Starlight in the City

Starlight Children's Foundation...


Starlight MidAtlantic helps seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities.

We belong to the MidAtlantic Chapter of the Starlight Foundation and so far we have attended the circus when it came to town in February. We had a blast. 

They just hosted an event today at Franklin Square in the city (Philadelphia). It was wonderful. You see, in the almost-the-same-temperature-as-hell city during the summer, Franklin Square is an oasis of greenery and frankly, peace. Yes, it sits next to the Ben Franklin Bridge and everyone heading to NJ (and getting lost around the circle that ends the bridge, with the big lightning bolt and key statue), but it's a little piece of quiet amidst the grind of the city. 

I dearly love my city. Everything about it. Every single time I come home from NJ across the bridge, or up I-95 from DE or someplace that I have been, seeing my city from the driver's seat of a car or from the window of an airplane, my heart skips a beat. Honest it does. I love it.

We started with mini-golf, among little replicas of Philadelphia all around. My kids loved walking among all their favorite things, brought down to their size.

Little ole Independence Hall and the Liberty Bell.

Philadelphia Museum of Art. They all think they are Rocky.

Boathouse Row, where our annual Philly JDRF Walk is.
I laughed at the little rowers in their boats.

We rode the carousel. Grace was on an eagle. 

She was transformed into a princess. 

And of course, you know what they had to eat at the Starlight event, don't you? Pizza of course.

That's a 40g slice with a +30% temp basal increase you are looking at.
Started at 97, ended at 114. Take that pizza!

A gyroscope metal play thing on the playground. Left her dizzy but oh it was fun to spin!

This would make me puke. Her, not so much.

A great event, and you know why? It's all about coming together and realizing that among all this medical talk and medical visits and thrashing around in the world of diabetes, that there are others out there with children who are sick too. And they all don't have diabetes. And none of us is 'worse off' than the other. We all have our challenges. And we smile at each other, and we ride the carousel together, and we wink and we nod and generally, we are understood. There is beauty in that.

And there is also love. Thank you Starlight. 

JDRF Walk - Road Trip and DMeet-Up!

The countdown whiteboard that I looked at for the last 3 weeks:

Why? Because we just engineered the biggest secret between her and her friend from diabetes camp!

You see, Lily lives about 3 hours away in our state. She came to visit us in February and the girls had a blast together. They had missed each other from camp and it was delightful to see them together again. So, about a month ago, when I learned that Lily's JDRF Walk was this past Saturday, well, it got me thinking that 3 hours certainly wasn't that far away and maybe we could SURPRISE Lily by coming to her Walk!

We did it! We drove up early Saturday morning and surprised Lily, who had NO CLUE that Grace was coming. You should have seen her face!

The JDRF Walk was a great event, with teams walking and money raised. Lily's mom was on the committee that did a fantastic job arranging raffles, silent auctions, teams, shirts, entertainment for the kids, lunch and generally making it a wonderful event.

 It was at a baseball stadium, which was even cooler cause we got to walk 

around the inner track of the field!

We walked, all of us, for a cure.

'Lily and Friends' Team

Hand in hand.

The girls caught up with each other's lives, ate, gabbed and compared Pod sites. Yes they did.

The visit would not be complete without a swim in the hotel pool, and pretending they are mermaids with their fake tail (see Grace's legs, yep, a tail) which is now tradition.

They were awed when a little girl in the pool spotted them and yelled 'Mermaids!!!!'

And a night spent at your friend's house, complete with bonfire and marshmallows 

and s'mores (which was SWAG-ed at 30 g carbs each), 

mopeds and a hammock in which to lay together.

A night at the hotel, sleeping together in the same bed, 

with the same bears (who are each named for your BFF)

Of course, a night time check at 2 am for each, laid out in advance.

Thank goodness for different colored covers for Pod PDM's!

Breakfast together. Bacon lovers unite!

Sad faces when it's time to leave each other.

Which then, of course, totally cracks them up.

Until August and until Camp again, a hug and a goodbye.

There is nothing like the love of a true friend.

Someone who knows you and loves you, well, for being YOU.

Nothing at all.

Thank you Lily and Grace.

Road trip!

You got that right - we re outta here on a road trip!

We got pumps, insulin, juices, clothes, swimsuits (somehow it always involves swimsuits) packed.

It might involve a surprise.

It might involve a certain little girl who went to Diabetes Camp with Grace.

It might involve a JDRF Walk.

Details on Monday!

Enjoy your weekend everyone!

What I've learned - DBlog Week

According to Vedanta, there are only two symptoms of enlightenment, just two indications that a transformation is taking place within you toward a higher consciousness. The first symptom is that you stop worrying. Things don’t bother you anymore. You become light hearted and full of joy. The second symptom is that you encounter more and more meaningful coincidences in your life, more and more synchronicities. And this accelerates to the point where you actually experience the miraculous. 

~Deepak Chopra 

What I've learned during this Diabetes Blog Week...

* We are quite a bunch of PWDs, CWDs, caretakers, mamas, papas and others, all touched by diabetes and all doing it differently. But we are all here, doing the D day after day. I am amazed and awed by all of you.

* When I am feeling down about Grace having diabetes, I think of all of you out there, standing in hallways in the middle of the night waiting for a low to rise, changing pump sites, bolusing highs with no end in sight, and counting and measuring food. And believe it or not, it gets me through. Time after time.

* We have the best kids on the planet. D kids are the cutest and the most courageous, hands down.

* We all having funny moments that leave me laughing and give humor to such a dark disease at times.

* We have the best support network on this www. Honest, we do.

* We are each different in our care of our kiddos, but it doesn't mean that one does it 'better' than the other. I have something to learn from each of you out there about how I can do it better, for myself and for Grace. Thank you for that.

* We collectively, could move mountains. We ought to try some day.

* We have a wonderful voice together. I'll bet if we all got together in a choir we would rock.

* We honestly love and like each other. I do DOC, I love you. I like you too, I really really like you.

* We will all get through this, together.

In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.

Albert Schweitzer

Life with D in pictures - DBlog Week

Life with diabetes, is just, well, life. 

Happy Saturday everyone!

Awesomest Thing with D - DBlog Week

The most awesome thing Grace has done since being diagnosed with diabetes?

That's easy....

She went to diabetes camp. 

For a whole week. 

Overnight. 

And she was 8!

I wrote about our experience with Camp Victory, run by Setebaid Services, here in PA. I wrote about the pros and cons of Grace going to Camp. You can read about our drop off here. And then the grand finale, the pick up from camp, that's here.

You can read Grace's own thoughts about her week at camp here.

Camp has stayed with Grace since she went last summer. There isn't one week that goes by in this house that diabetes camp is not somehow mentioned or thought about. It's amazing the impact the week had on her. She loved every stinkin' minute of it. There was not one 'con' in her eyes. Even when she had to sit out of swimming for 15 minutes because of a low, not one regret. You know why? Cause on other days, she saw her friends sit out while they were low. And she knew it. She felt a giant sense of community and for once, she was not different. Not in the least. I think that's enlightening on so many levels.

She has great friends from camp too. Some we have met-up with since camp, the bond is that strong, even at 8 years old. I wrote about one of her friends, Lily and their meet up a few months back. It was lovely for so many reasons. 

The pictures from camp are posted on her bedroom door. I found her once, a few weeks, ago, touching the picture and pointing to all her bunkmates. She knew each of their names. She knew if they had pumps or shots. She knew what they liked to eat and what they liked to play. She told me about lows and highs and swimming and campfires and funky Olympic games and arts and crafts and well, all of it. Just like that. One picture and it all came flooding back to her.

I knew sending her to camp would be good. I didn't know if she would miss me and our family. She did and that was normal. She survived a week in other people's care and that was both wonderful for her and for us. I slept for a full week. I regrouped. I didn't think about diabetes much for that week. If I am being honest, it felt really good. I missed her, but the week 'off duty' did wonders for my psyche, my body and my soul.

What camp did for Grace was profound, and it's effects linger on to this day and beyond. It gave her community. It gave her a sense that she is not alone in this world. It gave her confidence to try new things and to become more self-reliant. It gave her a sense of her future as a young woman with diabetes. It saved her from the aloneness that the D brings with it. 

And that, my friend, is totally awesome.

D-blooper - DBlog Week

This is a re-post from May 2010, it was too good to pass up.
Oh and all you guys and the gals in the DOC are making it hard to write - there are TOO many great Dblogs to read!!! It might take me weeks to catch up! Great stuff out there folks - loving it!

Beeeeeeeeeeeeeeeeeeeeeeep!
Beeeeeeeeeeeeeeeeeeeeeeep!
Beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep!

"Grace, do you hear that?"

"What Mom, oh that, yeah, I hear that. It's some kind of high sound, like squealing."

"WHERE is it coming from?"

I walk around the kitchen. Grace walks around the kitchen. We enlist her sisters to help walk around the kitchen. I unplug the toaster. I peek inside the microwave. I unplug the kitchen clock. Nothing. The beeeeeeeep continues. The sound gets louder in some areas and softer in some areas. I cannot for the life of me figure out where this high pitched squeal is coming from. I check the obvious places - the oven, the refrigerator, my watch. I look at her old meters on the shelf, pulling my ear in close. Nothing. The sound comes and goes as we both walk around the kitchen.

Grace leaves to sit on the couch in the living room.

"G, the sound is gone from the kitchen now."

"It's out here Mom, the sound is out here now. I still hear it."

"What do you mean G?"

I go out to look. I get closer to her. I lean into her and the Pod on her upper right thigh.
It is squealing.

"MOM, it's ME!!!!"

Letter to Grace - DBlog Week

Dear Grace,

Hello sweetie, it's Mommy. As I write this letter, you are 8 years old. You have had diabetes for a little over two years. Does it seem longer to you? It seems like forever to me, if I am being honest. It feels like you being six was a long, long, long time ago. I want you to know that I hold your memories of being a baby, a toddler, a preschooler and a kindergartener, before diabetes. You might not remember your life before diabetes entered it, but I do and I will, always.

I am writing this letter to you now, as you are 8, but I don't expect you to read it until you are much older. There are parts in here that you may not understand yet, but I want you to know that I thought them while you were young.

I want to tell you how ultimately brave you are, having diabetes at such a young age. I don't think I would have been nearly as courageous and honest and brave as you. I admire you so deeply for continuing to be who you are, throughout all of this. You face challenges with humor that leaves me rolling. You are honest beyond belief and I so love that about you. If I ever want to know how you feel or think, all I have to do is simply ask you. Please don't ever change that in your life. So many people you will meet wouldn't know an honest feeling if it hit them in their face, and yet, there you are at age 6, age 7, age 8, being brutally honest with me. Thank you for that, if I might not have told you yet. It will serve you well in life.

We are so lucky that you chose to come into our family and that you chose me as your mother. I am honored that you are in our lives, diabetes and all. I wouldn't change a thing about it, and now look at who's being honest, Mommy. I honestly wouldn't. I always tell you, 'it is what it is', right. Well, here I go again, honey, it is what it is. Acceptance and move through it, to enjoy your life and do all that you want to do. Yes, if there was a cure for Type 1 tomorrow, I would stand in line all night to make sure you are at the head of the line. But right now, thats's an elusive idea. I hope there is a cure in your lifetime. When that day comes, and if I am not around, please raise a glass in my name and yours, and say a thank you to the good Lord who let you live so long to see it and then say a blessing on those we have already lost to this disease, that they did not see the day.

I want to tell you something that you should know. It's hard to think about and even harder to write. I don't expect you to read this letter until you are older, older to understand more of Type 1. If something should ever happen to you, a low that you don't wake up from, a high for days, weeks, months, I want you to know something. This disease is hard. This disease can take it's toll. I want you to know that I have enjoyed every minute as your mother. Every single minute, even when I was being strict with you. I have loved you from the depths of my soul. I have lived in the moment since you were diagnosed, taking in every smile, every laugh, memorizing every good time, because in the back of my mind, no matter how much great care I give you and all that you learn to do to take care of yourself, it could happen. I don't say this to scare you, I say this because it is the reality. It is what it is. I want you to know how very loved you are. I want to tell you that I will see you again, in a place where we are all well and we have no worries. I want you to know how very much I loved being your mother.

I know you are going to grow up and do great things. I know you will do them with diabetes. Some people will know that about you and some will not. Prove every person who says 'you can't' wrong. If you take risks in life, if you play and work with all your heart, you will do fantastic things. Don't forget about your knees, a little time on them - working, praying, thanking - would be good for you every day too. There are always people in this world who have it worse than you. There is always someone who could use your help. So, whenever you get down, whether it be about life, love or diabetes, my advice to you is to get up and outside and look for ways to help others. Get your mind off yourself. The sun did not rise cause you got up this morning. Best to remember that.

I love you. No matter what. You are a fantastic child. You bring joy to our lives in so many ways. You are smart, capable and can do whatever you want in life. You have so many memories of your childhood - look back on them and realize that we all did the best we knew how for you. When you are older, you will do the best you can too, no more and no less. You will be a wonderful woman and mother when you grow up. You will do great things and I hope you do them with love.

Love,
Mommy

DOC and AOD (Admiring Our Differences)-DBlog Week!

I know there is strength in the differences between us. I know there is comfort where we overlap.
Ani DiFranco

In the DOC, there is always the chance to learn. Sometimes it's what to do. Sometimes, it's what not to do. From every person in the DOC, there is something. And it's never too late to learn.

I thought about all of you out there and here is what I have learned, from each of you:

From Kelly, humor, laughter, friendship and bitch-switch flipping when the time is necessary.
From Kerri, that mommyhood is possible and my own little '6-until-me' can grow up strong and healthy.
From Meri, that we are strong, strong mothers and that if she can do it, so can I.
From Reyna, laughter about the situations D places us in, and same-same.
From Joanne, that mommyhood, with T1 along for the ride, is a journey we can all relate to.

From Hallie, that every day is sacred.
From Leighann, that information is a great thing in the DOC.
From Bennet, that each of us has our own story to tell and yes, your diabetes may vary.
From Laura, strength to carry on and the courage to reach out for help when I need it.
From Lexi, a sense of my bad-ass D-Mama self and that we as a group, truly do rock.

From Lee Ann, honesty, reflection and of course, art as a means of expression on this journey.
From Lorraine, that food is important, that change is ok and our kids can do this.
From Pam, that grace is something else :0) and connections hold us together.
From Scott, that PWDs always have something to teach us.
From Betty, that 52 years with the D is something I want my daughter to say one day.

From Jen, that pictures about D are worth a thousand words
From Wendy, the life of a child, of all our children, is priceless and gluten free can be done well.
From Jules, that thousand of miles of distance does not disconnect us from other D-Mamas.
From George, that struggles can be overcome and there is a little ninjabetic inside all of us.
From Karen, that blogs are places of support for us all.

From Nicole, that there is so much still to be done looking for a cure for our children.
From Lora, that we indeed kick-arse as DMamas.
From Donna, that our kids are kids, foremost and they take T1 along for the ride.

From Wil, honesty is helpful and curse words are sometimes the best expressions.
From Tracy, that princesses do indeed have T1.
From Haley, that my gal will be a teen one day and I can only hope she's this cool.
From Heather, that at the drop of a hat, it can all change again, and that the DOC will be there for you when it does.

We each approach parenting a child with diabetes from a different angle. We listen to the PWDs in our lives, who have so much to tell us about having been a child with T1. We each love our children fiercely. We each, at the drop of a hat, will rush to support each other. We each have diabetes in our lives and are living strong with it, rolling through the struggles and enjoying the triumphs.

I feel strongly that I need to say it on this blog -  We push each other to be our best. We support each other to rise up again tomorrow and do it all over again. We encourage, we provide shoulders to learn on, we praise and we listen. That's what this DOC means to me. We have chosen not to be a forum of parents who condescend, judge and admonish. We all belong here. We all fit in. We are hard enough on ourselves. This DOC, these gals and guys who I choose to listen to, and share this journey with, are exactly that. I refuse to be caught up in more waves of guilt, more waves of 'I'm not doing it right!' and more waves of us-against-them.
I refuse to.

Thank you, each of you, for being you.

I admire our differences.

If I left you out and I truly follow your blog, my apologies... I'll be adding those I might have forgotten to the end of each blog post this week.

Rowing the boat

When I think of the DOC I think of all of us rowing a boat together.
Weird, I know. Bear with me here.
We are on a journey together, each of us placed here for a common goal, to support one another.
To say to each other 'You are not alone on this journey, I am with you."
To lift each other up, no judgments and no blame, no criticism that stings and no harsh words that wound.
That's why I came to the DOC and why I stay, because I'm in the darn boat and I need help.

So, we are all in the same boat.
PWDs, CWDs, T1s, T2s, caregivers, relatives.
One boat.
And that boat fits all of us. Every single one of us. Amazing, isn't it?
There is always more room in the boat. Always.
We welcome new members aboard, although it's a boat they never wished to travel on.

The water is smooth sometimes.
Its sunny some days and cloudy the next.
And sometimes the ocean is choppy and rocks the boat.
Sometimes it's so rough that it almost tips us over.
The funny thing is, it never does.

You see, we are all rowing the boat.
But, we are all not rowing at the same time you see.
Sometimes, people need rest from rowing. It's tiring to row all the time.
People grow tired, people get upset, people are done with this boat and this ocean and all these other people on this damn boat. And they wish to get off, to just stop rowing.

That is the time that the others on the boat say to that person -
"Let me row for a while. I have the strength now. You take a rest. Clear your mind. Look at the ocean. Chat with others. I'll do the hard work and keep us afloat and steady on the course. Let me row for a while."

And we all take turns rowing.
We know that it could be us soon enough, needing a break.
We know that we have the strength to lift the oars when others are tired.
We are in the boat and it is what is saving us.

Cheap LowKillers and Blue Circle Pins

Hows that for a title? I feel like Reyna, who always comes up with creative and fantastic titles for her blogposts!

Found these super-cheap, on the clearance rack. Lowkillers. 25 cents. Not bad for Skittles in an egg.
Now it's FUN to bring up a low :0)

I am a flea market junkie. There, I said it. I'm not a buyer so much as I am a looker. I love stuff people put out to sell. And no, I am not a hoarder, though I love the show Hoarders, it makes me feel good about the state of my house.

I have begun a little collection. You know how people are always selling their costume jewelry? Well, surprisingly, lots of little old ladies once wore blue crystal circle pins! Guess what they look exactly like? You guessed it! The diabetes blue circle.

My weekend's latest additions:

Yeah, I'll be sporting those to my next diabetes conference.