Being A Kid Without Explanations

This is the week we begin to pack for sleepaway camp.

Let me tell you, when we first started doing this whole sleepaway camp thing, I was terrified.  First of all, I had never been to sleepaway camp.  My family and I lived at the Jersey Shore, and both of my parents were teachers with the summers off.  So neither of them ever felt the need to send me away, nor did they have the money to do so.

After Wendy had been diagnosed with type 1 diabetes, I did a lot of reading about how to be a supportive parent, and one of the suggestions was to send your child away to a diabetes camp.   As luck would have it, the one camp the book mentioned was in New England, called the Barton Center for Diabetic Girls.  We decided to give it a try.

The Barton Center is a unique place.  It is named after Clara Barton, because her birthplace is on the site of the camp.  You may remember that she was the founder of the American Red Cross.  It’s a camp exclusively for diabetic girls, ages 6-16.  Wendy naturally wanted to go as soon as she was old enough at 6 years old.  At the time, she had been a diabetic for roughly three years and had her kidney transplant about a year prior.

As you can imagine, I was super nervous.  We had never had the opportunity to be away from Wendy since her illness because there were a lot of medications to be taken, as well as monitor her insulin needs.  One of the features of the camp, though, is that there is a doctor on site and a nurse in every cabin, to administer medication both by mouth and with injections.  Knowing that Wendy was going to have that kind of monitoring made me feel a little better.

She was going to go away for the “short program”, which was only five nights.  It’s meant to ease girls into camp without too much worry about homesickness.  Five nights felt like an eternity to me.  What in the world was I going to do with myself?

Packing for camp is its own sub-special category.  Finding clothes for five days that you don’t care what condition they return in, ripped or stained, or better yet, lost.  Sandals, shower shoes, sneakers, a caddy for toiletries, sunblock and bug spray to round out the list.  Oh, and a flashlight, and extra batteries.  All of these things dutifully labelled so that the chances are better that you might get them back.  Ha.

We drove Wendy the four hours from our house in Vermont to camp.  She was excited and nervous.  I was nervous.  We got to camp and had to wait in line to see the nurse.  I had all of Wendy’s medications, i had filled out all of her paperwork, I had signed all the releases.  We had a cold pack for the liquids, a ziploc bag for the pills.  It took twenty minutes to go through everything, and while I did, Michael took Wendy to her bunk to make her bed and place her Teddy.

The time had come, time for us to leave.  Leave my little girl that had gone through so much, that I woke up every morning at 2 am to check her blood sugar, that I had spent every day fixing her meals, counting her carbs, giving her the right medications before and after her meals.  I was handing her off to smiling teenagers and a nurse.  I thought I might just die on the way home.  Wendy was very brave, she said her goodbyes, and went in the cabin, but before we got a few steps, she ran out and gave another hug and another kiss just to be sure.  She had tears in her eyes.  i had tears in my eyes.  Michael did too.

Then we left.

Ok, now it’s time to tell you the first thing we did when we got home.  Michael and I ate ice cream sundaes for dinner.  Mint chocolate chip ice cream, m-n-ms, hot fudge, whipped cream, and a cherry.  Something we could never do with a diabetic daughter.  We also went away for a night to the North Shore of Massachusetts.  We walked around Salem, famous for its witch trials, and popped into book shops and candy shops and read when we wanted to, ate when we wanted to, relaxed with no schedule of medicines or insulin.  We re-set, we relaxed, we re-energized.  Five days later, we were ready to get her.

I was so excited to go get Wendy from Campj I didn’t sleep the night before.  I had missed her, and I was ready to see her.  When we arrived, she was weeping, WEEPING, huge tears coming down her face, and I thought, “Oh My God, what have we done?”  We had made a mistake, she was too young, we should have waited.

Nope.

She was weeping because she didn’t want to leave.

Finally she had found a place where she didn’t have to explain blood sugars and insulin, or be different.  Everyone was like her.  Everyone checked at the same time, everyone got insulin at the same time, everyone knew the deal.  Wendy was one of many, even if she was the youngest one.  And they laugh, and sing, and make crafts, and play silly games, and go horseback riding, and have “hands free dinner” and are just kids without explanations. She had never been so happy since her illness began.  She begged us to let us stay longer, but it wasn’t possible that year.  The next year she went for two weeks, and has continued to do so for the many years after.

If I were to ask her where her favorite place on earth is, she would say camp.

So this week, I again lay out the dozen pairs of underwear, the dozen pairs of socks, the toiletries, the sandals, the sneakers, the flashlight with batteries, the bug spray.  Teddy still goes too.  And I miss her, I MISS HER.  Every day of those two weeks.  But I know that it’s good for her, it’s good for both of us, to have this experience.

(And Michael and I still have hot fudge sundaes for dinner on the first night she’s away.)

Ripple Effect

Have you ever heard a story that just stays with you?  Something that hits at your core, that makes you think about it, and re-think about it, and connect to it, and share it.  Maybe you have stayed in the car a little longer in a driveway because you are listening to “Story Corps” on NPR.  Maybe it’s something you’ve read on facebook.  Sometimes, you don’t realize how much a person’s story means to you, in your own journey to understanding and recovery from a diagnosis or the diagnosis of your child.

This recently was brought to my attention when a woman asked to be my facebook friend.  I was pretty sure I didn’t know her, had never met her, but there were a lot of people I had met at the American Transplant Games, and many of the mutual friends she and I had in facebook were those same people I had only recently met in Cleveland.  So I decided to accept her friend request and see who she really was.

What I didn’t know is that I had been reading her blog posts for over seven years.

Her daughter, Lacey, had gone through two organ transplants, both a heart and a kidney.  The heart transplant happened when Lacey was a baby, and after many years of immuno suppression (which isn’t great on the kidneys) her kidneys gave out too.  Lacey’s brother donated his kidney to her.  I had read all about it on their CarePage.

CarePages are a medical blog where you can update your loved ones about your condition. There are other ones like it, the most popular being CaringBridge.   We had been blogging about Wendy’s illness from the first week that we were at Massachusetts General Hospital.  It was helpful because it kept everyone updated without having to tell the same story over and over again.  It also was therapeutic for me to take stock of the day in the evening and determine what had gone well and what hadn’t.  In a hospital where certain events happens quickly between long periods of waiting, it was helpful to think through every day to process it all and write about it for our loved ones.   It was also bolstering because our loved ones could write messages of support for us and for Wendy at the bottom of every post, carrying us through to the next day.  There was an option to keep it private, to have people ask to join the group, and initially that’s what we did, kept it closed for only family and friends.

At the point where we were told that Wendy was going to need a kidney transplant, we had never met anyone who had gone through organ transplantation before, so I searched in Carepages and found Lacey Wood’s site.  It’s called LuckyLacey, and it told not only all about her journey as a heart transplant patient, but also as a kidney transplant patient.  It told all about her competitions in the American Transplant Games and the World Transplant Games.  It talked about her college that has a special section for kids with transplants who are going through various stages of transplantation so that they can get the best care they need while still going to college.  I learned so much from this site, that there was a warm, caring transplant community that connected each other to the best care and resources, that there was a celebration of life and living.

At a time when I was very scared, this blog especially gave me hope.

It also showed me what was possible for Wendy.  We never would have known about the American Transplant Games, or the Transplant Winter Camp, or the Chronic Illness Initiative at DePaul University.  We learned though Lacey’s journey and through the generosity of her words in her Carepages blog.

Her blog made me re-think our blog, WildWonderfulWendy.  What if our blog about HUS and kidney transplantation helped someone else the way that LuckyLacey helped us?  Michael and I talked about it and decided to make Wendy’s blog public.  

And now, years later, I’ve started this blog.  I outlined why I decided to write it in the first place in my first post, Brave Fragile Warriors.  I realized that being the parent of a chronically ill kid can be incredibly isolating.  You have so many feelings and not a lot of people who can relate to you.

We never know what impact we have on another’s life.  We don’t know what our ripple effect is.

When Lacey’s  mother contacted me to be my friend on facebook and I realized who she was, I sat down and wrote to her to let her know how much Lacey’s blog helped me through the fear and isolation of being the mom of a kidney transplant kid.  Otherwise she never would have known her own ripple effect.

It’s so important to share these moments, so other parents know they are not alone.  It’s equally important to share with others how much their stories touch our hearts, so that they may continue to write.  We are many stories, but the Same feelings of helplessness, fear and love.

Thanks for reading my stories. Please share your own, in the comments below or with your own blog and then let me know so I can read them.

Forward together is better than forward alone.

Hospitality Homes

It’s time to tell you about Hospitality Homes. They’ve gotten a lot of press lately.  First there was an article in Upworthy, and there was also a segment on NBC Nightly News with Lester Holt.  They deserve all of the attention that they are getting, because they provide an amazing service to families who have loved ones in the hospital.

They house people and their families for free while they are getting medical treatment in Boston.  You read that right.

Boston is a center for medical advancement.  Filled with both  hospitals and medical schools, it is often where people travel to as a last resort.  They come for second opinions, or because there are world experts who can help.  Boston is home to both the number one hospital for adults (Massachusetts General Hospital) and the number one hospital for children (Boston Children’s Hospital).  Quite simply, it’s where you go if you need answers and you’re not getting them.

However, families are often already stretched thin with medical bills, prescriptions, and also the cost of travel to get to Boston, and hotel rooms are expensive.  This is where Hospitality Homes comes in.  Hospitality Homes is a non-profit organization that recruits volunteers to open their homes to families who are traveling to Boston for medical care.  They need to come from fifty miles away or more, and they can’t stay for more than three months.  But rather than a hotel room, they are coming back to a home, with families to talk to.  It’s comfortable and it cuts down on costs.  This is free to anyone who needs it and applies, and Hospitality Homes only asks for a donation to keep the organization running.

Seriously, how cool is that?

I learned about it a few months ago, and I decided that now that we live in the Boston area, that we should volunteer our home.  I talked about it with Michael, filled out the application, and was contacted by Denise DuClos, the Outreach Coordinator. She told me that it’s unlikely anyone would stay with us because we are quite far out in the suburbs, and most people want to be closer to the center of the city.  However, there were some things I could still do.

One of the opportunities she offered was to “host” a family that was staying in an apartment that had been donated near Massachusetts General Hospital.  I would be their go-to person to ask questions, or to take them around, or to help them to get to specific places.  I agreed. They were a great family, with two kids and a parent who was getting treatment.  They spent about a month in the apartment, and I would check in with them weekly and met with them a few times.  It was pretty low commitment, and I felt like I could put my otherwise useless knowledge to good use, knowledge about Massachusetts General Hospital and its surroundings, special places, parks you can walk to, discounts and free passes to museums.

Then a few weeks later, I got a call.  There was a mom that needed placement because her daughter was in the hospital, in a satellite campus that was close to our home.  She needed a place to stay from Thursdays to Sundays, for most of the summer.  Did we think we could do it?

Of course we said yes.

So she has been coming , and it has been great.  Most of the time, she’s with her daughter in the hospital, but we’re here when she arrives on Thursday and sometimes she has dinner with us. My girls give her hugs when she leaves.  I occasionally leave her a chocolate bar and a note on her bed.  She’s managing this illness with her daughter and we are supporting her.

I totally wish I knew about this organization when we were going through Wendy’s illness.  Imagine, having a home to go back to.  Imagine hearing kids laughing in the back yard or a kitty that snuggles up to you.  I remember when Wendy was in the hospital how much I missed music, it was totally missing from our lives.  No music in the hospital, no music in the elevators, no music in the hotel rooms.  It’s funny the things you notice when you’re in the midst of trauma, the things that signify normal life only when they go missing and you realize life isn’t normal right now.

Here’s the other thing.  Hospitality Homes is the only organization of its kind in the country.  Imagine if there was a whole interconnected web of Hospitality Homes that matched volunteers and families throughout the country, if they’re going to different hospitals for cancer treatments or organ transplants.  Imagine a network of caring individuals who could be called upon to open their homes in times of tragedy for families in Baltimore, New York, Atlanta, Chicago, Houston, or San Diego.

It would be amazing!!!!

Take a look at the Hospitality Homes Website here.  If you live in the Boston Area, think about volunteering your home.  If you know someone in need of a place to stay, share the information.  If you feel moved to donate, do that too.  There should be more places like Hospitality Homes in the world, connecting generous volunteers with people in acute need.

I’m so glad to be a part of it.

 

 

Only As Strong as the Weakest Link

I have a twelve year old.  She is chronically ill.  But she’s still twelve, and what I’m about to write is all “developmentally appropriate” but man, it burns me.

For the past couple of weeks, her blood sugars have been erratic.  I had been adjusting, modifying her basal rate, her insulin to carb ratio.  Wondering, is she growing?  Is she getting sick?  What am I missing?

The endocrinologist was perplexed too.  Blood sugar was rising at an unusual time.   Between dinner and midnight.  She asked me, “Is she having late night snacks?”

My answer was no.  But my answer was wrong.

Wendy was having unauthorized snacks after Michael and I went to bed.

I had noticed that some of the food had gone missing, bags of rice cakes, chips, pretzels, but I thought Michael was working late, we’ve had guests, maybe I’d miscounted.  I’d noticed that we were going through more fruit snacks than usual, which we use to raise Wendy’s bloods sugar.  But maybe they were tucked away in bags, for sports or the beach, or whatever.

Nope.

It dawned on  me at 2 am this morning.  2 am is when we check Wendy’s blood sugar every night.  The last few weeks, between her bedtime and our bedtime,  she’d come downstairs a few times, ostensibly to get the cat, or check her sugar, or say hello.  It seemed a little odd, but it was summer vacation, we thought it was just a new schedule, no big deal.

So as we were going to bed last night, she had checked her sugar, and it was 115.

When we checked it at 2 am, it was HIGH, which means it’s so high that the meter can’t read it.

Which means it was over 500.

So, from 115 to over 500 in four  hours……hmmm…..fishy.

I asked Michael if I could see the continuous glucose monitor…..And sure enough, right at the time Michael and I went to bed, her blood sugar skyrocketed.  It was clear, she was sneaking food.

The question then became how to address it.

Here’s what I did.  I took her garbage can and brought it downstairs. Then after she woke up, I went into her room and looked under her bed, behind her bed, in her desk drawers, and pulled out a ridiculous amount of bags and wrappers:

I laid them all out in front of Wendy, and I asked her what she thought I would say.  Her answers were right:

I wanted to know what she was thinking.

I wanted to know why she did it.

I was going to punish her.

Here’s the part she didn’t know.  The part I told her.  I decided that today was the day to tell her the complications of long term diabetes.  The blindness. The amputation.  The difficulty in wound healing.  I decided to tell her all of the things I feared might happen to her when she was older.  The reason why her father and I were on top of her sugars all of the time, that these were cumulative effects.  That carelessness now would result in pain later.  That her father and I felt a terrific responsibility to keep her as healthy as possible now so that she could be a healthy 90 year old with great-grandkids.

I told her that we’ve always told her that we are a team, and that I wasn’t angry (I’m really not), but I am terribly disappointed, because she let the team down.

We are only as strong as our weakest link, and today she was the weakest link.

To her credit, she accepted her punishment, being grounded and no electronics for a week. She apologized.  She understood.  She also knows, I think, that it’s going to take time to repair the trust that was broken, but it’s not an impossible task. She’s a good kid, she’s got a lot of health problems, and she’s testing her boundaries.  I TOTALLY GET IT.  That doesn’t mean it’s not hard for me because it kills me.

I want to protect her from everything, even herself.

I read her this post, before I published.