Monday, October 20, 2008

Reality and new realizations

Hearing some children have been diagnosed around us these past few weeks has made me think alot about how this horrid disease tricks you in the beginning. You really have no idea what lies in the days ahead, much less the years ahead. Even as an adult with Type 1, I had no idea back then what management meant for a growing child. Back then I had no idea that insulin needs would change so much, so often. Since the "honeymoon" has ended and nothing seems to show the result I expect lately, this is the new reality that I am struggling to accept. Maddison's Diabetes has never been this difficult before. I am having more startling realizations every day.

After the initial shock, devastation, fear and despair that diagnosis brought, we got back to a new life with Diabetes. Life was good again. Months into the shots, finger poking, carb counting and going through every imaginable emotional distress, we finally gained confidence in managing the disease. Then the reality sets in. You realize that 24/7/365 you live by numbers. Numbers that mean so much, but yet the Endo's tell us to not worry. Just do our best. You start to see the reality that Diabetes changes ALL the time. Even scarier, only you as the parent knows your child best and can make the right adjustments. (at least in my experience) This brought me back to square one and I ended up going through all the initial emotions over again. I was even SHOCKED that THIS is really Diabetes. Who knew? Didn't we all think we just count the carbs, inject and it turns out right?!! You begin to realize that Diabetes isn't as easy as they lead you to believe. You finally realize that craziness is the name of the game and you aren't alone. It really is just this crazy for everyone. Reality? You have to just make the best of it while still feeling like numbers are never "good" enough. What a horrible day that is when this realization hits!

When things got crazy in those first months I remember thinking I must be doing something wrong. Years into this, I know it isn't anything I am doing wrong, and that is even scarier. Nearing two years of managing Maddison's Diabetes I am amazed at how much I have learned. I'm amazed at the parents that never give up and constantly battle for a better A1c. Us parents survive on little sleep and continue to wake every few hours to check blood sugar..... every single night.... hoping we can at least keep night time numbers better controlled for better health. We actually grow used to disturbed sleep AND accept that it will be this way until our child leaves home. (Or at least until they wake for lows at night) This is reality for most parents with Type 1 kids.

I used to wonder how parents had a child with an A1c in the 8-9% range. How could you let it get that high I thought!?? "I will never let that happen" or so I thought!Now I know how the higher A1c's happen, and I know exactly why. In the beginning Diabetes tricks you into thinking the Honeymoon will last forever and the A1c will always be so "easily" maintained. I never thought about what happens when your young child grows up and has raging hormones that are resistant to insulin. I never thought about Maddison being responsible for her own blood sugar checks, correcting them, bolusing and counting carbs away from me. I never thought about her just wanting to be "normal" and wanting to ignore the need for blood sugar checks and injections in front of all her friends! (okay, I have thought about this alot, but I wasn't realizing how fast this is approaching!)I have always planned to see to it that these things are done "perfectly" myself. I had myself convinced for a long time that I was in total control of each and every A1c! Hello! REALITY CHECK! Maddison is eight and her Diabetes isn't in my "control" much longer. Of course we teach responsibility and we teach her the importance of caring for her Diabetes.....but my support group moms this weekend made me realize how much stress is yet to come when Diabetes isn't exactly mine to "perfect" anymore.

So yes, this weekend I spent some time with moms from our support group. Now I find myself struggling with these realizations that are honestly freaking me out. Moms deal with so much when their young daughters approach the teenage years, add Diabetes to that and it scares me to death! These moms have been managing Diabetes much longer than I have managed Maddisons. I am realizing that it doesn't get gets harder with even more to consider. These Moms are amazing for everything they do to keep their child's life "normal" yet safely under control, and I don't think they realize that. They have to give responsibility to their children without burning them out. They have to tiptoe around social issues, control issues and so many teenage emotions I can't even begin to imagine! I don't want to think about having to balance a teenagers hormones and other issues when I can't even seem to balance an eight year olds stressful school days! Reality is....those days will be here before I know it! Older kids decide if/when they want to test their blood sugar. They decide if/when they want to bolus or not. They don't have mom or the school nurse deciding for them. I'm terrified of the teenage years, but I am thankful I have my support group moms to follow. (I love you Beth and Kristi!)

So I guess reality is again closing in on me. I think I had better start to find a way of letting go of what I expect to micro-manage in the years ahead. I know, I think too much. I usually just think about today and deal with it. I really shouldn't be stressing about tomorrow and certainly not stressing about years from now. But now I suddenly feel a sense of panic knowing this is only getting harder as Maddison gets older. I really thought it got easier. Wouldn't you think being more experienced means it gets easier? In the beginning with Diabetes they trick you into believing that it does get easier. They tell you how "one day it will all just be a new normal" well, as much as that is can't be farther from the truth at the same damn time! (I'm now keeping my sense of humor and laughing in a strange way) -WHEW!- I feel much better already just spilling these new found realizations from my mind! I know I sound entirely crazy right now. These are the kinds of things I stress about when I can't sleep.

I guess I need this reality to be my positive motivator. I need to tell myself that the true reality is no matter how hard this gets, I love Maddison more. She will never be alone when she faces this disease for herself as she goes off into the world with Diabetes as her own. And, she knows that. Reality is, at age 8 Maddison knows alot more than I give her credit for. She will be just fine when it comes time for her to take over the majority of her care. I'm realizing more every day that Maddison and I are in this together for a reason........


Phyl said...

Our first year I was so naive. And probably way too smug about Sam's almost-perfect numbers. This second year has been a nightmare. Reality has hit me between the eyes. I'm grateful for the way you put into words what I cannot.

What counts is that I love my son and he is an absolute trooper. We do the very, very best we can and recognize that, in the end, we have much less control than we think we do.

Scott K. Johnson said...

I know my struggle is different, but I hope that it is a bit comforting to know that way back when I was growing up with "D", nobody knew all that we know now.

If we can make it through alright, so can she. Doesn't make it any less hard for mom though...

Beth said...

Thanks, Kelly! I love you too! :)
It always makes me feel so much better to hang with you and Christi and everyone else - it so helps to know we're not in this alone, and you have such a good way of helping me understand if form the perspective of actually FEELING this stinking disease. I still swear that "people who get it" are what is keeping me sane.

I'm sorry to have to drag up all the pre-teen, hormonal angst and make you think of it ahead of time, though! The good news is, I guess, that you'll have had the experience of already dealing with Hannah before Maddi gets there, so it won't be flying blind in terms of dealing with a pre-teen/teen. And, to quote High School Musical, we're all in this together! LOL

Maddi will get through it all, just as Meg and Khristen and everyone else - like Scott said in his comment, they will all get through it all right. And we'll all be gray and stressed and leaning on each other the whole way.