Wednesday, August 31, 2011

And the Award for Most Insensitive Parent Goes To...

When I picked Madison up from school yesterday she was crying.  Like any good mom would do, I immediately ran through all of the horrible things I would do to the person who made my kid cry.

 *Chase down kid, intimidate!*
 *Find out where kid lives, call parent!*
 *Tell kid's teacher, get kid in detention!!!*

I asked her what happened, and she told me that she hated her new school, she missed all of her friends, she didn't know any of the teachers, and she wanted to go back to her old school so she could walk to school and see her friends.

Uh, oh. 

A little background.  Since Madi was diagnosed with type 1 diabetes, school has been a challenge.  She was diagnosed a couple of weeks before Christmas, and her teacher did not have any experience with what happens to a kid when their blood sugar is really high or very low.  I had been getting letters sent home regarding her behavior, and even though the teacher had been told she should have unlimited access to the bathroom, there were written complaints regarding her excessive usage of said facility.  Her confidence in school had plummeted, and I was struggling to decifer the ins and outs of a 504 plan written by the school for their convenience, rather than for Madison's protection and education.  There was frustrated phone call after frustrated phone call, and both the office staff and myself were at the end of our ability to cope.  Our district is tiny, and as a result we do not have individual school nurses.  Because of this, the secretary at her school was delegated the responsible party for her management at school.  The secretary did not have experience with this disease, so was rationally a bit afraid.  She was the one who had to administer shots in the beginning, until Madison was comfortable doing it herself. 

Because of the fear of the staff, combined with my frustration at not being allowed to manage her diabetes the way I felt it should be managed, we hit a breaking point near the end of the school year.  Madison was no longer communicating with the teacher or the staff, even leaving her meter home for an entire day without telling anyone.  It was a mess.  She was intimidated, I was frustrated and scared, and the school had shut down communication. 

I knew something had to change, so I did what I felt was the best thing for my little girl.  I got her transferred to another elementary school in town.  Yes, it would be inconvenient to drive her every day, but what is more inconvenient than a hospitalized 9 year old with complications from diabetes?  Sure I would have to start over with the staff and teachers, but I felt like my year and a half of experience would help guide me in the right direction with the new school.  I had thought of everything.

Except...I hadn't.  And here is where I will be awarded the Most Insensitive Parent of the Year Award.  I honestly never considered what Madison would think of moving to a different school.  Yes, I thought that it would be easier for Madi to talk to a group of adults she wasn't already intimidated by.  I knew it would be better for her to have the benefit of the staff not having a preconceived idea of who they thought my daughter was.  But I didn't stop to think that I was moving her to another school, away from 4 years of friendships and memories.  I didn't look back at my own move in the 5th grade to a new school and remember how hard it was to leave my friends and the routines I was familiar with to be the new girl in school.  I remember it being not so great.  I remember never making friends in elementary school quite like the ones I had back at my old school. 

In fact I never asked Madison what she thought about it, at all.  Not even to reassure her that the new school would be great.  I just went about my agenda, making her life better...

I know I'm doing my best here as the mom of a D1 kid, but sometimes I feel so inadequate.  This disease has changed Madison's life, and it has changed me.  Every time she asks me if she can do something, there is a voice screaming in my head, telling me to just keep her close, make her stay home, keep her with me where I know she is safe.  I tell her no so often that sometimes I feel like an evil dictator.

M:  "Can I go to my new friend's house?"
K:  "Um, well, friend's parents don't know anything about diabetes, so you can't just go over there.  I'm really sorry!"

M:  "Church friend invited me to a birthday party at Carl's Jr., can I go?"
K:  (anurism threatening as visions of french fries and birthday cake slathered in evil sugar frosting float before my eyes) "We...uh...have plans that day!  Why don't we get her a card and drop it off?"

M:  "My friend's mom wants to know if I could have a sleepover at her house?"
K:  (now faint)  "No.  Sleepovers.  Ever.  Infinity!"

M:  "Can I walk to school tomorrow?"
K:  "School?  Walk?  Hehe...wouldn't you rather ride with me?  Most kids think it's cool to ride in the car with their moms to school!  Besides, it will probably rain...and you wouldn't want to walk in the rain!"

M:  "There is a swimming party at the pool, they are going to have pizza, can I go?"
K:  (Are you kidding me?)  "Oh, Saturday?  Gee, we'll talk about it later..."

Don't even get me started on things like school birthdays.  When your kid is a diabetic, it feels like there is a birthday every other day, and there are always cupcakes.  Lots of cupcakes...covered in four inches of frosting made from pure sugar, enhanced with sugar sprinkles and dipped in extra sugar crystals, just in case there was a speck of cupcake not covered.  Oh, and the cupcake wrapper is made of sugar, too.  And what do you get to say to your kid about all of this? 

"I know you want to eat a cupcake, like all of the other kids are doing.  I know you don't want to sit there and watch while everyone else gets frosting all over their faces and chocolate on their fingers.  I know you want to be like everyone else.  But please, p l e a s e, PLEASE, bring your cupcake home with you instead!  Please expose yourself as different by putting your cupcake on a napkin at the back of the classroom.  Please try not to feel bad as you sit quietly while everyone else eats cookies and drinks punch.  Please do this.  And please don't hate me for making you."

It seems sometimes like there is no balance for me.  I'm going to have to make her hate me sometimes, and I can't apologize for it, because I have to keep her healthy.  I have to give her the best opportunity to make it to a long and healthy life, and there are times when it makes me feel like a bad person.  And there are times when I know I should let her be a kid first, and worry about the diabetes later...but it is so hard to turn off the voices in my head pushing for complete control over this stupid disease.  Where is that line?  When do I let her be a kid, and when do I charge ahead, banner flying, to defend her health at all costs?

So, as she sobbed about hating her new school, I realized the person I was gunning for was sitting in my seat.  What do I do now?  I know I have done the best I can do for her, but I also want her to be happy.  I forgot to let her be a part of her own life for a little while. 

Granted, even if I had asked her about the whole thing, and she'd told me she didn't want to switch schools, I probably would have spent a little time explaining the situation to her and then I still would have had her transferred.  But I still feel bad about not talking to her about it. 

There you go.  This is what is going on in my life right now.  At any given time of day, I feel overwhelmed by guilt over what I can't do for her.  Or I feel like a momma tiger, ready to pounce on those who get in the way of me protecting my daughter.  Or I feel scared that there is nothing I can do to protect her from the horrible things she gets to experience because of her diabetes.  I'm sad that my 9 year old knows how to draw insulin into a syringe, and give herself a shot.  I'm sad that she knows what carbohydrates are, and has to count every single one that goes into her mouth.  I feel bad about telling her she can't have the free cookie the lady at Albertson's handed to her, even though her three brothers are already eating theirs.  I'm sorry she has to be such a grown-up.  I'm sorry I have to punish her for drinking chocolate milk without telling anyone, and not taking insulin for it, and I'm sad that she is angry with me about it.  I'm scared that all this focus on food will make her develop an eating disorder, and a poor body image.  I'm afraid she will grow up hating me because of the things I have to do to keep her safe.

Is there a lesson here?  Someone please tell me they have an answer, or some good advice on how to be her mom and her nurse, advocate, protector and evil overlord?  How do you handle the balancing act?


At 7:18 AM, Blogger Debi said...

Hey, you- do you want to talk? I'm a oretty good listener :) call me-503-635-8316 Debi Martin

At 5:43 PM, Blogger Melanie said...

First off, a couple notes: actually three. Dude, three of your kids aren't listed on the blogg-o!! LOL! N-E-way. Having a "special" kid sucks. It's just going to be hard. So you probably should have talked to her about the new school. But even then, she could have just as well come home from the old school crying her eyes out too! She will adapt and won't hate you for watching out for her.
as for the parties, ugh. I don't know what to tell you. That will get better as she gets older and is able to monitor herself better (and you'll be able to trust her more). As for sleepovers. No way. I wouldn't let my kid do a sleepover even if they didn't have diabetes. Think of all the awful things you did at sleepovers. Not a good idea. Our kids won't be going to them (unless sleeping over at a family member's house). So let yourself off the hook for that one.
And don't hate me, but you'll just have to let go. Trust your instincts, trust her, trust God, and don't beat yourself up. You weren't meant to go through life feeling bad for trying your best to do what you think is right. Heavenly Father means for us to be happy. And you can do it! and I'm way impressed with you and Brian. You are wonderful parents! Love you!!

At 6:06 AM, Blogger Roy said...

You are doing a great job my beautiful daughter! I love you and I know that you are doing a great job with your kids. If you don't protect them - then who will? You are making correct decisions, decisions made out of love and a hope for your childrens futures. I have all of the faith in the world in you and in your abilities as a mom. Love you! Dad


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