Harlie has her likes and dislikes, just like anyone. Like stickers... She hates 'em. Period. I don't care what's on the sticker - she will not touch it. Even if it has it's back still on. She's been exposed to way too much medical tape in her life.
Another thing she doesn't like is stuffed animals. Ever since she was a wee babe, I've offered her different sources of comfort. You know, a little beanie baby, a stuffed animal (big and small), a blanket, a lovie, whatever. They've been chenille, silk, cotton, flannel, etc. You name it - we offered it. She's never taken to anything to provide her comfort. In fact, the only thing I could ever tell that she liked when she was stressed was to take the bottom of her shirt and wrap the material around her finger. Of course, most of the time when she's in the hospital she's not wearing any clothes. So, that's a bummer.
So, considering the bear was a stuffed animal and a rather large one at that (he seriously is her size!), she wanted nothing to do with him. He came home with a journal, and my assignment was to write about his "adventures" with Harlie at the end of the night, then return him and the journal the next day.
I looked through the journal and saw what some of the other parents had written so far. Some had included photos with happy kids hugging Buster - clearly excited about his presence and this homework. And that made me grumpy.
I HATE homework that highlights Harlie's differences from other kids her age. And it never fails to happen when I am not expecting it - feeling like a punch in the gut.
I tried to have them interact in some fashion - but to no avail. She was more interested in his duffle bag (which she climbed into and fit, by the way), his backpack (which was really cute) and his blanket and toothbrush. I thought, that's fine, maybe she'll ease into playing with him.
I had to feed her, so I put Buster in the chair next to her and told her she had to show Buster how well she can eat. She looked at me like I had lost my mind. Oh well. Can't blame me for trying, right?
After that, she didn't want a thing to do with Buster.
To prove to you how big he really was, here is Murphy's interpretation of him and Harlie...
See? I'm not exaggerating. He's big. I'm keeping this picture forever. I think it's hilarious.
Anyway, at one point I looked over and Cooper had Buster's toothbrush in his mouth! UGH!! It was a real toothbrush - so I'm sure that Cooper isn't the only sibling to put that thing in his mouth. Great.
That night I had a Girl Scout leadership meeting to go to, so I wasn't home to try to incorporate Buster into Harlie's life - or help him have "adventures." And I certainly didn't have time to take pictures, upload them to my computer, then upload them to Walgreens, pick them up and tape them into the journal. And whose homework is this anyway?!
A side story - I got to the meeting and saw someone that I knew years ago. Back before Harlie, I was a real estate agent and worked for a real estate broker and builder. One of my clients was this lady and her husband. They owned land, and we built their house. Building a house on a client's lot was a year-long process and most of the time we got to know our clients pretty well. I was pregnant with Harlie when we finished their house and they knew that things didn't look good for her survival.
So, she said, "How's the baby?" And I said, "She's a Daisy now." And I had to hold the tears back. Wow! Thinking back to how I was then - I was a working mom, we were a TWO income household (wowzers!), and we had no idea what was ahead of us. So much has happened in the last 5 years. It's really hard to believe when I think about it. We are so, so lucky to have her!
Then, I came home at 9ish - I had not eaten dinner (which equals a really Grumpy Christy), and instead of being able to blog or do whatever I needed/wanted to do - I had to make up stuff (okay, embellish) "adventures" to write in Buster's journal. I asked Brandy (she watched Harlie for us that night because Tom had a Cub Scout thing for Murphy that night, too) how Harlie did with Buster that night. She said she wanted nothing to do with him. She would ask Harlie if she wanted to brush his teeth or put him to bed and she would say "No."
Fine. Whatever. Out of all the things I have to force on Harlie - Buster is not going to be one of them. Besides, I wouldn't win anyway. There's very little you can force her to do.
Then, about 36 hours later - Harlie got sick. Coughing terribly, looking like crap, and clearly feeling miserable. We were up so many times during the night suctioning her (something we rarely have to do anymore). One of the problems with Harlie is that she doesn't run fevers. Even when her jaw was infected, or her back was infected, she never ran a fever. Those infections should have caused some hellacious fevers! This worries me, because a fever is your body's way of fighting infection and a good way for parents/doctors to know something is going on.
She also had something going on with her skin and the area around her g-tube. It was looking worse, despite all our efforts. We tried numerous kinds of creams, and we changed her g-tube, thinking there was a leak that allowed some of the acids from her stomach to be irritating the skin around it.
So, since I was meaning to take her anyway, I went on ahead and took her to see her doctor. He put her on an antibiotic that he thought would take care of both her skin stuff (he didn't know what the spots were) and her lungs.
She stayed home both Thursday and Friday and missed her physical therapy and speech therapy sessions on Thursday. Over the weekend, her coughing got worse and she coughed up blood all Saturday and Sunday. While that's not terribly uncommon for trached kids, it is still unsettling nonetheless. And then the antibiotic caused her to have diarrhea. Of course. Poor kid. Luckily that seemed to balance out after a few days.
Monday was a school holiday and to give her more rest and since I didn't think she could handle wearing her PMV or cap anyway, I cancelled her speech therapy for that day, too.
I sent her back yesterday (Tuesday). She did okay. But she was definitely not her perky self.
So, as much as I hate to do it, I am going to have to consider asking her teacher not to send Buster home with us again. She got nothing out of the assignment except for germs. I have no doubts that Buster gave her whatever cooties caused her sickness. While a typical kid can handle germs (like Murphy and Cooper for instance), Harlie has an open pathway straight into her lungs. It just takes a lot less to make her sick. It would be different if she wanted Buster to come home with her, but she clearly doesn't. And she missed lots of good, useful therapy, too. It's just not worth it.
On Facebook I kind of poked fun of the whole bear assignment. Okay, fine... I called him a "stupid bear."
But that's just my way of coping with Harlie's differences in this case. Murphy played with the bear - and it wasn't even from his class. I bet if she were a typical kid with typical life experiences, she would have been excited, too. But, she's not. It's that simple. No matter how hard I try - I cannot change the fact that she's had different experiences that have helped shape who she is today. And while she's not typical or perfect, I think she's pretty awesome.
At the end of the night, when I sat down to write in the journal I thought, do I tell the truth or do I lie? After some thought, I did something in between. I didn't make stuff up - but I embellished a bit. Harlie watched Monsters, Inc. and during the movie she asked for crayons. She went and got some paper and drew Sully (darn it! I should have scanned that in to show you. He's her best drawing yet!). So, I wrote that they watched the movie and that they drew pictures. I guess I did lie a bit. I wrote that she got him ready for bed and tucked him in his duffle bag (which she didn't) because she's particular about her bed and doesn't want anything in it (which is true). Half lie, half truth. I can live with that.
It is now Wednesday and I'm at school with Harlie, so I'll be blogging some today (I hope). So, more later!
Thanks!
~Christy
1 comment:
I'm sorry to hear Harlie's been sick. Sorry that the bear experience was so miserable. I hate to think it made her sick. I would think one turn is enough with the bear anyway.
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