1 year anniversary

Today is Nathanael's one year anniversary since diagnosis of diabetes. The diagnosis came completely out of left field. This past year we have learned so much about how our body functions.

The biggest lesson I've learned this past year is how much we take our bodies for granted. We learned how to count carbs, check blood sugars, and give shots. We have also learned that diabetes doesn't play fair. What works one day may not work the next. We have learned that there are some foods that Nathanael just can't eat. No matter how accurate we measure and take either the right amount of insulin or even more, his sugar still goes really high.

We can't just run out of the house without having supplies. We need to be prepared for anything. Nathanael needs to always have his pack that includes a tester, insulin, swabs, needles, water & glucose drinks for lows.

I don't limit Nathanael's food. He is a growing boy. He takes anywhere from 45-60 units of fast acting insulin a day. Then at night he takes 35 units of long acting insulin.

Monday we meet with our diabetes educator. Nathanael was given a pump by some very generous people. We are going to see if it will work for him. He is very excited. I am too. I hope we can stop chasing sugars and find another new normal.
This next year we will continue to learn about diabetes. In fact, we learn something  everyday.

Sense of Entitlement

    Why is it that we live in a world where people feel that they are owed?  Lately I’ve been reading posts on a Facebook group that I belong to about how people get special passes at Disney World or Disney Land for their kids who have T1D.  I find this very strange.  I try my best to make sure my son is treated as normal as possible.  After all, he is still 13 and last time I looked perfectly normal it’s his pancreas that is broke.  His only problem is that he has diabetes.  He does anything and everything that normal 13 year old boys do.  He loves to play video games.  He is good at sports, enjoys being around his friends. 

There are lots of groups that I belong to say be a kid first and diabetes second.  So why do parents feel that their children are entitled to get in front of a line while at an amusement park?  To me that is sending the wrong message.  I am all for making sure my child has his rights as a person with a chronic illness/disability but to be able to go to the front of the line while at an amusement park?  Really? Why not be prepared with water for highs and snack for lows?  Where I come from going to an amusement park is a privilege, a very cool vacation for families.  

Children with T1D are able to have a 504 plan filled out and on file with their schools to make sure they have certain rights while in school.  “A "504 plan" refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or post secondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.” There are certainly some privileges that they need in order to stay healthy.  For example, they need to have open access to the restrooms, be able to have water at all times, and be able to have a snack when needed.  To me these are reasonable accommodations.  Some other accommodations that are reasonable when dealing with school aged children are allowing extra time to do homework.  This is one provision that I have struggled with asking for.  My son doesn’t like doing homework as it is, I’m not about to give him extra time to do work that he doesn’t want to do in the first place.  So we do the best we can.  There are times that his blood sugar is too high and he just can’t think so homework is done for the night.  If, and when that happens, he gets up early in the morning and gets his work completed before school.  On very rare occasions, I email his teachers and let them know that homework just didn't happen the night before.  I am very lucky to be in a school district where he does get some lenience.  But I am not about to give him a free ride.  He still needs to complete the work.  He has really learned with his diabetes that he needs to study.  His brain does not work the same.  I feel that by giving out children too many allowances, they will not learn to live in the real world when they grow up and are adults. 

I’m trying to teach my son to be responsible and sometimes diabetes gets in the way.  There is a time and place to use “I have diabetes” trying to get in front of a line at an amusement park, to me, is not one of those times.  We, parents of children with T1D, should be teaching our children how to manage their diseases, not how to get a free ride.  We should also not be teaching them that the world owes us because we have a chronic illness.  It isn't the world's fault that their pancreas quit on them.  So teach them how to deal with it and move on.