JDRF Retreat and a great week-end!

We had a wonderful week-end!  I hope you did too.  We were going in different directions for some of it and then all gathered together again.  Here's a look at some of what was going on.  Joshua and I left on Friday to go to Greensboro for the 2nd Annual JDRF Family Retreat.  

I had thought more of us would go, but it worked out to be just us.  And we had a great time.  As did the others.  Daniel and Isaiah went to a friend's fun birthday party.  Eliana, Rebecca and Roger watched Tangled and laughed together.  Rebecca had her first guitar lesson in a beginner's Praise class at church.    All fun.

Joshua and I arrived at the Grandover Hotel on Friday afternoon.  We listened to Adventures in Odyssey cds on the way there and just talked.  He was unsure about whether this would be a fun outing and I assured him that it would be a blast!  We checked into the hotel.  What a NICE hotel!!!

We got registered for a the sessions we would be attending.  Joshua was thrilled to have been included in the teen group.  They worked on making a film which was a lot of fun.  They also had a seminar on the various research that was being done in the search for a cure.  He was quite interested in all that was being explored.  (I had a session on the same topic later and it is fascinating!)

We explored the hotel and played some Bananagrams before heading down to supper.  

This year instead of having everyone in one big room, they had us divided into the three regions of the state  - all meeting in different rooms.  We  headed to the "Triangle" room and then found that each table also had a label indicating a city or county.  It was a search to find ours.  There were several with Durham on it and we chose one and sat down.  We were with 2 other families that lived in the northern part of our city.  It was a nice dinner talking with and getting to know them.  One of the families we ended up being friends with and ate all of our meals together and just enjoyed hanging out.  Their daughter with T1 (Juvenile diabetes) also has celiac so we had a lot in common.  Our meal was a mexican bar which was both diabetic and celiac friendly!

At the end of the meal, we were told to look under our chairs to see if there was a sticker.  There was one  under mine which I handed to Joshua so that he could go claim a prize.  It was this neat backpack with a sleeping bag inside.  There was also a flashlight which you shake to power it up, a small fan with messages on the blades and a calculator.  It was a neat prize!

After dinner, there was an ice cream social and magic show.  The  crowd was HUGE!  They didn't anticipate so many people and ended up doing a second showing.  We waited in line and saw all of the magic show while we were in line.  We then took our ice cream to a cozy spot in the lobby area and ate it and talked.  

After our dessert, we went to check out the game room.  It was full and busy so we decided to go back to our room.  We played some more Bananagrams, had a devotion together, talked and then got some sleep.  We had an early morning because Joshua wanted to be at breakfast at 7am when it opened.   

This is a picture that we tried to take of the bar area and ourselves.  We are mostly covered by the flash.  LOL

 Lots of scenes like this throughout the day.  Its nice to be somewhere and have all of it be something the everyone understands.  This is a tough disease.  One of the presenters that I listened too stated that it was the most challenging of all the autoimmune diseases.  It is a challenge.  I'm so very thankful for all of the advances that have been made that make it so much more manageable!

 At all of our meals, there was a listing of the foods with both a carb count and also stating whether an item was gluten free or not.  I appreciate the sensitivity to both of these diseases!  (For those who don't know there is a higher rate of Celiac disease among those with Type 1 diabetes than is in the general population.)

 I attended a workshops on managing diabetes during times of stress - sickness and athletics.  Excellent information.  I also attending one on life with teens and diabetes.  Again, good information on how to better communicate and help manage this disease on top of hormones and other changes.  The next session I attended was on Celiac disease.  And the final one on the most up to date info on research being done.  All were helpful and informative!  I'm glad we had the opportunity to go!

We did get in some game time too.  A little after breakfast and more at the end of the day.

 We headed home late in the afternoon after visiting a little bit with a local friend who came by.  Joshua loves these revolving doors!  He also thanked me for taking him and said that he had a great time!  I did too.  I loved having one on one time to spend with him.  I am also thankful for the information we both learned and hope it will help us both to better understand and manage his diabetes.  I think it is a blessing to be at this type of event for so many reasons and I'm thankful to JDRF for all that they do to make this a reality!

We headed home and were looking forward to seeing Christopher and his roommate later that evening.  While on our way, we found out that he was coming by with 4 friends and it would be close to dinner time.  Of course, we were happy to have them!  My sweet dh and daughter worked to get things ready and I helped when I got home.

What a treat to have Christopher and his friends here!  We loved getting to know some of his friends that we hadn't met and of course spending time with his roommate that we already love hanging out with.  We laughed and played and had a great time.  As soon as they left, my kids were asking when they could come back again!  I agree.  We would love to have them all again soon!

Sunday we spent our morning at church listening to a wonderful sermon.  I hosted a Reading Games activity bag swap in the afternoon and then we headed to Awana in the evening.  Busy, but fun day.

All in all, the week-end was wonderful!  God was good to allow us to make friends with some people facing both Diabetes and celiac that live close to us.  We are hoping to get together again too.  God was gracious to allow us to have Christopher and his friends over for several hours to eat, hang out and laugh ... a LOT.

I am thankful and blessed!
Leslie

JDRF Walk

I'm still learning how to use my new computer.  I have posts from the last few days which are waiting on uploaded pictures.  We celebrated a wonderful Thanksgiving with my family - in a new location.  New traditions and memories and yet still wonderful times being with those we love.  We also celebrated a special birthday!!!  More details to come on a Sweet 16!

For now, I'll play a little catch up.  For any that have been here awhile, you know that one of our sons has Type 1 diabetes.  He was diagnosed when he was 9 years old.  I feel fortunate that we caught it when we did and that we live in a time and an area in which we have access to great information and medical care.

I'll be honest though - its still hard.  Type 1, formerly called Juvenile Diabetes, is an auto-immune disease which strikes primarily children.  They did nothing to cause this disease and they could have done nothing to prevent this disease from striking.  It is not reversible.  It is not possible to live without insulin.  It is not curable. . . YET.

It is a disease that never takes a break.  All those times that you just pick up food or want a snack and don't think twice about it.  Its just not an option when you are diabetic.  Finger sticks multiple times a day are a reality.  Callouses and marks cover his fingers and abdomen from so many stick for blood draws and his pump site.  

Adding in prepuberty also puts a whole new spin on things.  I've read that it is hard.  I am watching it and all that I've read is true.  His numbers can still be so erratic and from so many different variables.  We are all doing our best to "manage" his diabetes but there are times when it just doesn't seem like enough.  We have recently made more changes to his insulin rates and are seeing better numbers.  

Its the lows that really scare me.  Sometimes he recognizes them, but other times it is just a surprise.  Like this one. 

That wasn't the worst one though.  And it scares me.  I'm thankful that he has always pulled out of his lows pretty easily and quickly.  Thank you God.

For all that we have experienced and for the many, many others who are living this reality too - we spend one morning a year hoping to raise awareness and money in the Walk for the Cure!

This year, the weather was awful and our team was small.  The walk had about 3000+ in attendance.  (Maybe half of last years.)  I'm glad we were able to go and thankfully the rain mostly held off!

There were various booths that we visited before the walk.  Hair painting.

Moes was giving out free samples and t-shirts too.

And then the walk began.  I think it was a little longer this year than last.

We are thankful for friends who support us on this journey.  So many who have taken time to learn about this disease, cook foods that are helpful, encourage us and even walk with us.  Support comes in many forms and I'm thankful for all of them!

We enjoyed lunch after the walk.

We had fun despite the weather.

Being with friends always makes things better!

We picked up some extra food at the end of the event.  I wanted to take a gluten free sandwich home for Eliana (I loved that they had this option!).  Did you know that 10 percent of Type 1s also develop Celiac disease.  As it was nearing the end of the day, they suggested that I take an entire bag of sandwiches!  Soon after, Roger also found that they were giving away the regular sandwiches too and got a box of them.

It made for an easy supper for us - and for a great treat for my oldest son and his suitemates/friends.  :-)

At the end of the day, I'm glad we were able to do something positive.  I'm thankful for JDRF and its tireless efforts in working to find a cure for diabetes.  I hope and pray that one day there will be a cure.  I'm also thankful for the assurance of a life in heaven where there is no sickness and disease.

He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.  Revelation 21:4

Thank you for the encouragement that so many of you have offered me over the last few years as we have walked this path.  It isn't one that I would have chosen, but I trust that God will use it for good.

Blessings

Leslie

Looking back ... a few things

I've been busy and keep meaning to figure things out on this new computer.  I think its going to take me a little while to get it sorted out so that I can do the things that I want to do on it.  Christopher did help me out with some things when he was here and I think I'm just going to need some lessons on it for awhile.  :-)

For those who use a Mac, I would love any tips or help you have to offer.  This is my first time on a Mac.  I'm especially interested in anything to do with photos.  Here is our  new computer.  I'm very excited about it and learning to use it!

We've had several medical appointments that I haven't shared about.  Eliana had her yearly cardiology appointment.  It was a long, long morning.  We went on Oct 31st and there were so many nice things set up at the hospital.  There were stations set up for the children and she visited one and got a new beanie baby which she loves.  She wasn't up for anything else.

She started fussing at vitals.  By the time we made it to the EKG, she was crying and screaming!  Next was the echo and she was inconsolable!!!  They pulled out all of their tricks - movie, bubbles, puppets, twirling lights - nothing helped.  I was even laying beside her on the bed and she just  cried and cried.  No reassurances helped.  : -(  It was hard.

Our last stop was to see the cardiologist.  We got into the exam room and as I was starting to get some things out for her.  She threw up.  Again.  And again.  Really did a number on the floor.  Ugh and yuck!  She thankfully mostly got the floor and not herself!  I cleaned it all up.  Didn't seem right to have someone else do it.  Though I did tell them after I cleaned it so that it could be mopped up again.  (She didn't get sick again.  Just so worked up from all of the crying.)

Anyway, as you can imagine by this time Eliana was less than thrilled to be touched by anyone!  Our Dr did manage a short exam and said that all looked the same.  She still has leaking at one of her valves (result of the surgery).  It isn't a problem at this point!  Thank you God.  The harder news is that we don't know if this will remain true.  It will depend on how her heart grows and how things around the valve are stretched.  She may need another heart surgery down the road.  I really didn't want to know that.  At this point though, I'm not going to worry about it as that won't help at all.  Just one more possibility of things to come - but hopefully not!

Joshua also had an appt at the diabetes clinic in the hospital.  His numbers have gotten bad and we are still working to try to get him in a better place.  We've made some adjustments that hopefully will help and give us more information on how his body is managing things.  Entering puberty though is already doing a number on him and from all that I hear, this will not change anytime soon.  So far, we are still seeing horrible highs and additionally lows in the middle of the night.  Still hoping and praying that we can him to a better and more stable place.

Also this week, I've watched friends walk through a very sad and tragic experience.  Its hard for me to even share this as words just seem inadequate.  Some sweet friends were excitedly waiting for the birth of their fourth child.  Their beautiful daughter was born late one evening on earth and soon after was born into heaven.  The grief and shock is unimaginable.  My heart just aches for them.

As I have been with them though, I see a strength and peace in the midst of the grief that I know comes from a deep faith in a God who loves them completely.  I'm encouraged by their faith while I grieve the pain and loss that this precious family is experiencing.

I wish I had words to make things better.  I know that all I can do is love on them - listen  - and be there for them.  Please pray for my friends as they walk this path which is not the joyful one for which they had been excitedly preparing.  Please pray for their family and friends.  Thank you.

With love
Leslie

Surprises?

This has been a full week.  A week with laughter and also tears.  A week of joys and also disappointments.  Highs and lows.  Sweet times and times that weigh my heart.  As I look back - and there is so much more I want to share - I can't help but remember that none of this was a surprise to God.  He saw it all coming.  The good and the bad.  And through it all, He is with me.

We started the week with a road trip ... to Ikea.  Some of you are already smiling, aren't you?  I have never been to this store and have wanted to go.  We sold some of the furniture in our dining room and with the money I wanted to buy some new furniture to make the room more functional for us as a school room.  I looked around online and found just what I wanted at Ikea.  So, road trip it was!

We headed out early on Monday with some friends and hit the store.

 What a neat store!  I loved the child-sized sinks in the bathrooms.

 This is a fun (and dangerous) place!  So many neat things to see.   It was a fun surprise to run into two of the pastor/leaders from our church while we were there too.  The kids were great about looking around and playing in the children's area while I tried to make decisions about our shelving.  Eliana liked the beds.

It would be so much fun to decorate her room with things from here!

 We had a yummy lunch (and enjoyed the kids eat free special!).  Made decisions and then headed home.  The kids watched a movie.  Does it crack you up that the head needed to go on over the headphones?

 And enjoyed a gluten free frosty!

This was a fun day all the way around!

The next day was a hard day.  Several people having a hard time with the transitions.  Tears.  Not what I expected and found I needed to do more planning.  Probably too more talking.  Definitely more praying.  Change is often hardest on the ones "left behind" where things are new and fun and exciting - but rather similar and lacking someone.

For those wondering, Christopher is doing great in college.  Already turned in his first paper & project.  He is having fun and adjusting beautifully.  :-)

Wednesday.  I had prepared better for this day and it went much smoother.  This was our official first day of school and I'll write more on that later.  It was a low-key first day which is nice.  This was a sweet time.

Joshua and I spent several hours in the afternoon at the hospital.  Based on some tested done earlier this summer, it looks like Joshua may be having some complications with his diabetes.  :-(  Joshua really took the news in stride.  It was hard for me to hear that he may be having complications.  I was thinking really?  Already?  He is still in his honeymoon.  More testing.  I'm not sure when we'll have the results.  If they come back better, we won't have to make changes.  If the numbers are still high, he will be placed on a new medication - for life.  I know its not huge in a lot of ways, but it is still one more thing that I wish he didn't have to deal with.  This on top of all that he already has.  I have to remind myself that God can use this for both of us - to shape our hearts and make us more like Him.

His numbers aren't where they should be either and we are working hard to get it under better control.  I have to confess that this makes me feel like I've failed.  Guilt.  Something I know that I need to give up, but its hard not to feel it sometimes.  It was a challenging appointment.  We have some strategies though.  We will be testing various things to get a better read on his numbers.  I'm hoping and praying that this will help.  I need to do a better job staying on top of this.  I want to help him have better control (as much as we can have control).  We would love prayers as we work to better manage this.

Joshua and I made a quick visit to Christopher.  It was short, but still fun to see him on his first day of classes.

Today we had our first field trip with our FIAR group.  A park play day!  It was beautiful and we had a gal come talk with our group about butterflies.  It was a fun morning.  I love being a part of this group and am so thankful for it!  (More pics soon)

In the afternoon, I met a cyber friend.  She and her family came over to visit.  What a fun time we had talking and the kids playing.  I'm blessed to have sweet friends IRL and also via the internet!  I'm thankful for God's blessing of friends.  Friends have helped in so many ways - especially over the last 5 years as we have faced a number of different challenges.  I know that God knew those were coming and gave me the gift of friends to help walk the rocky paths.

One last prayer request and then I need to go to sleep.  Eliana needs to go in soon for x-rays for atlantoaxial instability (AAI).  Given her aversion to medical personnel and procedures, I'm not expecting this to be easy.  It needs to be done though and I need to just get it over with.  I would love prayers that it would be a smooth and easy procedure - with good results and no surprises.  I really don't want anything else to deal with or learn about on the medical front right now.  I do know that if this is a part of our future that God will walk with us, teach us and guide us.

Laughter and tears.  Joy and sadness.  Its all part of life.  Experiencing that hard times helps make us thankful for the good times.  It also helps us to empathize with others and to be able to offer help and support.  I can see good coming from the hard.

In looking over our week, I'm thankful.  I have so much to be thankful for!  God is good!

Blessings
Leslie

JDRF Egg Hunt

Well, this will give a great big clue on how behind I am in posting pictures!  LOL

Our local JDRF group sponsors an egg hunt each year - a sugar-free egg hunt!  (The eggs include things like playdoh, chalk eggs, small toys, bubbles and jewelry.)  It was a beautiful day and lots of fun was had!  Little Miss Independent was ready to go even before it was time!

 There were things to keep the children entertained before the hunt - face painting, decorating bags, chalk and bubbles.  My crew always enjoys the big bubble wands!

 I'm thankful for this group and their efforts on behalf of our kids.  This egg hunt is a small thing in a lot of ways, but for a child with diabetes, these "candy event's can be a challenge.  It can be just one more thing that is hard.  It is really a nice alternative and also a fun time to connect with some other families.  We enjoyed seeing some friends there.

 So many kids were afraid of the Easter Bunny.  Eliana took a little time to warm up to him, but soon was giving him high fives.  

 She even shared her eggs with him.

Trying to get a good group shot.  Smiles are clearly optional.

 The balloon swords are always a hit with my boys.  Always ready for a sword fight!

It's nice for them to be able to enjoy this event and not have to worry about the sugar causing spikes.  They even had some low carb juice boxes!

Thanks JDRF for a fun afternoon!

Blessings
Leslie

JDRF Walk

Our local Walk for the Cure was held the last week-end in October.  This was our second year attending and this year we asked friends to join us.  I wasn't really sure what to expect - and was thrilled when people came with us.  It blesses me greatly to see that people care about this our family, our precious son Joshua and finding a cure for this disease!  (Yes, I teared up with each walker and each donation.  It really does bless me!)  This disease is relentless and you can never, never take a break from it.  I'm thankful for the unceasing work of the JDRF in trying to find a cure!

A friend asked me recently how did I handle it when people close to you didn't seem to care about the same causes that you did.  I told her that *for me* I try to have no expectations of others - and then everything - everything - is a blessing!  I'm truly thankful for the support we received.  It's a hard thing for me to ask for money and I didn't really get the word out as well as I probably could have.  (Several people asked why we didn't tell them about it.  I guess I just don't want to be a pest, kwim?)  It is for a good cause and finding a cure would be an amazing thing for many, many people.

Our day started early.  Last year we were stuck in awful traffic so we decided to try to beat the crowd this year.  We succeeded.  We also went in a "back way" thanks to a friend which was also a great tip!  We caravanned in with most of our team so we wouldn't struggle in finding each other.  (The crowd was about 7000 strong.)  We parked and then headed in.  The day started out chilly, but warmed up nicely.



We bought t-shirts this year which was really fun.  Seeing so many of our friends sporting the shirt just warmed my heart.  (Yes, teary.  It happens a lot when I'm feeling blessed.)  This is our team!  If you want to join us next year, we'd love to have you on our team too!



We had time to spend checking out some of the activities.  Next year, I think getting there even earlier and participating in some of the games and other booths would be a fun thing to do!  I spent time following these two little cuties around.



The girls found a booth where they could spray paint color and/or glitter into their hair.  They thought this was great fun.  (And the fun continued at home the next day!)



I'm not a detail person, but I love seeing someone else's attention to them.  These logo painted on the path was a fun addition to the walk.



There was popcorn and water given out along the route.  It isn't a long walk - either 2 or 2.5 miles.



It is a crowded walk however.



Sometimes it is fun to find your own path.



Friends are fun and make the days sweet!



After the walk, we were all treated to lunch provided by Jersey Mikes!  We ate in the amphitheatre which was a great lunch spot with tables and chairs.





There was also really delicious bananas which they were giving away at the end of the event.  We were happy to help take some home.



There were other activities to be enjoyed, but we didn't make it to many of them.



That's alright though as we all had fun just being together - and kids can have fun just about anywhere!



Soon it was time to head home.



My motivation to walk is this incredible young man.  He has endured a lot over the last year and half - pokes too many to count (at least 5 per day and sometimes 10), shots, site changes, medical procedures and the constant couting of carbs.  I pray that he will learn from this hardship - that he will learn empathy for others, grace to handle trials and strength to endure.  I pray that he would learn to lean on God for all of this.  I pray too for a cure.  No more needles.  No more pokes.  No more insulin.  No more watching every. single. bite. you put into your mouth.



Joshua, I love you and am proud of you.  I'm honored to be  your Mom and part of your team!

Thank you to our friends and family for your support.  We raised over $800 this year!  Thank you!

Blessings

Leslie