Friday, February 24, 2012

I don't want to belong here!

My mind is full of thoughts but they are scattered, confused and I'm just tired. Some days it just feels like I'm being pounded with rocks. Some days I want to throw them back. Some days I want to duck and run for cover. Some days I just don't care if I get pounded away at by them indefinitely. And then I feel overwhelming guilt for having any feelings whatsoever that would warrant attention or pity. I mean, I'm not the one with diabetes. This isn't supposed to be about me.

We went to an event to learn about diabetes camp last week. They advertised gluten free pizza and drinks free with the event. Even so, I just didn't want to partake in it. I'd have to calculate carbs and draw insulin and give Alex a shot in front of a crowd. And you would think it's a diabetes event so who cares? But I look around and my own insecurities are that someone is going to watch us and what if Alex screams alot and/or bleeds or what if I screw it up somehow. So, we ate ahead of time which in and of itself was a nice time as my parent's offered to cook us dinner at their place which was near the event location. But I feel overwhelming guilt at this choice because again, I've made it so that I am not allowing her to be and do like most everyone else there and just eat some damn pizza. And if I can't handle that at a diabetes event, what kind of loser am I?

So we get to the event and make our way to a table marked by age groups at camp. Everyone is eating pizza. Alex is already pouting about wanting pizza too. I've left her insulin in the car in a cooler because I really didn't want to deal with it and she just ate dinner anyway. I look around and see a myriad of parents pushing mysterious numbers into insulin pump screens while there kids munch away. And even at a diabetes event I feel different because I don't even understand that whole pump thing. And I can't even get Alex to agree to try a insulin pen so how the hell am I ever going to get to a point where we might try a pump. And truthfully, while intelligently I know those pumps will make life so much easier and food events a little less overwhelming, I'm scared to death of having to learn something knew because I already feel like I'm on diabetes brain overload. I guess that's why they don't let new people get pumps immediately. But even here I just don't feel like I'm ready to belong here. Or maybe the better way to put it is I don't want to belong here.

But I have to smile and pretend I'm just fine because that's what I do and I'll just put on a good face for Alex and my mom and my son who's tagged along. Alex is immediately bored sitting at the table watching the kids eat pizza around her and before I even realize it, her brother has grabbed 2 slices of pizza and is eating at the table. And I want to throttle him for doing it because now Alex is really ticked off. And I'm the big loser who doesn't want to deal with it all.

My mom offers to take Alex to the playroom set up for kids while they do the camp presentation. So they go there and I'm left to bite my tongue so as not to make my son feel bad for being an almost 12 year old who just wants some pizza. It's not his fault I am a wimp. He's had to sacrifice a lot in the past 8 weeks.

I don't have much to say about the presentation. It was great. I am excited and hope Alex gets to go to camp. I know it will be good for her and good for all of us. I am so happy they have something like this available and she is old enough to go. My mom returns to retrieve Ben and take him to the playroom. She makes sure to tell him and the counselors that he does not have diabetes - don't poke him with a blood glucose meter in there! Alex is having a blast in there getting her face painted and running around with kids just like her...except they have that pump which she wants nothing to do with.

After the presentation I walk around the tables set up with displays. At one of them, the representative (a mom with a diabetic son) asks me how long my daughter has been diagnosed. I told her Christmas. She asks how I am doing. I want to cry and that lump comes up in my throat. I push it back and say we're just taking it day by day. I want to get out of here. I don't want to belong here.

It sounds completely insane but I keep thinking Alex doesn't have diabetes like the rest of these kids. She just has it a little bit, right? People tell me scary stories of lows. We haven't had that ...yet. She isn't like all these kids I keep meeting. They have these pumps. They all test themselves. Some little kid who couldn't have been more than 5 years old practically stabbed himself with his little poker in that playroom and didn't bat an eye as he guided his blood to his test strip. I've got this kid I have to chase around the house or play a verbal game with her while she delays and stalls getting her blood tested. Many kids we meet so far have had diabetes since they probably can remember (I can't believe how many kids out there are getting diagnosed as babies and toddlers - that's crazy!) I don't think that's better by any means. There is no better in any of this. I should be grateful I had 9 happy carefree years with her without all this diabetes crap. But in some ways I feel like I'm mourning the death of what was so easy just 2 months ago.  I could grab a bag of snacks to take in the car on the way to one event or another. I could tell her to buy her lunch at school or throw anything together in her lunch sack for school. If we wanted to stop at a restaurant and eat, we just did it. If she asked for more fish crackers, I just gave them to her. If she got a damn piece of Valentine's candy, she just ate it. If she wanted to go outside and play with a friend, she just went. I'm not ready for this but here it is. Alex is angry all the time about how much diabetes has altered her everyday life. I'm angry all the time. I have to be ready for all of this. I can't expect Alex to accept this if I can't.  But the simple truth is I don't want to belong here.

5 comments:

  1. First, I am so proud of you for getting all of that out here. I was feeling the exact same way as you just 3 years ago. I held it all in though, until I almost exploded. I remember trying so hard to hide my frustration and anger from Ally, and from everyone else too. I finally began to start feeling better when I started blogging. It was a good way for me to get it out, without Ally being traumatized by it.

    I also remember not wanting to go anywhere that food would be served. It was just so overwhelming at the time. I want you to know that in no time at all, you will be one of those parents pushing buttons on a Pump, or quickly drawing up a shot and going right along with the flow of the event. I promise you will be an expert at the day to day management!

    As far as Alex not being interested in pumping or using a pen, that will all come in time. And when/if she does choose to try it, you will become an expert there too. You can do this!

    P.s. I don't want to belong here either!

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  2. First off, 10 years in I went to a diabetes camp meeting and I left in tears overwhelmed too. You weren't the only mother there saying she didn't belong there, that is for sure! So you are "normal."

    Secondly, diabetes has altered your life now, but sooner or later it will become your new normal. You WILL go out to dinner, you WILL let her play with friends, you WILL let her make her own lunches, and she WILL be testing on her own. It is coming. But for right now, let yourself grieve. Don't feel bad that you didn't let her eat pizza. Next year you will. Right now you are running a marathon you haven't trained for and you are tired, and just want to stop running. I have SO been there. I have had days that I said, "I give up!" But I haven't. And you won't either. Everyday you will learn something new, and one day you will wake up and say, "I am ok." Until then, don't be so hard on your sweet self. Allow yourself to be angry and sad and overwhelmed. You will find yourself growing stronger as time goes by. I promise. I've done it three times, and each time I thought I would just die from worry and despair. But I'm on the other side of all that now. And one day, you will be too.

    Big hugs from someone who doesn't blame you a bit for not wanting your daughter to eat pizza.

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  3. None of us wants to belong here. But it IS the best club no one ever wanted to join.

    I get it. I remember feeling so scared and ovwerwhmed. I remember thinking people were so crazy using terms like basal and bolus and stuff in everyday conversation. I mean who does that?!?

    Well... Almost 3 years later, I do that. It's become my language, too. Even though I resisted it at first.

    Don't beat yourself up. It takes time. You will get there. You will get to a place where you're not scared. Where you know you can carb count anything on the fly. Where you don't feel so different from everyone. I promise. There will be good days and bad days. But one day you will wake up and realize that you're doing this. And doing it well. Don't worry about all the technical stuff and pumps and stuff at first. Take your time. Get used to things. There is no rush.

    Let yourself grieve if you need to. Its ok to feel the way you do. Diabetes DID happen to you because it happened to your baby. And no matter that it's not you who actually has the disease, you are a part of this. And it's ok to feel however you feel about it.

    I wish I could just give you a big hug and tell you that it's ok to cry. That it hurts. And it will get better. It will. It will always get to you at times but it will be different than it is now. Because you will be different. You will see how strong you are. How brave. Your daughter will amaze you.

    Theres so much I wish I could say. Just know that you are not alone. None of us wanted this. But we are in it together. Hang in there, Mama. You can do this.

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  4. I just wanted to thank you all for your kind comments. They really made me feel better just hearing someone gets it. It has helped to just write out things I'm feeling. I have to say that I have been amazed at how kind and nice everyone has been that I have met thus far in real life and online that has walked this path. It truly helps.

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  5. I teared up just reading this. Your much stronger than I was, I crawled into a hole for the 9(ish) months after Justin was dx'd. I didn't talk to anyone who has anything to do with diabetes, maybe because I didnt want to belong here either.

    There will be a time when you realize its okay for her just to eat that valentines candy, its okay to just stop at that restaurant and you will be able to just grab that bag of snacks for the car. REALLY, you will.

    Hang in there. We have all been there and we all get; just always remember that you are never alone.

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