Tuesday, January 26, 2010

JDRF Family Retreat Week-end

Last Friday afternoon, I left with 4 of our children to attend the JDRF (Juvenile Diabetes Research Foundation) Family Retreat week-end.  It was just an hour from our home and the cost was quite a deal!  We stayed in the beautiful Grandover Resort

We arrived late afternoon after making a short stop at Target to buy snacks for the week -end for all of us.  First we signed in and registered for the classes we were interested in attending.  They had seminars for both children and adults.  I wasn't sure what Daniel would be interested in doing and honestly didn't really plan ahead well for him.  (Note to self:  take playdoh and wikki stix next year to keep him entertained quietly while sitting with me.) 

Then we checked into the hotel.  The boys enjoyed exploring the room.  The bathrobes and closet were both a lot of fun for them.  LOL

We ate dinner in a large ballroom.  I had not taken all of our diabetes supplies (like a scale and carb counting book) as I had been told that there would be carb counts there.  There was a list, but it was not complete, so I found myself guessing at some things.  I also asked a couple of the moms around me for some help as we were all in the same boat.

During the dinner we listened to a speaker - the man who founded the website Children with Diabetes.  He talked about diabetes and things that made people more successful in managing it.  (One of the factors were people who checked in the middle of the night - we do.)  He talked about statistics and the improvements that have been made.  (The lifespan for a Type 1 diabetic used to be 15 years shorter and that has been cut in half and is shrinking even more with good managment!)  He was very interesting and Joshua listed this as one of his favorite things of the week-end.

After dinner, we explored the hotel a little more.  We went to the game room and enjoyed some foosball.

We went by the pool, but it was VERY crowded and most of the kids (all but one) wanted to pass on going in.  So we went up to the room and watched some of America's Funniest Home Videos and then went to sleep.  Rebecca and I worked on our Bible study before finally going to sleep too.

The morning started early with a loud alarm (that amazingly only woke up some of us as we tried to figure out how to cut it off).  We went to breakfast.  All of the meals were served buffet style which is nice.  We ate in the same large ballroom.  We shared a table on Fri night with a family that arrived just prior to the speaker starting so we didn't get to talk.  We shared breakfast with a family that was reading the newspaper - so again, no conversation. 

There were two morning seminars.  Rebecca graciously agreed to give up going to some of the teen sessions in order to help Daniel.  For the first seminar, Joshua and Isaiah went into a kids session together.  They played some games and seemed to have a good time.  Rebecca, Daniel and I went to a session put on by The Diabetic Chef.  It was set up like a cooking show and was a lot of fun to watch.  (Rebecca and I both enjoy watching the cooking channel, but don't get to do it often as we dont' have cable.) 

His goals were to create healthy foods that also really tasted good.  He was trained as a chef - and found out he was a Type 1 diabetic during this training.  He has several cookbooks out and we bought both of them.  I'm looking forward to trying some things out!  We spent some time talking with he and his wife at the end of the day and they were both super nice.  You can check out his website by clicking on his name above.   

For the second session of the morning, Rebecca went into a young child's room with Daniel while I went to a seminar on adherance.  Yeah, I wasn't really sure what it would be on either.  She talked about ways to help your children stay the course of managing their diabetes.  Some of the information was really good and some if it I didn't necessarily agree with either - but know that is because I approach life from a different view than some people (in terms of relationships with children).  One of the statistics that she gave I found very interesting.  She said that 40 percent of parents have symptoms of Post Traumatic Stress Disorder at diagnosis of a child with diabetes.  She said that there was no other chronic illness were this was also true.  In some ways, a sad thing to hear.  in other ways, really validating of how very stressful this disease is to people.

Next was lunch.  We put our things down at a table and went to get our food.  When we returned, we found a family sharing our table and this time we were able to talk.  Turned out that they lived in the same city and also had a boy Joshua's age with Type 1.  I told them we hadn't met anyone yet (boy Joshua's age) and was excited to talk with them.  We had a good conversation with them (they even knew the surgeon that operated on Eliana's heart), but no further contact. 

After lunch, Joshua told me that he didn't want to go to the kids sessions anymore.  Isaiah went without him and Joshua came with me.  We attended a meeting of people from our area of the state.  They talked about a variety of topics, but something I heard a lot of was that people felt disconnected and so did their children.  This mirrors our experience too.  There is a mentor program set up through JDRF which we have tried several times to get involved in and have just fallen through the cracks - repeatedly.  I'll keep trying though. 

The last session was one on research for me and an active/exercise one for all of the children.  I only stayed through part of it because a worker brought Joshua to me saying he felt low.  They had not checked him (because I had his kit), but had given him a juice box.  We decided to leave the session and go talk to some of the pump representatives.  This was a good time to try out the pumps (pushing the buttons) and see how they worked.  All the reps were really nice and gave us good info.

It seems that *everyone* is on the pump.  We saw lots of pumps this week-end and I never saw anyone giving shots (though I'm sure there were others there too).  Joshua is getting more interested and excited about getting on the pump and we'll follow up with that now.

That was the end of the day.  We arrived home in time for dinner.  It was a fun trip and we got some good information.  I wish we had been able to connect with a family that we could have had more contact with once we got home.  Perhaps that will come with time too.  Or maybe, like me, Joshua can find a friend that he can talk with online instead of in person.  We'll see.  I know God has good plans for us.



PS  If you haven't yet - please check out the giveaway on the post just below this one!  Thank you to those who have donated via chip-in and also through sending a check.  Please remember to let me know if you are sending a check so I can add you to the drawing.