime cap,  and not allowing insurance companies to drop their parents because the child has a life threatening illness.  Please also protect the chidren who need Medicaid, the program that keeps them healthy so they can become productive members of society.

You are responsible to keep this country healthy.  These provisions will help.

Thank you,

Your name

Your address

Here’s his address:

Secretary Tom Price,

U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

Somewhere along the line, we lost sight of the fact that our country is just one big community and we need to help each other.  Who wouldn’t spend a few extra pennies on their taxes to make sure that kids are medically taken care of.  I don’t know a single person who says, “No, it doesn’t matter, let that kid suffer.”  So WHY ARE WE HAVING THIS BATTTLE?

Please write to Tom Price, and your senators, and your congressman.  Please print ten out and have a party and invite your friends.  Please share this post wildly.  We are the people who make a difference so that kids stay healthy.

Even the poor ones.  Even the sick ones.   Even the weak ones.

 

 

 

 

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Love Is Patient

It’s likely that when you got married, you chose the 1st Corinthians verse, “Love is Patient, Love is Kind.”  Michael and I did too, though neither of us is especially religious.  But I like the verse and I like the message:

Love is patient, love is kind.
It does not envy, it does not boast,
it is not proud.
It is not rude, it is not self-seeking,
it is not easily angered,
it keeps no record of wrongs.
Love does not delight in evil
but rejoices with the truth.
It always protects, always trusts,
always hopes, always perseveres.
Love never fails.

On the day of your wedding, it’s not something you linger on, it’s just a part of the whole day, but when you are at other peoples’ weddings, sitting there enjoying the moment:  the flowers, the music, the smiles and the tears.  Then you hear the verse, you hold your loved one’s hand, and you remember your own wedding.

It’s the connection in the moment that I always find so lovely.

But while Wendy was very sick, it became a mantra for me.  It was my touchstone.  When I had to hold her down for her blood draws.  When I had to battle blood sugars and measure medications and get up multiple times throughout the night.  When I had to measure every milliliter that went into her body and every milliliter that went out.  When I had to check her blood pressure, call the doctor, make adjustments to her medications.

When I had to quit my job.

When I worried.  When I couldn’t sleep.

When I missed Michael because he was two states away working so we could survive.

I would say this verse.

And I realized at some point, after maybe saying it a thousand times in my head, that the day of my wedding was wonderful, but it wasn’t my life.  It was just a day, a wonderful day.  The life I had, with a great husband, a wonderful family, and a sick but special little girl, that was my life.  And I had a lot of love around me, in all those forms:  patience, kindness, grace, hopefulness, perseverance.  It wasn’t just a reminder to keep myself in check, to keep myself calm, but also a reminder of all the things I had in my life.

This Valentine’s Day, Michael got me a candy heart, some flowers, and a very nice card.  However, he also got up every hour with me overnight that night because Wendy’s sugars were off the charts.  We adjusted, we monitored, we adjusted again.  We worried that her pump wasn’t working well, so we went downstairs and got a syringe and gave insulin by that route.  Her sugars just hit an acceptable level just as the alarm clock went off at 6 am.

I found myself saying the verse again to myself, as a reminder, over my morning coffee.

Love is patient.  Love is Kind…. Love never fails.

 

 

Compassion is Sometimes Foreign

A while ago, I was at a dinner sponsored by The Schwartz Center for Compassionate Care.  It was a dinner for all of the Patient and Family Advisory Councils of Massachusetts General Hospital.  We have eight of them, and so the room was quite filled with not only patients and families, but with administrators at all levels.

Unknowingly, I was sat next to the moderator who stood at the beginning of dinner, and asked us all to think of a  moment of compassionate care.  Then a runner went around the room with a microphone where people could share their stories.  And all of the stories were good ones, small acts of kindness that at the time made the pain of the moment more bearable.  We all have had those moments.  The truth is, I have a hundred stories of compassionate care, but I had chosen one of my favorite stories, one that truly went above and beyond.  It was the first one I had thought of.

I had no intention of sharing it with the larger group.

But the  moderator, at some point in this discussion, asked the microphone runner to come up to her, and then she looked at me and said, “Darcy, I bet you have one that you can share with the group.”

Busted.

So I stood up, and here is the story I told:

“My daughter, Wendy, was born healthy, but had an infection that shut down the small blood vessels of her body.  She spent over 180 days in the hospital.  At the time we were living in a small Vermont town, but we had to move down to the Boston area to be closer to the hospital, especially once we knew that Wendy needed a kidney transplant.  So once we moved, Wendy’s nephrologist, after Wendy’s [outpatient] appointment was over, looked at me and asked me how Wendy was doing with all of this, how we as a family were doing with all of this.

“I answered that our apartment was fine, transportation to and from the apartment was good, but I was worried because Wendy had no friends.  She couldn’t go to preschool because she was so medically compromised, and she had been in and out of the hospital for so long that she really didn’t have any interaction with any kids at all.

“The doctor looked at me, was silent for a second, and said, ‘I have a daughter.  She’s only a few years older than Wendy.  Let’s have them meet.’

“And so, maybe once a week for a number of weeks, we would meet at the Playground by the Frog Pond in Boston Common, and Wendy would play with Ashley.”

You could hear gasps in the banquet room.  Maybe because this was so unusual, maybe because it was so special. It wasn’t medical, it was emotional.  I wanted Wendy to have a friend in this new place where we lived.  Wendy’s doctor, as a mother, understood exactly what I needed, what Wendy needed.  She needed to feel like a normal kid.

Would it surprise you to know that I was asked to retell that story many times over the next few months?

I’ve been thinking about this doctor a lot lately.  This doctor, who when she goes on vacation, often will come back with a present for Wendy. This doctor who brought a snow globe for Wendy to hold while she got wheeled into the operating room when she was getting her kidney transplant.  This doctor, who when Wendy got air lifted  to the hospital while in heart failure and I couldn’t go on the helicopter with her, this doctor called me on my cell phone and told me not to worry, she would be there to meet the helicopter while Michael and I drove down from Vermont.  This doctor, whom recently when Wendy had an MRI and they told us it would be a week until they let us know (if Wendy had a brain tumor or lesions) went down herself and badgered a radiologist to read it with her, and then called me to tell me it was clear.

This doctor.  This doctor is an immigrant.

She is an Indian woman, Dr. Sharma.  Her accent is incredibly thick and she talks a mile a minute.  Her grammar and syntax are sometimes laughable.  She uses idioms wrong, like instead of saying, “You are between a rock and a hard place,” She would say, “You are between two hard places” and your brain has to figure out what she meant while she plows on with her rapid speech.  This doctor, whom the first time I met on the other side of Wendy’s bed in the PICU spoke so quickly and with such a thick accent I despaired that we were doomed because I hadn’t understood a word she said.

And yet, today, I can’t imagine our lives without her.

Shock waves went out among the medical community this past week with the new travel ban and executive order to build a wall along our southern border.  The truth is, the United States Medical system relies on immigrants.  Hospitals have had to scramble to figure out exactly what they are going to do, because the new President has made it very clear that his “America First” makes all immigrants suspect.  And yet, more than 25% of all physicians in the United States are foreign born.

So is America First just a slogan?  Does it mean America First with fewer immigrants, or does it mean America First with the best medical system in the world?

It seems to me, in a country that was founded on immigration, you need the best minds working on the hardest problems in medicine, in science, in public health.

No matter their country of birth.