I thought I would share the day we found out Keeli was diagnosed with Type 1 Diabetes and the feelings and all the emotions you go through.
We made the decision to hold Keeli back from starting kindergarten until she turned 6. We had several reasons and I haven't regretted it at all. She needed to go to her well check up and she had to get her last 3 booster shots. She had gained a little weight but not much. Nothing new for her she's aways been little. We took the pee test and the nurse came back in and asked us to take 1 more because it came back with sugar in her urine. We did another one and I remember thinking to myself what does that even mean. I didn't know anything about it. I probably thought about what she'd had for breakfast that morning. The nurse came back in and told me, "this is strange, no sugar this time"... must of been a defect in the test. I said ok, great and we were on our way. She was so excited about starting school. I was a wreck but I knew I was only 5 minutes away so I could go and eat lunch or help out if the teacher needed me. School started.. For the most part she did really good. Her teacher loved her and I loved her teacher. Keeli did cry a lot. She gets her feelings hurt easy. She didn't want to ever miss a day but she really would of liked it better if I was there at school ALL the time. She got the typical viruses kids get from school... I did notice she was more tired but really she was on a routine and had busy days with waking up early. Life was good... but that urine test for some reason just wouldn't leave my mind. I finally decided to look it up. I needed to just see the what if's... had it of come back again with sugar. Type 1 diabetes.. there is was big bold black letters. I read and read and read. I brushed it off and thought thank God that test showed no sugar. Then I felt like everywhere I turned I was seeing or hearing something about Type 1... At the store, would you like to make a donation for Type 1 diabetes? Nick Jonas was big, There was an episode on the disney channel about a kid with type 1... Then the Apprentice, I've not watched that show since the first season. But there I sat obsessed watching Bret.... What was the deal with all this Type 1. I started feeling like it was a sign. I really started getting scared. I did more research and I was angry that Keeli's pedi office didn't insist on one more test or have us come back another day that week. If she has diabetes this is serious. I got so angry at the office I ended up calling them and telling them I wanted all her records and that I wanted to change pedi's. I had been frustrated at them for a long while now, (a whole other story) but this would of topped it off. This place was literally a 2 minute drive from our home and I've used them for 18 years... But something was telling me to make that change. So I did.... I found an office that I had heard great things about and told them I was searching for a new pedi but with insurance Keeli wasn't due for her next visit for several months. I told them that was fine and she was fine, BUT I wanted her tested for type 1 diabetes, just to ease my mind. I explained to the lady on the phone about her first urine test and how they should of done a 3rd to rule it out... She agreed and set us up an appointment... months in advance, but that IF anything happens to just call and she'd get us in. She acted a little shocked about my request for this urine test but she listened to me instead of treating me like I had no clue since there weren't any symptoms YET. I told my husband that I called and found Keeli a new doctor, he wasn't surprised since he knew I had been fed up with the old office and then I told him I wanted her urine checked for diabetes... Well, I think that upset him.. He didn't want to talk about it and probably thought I was off my rocker. I just explained that it was simply to make me feel better. We didn't talk about it anymore. Time passed... maybe I was looking for things, and maybe things were really happening. I'll list the Off things that I noticed.
First.. Her pants all have the adjustable waste on the inside... At the start of the year we adjusted it to a smaller fit, through out the school year it expanded... by the end of the school year we were back to the same spot we started off with.
She was hungry.... I would wake up in the morning hearing her rummaging through the pantry..
Her belly started hurting off and on, she called it butterflies.
about 2 days out of the week she would lay on the couch because her head hurt and fall asleep.
All those things may stand out but if you add her day into it those could be excused..
She may be thinning out because she's getting older and losing baby fat.
She's hungry because she's a growing girl.
Her head hurts and she's sleepy because she's having to wake up for school so early, and her eyes just may be bothering her from trying to see the board, or doing school work.
Her belly may be upset because she gets upset about being away from me at school...
There was a reason for each of those things.... Then she got a virus. Keeli throws up pretty easy and she catches any bug she comes in contact with. This has always been the case with her. But she was throwing up more often. After this one virus she threw up 1-2 times a day for a week. She acted like she felt ok, just recovering from the virus.
A few weeks before her appointment. She was looking thinner. She needed a drink ALL the time. She had a few accidents in her sleep. Her belly was hurting even more. She was so hungry. We would go through a day or two and then nothing.. back to normal. It was all so subtle.... A few days before her appointment. She drank a whole box of Capri sun in 1 day. I didn't know she was getting them out and when I'd see her with one I just figured it was one from earlier. I didn't realize it until I picked up an empty box. She whispered something in my ear on one of those days, and the smell of her breath took me by surprise.... It was very different. Sweet, but strong. She didn't smell like Keeli. I looked that up and sure enough that was a sign... but I still wasn't convinced... She as still through all of this acting like her normal self. Laughing, playing hard and having fun. The days before her appointment we went to the zoo.... She loves the zoo. She did great. I got one of those huge refill drinks and we shared it and she asked me several times to carry her that her legs hurt and she couldn't walk anymore, typical kid... I told her no she has to suck it up, but she caught a ride on her sisters back for a while. That night before the appointment I got all my questions ready and was set....
The appointment was at 9am... Keeli ate a small breakfast. 2 slices of bacon and toast. We get lost and end up being 15 minutes late.. I had planned on 15 minutes early because I knew all that new patient paper work was waiting on me... I called to let them know I was lost.. We found the place and as soon as we walked in I was pleased. I met her new doctor. Keeli took all the tests they give you, eye test, hearing tests, weighed her and measured her... Afterwards the doctor came in and talked to me about her weight and height. She had finally gotten taller and she was on the chart (kinda) .4 percentile!!! Then she told me her weight... 38 pounds. she's 6 and weighs 38 pounds.... The doctor told me not to worry that she's fine just small. I told her that is the exact weight she was 1 year ago, and that concerns me. As she was reassuring me and telling us how glad she was to meet us and pretty much that we could be on our way, I interrupted her and told her that my soul purpose for this appointment was for a urine test. She was puzzled. I explained and she told me that she'd be happy to do one, but she did look at me like I was wasting my time. I didn't care.. I wanted to know so I could stop holding my breath. We took the pee sample and waited... I feel like we waited forever... Keeli was playing hop scotch on the tile in the room, and telling me she was hungry.. and all she wanted to do was go home so she could swim. Then I heard her new doctor just outside our door. I told Keeli to be quiet so I could hear what she was saying. She was talking to someone on the phone. Then I heard her clearly, she was talking to the closest children's diabetes center. She called an endo and she was talking about Keeli. She was setting up an appointment. She came into our room and said.. I'm sorry, but you are right, Keeli has sugar in her urine and I've set up an appointment for her and you have to go immediately. Expect her to have to stay at that hospital for up to 3 days. I felt a flood of emotions and I couldn't hear her anymore, I couldn't think, I was numb. I just wanted to be wrong. I just wanted that test to stop my fear and obsession I had with worrying something wasn't right with Keeli. But no, I was right. Keeli was still playing hop scotch, she wasn't even listening. I told the doctor and the nurse that I had to go home first, and get my husband. He was asleep when we left. He works at night and probably doesn't even remember her having this appointment. They told me no, that I really must go straight to the hospital. I lost it. I told them I'm sorry but I will be driving to get my husband that I can't do this on my own and I needed him, we needed to all 3 go through this and understand this together. The nurse told me that I just needed to do what I need to do, and she had to tell me what she was supposed to tell me and she winked at me and told me to go. I knew that was my cue to go straight home grab my husband and head to the hospital.
As we left the office, Keeli kept asking me what was wrong. I tried to stop crying so she wouldn't be scared but this time I couldn't hold it all in. She was hungry we had been at that appointment
for almost 3 and a half hours. It was her lunch time. I'd already drove past all our typical fast food stops all that was left on the way home was Dairy Queen. But what the hell do I order? I knew that diabetes had something to do with your body and carbs but what? I didn't know enough. She needed to eat because I didn't know what else we had ahead of us. I ordered her a hot dog, tater tots and a water. She gobbled it up on the drive home. We finally reached the drive way and then I felt like I was wrong by not taking her straight to the hospital, what if something happens between now and the 45 min drive there? Does it get that bad that fast? I was so clueless and felt helpless. I knew when I seen my husband he was upset and had been crying. He told me he was sorry for no listening to me when I tried to talk to him about all of this a few months ago, but none of that even mattered anymore to me. All I wanted was answers and the see the endo. We were on our way....
After being late (again) we finally reached the children's clinic. This hospital is too big and confusing but thank God for a friendly staff. We met with several people. Keeli had to have her blood drawn for all these tests and we talked to the Dr that was there that day. He has had diabetes since he was 2 years old. He is a sweet man and I felt good knowing there was someone who has LIVED with this disease that still looked healthy. He talked and talked and then he said... She will need 4 shots a day... 4? I thought does he mean until she gets better? No, every single day for the rest of her life. 4... That was it. That's when it hit me about as hard as anything could in my entire life. Keeli is a Type 1 diabetic and she will need to be treated for the rest of her life. Why? What caused this? What did I do wrong? Is she going to live? Is she going to need some organ transplant in the near future? Is she going to be OK? All the bad shit that I read on the computer flooded my brain. This is impossible. She looked at me while I was crying and asked me, why are you crying mama? I'm going to me ok. Is your mind capable of absorbing all the information they throw at you at the very same time you are grieving over a diagnosis of your child? NO!! It's not. I can say we are one of the lucky few. Keeli wasn't sick enough to have to stay at the hospital we got to take her home that night. We were on our on. I was scared to hurt her and I'd cry when she'd cry. Everything about those first couple of weeks were unfair. A horrible dream that I couldn't wake up from. Then one day reality sunk in and I realized this was life... Our life, Keeli's life. When people said "it could be worse" I'd get so angry... But it's true. We have her, she's still Keeli and hasn't changed a bit. It was me who had changed. I was the one that couldn't see past diabetes. I was the one that was causing myself all the fear. I went to the classes, learned about food, carbs, and all that stuff that really you just need a good book to learn from. The classes are a nice offer but taking them so early after your child is diagnosed is too much info overload. The fact is parent of a Type 1 are learning how to keep our children alive. Every child is different, their bodies are different and react different to foods and absorption... The key is to find your own way. We are still learning and with this disease I think will forever be learning. It's hard in the beginning poking your little one, and giving them shots, making their little fingers bleed..changing their food etc. until you realize that all those pokes and shots and changes are whats going to keep them healthy and thriving and alive. No, insulin is not a cure, but it's all we have right now. Insulin in my opinion is life. I'm finally OK. Sure I still cry but not as often. I think about her future and how things will be for her. I think about will she have children. What will she be when she grows up, will she be discriminated against, will she have insurance, will she find someone who loves her enough to be willing to take care of her if she has a bad day. I think about driving, and college. It's overwhelming but normal to think about all of these things. After all diabetes or not they would all still be something I'd think about. I believe Keeli will live a long healthy life. I hope since she has to endure this disease that she uses it to spread awareness and helps others one day, then there would be a reason for it. Right now I still don't see a reason. I hate the disease and I hate she has it. But now I can take that breath I've been holding for so long... Life is better.
We made the decision to hold Keeli back from starting kindergarten until she turned 6. We had several reasons and I haven't regretted it at all. She needed to go to her well check up and she had to get her last 3 booster shots. She had gained a little weight but not much. Nothing new for her she's aways been little. We took the pee test and the nurse came back in and asked us to take 1 more because it came back with sugar in her urine. We did another one and I remember thinking to myself what does that even mean. I didn't know anything about it. I probably thought about what she'd had for breakfast that morning. The nurse came back in and told me, "this is strange, no sugar this time"... must of been a defect in the test. I said ok, great and we were on our way. She was so excited about starting school. I was a wreck but I knew I was only 5 minutes away so I could go and eat lunch or help out if the teacher needed me. School started.. For the most part she did really good. Her teacher loved her and I loved her teacher. Keeli did cry a lot. She gets her feelings hurt easy. She didn't want to ever miss a day but she really would of liked it better if I was there at school ALL the time. She got the typical viruses kids get from school... I did notice she was more tired but really she was on a routine and had busy days with waking up early. Life was good... but that urine test for some reason just wouldn't leave my mind. I finally decided to look it up. I needed to just see the what if's... had it of come back again with sugar. Type 1 diabetes.. there is was big bold black letters. I read and read and read. I brushed it off and thought thank God that test showed no sugar. Then I felt like everywhere I turned I was seeing or hearing something about Type 1... At the store, would you like to make a donation for Type 1 diabetes? Nick Jonas was big, There was an episode on the disney channel about a kid with type 1... Then the Apprentice, I've not watched that show since the first season. But there I sat obsessed watching Bret.... What was the deal with all this Type 1. I started feeling like it was a sign. I really started getting scared. I did more research and I was angry that Keeli's pedi office didn't insist on one more test or have us come back another day that week. If she has diabetes this is serious. I got so angry at the office I ended up calling them and telling them I wanted all her records and that I wanted to change pedi's. I had been frustrated at them for a long while now, (a whole other story) but this would of topped it off. This place was literally a 2 minute drive from our home and I've used them for 18 years... But something was telling me to make that change. So I did.... I found an office that I had heard great things about and told them I was searching for a new pedi but with insurance Keeli wasn't due for her next visit for several months. I told them that was fine and she was fine, BUT I wanted her tested for type 1 diabetes, just to ease my mind. I explained to the lady on the phone about her first urine test and how they should of done a 3rd to rule it out... She agreed and set us up an appointment... months in advance, but that IF anything happens to just call and she'd get us in. She acted a little shocked about my request for this urine test but she listened to me instead of treating me like I had no clue since there weren't any symptoms YET. I told my husband that I called and found Keeli a new doctor, he wasn't surprised since he knew I had been fed up with the old office and then I told him I wanted her urine checked for diabetes... Well, I think that upset him.. He didn't want to talk about it and probably thought I was off my rocker. I just explained that it was simply to make me feel better. We didn't talk about it anymore. Time passed... maybe I was looking for things, and maybe things were really happening. I'll list the Off things that I noticed.
First.. Her pants all have the adjustable waste on the inside... At the start of the year we adjusted it to a smaller fit, through out the school year it expanded... by the end of the school year we were back to the same spot we started off with.
She was hungry.... I would wake up in the morning hearing her rummaging through the pantry..
Her belly started hurting off and on, she called it butterflies.
about 2 days out of the week she would lay on the couch because her head hurt and fall asleep.
All those things may stand out but if you add her day into it those could be excused..
She may be thinning out because she's getting older and losing baby fat.
She's hungry because she's a growing girl.
Her head hurts and she's sleepy because she's having to wake up for school so early, and her eyes just may be bothering her from trying to see the board, or doing school work.
Her belly may be upset because she gets upset about being away from me at school...
There was a reason for each of those things.... Then she got a virus. Keeli throws up pretty easy and she catches any bug she comes in contact with. This has always been the case with her. But she was throwing up more often. After this one virus she threw up 1-2 times a day for a week. She acted like she felt ok, just recovering from the virus.
A few weeks before her appointment. She was looking thinner. She needed a drink ALL the time. She had a few accidents in her sleep. Her belly was hurting even more. She was so hungry. We would go through a day or two and then nothing.. back to normal. It was all so subtle.... A few days before her appointment. She drank a whole box of Capri sun in 1 day. I didn't know she was getting them out and when I'd see her with one I just figured it was one from earlier. I didn't realize it until I picked up an empty box. She whispered something in my ear on one of those days, and the smell of her breath took me by surprise.... It was very different. Sweet, but strong. She didn't smell like Keeli. I looked that up and sure enough that was a sign... but I still wasn't convinced... She as still through all of this acting like her normal self. Laughing, playing hard and having fun. The days before her appointment we went to the zoo.... She loves the zoo. She did great. I got one of those huge refill drinks and we shared it and she asked me several times to carry her that her legs hurt and she couldn't walk anymore, typical kid... I told her no she has to suck it up, but she caught a ride on her sisters back for a while. That night before the appointment I got all my questions ready and was set....
The appointment was at 9am... Keeli ate a small breakfast. 2 slices of bacon and toast. We get lost and end up being 15 minutes late.. I had planned on 15 minutes early because I knew all that new patient paper work was waiting on me... I called to let them know I was lost.. We found the place and as soon as we walked in I was pleased. I met her new doctor. Keeli took all the tests they give you, eye test, hearing tests, weighed her and measured her... Afterwards the doctor came in and talked to me about her weight and height. She had finally gotten taller and she was on the chart (kinda) .4 percentile!!! Then she told me her weight... 38 pounds. she's 6 and weighs 38 pounds.... The doctor told me not to worry that she's fine just small. I told her that is the exact weight she was 1 year ago, and that concerns me. As she was reassuring me and telling us how glad she was to meet us and pretty much that we could be on our way, I interrupted her and told her that my soul purpose for this appointment was for a urine test. She was puzzled. I explained and she told me that she'd be happy to do one, but she did look at me like I was wasting my time. I didn't care.. I wanted to know so I could stop holding my breath. We took the pee sample and waited... I feel like we waited forever... Keeli was playing hop scotch on the tile in the room, and telling me she was hungry.. and all she wanted to do was go home so she could swim. Then I heard her new doctor just outside our door. I told Keeli to be quiet so I could hear what she was saying. She was talking to someone on the phone. Then I heard her clearly, she was talking to the closest children's diabetes center. She called an endo and she was talking about Keeli. She was setting up an appointment. She came into our room and said.. I'm sorry, but you are right, Keeli has sugar in her urine and I've set up an appointment for her and you have to go immediately. Expect her to have to stay at that hospital for up to 3 days. I felt a flood of emotions and I couldn't hear her anymore, I couldn't think, I was numb. I just wanted to be wrong. I just wanted that test to stop my fear and obsession I had with worrying something wasn't right with Keeli. But no, I was right. Keeli was still playing hop scotch, she wasn't even listening. I told the doctor and the nurse that I had to go home first, and get my husband. He was asleep when we left. He works at night and probably doesn't even remember her having this appointment. They told me no, that I really must go straight to the hospital. I lost it. I told them I'm sorry but I will be driving to get my husband that I can't do this on my own and I needed him, we needed to all 3 go through this and understand this together. The nurse told me that I just needed to do what I need to do, and she had to tell me what she was supposed to tell me and she winked at me and told me to go. I knew that was my cue to go straight home grab my husband and head to the hospital.
As we left the office, Keeli kept asking me what was wrong. I tried to stop crying so she wouldn't be scared but this time I couldn't hold it all in. She was hungry we had been at that appointment
for almost 3 and a half hours. It was her lunch time. I'd already drove past all our typical fast food stops all that was left on the way home was Dairy Queen. But what the hell do I order? I knew that diabetes had something to do with your body and carbs but what? I didn't know enough. She needed to eat because I didn't know what else we had ahead of us. I ordered her a hot dog, tater tots and a water. She gobbled it up on the drive home. We finally reached the drive way and then I felt like I was wrong by not taking her straight to the hospital, what if something happens between now and the 45 min drive there? Does it get that bad that fast? I was so clueless and felt helpless. I knew when I seen my husband he was upset and had been crying. He told me he was sorry for no listening to me when I tried to talk to him about all of this a few months ago, but none of that even mattered anymore to me. All I wanted was answers and the see the endo. We were on our way....
After being late (again) we finally reached the children's clinic. This hospital is too big and confusing but thank God for a friendly staff. We met with several people. Keeli had to have her blood drawn for all these tests and we talked to the Dr that was there that day. He has had diabetes since he was 2 years old. He is a sweet man and I felt good knowing there was someone who has LIVED with this disease that still looked healthy. He talked and talked and then he said... She will need 4 shots a day... 4? I thought does he mean until she gets better? No, every single day for the rest of her life. 4... That was it. That's when it hit me about as hard as anything could in my entire life. Keeli is a Type 1 diabetic and she will need to be treated for the rest of her life. Why? What caused this? What did I do wrong? Is she going to live? Is she going to need some organ transplant in the near future? Is she going to be OK? All the bad shit that I read on the computer flooded my brain. This is impossible. She looked at me while I was crying and asked me, why are you crying mama? I'm going to me ok. Is your mind capable of absorbing all the information they throw at you at the very same time you are grieving over a diagnosis of your child? NO!! It's not. I can say we are one of the lucky few. Keeli wasn't sick enough to have to stay at the hospital we got to take her home that night. We were on our on. I was scared to hurt her and I'd cry when she'd cry. Everything about those first couple of weeks were unfair. A horrible dream that I couldn't wake up from. Then one day reality sunk in and I realized this was life... Our life, Keeli's life. When people said "it could be worse" I'd get so angry... But it's true. We have her, she's still Keeli and hasn't changed a bit. It was me who had changed. I was the one that couldn't see past diabetes. I was the one that was causing myself all the fear. I went to the classes, learned about food, carbs, and all that stuff that really you just need a good book to learn from. The classes are a nice offer but taking them so early after your child is diagnosed is too much info overload. The fact is parent of a Type 1 are learning how to keep our children alive. Every child is different, their bodies are different and react different to foods and absorption... The key is to find your own way. We are still learning and with this disease I think will forever be learning. It's hard in the beginning poking your little one, and giving them shots, making their little fingers bleed..changing their food etc. until you realize that all those pokes and shots and changes are whats going to keep them healthy and thriving and alive. No, insulin is not a cure, but it's all we have right now. Insulin in my opinion is life. I'm finally OK. Sure I still cry but not as often. I think about her future and how things will be for her. I think about will she have children. What will she be when she grows up, will she be discriminated against, will she have insurance, will she find someone who loves her enough to be willing to take care of her if she has a bad day. I think about driving, and college. It's overwhelming but normal to think about all of these things. After all diabetes or not they would all still be something I'd think about. I believe Keeli will live a long healthy life. I hope since she has to endure this disease that she uses it to spread awareness and helps others one day, then there would be a reason for it. Right now I still don't see a reason. I hate the disease and I hate she has it. But now I can take that breath I've been holding for so long... Life is better.
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