All by my own self

Emily had a proud moment recently, when she actually was able to test herself one hundred percent on her own!! She has done parts of it by herself, but this time she actually did all of it on her own. I just loved her triumphant smile as she announced, "I did it all by my own self!"

Tummy Time!

We started out with carefully rotating the injection sites, like we were taught in the hospital. Some people even have little charts they mark to make sure they don't mess up their rotation. Then I discovered that being able to say where she got her shot made it easier on Emily, and she was pretty good about taking a little guidance if she was choosing the same area too often. Every now and then I have been asking her about trying some new sites, particularly in the tummy, since I've been told that some kids "like" (isn't that a strange word to use in this context?) it there. Finally one day, she said she'd try it, and YEA!!!! She "liked" it!!!! For a while she never fussed about her shot, and she'd even pinch up the skin for me. She would tell me, "I be brave!" Gradually though, the novelty wore off (or something), and now she's back to fussing. Big time. Sometimes she will plead with me, "please not do this, please not do this!" It is so horrible. People often ask me, how is she with her shots? The easy answer is Oh, she does pretty good. The selfish answer is that I HATE hate hate that I have to give my daughter shots. The honest answer, the long answer that I rarely give, is that it goes in cycles. I keep having to mix it up. Try to find the next thing. For a while it was having her siblings dance or sing or do something silly while she got her shot. Sometimes she'll be really brave and quiet so she can trick the rest of the family into thinking that she hasn't gotten her shot yet. But right now none of that seems to work, and she breaks my heart daily. So now I'm back to searching for the next little trick that will temorarily make it okay.

Emily's Songs

Okay, this is kind of on the lighter side of life with diabetes as well.

Shortly after Emily was diagnosed, there was a song that was very popular, called "Low" by FloRida. It's a real hip hop dance song, and the kids and I loved to crank it up and have a dance party. We also decided that it should be Emily's song, since she had to worry about being "low."

Then, her daddy started singing the Leona Lewis song to her, except he sang it, Keep bleeding blood, instead of keep bleeding love, in reference to her frequent finger pricks. So now "Bleeding Love" is her song too, and she always (with the persistence that only a 2 year old can muster) wants to listen to it every time we are in the car.

You Know you are the Parents of a Diabetic Child when . . .

Here's a nod to the lighter side of having a diabetic child, which I have a hard time acknowledging.

Our monthly diabetes newsletter came today, and there was this list. There were 11 in the newsletter, but only a few were actually funny to me, so I'm only putting down those.

You know you are the parents of a diabetic child when . . .

-- Your husband names his internet gaming character "Lancet" (only sort of funny)

-- Everyone in the family says they are "low" instead of hungry! (Yes, this has happened in my family)

-- You stop calling them "sugar" and start calling them "splenda"

-- The ice cream truck speeds past your house so she doesn't have to answer questions about "how many carbs are in this?" (A shout-out to places that have been willing to be helpful to a poor mom trying to calculate carbs: At Jason's Deli they looked on the hot dog bun package for me; at O'Charleys -- miss that place! -- they brought me a whole binder to look through when ordering her meal; at Chili's they photo-copied several sheets of information for me to take with me for future reference)

-- Your endocrinologist is in your family picture. (kind of funny -- my diabetes educator who taught us everything we needed to know is the one I feel very fond of and think of her as a bff although I am sure she hasn't thought of me again since)

And, my personal favorite, although this hasn't happened to me personally yet:
-- You have no probelm asking your child if they are "high" in the middle of a public place

Wickedly Low

Here is the story of one of the scariest moments of my life. About a week or so ago, sometime in the morning between breakfast and lunch, Emily got a little fussy. I ignored her for maybe 10 minutes, at which point she came walking toward me, and stumbled. And fell. Face forward. With no effort to catch herself. And then just lay there wimpering. I said to Justin (12 yr. old brother), what just happened? And we both said, is she low? So I rushed her into the kitchen, and with shaking hands, tested her blood. The monitor just said "LO." So while Justin tried to find the users manual, to double check on how low it has to be to just say "LO" I started force feeding her jelly bellies, the closest fast acting food I could think of in my panic. She kept trying to go to sleep on my lap, but I kept her eating them. 15 minutes later, when we rechecked her, she was still only in the low 40's, so we kept feeding a little more fast acting, and then got her going on some longer acting carbs. 15 minutes later she was back to normal.

I've been a little more jumpy about her going low these days. I keep asking her: do you feel low? or: how are you feeling? or: are you sleepy because it is naptime, or because you are low? This morning she didn't want to get tested and eat breakfast (I think because she didn't want to get her shot -- we are, regretably, going through another "hate shots!" phase), she wanted to go for a walk first. She stood by the door with her hand on the handle, and said, "I not low! I pwomise! I NOT low!" I still tested her though. And she was right, she was 242. Which if you don't know, is high.

Touching Everything

I realized today how much everything is touched by Emily's diabetes. In some ways I feel like her being diabetic has taken our family and swallowed it whole.

Of course, days go by, and it is pretty much routine, and I just don't let myself think about it . . . it's always there, and it has become a part of the fabric of our lives, but I don't notice it much more than all the other threads, like changing diapers, and folding laundry, helping with homework, driving kids to and from, checking my email, feeding the baby . . .

Then today as I was putting Emily down for her nap, she asked for a song, and as I sang to her, "hush little baby" I stroked her arm. And suddenly I felt so sad I almost cried, because I knew that this was the tiny sweet arm that I have poked a little needle into so many many times in the 7 months since her diagnosis. At that moment it felt like her diabetes was a tangible thing, pressing against me. Not one thread running through, but a shroud dimming all the other colors of my life.

My life. I feel guilty for even thinking of it this way, but sometimes I get so tired of the impact her diabetes has on my life. I know that I should feel more sad for her, but I get tired of all the little changes, and the scheduling, and worrying, and the testing, and the shots and I just don't want to have to worry about it all anymore. I want it to go away. But it will never go away. Even when she moves out of my life and builds a life of her own she will be dealing with diabetes and the ramifications of it. Will I worry about her then, feeling then that death hangs just a little nearer to her than to my other children, or will I be able to let it go, let her husband worry for me, know that she can worry for herself?

I also thought again today about how I feel so passionately about Emily. I feel bound to her in a different way than any of the other kids. The shared pain of inflicting hurt and being hurt has molded us together in a special way. In her novel, The Poisonwood Bible, Barbara Kingsolver talks about how a mother always worries the most about her youngest. But even though Emily isn't my youngest, I think I probably worry about her the most, and that somehow gives her a special spot in my heart.

Amazing!

My sweet little diabetic daughter is so amazing! Here are two examples: One night after dinner, her daddy offered her a jelly belly (about 1 gram of carbs, which is negligible), and she looked at him with a puzzled look and said "but what if I('m) high?" (meaning, what if her blood sugars are too high). Wow. Another time at a swim meet, the swimming kids were all getting a treat, and they didn't do a very good job of being discrete with it, so daddy and I were chiding them for letting her see. One of them said, she doesn't want one anyway, right? and she said, "I can't. I [have] diabetes." I am so thankful for her and her amazing attitude. It isn't all easy, but she is such a blessing.

Shots

Here are some random thoughts and stories about giving my daughter her shots. One interesting thing I have noticed as I talk to people (friends, aquaintances, my hair dresser, the person behind me in line at the store . . . I talk to everyone about this these days. Cheap therapy.) about my daughter's diabetes, is that they are always much more horrified by her having diabetes when they realize that she has to get shots.

The first shot
What I mean here, is the first shot that I gave her. It was something that I kind of wanted to put off. Forever. But I knew that once we left the hospital it would be primarily my responsibility, so I knew I had to learn it. I actually purposely did it when my husband was gone taking care of our other kids, so that I wouldn't have the added pressure of him watching. With the help of our very supportive nurse, I drew the insulin up, prepped her arm . . . and then I didn't know if I could make myself do it. But I did. And then I didn't know whether to laugh for the sheer relief that the first time was over, and I had really done it, or cry because I had poked a needle into my little daughter. Really horrible. But somehow a triumph, too. Because now I knew I could take care of her.

I hate you
One of the worst moments of this whole diabetes adventure was the day that my daughter looked at me right after I'd given her a shot and said, "I hate you!" Even though I knew she didn't mean it -- that what she really hated was shots, I still burst into tears. It really hurts me to have to do something over and over that is so terrible that it would make her say that.

This Blog

I've been struggling with how to do this, because I wanted to tell it as a chronological story -- but blogger doesn't easily work the way I want it to, namely, putting the newest post at the bottom instead of the top. For the first three posts, I tricked it into doing it that way, but I can't decide if it is worth it. Plus, every now and then a little story pops into my head and I want to blog it, but it isn't in order of the story that I am trying to tell, so I don't let myself do it. But the whole point for me of doing this at all is to put all my feelings down -- as I'm having them, not when I catch up to it in my storyline.

And now the baby is crying furiously, and I haven't even had time to type anything of substance yet. Which is why I can't get the story part down quick enough to catch up with the things that I am feeling right now!!

The Beginning

My son wants to know what I mean by silver linings, so I'll start there. He'd never heard the saying before; my definition to him was "the good thing inside the bad." And that's what I mean -- inside of the bad stuff going on, there's always the good. The bad stuff is what I find the need to write about, but I have to remember that the good stuff is there too, or I'll go crazy!

Thirst

So, my diabetes story starts with thirst. Incredible thirst. My sweet little two year old daughter so thirsty that she would drink anything, anytime, anywhere; and peeing through 5-7 diapers a day, and waking soaked in urine every morning; and me knowing, knowing that this was really wrong, but not able to make myself do anything about it because I was 8 months pregnant and in the middle of a move. A my-husband-has-already-moved-and-I'm-showing-the-house-and-finding-a-new-OB-in Texas-and-mourning-the-move-away-from-friends-and-trying-to-wrap-things-up-in-Tennessee-and-I-feel-so-stressed move. I guess I was kind of wrapped up in me . . . for weeks I was terrified that my baby would be born while I was in TN and hubby was in TX. Then it got close enough to the move that I was terrified the baby would be born in the 10 hour drive down to TX. (Can you say "rural Mississippi"?) And anyway, all she was doing was drinking and peeing. We all drink and pee, right? So how bad could it be, right? But it was pretty bad. She was also, un-noticed by any of us, losing 10% of her body weight. Okay, so I did think she looked thinner, but I thought she'd just grown taller. And her eyes looked so big on her face, but why would I think that they looked so big because she had lost her sweet little baby cheeks? yeah, so I'm almost crying remembering how stupid I was not to know. How does a mother not know?

So, it began with thirst. An insatiable thirst, while her body slowly ate itself because it couldn't process her foods. And the silver lining is that even though I ignored that mom's-gut feeling for at least three weeks, we drove her in our car to Texas Children's Hospital, and she wasn't rushed there in an ambulance.

Diagnosis

But in the end, I think that it was best that she was diagnosed in Texas. Because we live an hour and a half from Texas Childrens Hospital, and her care there has been phenominal. And we didn't have to worry about transferrring her care from TN to TX. And our baby was born first, so I wasn't having the baby at the same time as the 2 year old was being diagnosed. Although this was only separated by two days!

So here is the story.

On March 5 at 12:45 am, my precious baby girl was born. That was a Wednesday. Thursday afternoon, we were discharged, but were told that we needed to take baby in to the pediatrician's office for a weight and bili check the next day. During that very routine check (everything fine with the baby), we mentioned, oh by the way, we need to make an appointment for our two year old, who is very thirsty and peeing all the time. RED FLAG. They wanted to see her and do some tests that day. And they found such high levels of sugar in her unrine that there was no way it really could be anything but diabetes.

So the doctor is telling us that she most likely has diabetes, and that we need to get in our car and drive to TCH, and do we have any questions, and we are looking at him like deer caught in the headlights. So he talks some more, trying to tell us what the hospital stay will entail, and that we should pack for a few days, and we still stare. Finally, my husband says, "you mean, we have to go tonight?"

That evening we pack all 6 kids (yikes, still not completely used to that 6 kids thing) into the car and drive to Houston. Luckily (that silver lining thing again . . . see?) we used to live in Friendswood, so we drop the four oldest off with two wonderful families who immediately said not just "yes, bring them over tonight," but "thank you for thinking of us" and "what else can we do to help?" And then Mom (that's me), Dad, brand-spanking-new-baby, and sicker-than-we-ever-guessed two year old head off to the TCH ER to begin our adventure.