I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Thursday, March 24, 2011

Traveling "Light"

I have come to the conclusion that once you are diagnosed with Type 1 diabetes you are no longer able to travel light. Of course I base this on being the mom to a Type 1 kiddo and being married to one. But, let's face it...who really does the "packing" in life. If we represent most families I'd have to go with the answer: "The MOM!"

As we have traveled along life's road over the past not quite 1 and 1/2 years since Jess was diagnosed, and specifically in the four months since we have been lucky enough to have insulin pumps, I feel like I have gone back to the days with infant twins. Gone is the milestone we had finally arrived at where we could just throw a few things in the car and be off for the day. Wherever we travel these days, backpacks, coolers, and supplies follow. Now, anyone who knows me knows that I am the true girl scout who tries to "always be prepared." So, I am not saying everyone should or does live the way I do. But, needless to say I think most Type 1's would agree---there is a lot of sh*t to travel with!

Example A: Jess started at a new school. Courtney started at a new school as well. We got Courtney a few school supplies, gave her a kiss on the forehead and wished her luck. For Jessica, we met with the nurse. We met with the teacher. We talked with the principle. We met with the cafeteria manager. We made up a sub form with a picture of Jess and all of her information in case there was an unexpected substitute teacher, we made sure the bus driver knew she had Type 1 and could eat on the bus, we wrote a letter to the parents of her classmates asking (begging?) them to let us know when snacks would be coming into the classroom so that Jess could know the carb information and participate. We spent hours researching the carb information for school lunch items. We helped Jess pick out snacks to have in the classroom in case the dreaded treats came in without carb information. We printed out information for her teacher explaining what Type 1 diabetes is (as in it is not Type 2 diabetes...why do they even have the same name???). And, seriously...the list went on and on. It certainly felt like a heavy load to conquer. And, Jess arrives at school every day carrying the heaver burden on managing it day by day on her own at the young age of 8. And, did I mention the bag she must carry???

Example B: Packing for a trip with Type 1 diabetes. And, I thought this was hard...

Example C: Packing for a trip with Type 1 diabetes and two people on pumps. Seriously...this is crazy. Each time you hope the plane has enough room for all the carry-on bags one must have for all of their supplies: Insulin vials and syringes, alcohol pads, spare pumps, spare cartridges, spare sites, meter, strips, batteries, lancets, ketone meter, ketone strips, sweets for lows, snacks, sick day guidelines, travel letter, EMLA cream, and I'm sure I'm forgetting something! Not to mention the fact that apparently the pumps can't go through the xray machines, so each time I must prepare my 8 year old very shy daughter that there may be a pat down.

I could give examples D-Z, but the point is all the same. The balance is in carrying the heavy load while maintaining the enjoyment of life and the freedom and care-free days of childhood. I am thankful I can do this for Jessica now. Traveling through life may not be as uninhibited and joyful as it once was for her, but I am still able to do the bulk of the "packing" for her. I dread the day when she realizes the full burden of this disease. My hope is that by then we will have repeatedly taught her that diabetes can not stop her. It may take asking how she will do something, but she can still do it.

But, I have to admit sometimes I just have big time "I hate diabetes days." Today is one of them. We need a cure. I will borrow from my true idol Kerri Sparling's website and remind people "just because these children don't look sick does not mean they don't deserve a cure." Insulin and pumps are life saving miracles, but they are not a cure. Together we must all work hard to advocate and fund raise. And, until then I remain ever thankful for those in my life that "get it."

Monday, March 14, 2011

I Don't Have All The Answers...Or Any Of Them

Parenting is often a fine balance. Am I supposed to just listen or offer advice? Should I problem solve or let my child come up with the answer? Parenting a child with diabetes is more of the same, but the questions can be so much more heart wrenching.

Jessica: "I hate carrying this bag." This bag is her fanny pack with her meter, glucagon, skittles for lows...it is to me her lifeline. It is what her dad and I spent sleepless nights wondering if she would be allowed to carry at her new school. Thankfully, she is and therefore can test in the classroom, and treat her lows. To us, it was a huge relief she would be allowed to carry it. To her it is heavy and I suspect a daily reminder that out of all of her classmates, it is her pancreas that decided on an early retirement.

Me: Wondering to myself how to address this..."I know honey, I wish you didn't have to carry it either." Translation- I wish your pancreas worked so that you wouldn't have to carry it, and test, and measure your food, and....

Jessica: "I hate diabetes."
Me: Easy one. "I hate diabetes too."

Jessica: "Am I really going to have this forever?"
Me: Heart breaking. "Until there's a cure...and until then I am here to help you and be part of Team Jessica." I struggle so much with this question. I strongly believe you can never take away a patient's hope. Sometimes that is all there is left. But, my husband said something so discouraging to me recently. I asked him why he did not enter his information into Trial Net. Didn't he want to be in studies that could lead to a cure? He told me that when he was first diagnosed with Type 1 he used to hope and wait for the cure. He's had it 22 years now. At first he was told there would be a cure in 5 years. Five years came and went. Then 10...he said that it is just to painful to get his hopes up. He just needs to focus on the present. I don't think he thinks a cure is coming in his lifetime. That broke my heart, and made me wonder if I am doing the right thing by giving Jessica hope that a cure will come. I remember our JDRF walk. She was seven. We got done walking and Jessica said "we finished the walk and raised over $7000 for the scientists...now is there a cure?" I hated explaining to her that it wasn't as simple as her seven year old brain thought it could be. I can't give up hope for a cure, and I know it is probably just as much for my survival as hers that I keep believing in one. The scientist in me thinks it is possible, the mom in me needs it to be.

Jessica: "Why did I get this?" I am sure the translation that she will not speak aloud is "Why did my twin sister not?"
Me: "We don't know, but it is nothing you did or anybody did." As, I silently pray...please don't let her twin sister get it too. I can't fathom the thought.

And, my favorite...
Jessica: "Why doesn't daddy have to measure that, but I do?"
Me: Struggling here. The truth...because I only have such a precious short time while you will still listen to me, and I know it. Because I spend every moment trying to give you the skills and teach you what you need to know to live a long, healthy life. Because I saw a Type 1 in the office today with retinopathy, neuropathy, and so many complications that I almost burst into tears. I so desperately want to try to force you to be the most compliant Type 1 that ever lived, because the thought of having to watch you develop complications, and slowly but surely fall into ill health is enough to shatter my heart into a million pieces. The thought that you may die before I do has entered my mind more than once, and no matter how much I want to keep it out, it is there. And, in my mind the only thing I can do to prevent it is to teach you, and give you the tools to manage this horrible, unrelenting disease. I wish your dad would measure everything, but he has lived with this 22 years and done a pretty darn good job of managing it. So, instead "Daddy should measure it, but he has gotten pretty good at guessing."

Every day there are so many questions. Questions that an eight year old shouldn't have to ask. And there are statements. "Mom, I am worried I will get low and die in my sleep." No matter how many times I reassure her that her Dad and I check her and keep her safe, the worry persists. It breaks my heart that a child even has these thoughts. Yet, this is not a disease that could be kept from her. And, it is not a disease that should be. She needs to know the facts to manage it and take control of it herself.

And, she has grown so much. I don't think I would recognize the little girl she was before she was diagnosed. She has matured years beyond her age. She has learned so much, and I like to think she has grown so much more self confident. She knows what she does on a daily basis compared to other kids her age, and I think she feels a sense of pride as well. She is the healthiest little eater I know. As her mom, I am amazingly proud of her. I may not have all the answers, and she has a never ending supply of questions, but I love that she feels safe enough to come to me with them. My hope is she always will.