Tuesday, January 3, 2012

Like death to a dream

I know my titles are pretty dramatic. But I guess all I can say is this process has been pretty dramatic. Maybe if I'm talking to you in person I wouldn't say things in such a way. But that's why I'm here. Because I can be as dramatic as I feel like being. And learning what diabetes meant for Alex and for all of us to me was like death of a dream. It doesn't mean there won't be new dreams. It doesn't mean things couldn't be worse. But all the same the next few days were filled with lots of tears and coming to terms with what couldn't ever be. I'm happy to say I think I'm moving past that and forward to what COULD be. But I started this blog because for some reason it's important to me to remember all my thoughts and feelings of those early days. I have this swiss cheese memory (thank you ADHD) and if I don't record it, I tend to forget it. Sometimes that's a good thing. But sometimes it's also important to remember...

My first fears on the regular diabetic ward were about telling Alex. I'm just going to say Alex from now on. I suck at saying "A" all the time. So Alex it is. We had been told many times since coming to the ER about the great services the hospital had to educate kids. We also came the week of Christmas. Much of that staff was off or busy with holiday activities. On one hand it was fun to get many visitors and presents being the week of Christmas. On the other hand, I'd have traded the presents and famous visitors for some therapy and education in a heartbeat. The first few times they started doing the blood pokes and shots my reaction was to try to stop them and ask them just to take it from her IV to ease her pain. The nurses reminded me this was something she had to get used to. The IV would be going away. The shots and blood tests would remain a daily part of her life. Oh...

She still didn't know this was a forever thing. She screamed and cried each time they poked her. And it wasn't like I could tell her she would be better soon and not have anymore of those. I was dreading the time when they would start having us give her a shot. How would I ever do that? Finally Child Life Services came to talk to Alex about diabetes. As luck would have it, they were out of the special backpack gift they usually give children which contains a bear, book and other items to help them understand. They gave us a paper to fax to request it be mailed to us. That was great...but we needed help now...

Child Life scrounged up a makeshift bear. They came and read Alex a book about taking diabetes to school. They explained about the pancreas and insulin. They told her there was no cure. Alex covered her head with her blanket and sobbed. She tried to sob quietly but I could hear her. And it broke my heart. She refused to come out from the blanket for some time. She was listening but I knew she was crushed. I was crushed. But I had to try not to start crying too.

The dietitian came to meet with us. She talked about carb counting. She explained that Alex could not have anything with more than 5 carbs without insulin. She explained the carb ratio (20:1) and the insulin factor of 150/75. We learned how to calculate Alex's insulin based on what she was eating and what her blood sugar was. We learned about appropriate low carb snacks and "free foods". I learned that pretty much everything Alex currently eats should probably be modified in some way either in terms of smaller portions; timing with meals; etc. I blamed myself for her dietary choices and still do. She isn't a big vegetable eater. She hates nuts. She pretty much doesn't care for any low carb choices other than bacon, eggs, and a few other high fat/low carb items. I should have worked harder when she was a toddler to open up her taste buds to those things. Instead I was lazy and let her gravitate to high carb items. Now we were all paying a price for it. It didn't cause her to have diabetes as a Type 1. But it wasn't going to make this transition any easier.

The dietitian was super nice. She came back to visit us again the next day, day four of our stay. We still weren't giving shots. She offered for us to give her shots (of saline). I didn't want to give a stranger a shot either but i took her up on the offer. It helped me get a little more used to the idea of it. She gave me a shot. I agreed it was not horribly painful. Just a slight pinch going in.

My husband was the first one to give Alex a shot between the two of us. It went smoothly and he was calm and patient. Alex screamed a lot but we expected it too. A few hours later it would be my turn. I was terrified despite my practice. The nurse didn't help. He was tall and leaned over me closely and seemed anxious. I felt like he didn't want me to do it either. I was shaking quite a bit. I drew up the insulin and he pointed out air bubbles. I had to redraw it. I bent the needle. We had to start over. Finally we were ready to give it to Alex who was screaming. I put the shot in and it slipped out of my hands. I caught it and managed to complete the shot without it causing damage but the damage mentally was done. Alex was screaming she hated me and that I was terrible at it. And that I would never do it again. The nurse offered me no kind words either. I had been awake for most of 3 days. I just felt like I failed at the thing I was most scared of doing. My daughter was screaming she hated me.

I looked at my husband and simply said I had to leave. I drove home in tears, crying loudly the 40 minutes home. I came in the house, flung myself on the chair in the living room by the brightly lit Christmas tree and sobbed like I don't remember sobbing and crying in many years. I don't know how long I laid there but eventually I fell asleep. I woke up around 1 AM and couldn't go back to sleep. I thought about how badly the day before had gone. I thought about my daughter crying when I left the hospital. I had told her I'd be back by morning. I didn't want to give more shots but I knew I had to figure it out. I showered and drove back to the hospital at 3 in the morning.

When I arrived, my husband was awake to my surprise sitting in a chair with his laptop blogging. He was crying too. The night time blood draws and shots had not gone well. My daughter has told me she hates me or that I am mean every so often for things like telling her to clean her room. She has never told her dad that she hated him. Apparently she had said that and more during the nightly blood draws. I thought when I got to the hospital that my husband would have had a good night and I could build on that. Instead it was clear we were both falling apart. It was his time to leave and regroup. It was also clear there was no way we were going home on Christmas Eve. We weren't ready.

Christmas Eve is best described as the crying day. I think I spent 85% of the day in tears as I thought about how I would ever be good at giving Alex shots and blood pokes. I thought about how she couldn't go to sleepovers or have birthday cake at school on a whim. I thought about how she would have to ensure blood pokes to do karate and that she would be spending a good deal of time in the nurse's office each day instead of in class. I thought about the fact that she was going to be on a low carb diet at 9 years of age and that it would be the kind of diet like I have failed at so many times in the past for myself. If I am a failure at choosing appropriate foods, how would I ever be successful with my daughter?

All the while with the help of a patient kind nurse I began to take charge of the shots and blood draws. I wanted to be home on Christmas. I thought about my son who had been abandoned for the week and now would be sleeping at someone else's home Christmas eve night and waking up without presents from Santa. I hated the world. I hated diabetes. Mostly I cried. But...I got better at giving the shots.

When my husband returned in the afternoon, we hugged and resolved that this was the hand we had been dealt and like it or not somehow we had to do this. We got better together. We walked Alex around the hospital that night which was mostly quiet and empty. Most patients outside of very very sick patients had been sent home for Christmas. My daughter was angry and blaming us for staying this night. "It's your fault I have to stay here for Christmas!". She was angry and what could I say to that? We took her to the rooftop garden and sprinkled reindeer food in the potted plants. We took pictures at some Christmas trees displayed in the waiting rooms.

I drove home in the early evening to drive my son to his other grandmother's home for the night. I cried and told him I was sorry and that we would be home on Christmas and open presents. My even-tempered level headed 11 year old boy told me he understood. I assured him that Grandma would have presents for him too in the morning. Then I drove home and prepped the family room in hopes of our discharge Christmas day.

I returned to the hospital around 10:30 and brought with me Santa's plate for cookies and a few presents. We had a decent night's sleep because the doctor's decided Alex did not need a 3 AM blood test and shot. In the morning, she opened her presents and managed a few smiles. When the endocrinologist came, we agreed that if the afternoon blood draw went okay, we could go home. We were still having stress over the blood draws. Sometimes it seems we would poke and not enough blood would be drawn and we would have to repoke. The shots were going as well as they could be going at that point.

Lunch went smoothly and we received discharge papers shortly afterwards. Finally we were going home. We were happy to be leaving, but anxious too. No more nurses to help. No more receipts from the cafeteria showing the exact carb counts. It was going to be all us and only us at home. But it was time and we were past the constant crying and resolved to figure this out.

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