Thursday, December 4, 2008

2 years ago today

Two years ago today as my cell phone rang, I had no idea how instantly my life would change. I became a voice, I stood my ground, and I am thankful denial left me that day. With panic and fear overcoming me, I found something I never knew I had within me. I found the courage to insist that Maddison's Pediatrician stop and listen us. My passive and shy nature was taken over by a mothers intuition, knowing that something is not right with her child. I became demanding and belligerent, something I have never once resorted to. As Josh called me at work that day, his words infuriated me. "The doctor said she just has a UTI Kelly, she is fine." But my denial had ended earlier that morning after Maddison wet the bed for the second time that night and moaned with stomach pain. I pretended all was fine as I got her ready for school, I even smelled the strange ketone smell on her breath for the first time. Why couldn't I just poke her finger and verify my suspicion? It would have been that easy. To this day, I dont know why I didn't, or couldn't. I guess I was just frozen with fear and believed only a doctor could diagnose Maddison with something such as Diabetes. I didn't even know the seriousness of the ketone smell on her breath, after all, they don't educate us adults with Diabetes. I only knew what I had learned myself through the Internet and many months of readings, I had no idea Maddison was nearing DKA. I made an appointment with her Pediatrician as soon as I got her off to school. Thankfully Josh was home from work that day and could take her in to the first available appointment.

After seeing the doctor a few brief moments Josh called me at work. Over a cell phone conversation he could hear the stress in my voice. He could hear that I was serious in believing Maddison had Diabetes now too. I told him to tell the Pediatrician that they need to check Maddison's urine for sugar and Ketones. I reminded him of her increasing irritability and totally uncontrollable meltdowns, her dark circles under her eyes, the increase in urination, bed wetting.... all the obvious to me. Josh didn't want to second guess or challenge the doctor, but he agreed to tell the doctor my concern. (she was unable to urinate so they just assumed she had a UTI because of the bed wetting) I know Josh thought I was just over the top with paranoia since I was diagnosed just 9 months prior. The doctor stepped out to write an RX to treat a UTI and when he returned Josh told him that I was insistent he check her urine. (why couldn't I just poke her finger!!?) The doctor proceeded to tell Josh that if Maddison had Diabetes she would be "much sicker than this" but he agreed to wait until she could urinate and check for sugar and ketones. My question is, why didn't they check the urine before making a diagnosis? I don't know the answer to this, and I will never understand how a Pediatrician could/would take the risk of making such a diagnosis without actually having a urine sample. It scares me and infuriates me every time I think about how Josh was nearly sent home with Maddison having just a UTI diagnosis!

After Maddison was able to pee in the little plastic cup the MA took her urine and the Pediatrician literally returned seconds later. Since I was at work while Josh took Maddison to the Doctor, I can only imagine the shock on that doctors face when he returned realizing he almost turned away a little girl that could be very sick, very fast. Josh said the doctor tried to act calm and collected, but he knew I was right after seeing the poor guy fumble with his words. I hear these stories all the time. Children sent home from an appointment misdiagnosed, only to be in DKA and possibly near death within days, even hours. Josh called me back at work minutes later and this time when my cell phone rang I knew we were on our way to Children's Hospital. Ketones were large, sugar was off the chart. Finger poke, 497. I'll always remember this day, I couldn't believe I was right. It was surreal. I thought I was prepared to hear it, and I wasn't. How could this be? She is fine most of the time! She still runs and plays, smiles, acts "normal" for the most part. I had an excuse for every symptom for so long. What are the chances we would be diagnosed 9 months apart? It just couldn't be true. The rest as they say is history, or should I say a painful memory?

Two years later Maddison can't even remember what it was like when she didn't have Diabetes. The finger pokes, carb counting and site changes all become routine. I still log numbers and worry endlessly about Maddison's health and well being. Some things never change. But I never thought any of this would feel normal as every parent promised me. How could needles, lows and highs ever be normal? How could I ever just see a number and fix it and move on without beating myself up? The first entire year I just couldn't accept that this chaos could feel normal, never, ever! Two years later here we are living a totally "normal" life. We really, truly are. 9,000 finger pokes down. Countless injections, site changes, highs and lows, all normal for my eight year old. Diabetes care will never feel "normal" in our hearts, but acceptance somehow guides you through each day. We still have days when we just want to hide. Some days we do hide, or should I say I hide. We still get kicked down, and we always get back up. We cry, we scream, I complain-ALOT! But I also make sure to remind Maddison how lucky we are that we are strong enough to prevail every day. I remind Maddison of the other children that were in the hospital with her that day. Some of those children would never walk again, some of them endure endless chemotherapy treatments and would not make it to see their next birthday. Some of them need organ transplants, lost limbs, lost family members in a trauma situation. Some of those children would never be the same again. We ARE. We are exactly who we used to be, and a little bit more. Maddison really understands that. She does. We have found strength to endure more than we ever thought possible. We have learned to cherish the good days, and have faith that bad days shall pass. We learn something from each and everyone of our hard times. Our appreciation for life itself is always with us, we are more compassionate and understanding of others differences. Most importantly, we have learned that until you walk a mile in someone else's shoes, you should offer nothing but a kind ear and open heart to listen and understand everyone has their own triumphs in life, all different, but all equally as trying.

Today as I think about being 2 years in to this chaos I am amazed how my outlook on life and living with Diabetes has changed. I honestly thought I would never overcome my grief, anger and fears. I have learned that time really does heal. 2 years ago today I wasn't the person I thought I was. In a strange way Diabetes has made me the person I have always wanted to be. I am emotionally and spiritually stronger, more determined to live the life I want to live and I never give up. I give Diabetes my all each and every day, because for Maddison I have to. 2 years ago today I cried all the tears I could possibly cry, but Maddison was strong. She smiled and told me "it would be okay mom." I finally know now that we really will be "ok." In fact, we are "brilliant" as Maddison would say. Despite all the complaining and venting I do here each day, I am very much at peace living this "normal" life. We still make the best of each day and we have many cherished friends that we would be without had Diabetes not brought our families together. Our family has grown and learned so much together these past two years. We defeated some truely miserable days that left us feeling hopeless and scared of what life has to offer. We have rejoiced in many ways, many times, over simple things. Two years ago today I had no idea we would make it to where we are today. Life is a little sweeter, alot more complicated, but still the same in the end.


Anonymous said...

What a great blog! i feel the same way you feel about a lot of things with the diabetes changing your life, if only other/healthy people knew! most just don't get any of it!!!

Wendy said...

You and Maddison are in my thoughts and prayers. It's so bizarre how you wake up one day and life is never the same. Sure, you get back to routine -- back to "normal"...but you never look at things the same, nothing feels the same again, little things that you had never noticed before become blaring train lights that cannot be missed...

Life just changes. And you're left to keep up.

Lynnea said...

Awww....we are "remembering" at the same time! A year apart. I too remember all the children less fortunate in the hospital, and use that as a reminder of how fortunate I am to have J.J.

I hope time heals more of my wounds....and "normal" becomes "normal".(Make sense?)

Maddison is so blessed to have you as a Mom...those Mama intuitions can't be pushed aside!! Thankfully your husband listened to you and pressed the issue.