D(iagnosis) Day

Today marks three weeks since Lily's diagnosis. I don't think I will ever forget that morning. I woke up and got ready for work, letting Lily sleep as I normally did. When I went into her room to wake her up her bed was flooded with pee. My stomach feels sick thinking about how often she was sleeping in her pee and not waking me to clean her up (the mom guilt through this whole experience has been incomprehensible). I got her up and gave her a quick sponge bath before loading her up to bring to her dad's. I had told him the day before that I wasn't comfortable with her going to daycare that day because she was clearly sick and I couldn't take any more days off.

I called her Dad on the way telling him that something was wrong and we decided that he would bring her to her family doctor. After some more discussion we decided CHEO might be more appropriate and I decided I wanted to come and work would just need to understand.

We got to his house and sat her down and our concern multiplied when we were able to get a good look at her and noticed just how ill she really looked.

Lily had been acting off for two weeks (that I had noticed, could have been longer that went unnoticed). I had been asking all of my fellow moms if their children had been peeing the bed excessively at this age, asking for tips and tricks and trying all different things to help, all to no triumph.

About a week before her diagnosis, her grandmother had expressed that she felt as though Lily was loosing weight. At the time I quickly chalked it up to a growth spurt, or maybe she was just not a chunky baby like the rest. I am so grateful that she brought this up, because all though I may have been unresponsive at the time, that night I started looking back at pictures and comparing. The next day dressing her I was paying more attention to how the diaper fit, and what pants I was putting on her, all the things you do day-to-day without any thought. As much as I wished that she was wrong, I started to think that she may be right. I decided I would keep an eye on it for the next little bit and see if I felt it was need for concern.

The weekend before we brought her in I was changing her and almost cried when I saw her back and noticed how skinny she really was. Her spine was so outlined, I traced it with my fingers and held back the tears. Coming to terms with something being wrong with your child is so hard, I can't express how much I wanted to stay in denial and have more time with my happy, "healthy" child.

We arrived at CHEO in the morning of July 11th and within minutes knew she had diabetes and everything we were suspicious of was coming to light. Upon arrival we got the typical message that only one parent is allowed, and of course I refused to follow the rule (the more you get to know me the more this will make sense), and we both walked with her past this woman to triage. We told the nurse we thought she might have diabetes and wanted to get her checked, told her the signs and symptoms that we had noticed and she was very calm and kind and said that we will take her blood sugar and go from there.

She checked it and said, "you both should stay for this". I remember feeling the life drain from my face and the panic set in. I looked at the machine and saw 22, I asked if that was her blood sugar level and she said yes. I asked what a normal blood sugar is and she said 4-8. I didn't think I had any more life to leave my body, but it did just then. I just stared at the 22 on the screen and my whole mind and body went numb. She said she was going to bring us to a room, and her father and I looked each other in the eye and silently shared a moment of panic between the two of us. We followed the nurse in silence to the room and the second she closed the door I felt the warm stream of tears start to flow down my face. I said nothing for a minute, just standing rocking Lily in my arms crying. My mind was racing with so many thoughts, how could this be happening to my baby, was it something I did or could have done to prevent, I never want to leave her side again, I'm going to have to quit my job and move in with my parents to care for her, so many thoughts all at once. When I could finally bring myself to speak I told Dylan that I'm going to quit my job and figure out how to be with her to care for her. So much guilt ran through me for working for the past 6 months instead of being with her. Maybe I would have noticed something sooner, if I wasn't so tired and busy with work. Her father was able to calm me down and we waited for more doctors to tell us more information.

It was almost instant they said she has diabetes, but they will be doing more testing to see the severity and if she was in DKA. So many medical terms were said so quickly in passing during these conversations I couldn't keep up. I felt so dumb. We had to hold Lily down for needles for the next hour, listening to her screaming at the top of her lungs as they poked and prodded. I held it together for her, refused to leave her side, but all I wanted to do was run away. The pain I was feeling during her cries for help and knowing that she had to have this happen so we could learn more about what was happening, it felt so wrong to be putting her through this, but she never looked at me with hate and I thank God for that. Every time they were done I worried she would hate me for letting them do this to her, but all she wanted was to be in my arms. We were told she had just enough ketones in her blood that she needed to be admitted and hooked up to an IV for fluids and insulin.

They had to put boards on both arms to keep her from bending them and pulling at the IVs. She wasn't allowed to eat for 24 hours and couldn't move her arms. She had sensors hooked up to her stomach in three spots and to her toe. Cords were coming from every body part but one leg, it was heart wrenching. Picking her up became harder, everything was uncomfortable for her, she was miserable.

The next 24 hours was exhausting. They had to take her BG levels every hour, blood every three hours, and once she was taken off the IV for insulin she was getting injections regularly as well.

Her body was responding well to the insulin so we were able to be released the next day. We had to go to the diabetes clinic to have our first of many sessions. We needed to learn how to care for her at home. It was so overwhelming, I couldn't believe the amount of information we were being given running on 3-4 hours sleep and in shock. But, what else is supposed to happen, it is on us to care for her. So much was being put on us in the blink of an eye.

Over the next three weeks I felt all the emotions possible. I spent the first week to week and a half I was just in shock and felt numb. I felt nothing. I was only living to give Lily the medication she needed when she needed it, the rest was a blur. The sadness came and went. I didn't feel I had the time to feel these things, I had to give all my time to her. Then it hit me like a train. I felt like I was mourning the life that I had imagined for her. She would never be a carefree child. She would always have to be responsible and plan ahead. This is not the life I wanted for her. Then the anger came. I was so angry this was happening to her. She never did anything to deserve this. She is the most loving, happy little baby ever, why her?

I have wished that I could take it for her. I would take it in a heart beat for her, any day. I have wished that I had it as well as her, so I could show her that you can still be happy and live a good life with it. And just this past weekend, I have noticed that I have felt like I DID HAVE DIABETES.. I can't explain it, but I have been worried about what I am eating, my BG levels and so many more little things. I think that I am taking it on with her subconsciously. If she is going through this then I am too, I feel like my mind and body has decided she won't go through this alone. I'm not sure this is healthy for either of us haha but for now if it helps us get through this period then I will count my carbs and think about what my BG levels are before and after meals and my physical activity.

Every day I am seeing more and more of Lily being herself and the wild little explorer that she is, hungry for adventure. We are still so far away from having a good grasp on this, and making little mistakes here and there, but we are trying our absolute best. She is so loved, I know we will get her leveled out and living her best life. We can do this, we have no choice. You will have a beautiful life, I promise xoxo Mommy