Sunday, October 7, 2012

Five Years...

 I can't believe it's been five years. It feels like so much longer...much, much longer than five years.

I will never forget that weekend. It was the weekend of the Greek Festival and we had been very busy. We spent that Thursday evening with friends at the Festival dancing, singing...and taking multiple trips to the Port-A-Potty. Lily went through a few sippy cups of water that night. She was dancing like any crazy 3-year-old would when there's a live band. It was 100 degrees. I didn't think much of it.

I had been telling my friends that she had been tugging at her panties all week. Her Mother's Day Out teacher had mentioned it and her grandmother had as well. They suggested I take her to the pediatrician the next morning to see if anything was going on. So, we got up that Friday morning and headed to the doctor. I told him about the panties and that I was concerned she had a yeast infection maybe. He checked her externally and sent us home. He didn't find anything wrong.

That evening, I told Lily's dad about the visit. He was upset that he didn't do a urine test since she may have a urinary tract infection. I had never mentioned the multiple trips to the bathroom and the excessive thirst from the night before. It didn't seem out of the ordinary to me except in hindsight after her diagnoses.

We woke up that Saturday morning and got ready for a birthday party. We made what we thought would be a pit stop at the pediatrician to have a urine test done. I spent a LONG time trying to get my toddler to pee in a cup. I was frustrated. She was frustrated. We sat and waited for what seemed like an eternity for the results to come back. We were late for the party now and I was not happy. Lily sat in her leotard playing quietly. The doctor came in with a sullen look on her face. She said that Lily had high levels of glucose in her urine which usually meant type 1 diabetes. My ears got all fuzzy. I couldn't make out what she was saying. Diabetes? What had I fed her for breakfast? Did she have a lot of sugar? She asked about excessive thirst and mind went straight to the Greek Festival at this point. Her blood sugar was in the 300's. This wasn't normal. This was high. My mind couldn't process anything. My heart was racing. I knew something very scary and bad was happening at this minute but I didn't understand what. I knew of diabetes but I knew nothing about it. At this point, we were sent to the ER. Her daddy took her while I went home with her almost 1-year-old sister. I waited and waited calling her dad every few minutes for updates.

They sent him home. She had no ketones yet. They sent her home...this still baffles me. Her blood sugar was very high and they sent her home. Space issues. Her daddy brought her home and was angry. He comes from a family of physicians and he knew EXACTLY what was going on. He understood. I was in denial. He had her pee on a ketone stick and it was dark maroon...VERY high ketones present. She was in danger of going into DKA. I only get this now.

He went back to the ER. I got a babysitter and followed. Within a couple of hours, she was admitted and was given a diagnosis of type 1 diabetes. Insulin forever. Shots forever. Finger pricks forever. Counting carbs forever. Fear of Dead In Bed Syndrome forever. I didn't shed a tear except once in the shower. A defense mechanism. I had to be her rock. I had to get her through this. I had to make it okay. She was scared and confused and didn't understand why we were hurting her multiple times a day by piercing her skin with needles. It took us a few days to realize that the lancet device (that you check her fingers with) from the hospital was very painful. It was taking two nurses to hold her down while I checked her fingers. How the fuck was I going to do this alone for the rest of our lives? Someone gave me a new "popper" as we called it. She didn't flinch. She was fine. She didn't even wake up when I checked her anymore. Damn hospitals. Damn me for not knowing enough. Things got better from that point on. We did research. We learned how to count carbs. We learned the facts about type 1. We learned that she can lead a normal life. We learned that yes, she can eat cupcakes and pizza at parties. She just needs insulin. She is powered by insulin.

With that, we also learned the fears and worries. We learned that Lily couldn't just go to school anymore. She couldn't be dropped for playdates. We learned that some friends weren't willing to include her in activities because of their fear of the disease...or they didn't want to deal with it. We learned who were true friends as well.

So much has come from diabetes, both good and bad. The bad is child has a shitty disease that has a mind of it's own. If you try to control it, you will spend life chasing your tail. If you don't try to control it, you will lose your child. After five years, it is part of my life. It's part of my thoughts. It has become a part of our life that is there and always thought about but not obsessed over anymore. It's part of our routine. The first year or so it was all we did. All we thought about it.

The good...well, Lily is a more mature, passionate, considerate, sympathetic, courageous, and brave little girl because of what she has been through. She thinks life is precious. She is right. She has plans. She has a future. She knows she is special. She is very much her own person. Nothing makes her change who she is. If she meets a friend that she feels isn't a good friend, she quietly moves on. She wants no part of the drama little girls create. She is so confident and that is the best gift this little girl could have. She is a hero to so many people. She chooses to live her life and love her life. She has tons of questions about diabetes and why she has it, why people are sad when their kids get it, etc. There are so many teachable moments as a parent with her. She gets it. She gets life.

Lots to say today. This is always a very emotional day for me. There is a break in my past. I see pictures from our trip to Martha's Vineyard and that is our last vacation before the big D. There's a line in my history. Before diabetes and after. I pray every day that a cure is found but I have to say, I am not always so full of hope. It seems so far off. It is so far off. I have learned to not lean on the hope of a cure too much...I try to focus more on teaching Lily how to LIVE with this and how to keep herself healthy always. I try to teach her how to make good choices. It's working...the kid won't eat fast food and wants to exercise. She thinks being too skinny is a sign of being unhealthy. She sees people that are grossly overweight and she asks me why they made bad choices. Teachable moments. It's a fine line.

Bottom line, I love my baby. I am proud of her. I am proud to be her mother. We are a team. We are closer than close can be. She is my hero.

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