Monday, July 2, 2018

How Do You Find Your Voice? By Finding Your Joy.

Image result for advocating

This might come as a surprise to some but advocating didn't come naturally to me.  I was taught (or influenced, perhaps) to believe that  people of authority - which included policemen, fire fighters, teachers and of course, medical doctors - demanded deep respect.  When they spoke, I listened.  This fully underscored that it was expected to do whatever it was suggested that I do.  Without hesitation.

Then, one day, I was in a college writing class and suddenly, I had an epiphany; one of my professors had taken a liking to me (although at the time, I felt like it was a disapproval) and challenged my personal narrative.  What I discovered was that I didn't just need to regurgitate other's opinions, but instead, could begin to champion my own voice. While it felt completely foreign and subjective in tone, it also felt right.  For the first time, I had power to share what I believed to be true using my own moral compass.  Right or wrong, I had a belief and it mattered.

Old habits are hard to break and routinely, while in medical appointments, I would find myself slipping back into a passive patient role and forgetting that I might provide a greater value by focusing on my own personal needs.  After all, if I never spoke up, how would anyone know what roadblocks I might be challenged with in terms of employer, insurance, income, and even educational limitations. In my case, I often just went with the flow and tried to work around any personal constraints to take the medication or follow the prescribed doctrine.

When our youngest presented with symptoms that simply did not make sense of the given medical explanation by our pediatrician, that passivity became dangerous.  So much so, that a week in the hospital recovering from DKA, kicked off the ultimate personal change... no longer was I going to accept a response without researching and analyzing alternatives.  This wasn't just about me, but it was also about my children.

I can admit this now, but, I think I became kind of a jerk.  I was so far away from collaborative care that it took an obsessive online search to believe anything that was said from anyone.  Until finally, I was simply exhausted.  I knew that I needed a team and that team needed to be with a group of people that were committed to creating positive change and improving care for my children and for the greater T1D community.

I also needed to find joy again.  Diabetes is hard and this wasn't making it any easier.

So how did I get there? A few ways.

1.)  Taking time.  I needed to grieve.  Part of the diagnosis of T1D was recognizing that I felt completely failed by our old medical team.  Right or wrong, I also felt guilty in not seeing the signs of T1D and knowing how to respond to them.  In order to find my voice, I had to accept that not everything would be in my control, nor was I expected to know how to handle every situation.

2.)  Building a team.  After our botched diagnosis, I had to break away from our first pediatrician.  In order to do so, I needed to find another that was more in alignment to our family needs.  I also needed a pediatrician that was confident enough to work with me and to form a partnership that focused solely on giving the best care and being humble and honest enough to admit that not all of the answers would be perfect.  However, we would get there, and we would do it together.

3.) Having a desire to 'Pay it Forward'.  Part of our family's success has been to work to help others.  We volunteer, we share ideas, we communicate.  That's the biggest piece in finding your voice.  I often say that the first dx taught me what I needed to know while the second dx taught me how I want to change it to make it better for everyone.  To me and to the girls, there is great joy in taking an awful moment and creating improved care for all. 

This is perhaps the greatest joy life can give.... creating a lasting and meaningful change to give happiness to the world around you. 

Wednesday, June 20, 2018

What Does It Feel Like to Have A Child with T1D Away From Home?

Image result for feather

I remember when our youngest was newly diagnosed.  At the time, since she was only three years-old, we weren't missing an abundance of sleepovers.  In many ways, having no pressure to sleep over at a friend's house was a nice respite of one.more.worry of living with T1D.  We just didn't think about it at all and enjoyed the comfort of middle of the night checks through a short walk down our bedroom hallway. 

As the years ticked by, sleeping away from home was still less of a big deal.  Through the friends that she made, many opted for play-dates only, in lieu of long sleepovers.  Even as our older daughter was diagnosed, sleeping overnight still seemed less important than getting together for fun day-dates.  Perhaps it was a sign of the times as social networking (yes, the girls had phones - yep, no regrets!) was easier to stay at home but still communicate with friends.

Then, one day, fifth grade camp was upon us.  By then, we had stumbled through several uncoordinated, messy sleepovers and realized that the reason of not having them, was less about T1D and more about the cranky, irritable little girls that needed recovery sleep after.  Taking a plunge, I agreed to chaperone both sessions of the camp and rise above the fray of not just one or two tired girls, but an entire cabin of overly exhausted pre-teens. 

Simultaneously, through the years, our girls grew to handle more and more care.  They also fell in love with their T1D Camp Midicha and while it was a struggle to let go for an entire week, I also found it amazing that an entire volunteer platoon came forth to lead not only wee little ones but the older teens. 

Which has brought us to this point... a quiet house.  Both girls are happily ensconced at camp for the 9th year. 

And it feels.. right.  We now have an almost 17 year-old and 15 year-old.  In reflection, I am grateful that we didn't force or push separation any sooner.  The girls are both well-adjusted, able to care for themselves independently and have grown into their own pathways towards young adulthood.  Letting childhood happen organically, with or without T1D, during ages and stages, has made for a smooth growing cycle. I worry less because, I too, have been given time to teach myself how to navigate their childhood.  There has been no hurry, no rush and no keeping up with the Jones'.  Instead, the girls have led the way and together, we have allowed them freedoms at the right times.

The house is quiet.  The children are away from home.  And as a mom, it is OK.

Yes, I miss them tremendously, but I know that the foundation has been laid for a successful transition to college and beyond. 

This is what we hoped to accomplish all the way back in 2006. 

I am sure I will cry next spring when that graduation cap is on her curly head.  And again, in two more short, fleeting years for our youngest.  However, those tears will also be mixed with pride at the accomplishment that we made together in creating a family unit that allowed our girls to pursue their passions, dreams, hopes, accomplishments and independence, all while living with T1D. 

That's what I hope we all feel when we find ourselves faced with a quiet house. 

Well done, parents and kids! 

Wednesday, June 13, 2018

Diabetes Camp and the Camp Care Package

Repost of good information!!!  Still needing ideas for what to pack for your camper?  Here is a great way to avoid homesickness for BOTH parents and kids!!!!  

With one week in between school end and diabetes camp, I am now scrambling to put together two campers packing list.  Part of which includes the fun care package. 

First, start with a basic box.  You can use shoe boxes or recycle old UPS boxes.  I purchased two simple photo boxes from Michael's craft store.  Each cost just $3.99.  During a sale, the boxes are often as inexpensive as three for $5.00.  You can also find coupons for regularly priced items which discount around 40% off online.   

I try to choose colors that are more neutral now.  While my girls love pink, they both have recently changed out the look and feel of their bedrooms.  When camp is over, the boxes will stay in their rooms and be used to hold school papers, keepsakes and more.  Having a nice neutral color is a great way to blend decor.

At the same time that I purchased the boxes, I also picked up a few inexpensive packs of stickers to decorate each box with.  One rule of thumb for all items that go to camp is to make sure their is a label with the campers name.  Letter stickers work nicely for this. 

As I mentioned above, the boxes will stay in their room.  For this reason, I purposely am not going to decorate the label area.  When they come home, the girls will make labels to identify the contents.  Most likely, the boxes will hold other items after that. 

Next, the fun part...  gather up your goodies. This year, I chose items that appeal to older girls.  You can easily adapt this to suit your child (boys too!) with whatever items they find to be fun. 

Some ideas include: 

  • Outdoor toys like balls, Frisbees, discs.
  • Travel games, journals and comic books.
  • Sunblock, lip balm and hats.
  • Beach towels, string backpacks.
  • Tattoos, fingernail stickers, stuffed animals.
  • Or anything else that you choose!

Please NOTE:  Our camp does prohibit all food items - including gum, anything that looks like or is a weapon, nothing needing the use of matches, and no electronic devices.  This is not the time to give your child a cell phone to call home.  One of the best "perks" of camp is that your child is able to unplug and enjoy friendships in the wild outdoors.  Nothing is better than that. 

While this is fine to send, I generally avoid items that contain scent that may attract mosquitoes.  Therefore, no perfume, body spray or lotions. Deodorant and soap for the shower is a MUST!  The rest of the cabin will thank you!!! 

I try to select a few group oriented activities.  Should my child have a quiet moment back in the cabin, often, having a small toy to play with a buddy is a great way to ward off home-sickness.  The Cahootie catcher is a perfect example.  You can also send scrap paper and instructions with how to make these as a group activity too.  Directions are on Pinterest. 

Window markers are also fun and easy to clean up when the week is over.  Everyone in the cabin can take turns personalizing their cabin space.  This is stain-free fun too.  No damage to the cabin or the kids. 

Useful items work well too.  My youngest had her eyes on beautiful rhinestone studded swim goggles for weeks.  Without her knowing, I was able to pick up a pair for herself and for her sister's surprise box.  I know this will get used well beyond camp time and while it was a bit of splurge, it is also going to be well loved. 

Other silly and fun items for the group to enjoy include things like glow bracelets, glow necklaces, flower leis, bandannas, face paint or something like this hot pink temporary hair spray.  This can be used by all of the girls and will wash out in the lake at swimming time or in the showers before bed.  More fun for all. 

I also include postcards which are pre-addressed and stamped for mailing to home.  To make it even more fun, I added a silly crayola scented pen.  We also had some leftover party favors that included mini note-pads, perfect for playing tic-tac-toe or writing notes between bunk beds and also, two more pens to share with cabin mates. 

Nothing fancy or expensive, but a deck of cards is the ultimate camp toy.  The kids will play all sorts of games such as go fish, spoons, war, etc..  Everyone can join in on the fun too. 

At night, it is also nice to have a quiet toy.  This works for my youngest daughter especially.  She will smoosh and toss this little guy in her bed until she is ready for sleep.  It also works to have something to hold onto for site changes on her insulin pump.  Although at camp, she tends to be more brave and confident in her care.  It is camp magic! 

I do tuck in a love note from home and a few other goodies like nail polish and magazines.  A good book is also a favorite. 

Here is the completed box.  Next, I will wrap this up in plain brown paper and address to my daughter's name and cabin.  A special tip is that if you are going to the camp, you can drop this off at the office and avoid any postal fees.  Just be sure to add the day that you want it delivered.  I tend to ask for Tuesday as it seems like a great time in the middle of the camp experience (Sunday is drop off day for us) and I want the girls to be able to have time to use the items that I packed. 

Here is the finished product.  Just six more days until camp.  Now, to get busy on packing!

Happy diabetes camp week!