Support For the Holidays

There has been a news story going around, about a group of NICU babies that got Halloween Costumes.  It really will melt your heart, have a look:

http://www.abc10.com/life/these-tiny-babies-in-tiny-costumes-in-nicu-will-melt-your-heart/344400254

It’s been rolling around in my head this weekend though, why do people go to the trouble to dress up babies who will have no memory of such an action? What motivates them to take their precious time and energy to do such a thing?  Because, really, it’s not helping the babies at all.

The answer is that it helps keep the morale up of the parents.  Imagine being a parent in that situation, waiting for your premie to gain enough weight to go home, it’s like watching paint dry.  But the world goes on without you while you’re waiting and it’s easy to feel down around the holidays because not only is your kid in the hospital, but your kid is in the hospital on a holiday.  So are you, the parent.

One year, 2007-2008, we were in the hospital for every major holiday:  Fourth of July, Halloween, Thanksgiving, Christmas, New Years, Wendy’s birthday, and Valentines Day.

I’ve got to tell you, it’s really hard to be in the hospital during all of those holidays.  I did not cry much while we were in the hospital, but I remember crying on both Thanksgiving and Christmas Day that year, because the hospital was the last place I wanted to be.  I’m not the kind of person that thinks, “It’s not fair,” but that year, that’s EXACTLY what I was thinking, sitting next to my daughter’s hospital bed while even the staff was going home for holiday celebrations.

Mostly, it’s hard because you’re helpless.  For the big holidays like Christmas, it’s hard because it means that your kid is really sick. They try to clear everyone out for Christmas.  And it is hard because you remember how nice those holidays were in past years.  The truth is that if your kid is really sick, they don’t really notice the difference, because one sick day runs into the other.  It’s the parents who keep track of the days.

For Fourth of July we saw the fireworks.

For Halloween, we had to drape Wendy’s costume over her because she had just had an abdominal surgery.  She was going to be Fiona from Shrek.

For Thanksgiving, We ate Thanksgiving in the playroom on real china that the Child Life Specialists set for us.  Wendy was unconscious.

For Christmas, Wendy got presents and a visit from Santa.  There were some special toys like build-a- bears.    We had Christmas lights in the room that we took down every day and put up every night so we didn’t get in trouble.  The nurses knew but didn’t tell anyone.

For New Years, we saw the fireworks.

For Wendy’s birthday we had a cake, no candles, because of the fire hazard.

For Valentine’s Day, there was pizza and valentines in the Family Lounge.

I know people who feel down around the holidays, because loved ones are now gone or because their kids are grown and out of the house.  I would encourage you to contact your local hospital, especially pediatrics, and see if you can volunteer over the holidays.  You have no idea what the smallest gesture can do to make a family feel better, one who has been in the hospital for a while.  I would also encourage you to find a way to go in and volunteer in person, and see the grit and determination of these kids who are fighting so hard to get well and who are resilient and kind.  You might get  a lot out of the experience as well.

Today is Halloween.  You have the time you need to contact your local hospital in time for the holidays.  Yes, we all get busy during the next eight weeks, but imagine all that busyness and having a kid in the hospital. It makes our problems look easier, doesn’t it?

If you do volunteer,  let me know about it. I love to read these stories.

Cover Photo:  Wendy, almost age 4, on New Years Day.

 

 

 

Here’s What I Will Tell My Girls After the Election.

I’ve been struggling this election season.  I’ve been having a hard time trying to find the good in all of this.  I’ve worried about what my girls hear in the news.  I worry about the assault discussions, the accusations, the lying, the accusations of lying.  I’ve worried about them seeing two people, people who have been nominated by their political parties to be the next leader of the free world, bicker and shout at each other, sling mud at each other, threats to investigate and incarcerate, calling their supporters deplorable.

These things are the exact opposite of what I teach my daughters the way that they should live in the world and the way that they should interact with others.  We do not shout at each other, we give each other time to talk.  We do not accuse each other falsely.  We do not, under any circumstances, lie.  And we are proud of our bodies and our place in the world; no one can take that from us with words that demean us.

So, this election has been a long row to hoe, trying to help them to navigate through the rhetoric.  Michael and I have taken issues individually as they have come up.  No, it is not right to start violence in a rally.  No, it is not right to set fire to the other party’s headquarters.  No, it is not right to sell guns with pictures of the opposition on the targets.  No, it is not right to grab a woman by her vagina and brag about it.

No, it’s not right, has been my go-to response this election season.

And I feel like that needs to be turned around, my response is not enough.  It is reactive and at the end of this extra-long, extra-dirty election cycle, I decided that I need to come up with a proactive list of statements for my daughters.  After some reflection, this is what I came up with.  This is what I will tell them after the elections are over.

Number One:  You are beautiful and talented.  Someday, a person will see your inner light and will love you for it.  They will want to be with you because of whom you are and what you stand for.  They will love all the parts of your body and they will tell you that.  But you need to love your body too, because it is strong and resilient and has carried you through many hardships.  Your scars are your battles that you have won.

Number Two:  Do not ever, EVER let a person demean or belittle you to think that you are not the amazing person that you are.  Speak to the meanness, say you will not tolerate those words.  You actually have to say that.  You have to say, “I will not tolerate what you have said to me.”  And they will either change, or you need to leave.  Sometimes the leaving hurts, but you do not need that person if they are going to diminish your inner light.  Sometimes walking away from toxic people is the most rewarding thing you will do in your life.

Number Three:  Words matter, names matter, accusations matter.  You cannot say one thing and mean another.   You cannot tell half truths.  One of the only things we have in this life for sure is our integrity, and you cannot lose it.  People need to rely on the fact that you are good on your word, that you tell the truth, even when it’s not popular.  Life is about choices, but in our hearts most of the time we know the right choice to make.  Stand on the right side of decisions, on the right side of history.

Number Four:  We are put on this earth not just to survive, but to make it better.  We each need to find the unique thing that we can do, either big or small, to improve the world.  The country has lost sight of the fact that we are one big community, and we need to take care of each other.  Find the thing that moves your soul and makes the world a better place and you will have found your calling.

Number Five:  There will always be people with whom you don’t agree.  Be sure you listen to their whole argument before you respond.  Listening is a gift you give to others, it tells them that they are important.  You do not have to change their minds, but an open discussion will lead the way to more open discussions and more open minds.  It never hurts to see the other side of an argument even if you don’t agree with it.

Number Six:  None of these things will be easy, but we are here with you to help you.  Your family is here to build you up and keep you strong.  There will be days that are hard, and you will wonder if you have enough strength to fight the good fight, but you do.  You do.  And those who love you will support you.  Always.

Number Seven:  You can be anything you want to be.  Anything.  Even President of the United States if you want to.  And I can’t wait to see what you will become and how you will impact this world.

—–

I am tired of this election.  I am weary.  I am worried that the vitriol will continue and will poison young minds.  We have to speak to this as parents, to let our kids know that this is not ok, this is not what we condone as civility.

It’s not who we are.  It’s not who they are.

We need to lead our children back to kindness, back to confidence, back to finding their own true passion.

No matter what the politicians say.

 

 

 

 

 

 

 

Our Kids Inspire Us

Often times, it’s our kids who inspire us.

They don’t know that they’re supposed to feel bad for themselves.  They just want to feel better so they can get back to being kids.  They bounce back quicker, not just because they are young, but because they want to move forward, they want to get past their illness.

They don’t dwell.

Even if they’ve had a crappy day, a day filled with pain and anxiety, with pokes and prods and tests and sticks, even after surgeries, or chemotherapy, or dialysis, or injury, they go to sleep and the next day they re-evaluate.  If they are better, even just a little bit, you can tell because their eyes are clearer, their smiles are wider, they want to do more things.    We as parents help them celebrate small victories, marking their progress the way we mark their height in tiny increments on the kitchen wall.  We are their cheerleaders, and they are our heroes.

SickKids in Toronto has launched a new ad campaign called “VS.” It’s a moving video showing sick kids versus their illnesses. It shows kids as knights, or prize fighters, or motorcyclists, or professional wrestlers.  It shows them beating the odds.  It is powerful because it manages to show you the steep hill they are climbing with these illnesses in a short amount of time.

Watch it here.  Have tissues ready.

The picture I’ve posted above is of Wendy.  Here, she is four years old.  She had spent over 100 days in the hospital, she was taking 14 medications in different combinations, every two hours.  She was on five blood pressure medications, and she was getting up to eight shots a day of insulin. You might not recognize her because she had chubby cheeks because she was in kidney failure and one of her medications made her grow extra hair all over her body.   But just look at that smile.  That’s a kid who still played on the playground, climbed up trees, swam in the pool.

We just worked the medical stuff around her.

The other night Wendy and I were lucky enough to be invited to an event for the hospital, called the Storybook Ball.  At it, there were many people who had heard of her video and came up to her, both to tell her that they had cared for her as a patient, and that they were inspired by her video.  It couldn’t have been possible without the Architectural Firm Payette, who led the way through the whole cartoon.  They utilized all of their extra talents, the ones they don’t use every day, to create this video.  Wendy inspired them, and they created an inspirational work.

They have written about the video from their perspective, and you can read that on their website.  It is fair to say that it is impossible to thank them enough.

One of the sweetest moments since the release of the video last week, was a short email from an Emergency Room Attending Physician.  She wrote to say that she was already using it with her patients when they arrived and that it seemed to be entertaining and calming to them.

It’s so amazing to know that after all that time, after all that work, that it’s going to make a difference in the life of kids who are in pain.  It’s actually working.

This kid inspires.  Lots of kids inspire.  They teach us to keep moving forward.

I’m going to end this rather short post with one of my favorite quotes, one that reminds me of lots of kids like Wendy, lots of Brave Fragile Warriors:

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.”
― Mary Anne Radmacher

 

You Are Here! With Wendy!

The Cartoon has been completed and sent to the hospital!

(If you don’t know what I’m talking about, you should read the #projectW blog post first.)

After over two and a half years, through multiple drafts, multiple meetings, and multiple mediums, we have a finished product that will (hopefully) benefit young children and their parents.

Picture this.  Your kid gets hurt, to the point where you need to go to the emergency room.  Your child is in pain, and is scared, and is nervous.  Do you know what is going to happen?  Probably not, because not many people spend a lot of time in the Emergency Department.  So you as a parent are also stressed and wondering what is going to happen.  Most stress in the hospital happens in the waiting room of the ER.  So how can that be alleviated?

Wendy and I wrote this little story with that in mind, giving an introduction to the Emergency Room and to the hospital in case the child gets admitted.  It runs about nine minutes long, enough time to get settled and have your questions answered.  It also gives you some suggestions on how you can prepare yourself for when you meet the doctors.  You can write out what hurts, when it started, what you’re worried about, how you feel, and it will get the conversation going more quickly.

So it’s designed to alleviate stress and foster communication.  Imagine if all hospitals worked on ways to incorporate these things into their care scheme.  We had whole teams on this project, both in the hospital and at Payette, an architectural firm that specializes in hospitals.  In the hospital, the Family Advisory Council brought together a group of experts to comb through the script.  There were doctors, nurses, social workers, and child life specialists, who all added their advice and counsel.  Then at Payette, there was another whole team of creative people who put it together.  There were animators and musicians, people who were good at the storyboarding and composition.  There were people who spent Saturdays recording Wendy’s voice and teaching her some elocution so she could enunciate well.  They made sure they included Penny in one of the pictures (that’s Penny getting the thermometer over her forehead!) and they included Wendy’s stuffed animal Teddy who has been through all of the hospitalizations with her.

And get this, all of these people did this out of the goodness of their hearts.  Nobody was paid for a moment of any of this, through months of preparation, meetings, and work.

They did it because they thought it was important.

Think about it another way.  Every time you go on an airplane, you get instructions on what is going to happen during the flight, including what might happen in an emergency.  Do you get the same instructions when you go into the Emergency Room?  Why not? Wouldn’t you feel better, as an adult, if you did get some instruction or information while you were waiting to be seen?

Now imagine how much scarier it must be for a kid to be hurt and worried.

Here is my hope.  My hope is that this post and video go wild, that it helps thousands of sick and scared kids, that it inspires other hospitals to do the same thing.  I hope it encourages collaborative efforts because they are important, not because someone is going to get all the money or all the credit associated with it.  My hope is that there are fewer sick and scared kids, but when they arrive to Emergency Departments around the country that they will be given an introduction on what they can expect so they won’t feel so lonely and vulnerable.

Please watch this video.  Please think how many people put their hearts into this production.  Please share it widely.

https://vimeo.com/186454486

Thanks to everyone for your support through these efforts, including your kind words and suggestions.  Thanks for not letting me give up on it.

I asked Wendy what she thought about the whole thing, the more than two years, the different iterations, the meetings, the pictures, the recordings, and she just said, “I think it’s pretty cool and I think it’s going to help a lot of kids.”

She said it better than me, and in fewer words.

Flu Shot: Who Depends on You?

There’s been a lot of talk about the Flu shot lately, mostly because the nasal mist isn’t available this year so everyone needs to get a shot.

Lots of people don’t like shots.

We often make our kids do it, we even hold them still or hold them down so it will happen. This is especially true when our kids are medically fragile. Getting a flu shot is sort of a no brainer, it’s  an easy thing to do to protect our kids against something that could be life threatening.  I know with my daughter Wendy we’re always right near the front of the line to get the shot.

But when it comes to the conscious decision whether or not to get your own flu shot, a lot of us find a whole bunch of excuses.  It’s not convenient.  It’s a hassle.  I don’t like shots.  I get the flu from the flu shot.  I have heard them all.

I have had the flu exactly one time in my life.  When I got the flu in late April of the year 2000, I honestly thought I was dying.  Sweating through my sheets, unable to eat, feeling like a truck ran over me.  I was quite literally a hot mess.  There’s a old wives’ tale that says that a first year teacher will get every illness her students get, and that will build your immune system. At least in my case, that was the truth.

I have gotten a flu shot every year since.

However, Michael has missed his flu shot the last couple of years, for all of the reasons mentioned above.  It just got away from him.  These things happen.

Then he got the flu.  At the worst possible time.

If you’ve read my blog, you know that once a year I’ve taken a group of students to Eastern Europe to study the Holocaust.  I’ve blogged about my stress level in preparation for it in the post Confessions of the Alpha Parent.  It’s not that Michael can’t take care of the kids, he’s a wonderful capable parent who loves his daughters and is a responsible individual.

But then he got the flu, and his wife was 4,000 miles away.

He was  not the only one.  Penny got the flu too.  Only she had the flu shot, so her flu lasted about 24 hours.  Michael was knocked horizontal for about a week.  But he was very conscientious: he called the nephrologist, told her the story, who consulted with the Infectious Disease doctor and they put Wendy on prophylactic Tamiflu.    Because the fact is that if Wendy got the flu, it would likely earn her 72 hours in the hospital for monitoring.  We would like to avoid that if we could.

He also farmed Wendy out to friends.  She was gone for most of the day, every day, between school and after school activities.  She also stayed at friends’ homes and had dinner there, really only coming home to sleep.  Others called Michael daily to make sure he had the basics in the house:  milk for cereal, dinner for the kids, etc.   Thank God for a good community.

I had made a whole bunch of soups as part of my preparation to go to Europe, so the family could just heat them up and eat at the end of the day.  So, luckily, Michael and Penny had lots of Chicken Noodle Soup to eat!  And they both made sure they were hydrated.

Nonetheless, I felt terribly guilty about being so far away. I would call Michael over facetime and he would be in bed, looking terribly sick, trying to put a good face on because he didn’t want me to have to come home early, but clearly struggling.  His illness made him barely able to keep it together, but he did, with the help of our neighbors and friends.

I probably don’t have to tell you that he was the first one to get his flu shot this year.

Let me ask you this:  Who depends on you to be healthy and take care of them?  What would happen if you couldn’t do it, for maybe a week?  Isn’t it worth a short shot, a quick trip to the doctor or pharmacy, so that you don’t have to worry about it, or worry about spreading it to your child?

The answer should be obvious.