Hope

​Hope is something I have been lacking recently and just feeling diabetes burnout and going through the motions.  A successful day of diabetes is just surviving.  Recently we attended the friends for life conference in Canada and a gentleman by the name of Andrew Deutscher talked about type 1 diabetes and those "thriving" instead of just "surviving". I want us to be that. 

We just attended the JDRF gala this past weekend. I heard words such as "hope". There was so much inspiration. People were so generously donating money to help my child and all other type 1 diabetics. I am inspired and completely grateful for all who gave and supported this wonderful cause.  I sometimes forget about the hope I saw at Friends for life Orlando, when I saw my little 8 year old hold the  bionic pancreas prototype in her hands. The sparkle in her eyes when she realized what this could mean for her. She was holding hope in her hands. The future of diabetes. I remember it, but it still sits in the back of my mind sometimes, buried beneath  all the other things that cross my mind each day. That was hope. A cure is coming, a chance for her to experience life without worrying her number one fear....."will there be a cure for type 1 diabetes?". Yes folks, this is what my 9 year old worries about.
I'm a diabetes mom and my daughter needs a cure. The stress is real, the mental health needs are real, the daily struggles are real. The worry for me as a mom of worrying if my child will wake up in the morning is real. We worry, we stress, and we cry.
I'm tired of just "surviving". Im tired of just going through the motions.
As I think of the times I have had to force feed my daughter sugar or juice at 2am, or see her struggle through the horrible feelings of a low blood sugar, I vow to not lose hope. There are amazing people fighting for a cure and are working so hard to find one. Hannah needs a cure, but until that happens, I will fight with her, hope for her, and pray for her.
The cure.. its coming.

Catching up.....

I looked back and realized I have not posted an entry since September!! Its been a roller coaster of a year for us. We have been super busy with everything life throws at you. Now that the school year is almost over, I have had some time to reflect on the past year. Hannah has grown so much and has matured incredibly in the diabetes world. Her coping skills in dealing with this disease has continued to amaze me everyday. Hannah was blessed back in the fall with an incredible gift from the Dream Factory. A dream trip to the big apple and to shop at the American Girl Store! It was an amazing weekend filled with lots of memories, I am still blown away at the generosity and it gives me hope for the world we live in.

 Hannah has taken up a new activity this year.. Irish dancing! She is absolutely in love with this and I see great things coming from her in the future. Her blood sugars tank during her hour class but we just correct it and move on. 

We just received her Dexcom continuous glucose monitor. This measures her blood sugar every 5 minutes and gives us trend graphs as to how she is doing, which allows us to gain tighter control  over her numbers and in turn have better A1C's long term. It also allows mom and dad to have some peace of mind not just during the day, but at night as well. We sleep better knowing her dexcom will alarm if she should fall to a dangerous level.

We just wrapped up a great JDRF walk. Hannah's team raised around $500 in all. We had about 30 walkers . We are so thankful for everyone who donated and came out in support of us. So much of this disease is being surrounded by people who support us and love us, even more so for Hannah who really needs to see that. Diabetes takes a huge toll on the family emotionally, and even though we may look like we are doing okay, we always have that need to see the support.
We have met some incredible people this year in the diabetes world. We have made some new friends with people who "get it."

Our biggest excitement coming up is that we will be attending the 2015 Children with Diabetes Friends for life conference this July. Its a conference where type 1 diabetics and their families from all around the country come to meet, make friends, and learn the latest and greatest There will be diabetic educators from all over coming and presenting on topics ranging from how to carb count to raising a tween with type 1 diabetes, There are age appropriate groups for the children. Hannah will be with kids her age and have fun just being a kid but being able to see that she is not alone in this battle. It also just so happens to be held at Disney. We are so excited and have heard that this is a life changing experience for a type 1 family. I will be posting of our experience after we return home. 

Irish dancing

Hannah's JDRF walk team shirts

Dexcom has arrived!

Our team :)

Insulin pump!!!

So we waited 6 months.... 6 months of 5 injections of insulin a day. Now we are down to 1 stick every 3 days. The insulin pump has been awesome! It definitely has its perks. We are still learning so much about it but so far we are doing great. Hannah has had it a week and already knows how to use it independently. The site changes have been a little challenging but each time gets a little better. I think Hannah feels a little more in control as well. She has something that SHE can use to help control her diabetes. She has taken the reins and we are so excited for her! The down side though is more supplies. Type 1 diabetes is not a cheap disease. Im sure if you were to add up the cost over 20 years and it has to be in the millions. More reason to support the JDRF and help them find a cure!!!!!

Hannah on the first day of getting her insulin pump

9/5/2014

First day of school!

So, the first day of second grade has come and gone. I was glad I had to work part of the day yesterday. If I hadn't, my nerves would have been shot. Overall, everything went great. Blood sugars stayed in range and she ended the day with a thumbs up. I was pleased. The nervousness I felt, however, I think was normal. Putting your trust completely in a stranger to make sure she knows when Hannah needs to see  the nurse is a lot of responsibility. I had to relinquish a lot of control but in the end it was okay and my baby came home safe. Here are a few pics from her first day

Trusting in others....a new school year

I dread the beginning of school every year but this year I have been more overwhelmed then usual.When Hannah was diagnosed back in February, we had amazing support from her 1st grade teacher. She got comfortable with Hannah and knew when there was something off with her. She was someone that I got very comfortable with as far as trusting her, but then again, she KNEW Hannah.  Fast forward to now... We are starting the school year with a new teacher, one who doesn't know Hannah's personality or when things may be "off." She isn't familiar with how we do things. Yes I know that she will learn and it will take time but I am putting my trust in a complete stranger that isn't familiar with my child or this disease. We had open house yesterday and I found myself to be very emotional. This year is very difficult for me and I have a lot of emotions going on. I know the school nurse will take great care of her, as always but I am very apprehensive. We met with her new teacher, the nurse and the principal to go over things. Its not the specific teacher that is the issue. I believe that any new teacher I would be feeling this fear, and I will relive this feeling every single new school year. I dread that. I am struggling with holding on but letting go just the right amount for Hannah. She is a very independent little girl but this is still new and we are learning. In the next 2 weeks Hannah will have a new class, new teacher, new schedule, and will transition from daily multiple injections to an insulin pump attached to her 24 hours a day. It will be a learning experience for us all. Please pray for us as we venture into new waters. I pray that I have the strength to make it through and trust in those caring for my precious gift.

end of summer

Sigh....... this is the part of summer i hate.. I hate sending Hannah back to school. I guess its bitter sweet. I absolutely LOVE my time with her home but we have absolutely no schedule, no routine, no consistency. Bedtime most evenings has been midnight and we sleep in until 10 or 11am. Its been lovely, but parts of me yearn for the routine that fall brings..... So much excitement brewing in our house as we await the arrival of Hannah's insulin pump. We are now down to just a few days and we should have it and the thought of no more injections is music to all our ears. We will be spending this last week of summer vacation prepping for the new school year and a little R&R at the beach. We will be ending summer with a bang!!!!

Summer fun!

So we are about halfway through summer vacation. School starts in just under a month... I hate sending Hannah back to school. We have so much fun and I love having her home, just spending quiet time with her.August is already upon us and there is a lot of excitement brewing in our house. in 10 days, we get to submit all our paperwork to the insurance company for Hannah's insulin pump! August 12 is the date and we are super thrilled! Hoping that the insurance company doesn't drag their feet on this. Reducing the amount of insulin injections Hannah gets daily will be a huge plus!
 We have done a lot of swimming this summer, visited with family, and had lots of play dates with friends. We have a month to get more fun in before the craziness begins, yet again. Heres to more summer fun!