Join me in the fight to cure, better treat and prevent type 1 diabetes!
***For those of you who have asked, the boys’ diagnosis stories (Our JDRF fundraising letter from last year), are listed at the bottom of this year’s letter.
This past year has been chaotic, educational, emotional but most of all, it’s been a surprisingly manageable year. We have had real success in learning everything we can to better care for our boys. We have been so incredibly fortunate to have become part of an amazing community of parents who also have T1 Diabetic children. We have adapted to the daily schedule of blood sugar testing (finger pricks), food corrections (giving medicine through their insulin pumps after eating), infusion site changes (meaning reinserting their infusion sets, which is what carries insulin from the insulin pump to the body) after every bath, and have become mathematical wizards who make lots of educational guesses regarding carb counting. (Think: trying to figure out how many carbs your 2 year old actually ate vs. threw in his brother’s hair, smooshed down the heating vent, stole from his brother’s plate, etc.)
Our boys are doing awesome! They are completely oblivious to the fact that this isn’t everyone’s normal and are happy, smiley, healthy little boys. I am so grateful for that. They do not know anything different. When it’s time to prick their finger, they stick out their hands and say “test, test” with a smile. Their older brother, Liam (3) likes to “help” and will read the numbers for me on the tester each time we test. I hope keeping him involved and having chats about “is that a high number or a low number” will help him learn to watch out for his brothers and help make him feel a part of it all. The twins just turned 2 years old so they aren’t able to communicate if their blood sugar is feeling high or low so we feel most comfortable sticking with the same plan of finger pricks every three hours. Thankfully, Jon and I make a good team with the overnight testing which makes everything a little more manageable!
All of this doesn’t mean it’s been a perfect year. There have been some challenges and scary situations but as a whole, we have been so lucky to have had a great year! We have learned what works best and what doesn’t work at all. I’ve also found gratitude for JDRF not only in the fight to change Type 1 to Type None, but also for the education and resources they provide that are so crucial for my boys. We have had a few of the expected diabetic remarks from people who just aren’t educated on the difference between T1 and T2 and it has truly challenged me on how to address them. In my past, I have kept quiet and typically hidden that I have it because it’s just “easier”. I remember being told by a coworker at a job “the manager had diabetes so bad that he had to wear a machine just to keep him alive.” Instead of educating the person telling me this (and telling him I wear that same “machine”), I kept quiet because I didn’t want to be the person they were all swapping stories about. Since my boys’ diagnosis I see these comments so very differently. One of these situations was at my 3 year old’s preschool, in front of all the parents and I found myself unable to stay quiet. I needed them to understand that they couldn’t catch T1 diabetes from eating cupcakes and that Liam’s brothers were not going to die from eating sweets. I do not want my children thinking there was something they could have done, or something we, as their parents, could have done, to prevent them from getting T1 D. I need them to accept this as part of what builds their character, helps them become strong and confident people as well as more empathetic to others. Knowing that my kids are going to hear these comments, (God forbid, believe these comments!!), breaks my heart, but I hope that I can continue working on finding a better way to educate those around us, with resources like JDRF.
If you'd like to join us and walk for Team Lincoln & Leland, please let us know so that we can order your shirt. The walk is on February 22nd at the MOA. Registration begins at 7:30 and the walk starts at 8:30. Thank you so much for your support, whether in walking with us or donating for Lincoln & Leland’s 2014 JDRF Walk. We are all so grateful for your help in changing Type One to Type None!
On Halloween 2012, one day before our twins' first birthday, our lives flipped upside down. One of our twin boys, Lincoln, was diagnosed with Type 1 Diabetes (Juvenile diabetes). We were absolutely devastated, heartbroken, and scared. As most of you know, I was diagnosed with T1 Diabetes when I was 11 years old. We did our research and found that we had a 1 in 100 chance of passing it along to our children. I liked those odds and thought we could handle anything thrown at us. I did everything I could to reduce that risk even further (nursing all of my boys for a whole year, holding off on introducing solids, keeping all of my numbers in tight control, etc.). Anything that I read that said there might be a reduction in T1 Diabetes, I tried it. But, we found that none of that would make a difference for us. Lincoln was put on an insulin pump immediately and was out of the hospital in four days. Jon and I have adapted to the testing Lincoln's blood sugar (finger pricks) every three hours (all day and night), carrying juice everywhere, counting every morsel of food (carbs) he puts in his mouth (much harder than you think with 3 under 3 stealing food from each other!) inserting his infusion set every other day, monitoring his pump settings, uploading them for his doctors each week, packing everyone up for the constant stream of doctors’ visits, all the while, trying our best to keep him the happy, healthy, normal smiley boy that he is.
This week, one day after my son Liam's 3rd birthday, I noticed that Leland was drinking his sippy faster than usual. My heart sank when I tested him and found that he too, has T1 Diabetes. We repeated the same process with Leland that we just did 13 short weeks ago with Lincoln. He was also put on the pump and released from the hospital four days later. Since they are identical twins, we knew he had a 60% chance in getting it too but I was still so hopeful that maybe he could escape it.
It has been a tough year for our boys. Seeing your children go through something like this is indescribable. I know all the hard situations and scary scenarios the boys have to look forward to. I've been there and can only hope they are much better at educating those around them, instead of staying quiet or getting angry at people's lack of knowledge about the disease. I can only hope they are much better at handling the attention they are shown because of their disease, and instead of being embarrassed like I was, take it to move people to help find a cure. I also hope they take it seriously and take the best care of themselves possible so they lead a healthy, long, fulfilled life. Most children who get T1 Diabetes are in the 11-13 year old range so it is terrifying having two babies that cannot communicate if their blood sugar feels low or high, if they are feeling like they are going to pass out or be sick, etc. Jon and I have adapted to these paranoid, incredibly scheduled, worrisome parents and hope, that together, we can take the best care possible of our boys.
We are walking for our twins, Lincoln and Leland, but we are also walking for Liam. So far he does not show any indication that he will get T1 Diabetes and we are hopeful it will stay that way but if he does, we want to show them that there is progress being made, there is a cure being discovered, there are people who care. Thank you so much for taking the time to read our story and we hope that you can help us contribute to a cause very close to our hearts.