Tag: Gratitude

CAREgiving, defined

Posted in Advocate, Coordinate, Education, Family, Resource Management, UncategorizedTagged , , , , , , , , Leave a comment

We will all be CAREgivers at some point in our lives, whether it be to a parent, a spouse, or a child.  When you are a parent of a chronically ill child, it is likely that your CAREgiving duties will overlap, because your child needs constant care, but other people in your life get sick as well.  It can feel overwhelming and isolating all at the same time.

I’ve been thinking a lot about what being a caregiver means, and I’ve come up with a helpful acronym.  A CAREgiver Coordiantes, Advocates, Manages Resources and Educates:

Coordinate.  You coordinate your child’s care.  You arrange for doctors’ appointments, other therapists appointments, prescriptions, food and drink limitations or special considerations. You calibrate any medical devices that your child needs.  You coordinate the care that is necessary daily, weekly, monthly yearly:  finding the people and the products that will best serve your child.

Advocate.  You make sure your child has what they need to be successful in all areas of their life.  You talk to your school administrators, you request an IEP (Individual Education Plan), or a 504 (Individual Medical Plan).  If your child needs certain accommodations, you arrange for them, whether it is a nut-free table at the school lunchroom, or an extra ramp to enter a room more smoothly. Advocating also means making sure the janitor doesn’t wipe the peanut tables and the peanut-free tables with the same sponge.  In my case, advocating means asking the school nurse to write a letter home at the beginning of the school year to remind parents to keep their kids home if they are sick, because they can put my daughter in the hospital. It can also mean speaking out for other children who have the same medical condition, or one similar.  Additionally, it might mean joining a Family Advisory Council or advocacy group in your child’s specific illness, to make the world a better place in the future for your kid and those like your kid.  It’s a large umbrella.

Resource management.  I don’t need to tell you this.  Medical supplies are expensive, even if they’re covered by insurance.  My daughter wears two medical devices, neither of which are fully covered by insurance.  Also not covered are the tegaderm films that go underneath each device.  Occasionally the devices cause a skin infection, so we have to make sure the certain antibiotic topical ointment that works is always at home and always available.  Her anti-rejection meds are covered by insurance but her supplements (that the anti-rejection meds strip from the body) are not.  Quarterly visits with specialists are necessary, along with their co-pays and the occasional trip to the Emergency Room rounds out the payment.  What isn’t said are the things that aren’t bought or are pushed off because of the payments that fulfill medical need.  I’ve had the same snow boots for twenty years and I live in New England, so they get used.  Most of my clothes come from thrift shops.  Michael wears his shoes until literally there are holes in the bottom.  This is how you make money stretch.  And I consider us to be very lucky, we live a good life, with good food and a warm home.

Educate.  Parents of chronically ill kids are constantly educating. We are educating the other adults in our child’s life:  for birthday parties and sleepovers and soccer games. When the time is right, parents educate their children about their illness and (hopefully) help them slowly transition to self-care.  We often educate the public, bringing awareness to our child’s condition, or the condition of those like him or her.  We also educate ourselves, we are mini-experts on our child’s diagnosis and condition, we keep up on the newest technologies and research studies.

This is what we do both as parents and as caregivers, but it’s amplified when you are both parenting your child, and also are a CAREgiver to them.  Now, add onto the fact that other people get sick too, in the short and the long run. What happens when your spouse or your parent, or God forbid, another child gets an extended illness.  Now all of your specialized training gets stretched or even thrown out the window.  You may know all there is to know about your child’s disease, but you’re not a medical professional, you don’t know all the illnesses.  You need to learn a new language, a new set of doctors, a new protocol of medicine.

It’s a terrible burden, and it’s constantly shifting.  It reminds me of the picture of the world, that is being held up by elephants on the back of a turtle.  It’s heavy, unpredictable and unrelenting.

I hate to be gloomy about this because there are beautiful moments to being present in the difficult moments of your loved ones, but it takes practice to see the beautiful moments, the sunrises and the warm cups of coffee, the smiles and the small favors.  None of us knew what we were signing up for when we decided to become parents, there was no instruction manual or warning label.

I take the month of November as a month of gratitude, and write down one thing a day that I’m grateful for.  Some things are quite large and some are tiny. but it’s an actual daily vigilance, because let’s face it, some days really suck.  But even in the worst days there is something to be thankful for if you look hard enough.

Good luck, CAREgiver.  Try to find something beautiful in each day, something you’re grateful for.

 

 

Understanding, But Not Sharing, Despair

Posted in communication, Compassion, coping, Family, Resilience, transplant, UncategorizedTagged , , , , , , , , , , , 1 Comment

I want to get this blog post just right, and yet I’m afraid that I will fail miserably.

But I’m going to try.

I read today about the Short family, a family from Pennsylvania who died of an apparent murder-suicide.  They had a chronically ill kid, a child who had received a heart transplant.  They had been featured in their local newspaper when their daughter Willow received the heart. The story was hopeful, it was upbeat.  There was a future thanks to a generous donor.  People like to think of it as a happy ending, but in reality organ donation is only a beginning.

A year later, the same family was featured in a New York Times article, detailing how hard it is to get the anti-rejection drugs compounded and filled, where it shows a picture of the mom dosing up the medicines, which by the way are the exact same medicines my daughter takes.  We have shared the same terror of worrying that you are going to run out of the medication that is keeping your daughter alive because of some stupid rule made by either the pharmacy or your insurance company.

In fact, up to this point, I know exactly how they feel.  Scared, hopeful, struggling.  There’s not a lot of place in this world for a sick kid.  I’ve said that for so many years now I feel like a broken record.  Not a lot of place, so parents of these kids keep fighting.  Fighting for prescriptions, fighting for 504s or IEPs in school.  Fighting for doctors’ appointments, fighting to be heard by doctors and nurses, by other hospital staff, by pharmacies and insurance companies.  Giving the thumbnail version of your child’s illness to every new person on the phone, every health care worker you meet, every time.

It’s exhausting.

And yet, none of us know what we sign up for as parents, and we have to move forward.  We are not just caregivers, but nurses, social workers, dieticians, pharmacists, and medical managers.  No one is going to do it for us, and no user manuals are included.

There are other kids in the family, kids who might not get as much attention as they deserve because the parents have to deal with the sick kid, the emergency, the crisis.  They are unwitting victims of the tragedy.  That adds pressure, too, the fact that you know you’re not able to be the kind of parent you want to be to all of your kids because there simply aren’t enough hours in the day.

There are stresses with work, normal stresses, but nothing more stressful than the idea of losing your job, because you need those health insurance benefits more than anything else.  So you make fewer waves even if something might be wrong because you can’t afford to be unemployed.  There are sacrifices you make, as little as sleep or as large as a professional life, in service to the illness and the medical needs of the chronically ill child.

All of these problems contribute to difficulty in a marriage.  You promise to love, honor and cherish when things are at their brightest and the future has all sunshine and rainbows, but stress, bills, worry, and problems are unrelenting.  You are constantly afraid that the delicate balance you’ve constructed will get tipped again with an emergency. You are waiting for the other shoe to drop.

Damn, it’s really hard.

The mom in this tragedy blogged about her struggles with PTSD, from dealing with her daughter’s medical issues.  She talked about her survivor’s guilt, knowing that another child died while her child lived.  I can personally attest to that guilt, and have blogged about it before in my piece, Dear Mom of My Daughter’s Kidney Donor.  It is a unique and exquisite combination of gratitude and guilt that parents of kids who have received organs from deceased donors share.

Now there are five dead bodies, six if you include the dog, in a murder-suicide. A family that seemed very public about their struggles, struggles that I share as the parent of a chronically ill kid.  And I feel so many emotions connected to it.  Anger at the futility of it, and anger for the donor family too.  Sadness, a bottomless sadness for the family.  Horrible unrelenting understanding at the dark side of the situation.   Gratitude for the love and support from my family and friends, because through all of the many years now I have never, ever felt alone.

Because the truth is, that while there’s not a lot place in this world for sick kids, there’s not much place in this world for their parents either.  It’s only through the personal connections you have and make that carry you through the hard times.  It’s knowing you’re never alone, that there’s always someone there to listen, laugh with, or help you problem solve.  It’s combating the feeling of isolation with the knowledge that there’s always someone there for you, and you are there in return for them.

Hug the ones you love today and thank them.

My deepest sympathies and condolences to those who knew and loved the Short family.

The National Suicide Prevention 24 Hour Hotline: 1-800-273-8255

 

Pattern of Acceptance

Posted in communication, Compassion, coping, Education, Family, Resilience, UncategorizedTagged , , , , , , , , , , , , , , , , , , 1 Comment

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.

 

Brave Fragile Warriors

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Happy New Year!

This past Christmas, I was given an opportunity to wrap lots of presents for sick kids in the hospital.  We as a family have spent our fair share of days as residents of Massachusetts General Hospital.  In fact, we have spent every major holiday there at one point or another.  We are what might be called “frequent flyers.”

But that’s not why I was in the hospital on December 23rd.  I was there to wrap Christmas presents for other kids and their families.

Here’s the deal. Christmas in the hospital totally sucks and everyone knows it.  Doctors and nurses do everything they can to get kids home because no one wants to be in the hospital for Christmas.  But sometimes, kids can’t go home.  So there are wonderful, generous, kind-hearted people who do the best they can to make Christmas as nice as it can be for these sick kids (and their parents) who just don’t want to be there.    There are sports players and pop singers who come for visits. Santa comes by.  There are special events to make Christmas Cards or crafts.  There are special cookies on the food trays.  There might be someone who comes by to sing Christmas Carols.  All of this helps, but it’s not the same as being home and we all know it.

The Child Life Services at MGH along with their charity organization, “Angels Above” had managed to buy or procure dozens, perhaps hundreds of presents and spent about a week setting them up in a storage room so that parents could “shop” for their children. Each parent could choose five presents for their child.  Sometimes, if they had more than one child (only one of whom was sick), they would divide the presents up:  three for the sick child, two for the well child.  They would be given a shopping bag and the opportunity to find something special for their kids because time and money are tight when you’ve got a sick kid.

They were so grateful, they couldn’t say thank you enough.  Thank you for the presents. For the thoughtfulness. For the wrapping.  It was the kind of overwhelming and exhausting gratefulness of people who were simply worn so thin that all they could do was express their gratitude.  They had spent all of their emotion and energy showing up, talking to doctors, putting on a brave face, and trying to make sense of it all.  You could see the weariness in their eyes, in their smiles.

Bags of toys in hand, they would then come to me.  I was  in the family room, in the corner, with big windows that overlooked the State House with its golden dome. The weather outside was gray but it hadn’t snowed yet.  I had a special wrapping station with paper of any color and bows, and cards, and ribbons.  I would wrap their packages. They would sometimes help, but most of the time they would just sit.  And then, ever so slowly, they would talk.

What exactly do you say to a parent in this situation I wondered, and so I started with the question, “Tell me about your child.”  And they would.  Who they were, how old, where they lived.  Then, what they were in for, how long they had been there.  How much their child inspired them.  How grateful they were to the doctors.  How scared they were all the time.  All while I was wrapping presents.  All with other parents in the room.  The overwhelming theme was that their kids were their heroes.

There were people from all walks of life, from all ethnicities.  There was a Chinese woman who so wanted to be understood, that she spoke slowly  and in clipped phrases.  Her son was in pain.  He was scared. She was scared.  They had been there two weeks.  She had no family in America.  Tears spilled down her cheeks as she trembled trying to get the words out.

There was a grandparent couple there with their granddaughter who was their whole world, who travelled back and forth from New York State for treatments.  Another little boy with the same diagnosis and his parents from Maine, when the parents and the grandparents found out, they compared notes on symptoms and side effects, on doctors and treatments.

There was a South American Woman who was afraid she was going to lose her job because she was in the hospital so often with her child, who had weak lungs.  She lived locally, so she tried to do the work at night as best she could.

When the Child Life staff came by to ask if I needed anything, the only thing I could think of was tissues, because sometimes these parents got a little teary, a little emotional.  Can anyone blame them?

Now here is the thing.  I was only there for two hours. All of this happened in two short hours.  As one of the parents was leaving, she looked at me and thanked me, not just for the presents, and the wrapping, but she thanked me specifically for the conversation. She said, it was so nice to talk to someone new.

And I remembered feeling exactly the same way when Wendy was in the hospital.

That day was the genesis for this blog.  Sure, in the past I have thought about writing my experiences, in fact people have told me I should write a memoir.  For now, that’s not my focus.  I think it’s important to talk about our brave, but fragile, warriors.  And talk about how difficult it is to parent them at times, because we want them to be normal kids but they have extraordinary circumstances.

The truth is that a lot of the things we want to talk about make other parents uncomfortable, even our friends.  It’s like they don’t know where to look when I talk about Wendy’s next kidney transplant, or the horror of having no  health insurance, or the many hours and days I spend in the hospital. It’s not that they don’t love us, it’s just that it’s very difficult for them to relate without triggering their own deepest, darkest fears of having a sick child.

Our sick kids are not only the brave fragile warriors.  We as their parents are too and we deserve a place to talk about it, to comfort each other, to celebrate the victories and band together in the defeats.

And so, a blog is born.