Thursday, November 29, 2007

The birthday invitation

Am I the only mom with a young "D" child that cringes at the sight of a birthday invitation? Don't get me wrong. I love the fact that Maddison is invited, and to see the sparkle in her eye knowing that she gets to go to a party is priceless. Of course this is a party at Pump it Up, an indoor jumpy Disneyland for kids, even adults. For two and a half hours Maddison will be jumping non-stop, enjoying pizza and cake in between. I love that she is healthy enough to do these things, but birthday parties and Diabetes SUCK! I have been master planning how I will dose for the cake vs the hours of activity that will show its ugly head later (and sooner) in the night. I feel guilty for dreading birthday parties, but you just never know what it will bring.

There was the magic party that included so much excitement we chased lows the entire time. We sat drinking soda and eating the cotton candy while other parents looked horrified as they watched me frantically feed all this sugar to my "D" child. She stood in front of them pale as could be, giggling, seemingly fine. I really thought I planned well for that party too, but Diabetes won that day.

There were the swim parties that she ran high the whole time and was too exhausted to even enjoy herself. How could that happen? Sometimes the burst of adrenaline in swimming makes her go higher first, but for hours she stayed high. Was I supposed to deny her any food? Deny her the cake and ice cream because she was high to begin with? Of course not. But you feel guilty either way you choose.

There is the tea parties that I assume will cause highs from tea cakes, cupcakes and cookies, only to leave me dazed and confused all over again wondering what the hell I did wrong. Chasing lows with all that sugar? Is it the excitement that burns up the sugar making you think for just a day you were without Diabetes?

I wish I could just drop Maddison off like all the other kids, and not worry about every single bite of cake. Not worry about that stupid jumpy house. Not worry that she feels "different" having her finger poked a million times in 2 hours because she is low, low, low. One party she asked me to check her sugar in the bathroom because she didn't want all the kids to stare......she was never embarrassed before. My eyes were full of tears as I told her it was okay, to never hide in a filthy bathroom to check your blood sugar. You should never be ashamed of Diabetes. But, even I myself "hide" it sometimes, how could I expect her to always be so confident and secure with herself? We made it as private as we could that day, but my heart broke into a million pieces for her. I cried for hours that night.

So, tomorrow I will be full of anxiety in anticipation of what the party will bring. I pray that she won't go low and have to sit out waiting to resume her play. I pray that she won't be sky high in the end either. It is just one day, and for one day I just want her to do all the normal kid things again without worry. (moms worry that is) Diabetes is harder on the parents on party days. She won't even notice Diabetes is there. But mom always does. Every single minute, until you see her smiling face, and hear those words....."that was the best party ever"will mom know Diabetes is there, and I will still always have a master plan. I plan on this party to be picture perfect, no scary highs, no scary lows! I have learned from my mistakes, and learned that sometimes my best is all I can do...... As long as she has fun and runs, jumps and plays to her heart content, I will be a happy mom. And then in the end I will need a nice bottle of wine :)

Wednesday, November 28, 2007

Starting over

My intentions of starting this blog back in June were in the right place. However, energy...... or having any energy to blog was not with me. The last year has been exhausting. Before collapsing in bed each night the last thing I wanted was to bring up all the emotions of my day. Therefore, today 11-28-2007 I am starting over. I even deleted my initial blog post to start clean. I am up half the night anyway, so this is a promise I can make. I am settling in to the new "normal" sleep deprived life of a mother that has a child with Diabetes.

This blog is for my sanity. My own place to release my whirlwinds of emotions without the guilt of inflicting it upon others, unless of course, you are here with me and find peace at knowing you are not alone. My goal is to help other parents through the emotional turmoils we face every day managing a child with Juvenile Diabetes. You will have to forgive me in my sometimes random paragraphs that jump from one topic to another. Remember, I am sleep deprived and not a claimed English major :) This 1st blog gets a little long.....

On December 4th, 2006 my 6yr old daughter was diagnosed with Juvenile or Type 1 Diabetes. Click here to learn more about Juvenile Diabetes. I don't feel the need to add any other education on the topic. If you are here, you or someone you love must be suffering from this horrid disease. I was myself diagnosed with Type 1 just 9 months before my daughter. Weird? I agree. Overwhelming, at least.

Our story:

My own diagnosis was nothing close to what I felt when it happened to Maddison at such a young age. Maddison had always been very emotional, since about age 3. I always questioned her meltdowns, and swings in mood. Steadily after the age of 4 these swings got worse. She never slept well. She preferred milk to food. I never realized it was thirst that caused her to crave milk, or that she was an emotional mess after eating sugar. Now, most Physicians will tell you that most kids have a sudden onset of Diabetes. For Maddison, it was a very slow onset, much like my own that I saw coming for years. By age 5 in Kindergarten she would have meltdowns every day after school to the point that I thought she could have Autism, or some mental issues. I assumed she wasn't ready for Kindergarten. I thought she was tired, because she didn't sleep well. I thought she felt yucky because her poor diet, she hardly ate since the age of 4. I questioned my parenting and figured she was just a difficult 5 year old. Then the bed wetting set in. Once here. Once there. She wet the bed because it was 120 degrees in phoenix, which made her drink more water. More water = bed wetting at night. Then I was diagnosed with Diabetes, and I realized that Maddison was alot like me after eating. She could just fall asleep. Her moods were wild like my moods were wild. Ah ha! The light bulb clicked. The more I educated myself when I was diagnosed, the more scared for her I became. But denial is something very real. I never understood how a person could be in denial. Now I know denial is very real!

Fast forward, Maddison turned 6. Started 1st grade, but was more tired, I knew she wasn't ready for 1st grade, on so many levels besides emotional issues. Then she wet the bed nearly every day for a week. She complained that it tickled when she pee'd.....bladder infection? That was my answer. She hated waking up for school in the morning, and complained that her eyes "wouldn't open" (blurry vision) Then came the tummy aches. She doesn't eat vegetables! She must be constipated! Denial. One morning her breathe threw me off. I thought maybe she didn't brush her teeth the night before. I gathered all my thoughts and mentioned these things to my family, they of course thought I was still stuck in Diabetes craziness since my own diagnosis just months before. One night she vomited her oreo's and milk all over my bed. Weird I thought! I knew what this was!! The sugar made her sick!!But because she wasn't "sick" most of the day and seemed fine for days here and there I ignored it all! Finally she wet the bed a week straight and then twice in one night. That was it.

I had to go to work that day, I had Josh pick up Maddison from school and take her to the Pediatrician to see if she had a bladder infection. Denial! Over the phone I slipped in....oh yeah...and ask them to check her urine for sugar and ketones." When my cell phone rang at 11:00 that morning my heart stopped. Josh said to me "Kelly, you amaze me sometimes" and my tears started rolling. He was amazed that I was right, of course a mother knows! I freaked out and told my boss I had to go, Maddison's blood sugar was 497 in the office, but no ketones thank god! I was shaking so much, I was so angry at myself for ignoring this so long. What I didn't know at that time was that alot of kids are diagnosed near death. Blood sugars into the 800-1000 range. As in Air Evac, Comatose, Ketoacidosis. My child could have been near death had I ignored the signs any longer! Maddison spent 3 days in the hospital, although being my own Diabetes they wanted to just send her home by day 2. Diabetes is 1,000 times more complicated in a child, so I refused. Everyone has their own diagnosis story. Some very tragic, but we are very lucky that we caught this so soon. I thank god every day that we did.

Rewind------My father was diagnosed as well at the age of 32, so Diabetes was something I was always concerned about. I was borderline Gestational Diabetes with both pregnancies, I always knew/felt in my heart that it would catch up with me. It was still shocking when it did. It didn't hurt any less. It took me several months to come out from my darkness, I had alot of anger, and mostly fear. The range of emotions is enough to make you crazy. Somehow I managed to stick to my routine in running and workouts, the only time for me each day that I cherished. This kept my determination strong, and my focus of beating the disease itself.

I had watched Diabetes invade and destroy my dad since I was 10 years old. I still cannot bring myself to list his complications in writing. To see it in print is too permanent. Too painful. I will spare you the details. I know that education is the key. I know more today about managing this disease from my own self learning than most medical persons themselves. Sad, but that is the way it goes with a self managed disease like Diabetes.

I still wonder why my dad never felt the same sense of desperation in managing his Diabetes as I do today. I think that like so many others, he under estimated the impact that Diabetes could have on your body. Now I know the truth. It is exhausting. You feel defeated day after day. It never ends. It is a constant balance. Constant. Meaning every aspect of your day is centered around a number. You have to check your blood sugar to drive, you have to check to eat, wanna go for a walk? Gotta check that number. Grumpy? Tired? Thirsty? Just want to take a nap? You might have to eat first. Bedtime is scary. Alot of planning is involved just to go to bed at night. Can't fight those morning highs? Can't figure it out? Your well being today depends on a number. Your future depends on an A1c. No wonder my dad was such an angry man. He was exhausted, Diabetes burn out. Diabetes got the best of him. Though day after day he tried his best, it was never good enough. And then the complications set in, and he really gave up. Dad, I can honestly say I understand. I am 21 months into this and I am exhausted. You have lived with Diabetes for 33 years. I never in my life could have imagined what you were dealing with every day until it happened to me. No one can understand, unless you are here yourself. Not an Endocrinologist, not a psychologist, no one.

But this defeated, angry person won't be me. This past year since Maddison's diagnosis I have been an entirely changed person. I am not liking who I have become. Every spare minute of my day is spent looking over Maddison's numbers, and figuring out what needs to be micro managed. I spend a lot of time with support groups online, that keeps me on track emotionally. That is good. Relating with others is my sanity. I worry constantly. Will that ever change? I look like a train wreck, I cry when I see my old pictures of a happy, motivated young mom. I looked so healthy and alive. But yet today I am so torn down from fatigue and stress. I have to say, the first 6 months was the worst. Then we started an insulin pump and it started all over again. They don't tell you how a pump makes your life easier, but is so much more work in the beginning. I think about Diabetes constantly, whether in my number or Maddison's numbers.

Today at nearly a year of dealing with a child that has Diabetes, I have FINALLY come to terms with so much. I have found a new normal, a new peace in life with Diabetes. It was okay when it was just me and Diabetes, I could handle that. But with Maddison's diagnosis I have never cried so much. I have never feared something so much. I have never been so afraid of failing, because I would be failing her. Failing her life now and in the future. As the months have rolled by I have promised to stay focused. I have promised to fight this demon with all I have, no matter how tired, no matter how defeated I feel. Diabetes will never in this lifetime defeat me or my child. I am the closest thing we have to a working pancreas, and you can bet on my life that I will never let Diabetes win. I am a stronger person now. Our family is closer, more concerned and in tune with one another. I am thankful for our health, and all the little things in life are more precious.

Having a young child with Diabetes is most devastating to your emotions. Its not the 8-15 finger pokes every day. Its not the restrictions of diet. It's not the injections or pump site changes that get the best of you. Its the sense of loss. The loss of living carefree. Letting your guard down, to be slapped in the face with a serious low, or high. It's the just wanting to send your 7yr old to a birthday party without worrying about the jumpy castle and the potential lows you are faced with all night. Or the immediate low that could cause the most feared seizure in front of a bunch of strangers. Its having the only kid that has to have mom or dad stay at the party. The comments from uneducated people that think we did this to our child. We fed them too much sugar.....Did she used to be overweight? Why are you letting them have that cake? The nighttime checks. The people that think Diabetes can be "controlled" and magically thinking it takes no more effort day in and day out. The common cold that is not so common anymore. The new school year with kids that question, teachers that have to learn the seriousness the hard way, with our child being the one that pays the price. Its the little girl that can't have the sleep overs at her friends house. (someday soon I promise you that you can!) The haunting feeling you have when your child hoovers in the danger zone of highs for days. And knowing that nothing I have done to make it better can change that. The ketones that make you secretly cry in fear. The trampoline that makes me feel guilty for hating it. Summer swimming that takes planning, and a summer that is a learning experience at the mercy of our child that just wants to play, run and have fun all day. The constant adjusting. Always adjusting a dose and having to wait and watch to see the result. And praying that the adjustment is the right answer. The low that it caused. The high that it induced. Trying to take control. Day after day after day, after hour after hour. That 42 that you catch at 3am just when the last few weeks were so predictable. And knowing the possibility of what could have happened had you not checked that night. The sleep you will lose for the next few weeks as you try to forget the possibilities. A daughter that wants to have a cookie at the grocery store, and the man that feels he needs to speak his experience of Diabetes when he sees you use your insulin pump. The leg that he is missing. The words he speaks that poisons your child's mind and causes fear. The A1c that hasn't budged since your last appointment, despite your constant diligence in always managing better. Fearing that maybe your best effort isn't good enough. Maybe in the end Diabetes always has the last word. Uncertainties. Refusing food to a starving child that is 492 and just wants to eat! Wondering if she is just angry or is she high or low. Having to poke her finger to rule that out first. The siblings that live in fear and hurt too. Trying every day to be optimistic when you just don't know what the next blood sugar will bring. Seeing your child's eyes light up when they see a Diabetes commercial, because they know they are not alone. Hating your insulin pump because people stare at it. Having to stop your play and check your blood sugar. I could go on all day.......

In the end, we are doing great! Maddison is healthy, happy and thriving! She is proud of who she is, confident and eager for each new day. I guess we will be okay if we just keep our heads held high.