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?

Monday, January 31, 2011

Waiting, and Hoping.

Waiting for the nurse to come take him to the cath lab.
Poor little drugged up baby. Better, though, for getting IV's!

After surgery, look at all those sticky-electrode things! They had already taken some off at this point...they really had him covered.
Sleepy Jackson just before we left the hospital.
Jackson's surgery went pretty well. We arrived at the hospital at 9:30 am to get ready. They checked him in, made us undress him and stuck little electrodes all over his tiny body. Then we waited. And waited. At about 11:30, the nurse came back and gave him some medicine to make him sleepy, and she and another nurse tried to give him an IV. I think I'm seriously going to consider learning how to do it myself. I cannot watch another person poke my poor baby like that and keep missing the vein. I know they are tiny veins. I know it isn't always easy. I still don't want to see you stick that needle into my baby more than once. They finally got his IV in, and told us it would be maybe another half hour, this was 11:45 ish. The fellow and the doc came in to explain the procedure to us, and commented on how fat he had gotten. (Hehe...we have been fattening him up nicely)
We finally got him sent off at 1:45. Then we waited....and waited....and waited, and waited some more. It was close to 6:30 pm when we couldn't stand it anymore, and called the cath lab to see if he was out yet. He had just been wheeled out about thirty seconds before we called. Excellent timing, since we had just about waited as long as we could wait...especially Connor! We sat with him and began the wait for the doctor to come and see us. Jackson was still asleep, and just kept on sleeping while we waited. More than an hour later the doctor finally came in to talk to us and let us know that everything went well. I had been watching the monitor, and his Oxygen saturation level was 94-96. The highest I've ever seen it.
When he woke up from the anesthesia, he was pretty freaked out and kept crying. The nurse kept poking his head in and telling me he had to be kept calm for the next six hours. Do you know what it is like to try to calm a baby who is hysterical from anesthesia? And seriously, I was doing everything I knew how, and he was not calming down! Finally he fell asleep again, and didn't wake up until the middle of the night.
We got to take him home the next day. Ever since the surgery, Jackson has seemed a lot pinker. We really love him, and are so glad he is doing so well. His cardiologist explained to us that he could proabaly do the catheter surgery once more, before any other surgical interventions which will be forthcoming.
CRAZINESS! We are just happy he's okay.

Thursday, December 16, 2010

Clogging Up A Storm!

Sooo, I've been to a lot of dance recitals. I've been to a lot of choir concerts. I've been to a lot of general performances, and I can tell you that it is often boring and tedious. But I have apparently been denied the glory of a clogging recital. I loved it! I loved every number! Even the little tiny ones who couldn't remember their choreography were so cute that you didn't mind.

Anyway, here's a little bit of Madison cuteness to make you smile. We can't wait for the next one!

Monday, December 06, 2010

A Year

One year ago today our lives seemed a whole lot less complicated.

One year ago I had never heard the words ketones, lantus, humalog or ketoacidosis.

One year ago I had never given anyone a shot. Madison hated shots. In fact, I recall a particular vaccination event that involved three adults and myself to give one booster.

One year ago I never would have imagined my seven year old using a lancet on her own finger to test her blood glucose.

One year ago I put two kids to bed with plans to take Madison to the pediatrician to clear up an infection.

One year ago today I hadn't noticed that my daughter had lost nearly 20 pounds.

One year ago today I somehow didn't notice how much water she was drinking, or how many times she was going to the bathroom. I didn't calculate the carbohydrates in every last thing she put in her mouth. I didn't get daily phone calls from the school. I didn't worry about the possibility of her passing out on the way to or from school because of low blood glucose.

One year ago today I also didn't realize what a little hero we were raising. I had no idea how brave she was. I had no idea how strong she was. I had no clue she was smart enough to calculate her own ratios. I didn't know how much I would look up to her maturity and courage.

We love you, Madison. Happy Anniversary. We look forward to many, many more years with you...and are so proud.

Sunday, November 07, 2010

Benji Post

First Day of Preschool
Tricycle Gang

This year's pumpkin pick.

New favorite hat.

I thought I'd post some recent pictures of Ben for those of you who've forgotten what he looks like. Hehe. Poor little guy has been suffering from a bit of middle-forgotten child syndrome. Lately he's been pretty clingy with his mommy, like he isn't perhaps getting all the attention he wants. Can't imagine why.
Well, Ben started preschool in September. We are so proud (and appreciative of the break!). He goes on Tuesday to the Early Intervention Preschool as a peer student. Basically, he spends two hours there talking the poor teachers' ears off instead of mine, and apparently being wildly entertaining in the process. His teacher informed me that he insists on being called Benji, not Ben or Benjamin. And every time I pick him up he is on the mini-tramp, jumping like crazy and yelling his ABC's. Wow. I think I need a mini-tramp.
Ben is really a sweet kid. He is so cute. The other day he told me he wanted to go on a date with me. I took him to the dollar store and to get a root beer float...and he told me, "Mom, we have to hold hands. We're on a date, so we have to hold hands!" I admit that it melted my cold, hard heart a little. And someday, when he is too embarassed to let me drop him off at school, or be seen by his friends...I'll have that memory to look back on.
He loves the babies, and is always trying to "help" me. Sometimes this is helpful, but sometimes it is not as helpful as you would imagine. The other morning I heard one of the babies crying on the baby monitor, but didn't want to get out of bed, so I was ignoring him. After a few minutes I heard a rustling noise, and then Ben came into my room and started rummaging around. I asked him what he was doing, and he said, "I need a pacifier!" He found one, and then went back into his room, where I heard, over the baby monitor, "come on, Jackson, suck it! Just suck on it!" Shortly followed by the end of the crying. Ben then got back in bed and I didn't hear from him for another hour.
Ben loves to ride his tricycle, read books and run from one end of the house to the other. He's learning to do so many things, and we are so proud of him.

Saturday, October 16, 2010

Our Madison

This post has been a long time coming, I know. It has been quite a year for all of us, and I guess it has been harder on me than I care to admit sometimes. Although, some of you might argue with me because you've heard all of my whining.
Last December we were all carrying on with our lives. We were thinking about Christmas. I had just barely found out that I was pregnant for the third time. Brian and I were pretty excited, along with shocked since the doctor told me that it probably wouldn't happen without help this time. We were cautiously planning for the next year with three kids in our house. Brian had just started working on his classes to earn his Master's degree. Madi and Ben were growing and just being kids.
Madi hadn't been feeling well. But it was weird. I'm ashamed to admit that I really thought she was faking most of the time. In fact I was sure there was a math test or two to blame for her stomach ache and general sluggish behavior.
One Friday she woke up and I could barely get her to do anything. The night before she had argued with me passionately about going to bed. She was completely unreasonable. I look back and I remember calling my mom many times in the month before telling her how Madi's mood swings were driving me crazy. One minute she was normal and happy, the next hour or so she would be crying over everything and not making any sense.
I decided to keep her home from school to give her a break from what I thought was just a difficult school year. She complained about her stomach hurting and she was going to the bathroom every five minutes, so later that night I called her pediatrician, who suggested that it was probably a UTI. She prescribed antibiotics and made an appointment for Monday morning. That weekend she alternated between acting fine, and looking terrible. Brian and I dosed her up on Poweraid, thinking we could use the fluids to flush out her infection. By Monday morning she was alright, we thought, but I kept her home from school anyway. I couldn't put my finger on what was wrong with her. She was fine, then she said her stomach hurt, then she was fine, then sick.
I almost didn't go to her appointment. Brian had the car and I would have to walk with both kids. It wasn't far, but I was feeling irritated about it, and thought if it was just a UTI, the antibiotics would clear it up in a few days. But after some internal nudging that became harder to ignore, we put on our coats and headed to the office.
On the way there, Madi did not look good. She had glassy eyes and was telling me how dizzy she was. This was the first I really became concerned. It was less than a block, and she was acting like we'd run miles. At the office, the pediatrician did the UTI screening and found nothing, but the screening for ketones in her sample came back positive.
When the nurse came into the room, she had a look in her eyes that I've come to recognize. It means bad news is coming, and the person who has this look feels very sorry for you. She did a blood sugar test and left the room immediately before saying anything else. The doctor came in to tell me that Madison's blood glucose was over 4oo, and we would need to go to the emergency room immediately, and she would be admitted to the hospital for the next few days while we learned how to treat her Type 1 diabetes.
I wanted so badly not to cry. I didn't actually understand what the doctor was talking about. I vaguely knew what diabetes was, I knew there was more than one type. I knew that it had to do with insulin, and I knew there were some kinds of dietary restrictions for people who had it. At that moment I had no idea what I was going to do, and I was terrified. I remember thinking it was ridiculous to take her to the hospital, she was walking around and nothing was bleeding or missing. I had to walk out to the parking lot, on the pretense of calling Brian, so I could melt down not in front of Madison. I really didn't want to scare her, but I was totally freaking out.
The rest of the first day is a total blur. It involved calls to family members and work arrangements. Several very thoughtful visits from concerned friends, lots of advice that I don't remember a word of, and many, many terrified glances between Brian and I. My dad came up to help us and we took turns trying to remember the diabetic training that was crammed into our heads.

We learned so much in the next few days. Most of it was about diabetes. But the really important things that I learned were these:
-Our marriage is strong. When bad things happen to us, Brian and I really do cling together and give each other the strength we need. During the times when I couldn't take any more, Brian was strong for me. When I felt like I could handle things, it was usually because Brian didn't.
-Our daughter is so brave. Madison is the bravest, toughest kid I've ever met. I don't know if I've ever mentioned this before, but Madi HATES shots. She was the worst one when she and Ben had to get vaccinated. But I watched her put on her brave face when they took her blood and gave her an IV. It broke my heart to hear her talking herself down when she knew they were coming in to poke her again and again. She started testing her own blood sugar less than a month after diagnosis. She gave herself her first shot only two months in. How many 7 year olds do you know who can give themselves a shot?
-We have the greatest families ever. We needed the support and love they gave us, and they were pretty quickdraw with it. Sometimes we didn't know what to ask for, but they knew what we needed, and made sure we got it. (Thank you!)
-We have wonderful friends and neighbors. There were people taking Ben for us and bringing us meals as soon as they knew.
In the beginning I would find her crying in her room when she knew I was coming in to test her or give her a shot. She told me so many times that she didn't want to have diabetes. I told her none of us wanted her to have it, but she did, so we just had to learn how to take care of it. Then I would go in my room and cry about it, because it wasn't fair and I wished I could take it away.
Now we have fewer and fewer of those days. Madison has really grown up in the past 10 months. She has taken control of her management, and it makes her feel good to do her own testing and insulin shots. Brian and I are so proud of her. There may not be a cure for now, but our hope comes from watching how amazing she is. She wants to help other people understand what diabetes is, and she wants to help other people who have it.
As I sit here now, on the other side of what has proven to be the most challenging year of our lives so far, I can honestly say that we are okay with her diabetes. I tell people once you get past the initial learning phase (which we are still in half the time), the thing with diabetes is that it is just a lot of work. And Madison is so great, we have no problems doing whatever it takes to keep her healthy. And honestly, there are many worse things that could happen to a child. We are just grateful we still have her, and she is happy and healthy.

Thursday, August 05, 2010

Summer Projects II

Summer Projects

Summer Project #1: Refinish the hard wood floors. I want to point out the stains on the floors that have probably been there since the house was built in 1905. It just bother me that the twins would have to play on these nasty floors.

The first thing I did was move the furniture out onto the lawn. We are now white trash!!!

Everything else went into the kitchen. This is me eating on the piano.
Sanding if finished!!! I can breath again.
After sanding, staining, and sanding some more, and four layers of polyurethane, the floors are finally finished. Everybody say---wow..

During the drying stages of the floors my dad and I installed a plug and cable line down stairs in the basement.

I got these cabinets from a friend that was remolding her kitchen. All I had to do was take them out of the kitchen. They were ugly brown when I got them but I repainted them, put new hardware on them, and added a sheet of wain's coating on the front to make them look new. Notice that there is no crown molding....look down....

Bammm....what a difference a little molding makes. Ingnore the laundry mess.

I found this hutch at the thrift store and thought it would be perfect for the house. Again a little paint and I added the wain's coating on the back.

It has a light, how cool is that!!!