Pattern of Acceptance

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.

 

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Brave Fragile Warriors

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.