My family, musings and life in the turtle pond

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Just for today

Can there be dinosaurs in heaven? Please?

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When I go to heaven, can there be dino-sours?

This was not a conversation I wanted at 4:30 on a Monday morning. Honestly I didn’t want to be awake at 4:30 in the morning. I was scheduled to start my day an hour later.But with seven children,one who is severely medically fragile things very rarely go as planned. Actually, lately, nothing has been going as planned. But  those issues are other blog posts. Back to Nadav and the dinos

Nadav is dino Crazy!He has dozens of plastic ones, books about them and makes them out of origami. (He’s also an origami fanatic). When he goes to the hospital, they put dinos on everything they can put a sticker on. He even has a giant stuffed dinosaur that’s nearly as big as he is that he drags…well just about everywhere. And I can’t blame him. I’f I’d had the start in life that he got, I’d be lugging a stuffed dino too. Lately he’s been having more and more issues with treatment reactions.

So at 4 am he started projectile vomiting. He was seriously upset about it. Not because he felt horrible,but because he woke me up. How many kids who are that sick worry about waking up their parents? I got him cleaned up and comforted and ready to try sleeping again. The whole time he just kept signing “I’m sorry.” It was heart breaking really. Right when I put him to bed, he hit me with his real issue. “Are there dinosaurs in heaven?”

I didn’t know how to answer that. “Do you want them?” was the best that I could do at the time. I was sort of in shock by the question. Talking about death with a six year old wasn’t ever something I’d prepared for. We have never actually talked about death and dying. Or that its a very real probability in his near future because of his combination of illnesses.But Nadav was totally sure what he wanted. “there are.”

I hope that he’s right. I hope that whenever he gets to heaven, at least for a while, there will  be dinosaurs.

Could you yell louder, the back row might have missed you outting me.

“Turtle, you could sit on the parenting panel if they don’t show up.”

“Umm, yeah, sure. I don’t good with public speaking though.” I mumbled. I could feel my face turning bright pink. I was still only two months out of hospital after rehabilitation for a head injury.I had a lot of difficulty talking and putting the right words together. I felt okay being in class,but I wasn’t sure that I would be able to speak clearly. But that wasn’t really why I was turning pink and getting way too warm.

The teacher had just outted me. Although I had never really been in (at least not since high school) I also didn’t talk about my sexual orientation or family life openly. Not yet anyway. I was too new. I had only been at city college for two months, off the reservation for a year and wasn’t sure how much I wanted to say.Even though this was a class about serving LGBT families in preschools I wasn’t really comfortable yet. I’d been hurt too many times by so many people that I didn’t know how much was safe to say. I had told this instructor my information in another class as part of an activity,not this class. And this particular instructor tends to be really loud. She can be heard in the back row when she’s making a “private” comment to someone in the first. Oh well, File that in the *it figures* files.

Worried that she would also out my medical status I tried for damage control. “Well, I am a parent. ” Not smooth,but hopefully anyone who had heard would think that’s all she had meant.Fortunately, it didn’t matter. The panel showed up.

As I got more comfortable I did speak more. The next week I talked about the difficulties of adoption for LGBT parents.I did an activity that changed paperwork in preschool programs to include all types of families,and even became more of an activist in my community. But I still felt a bit weird in that class. I would have eventually come out to the class on my own. But I would have prefered doing it on my terms. And the teacher (although we are friends now) still doesn’t realize that she outted me before I was ready.

Turtle:the human(medical) pin cushion

I am seriously starting to feel like a pin cushion! Today I had multiple appointments and it seems like every single one of them involved some kind of needles. I had to have a blood draw that seemed to last for ever, an IV for my pain medications and treatment, and a shot.And My oxygen, but that is a clip, not really a needle.But I am so sensitive to the feeling of it, that it might as well have been a needle! OUCH!

So when I got home, I hauled my hurting body to the chair to catch up on homework, and promptly fell asleep. And slept all day. that was after I got stuck in the elevator,of course! I hate that elevator. Its so heavy that I don’t have the strength to open it, and had to wait for someone else to let me out. Usually I would have taken the stairs,but I didn’t have the energy to climb 3 flights.

I am trying to stay positive,but I am just so tired and worn down.I don’t even have enough energy to keep my sense of humor. I’m really not getting on the “why me” gerbil wheel, but I am having a hard day. I just don’t have anything left to give,and there are so many things that i want to do. Its frustrating that my body is refusing to do the things I want to do;basic things that everyone does to take care of themselves. I knew this was coming, but I’m still shocked about how fast. I’m not ready!!!!!

I have spent most of this evening curled up on my chair, with my six year old in my lap. Lately he’s been spending as much time as possible as close to me as possible.I have to admit its not as close as he’d like sometimes, Since Tadgh or Spikey is usually in my lap, and when they aren’t there’s a lot of medical equipment (his and mine) in the way. But he’s been totally ignoring it and sitting on my feet folding his origami or signing me stories about his days at kinder.While I was asleep, he even sat on the floor and slept too, leaning against me. He always want me in his sight.

Can’t say I blame him. The poor kid’s been through more than any child should, and he’s only six!!!He just got a new feeding tube, and one implant to help him hear. And that was his 18thor 19th surgery that we know about. His bio mom died of AIDS complications when he was just 3. And right now one of his other moms is deployed.I’m sure he knows part of what happened his mom (mama Angel) and might be matching that with whats happening to me. He’s one of those kids thats wise beyond his years.I cry a lot when the kids are asleep,because it breaks my heart what they have to deal with.

*sigh* It’s going to be another tearful,pain filled night. And i hate that. But what I hate more is that its changing who I am so much. I am usually active and fun loving and have a sense of humor. Today I’m tired,cross, bitter  and feel like my ribs are trying tosquash me every time I breathe.

another crying day!

I should have known when I got up today that it wasn’t worth the bother. The first thing that happened was getting locked in the bathroom. Yeah, I had such a bad time with getting my hand to work that I couldn’t unlock the door! Then getting dressed was so hard that it hurt me.I had to ask my oldest to help out with dressing and getting breakfast in me instead of on me.

My pain was so bad that I ended up at the hospital having to get pain shots. I hate having to get pain shots! But even with them, I can only lie on my bed for the  most part.And I had to rely on the kids to do everything for me. Do you have any idea how embarrassing it is to have to rely on your kids? let alone how hard on the kids that it is.

And then I wasn’t able to go to class when I was supposed to be on the debate team.I couldn’t do it! and I hated that. I wanted to do it so badly!!I really love that class. And this is the second activity I’ve had to miss in two weeks!!!!I couldn’t go to my evening class either. I was supposed to take my midterm in my other class.*sigh*But there was no way I would be able to go to a night class.

I have cried so much today that I’m cried out. Its not that I feel better, I just have no tears  left! I feel a lone,and scared and hurting.I have only my kids here right now,and i have to be strong for them.I can’t talk to RY, because we video chatted last week, and we only get one call a month, and only if they’re in a secure area. I don’t want to scare the kids worse than they already are. The older ones are having a hard time handling things as it is, and the younger ones don’t have any concept of death or dying but know something is going on. I hate what I’m doing to them. My sons have already had one mother die, and now they have me here and Ry away until who knows when. I mean she was supposed to come home a month ago, but her deployment got extended(again). When I look at my kids I cry inside too, because in trying to do what was right (adopting them all) I have now put them in the position of watching a second mother die of pretty much the same thing that killed their biological mom.How much am I putting them through? People keep telling me that they’ll be okay and that kids are like rubber bands. But even a rubber band eventually gets stretched too thin.

I wonder how many people really know just how bad things are. I have already outlived my 6 to 9 weeks by 3 months. But instead of cheering each week makes me more and more worried. Because I know now my time is completely borrowed. And how long can that go on? I don’t know why it makes me upset to keep living. Each day is another day that I can see my 5 month old smile, watch my 17 month old wobble (she’s so not even toddling yet). I can cuddle with my six year old, who is just recovering from his something teenth surgery.(we never did get a complete health record for him.) I can laugh with my kids and spend time with my friends. So all of those are good things. So why do they make me cry?

And back to the school Issue. Part of what upsets me is that my medical conditions are starting to make it look like I’m a flake! And I’m truly not. If only they knew how bad I feel about missing a class, how much it ties me in knots. I wish they knew.

I wish they knew exactly what is going on. But I am also not sure what would happen if I do. I work with kids and i don’t want to jeopardize that. So I say what I can. I live in a Positive living building, and work with kids who have parents dying from the diseases that accompany AIDS. I always hope that they will put two and two together. Its cancer and heart failure and the effects of a car wreck  that’s actually killing me anyway, so maybe I can hide behind that. But I shouldn’t have to hide. I shouldn’t have to apologize when I have seizures or I’m in so much pain I can’t sit up. I just want to be treated like a human. And right now I just want a hug. But most people are afraid to, mostly because they are afraid to hurt me. The lack of contact hurts me worse!

Menu discussion at the cafe

The other day I was eating lunch at a cafe I go to a lot. There were two people at the table next to me discussing the menu. But they weren’t talking about the food. The guy was saying “why do they have to put it in your faces.” The Lady responded  with, “It’s not appropriate to shove you’re lifestyle at people.”n

Right away, my ears perked up. I hear comments like this  more times than I’d ever care to. So I did what I usually do. Asked them exactly what they meant, but having a rebuttal to whatever Anti-LGBT comment I expected. Except that’s not what I got.

“The menu. Look at it.It’s disgusting.”

So I looked. Now I’ve been to this cafe many times,but never really paid attention to it. It has a shirtless man with pants that are cut way to low and showing way too much standing next to a rainbow flag. And His pants line and belly button were eye level with either toddlers or kids in strollers.

She was right. It wasn’t appropriate. At least I don’t think it was. while adults wait for their coffee or stand in line, the kids can stare at this picture. I’m not sure that I would want to explain it to my three year old, and we live in an LGBTQ family.I can only imagine what its like for parents that aren’t.

So the three of us started talking. we decided that it really isn’t appropriate to have any guy on a menu posted that low, in bright colors where kids see it all the time. We also got into a discussion about how the LGBTQ community seems to be at odds with itself. On one hand, the ones of us who are trying to raise families and have the same rights as others are trying to prove we’re just like everyone else. Then there are the guys that seem to go out of their way to prove the stereotypes.

In the end, we decided that it was good that we had a dialogue instead of a shouting match, the way it so easily could have turned out. We all talked to the manager about it too. I told him that I had no problem with Pride, I just didn’t want to be represented by an R rated menu. He listened. Last week, there was a new menu with just the flag. and that menu had been moved to a place over the deli, where Its not in children’s faces. I also have some new people I talk to at the coffee shop.=)

So here’s the dialogue questions: Was the menu appropriate? Would you have said anything? would you have even talked to other people in the shop, who were complaining about the menu?did the manager do the right thing?

Fun with Aphasia

Because of my head injury I sometimes have an awful time with words. Sometimes I am reading English, but it might as well be classical Greek. Sometimes its the wrong word or a word that isn’t even close. My poor kids have learned that when I ask for something, for example a spoon, it is usually a good idea to grab several other things as well, in case I was using the wrong word and it wasn’t really a spoon that I wanted. Sometimes, I can’t even find any word, and come to a dead stop mid sentence. other times I will stutter, stumble, do a Porky Pig impersonation or start a sentence right in the middle, because that is the part I remember. I have written some really interesting “free Election” reflection papers, and once wrote an Aardvark plan instead of an action plan. It changed my Curriculum assingment to something so strange that I can’t even remember what it was. I only remember that my instructor pointed out that computers have spell checks. Actually, that doesn’t always help. If  I spell the wrong word correctly, it won’t help me.

Here are some of my stranger Aphasic moments.

“That’s a cute Zebra, Davi.” “Mama, it a tiger. and I’m Isaac.”

Discussing our families on the first day of class at city college. (I think I really confuzzled that particular  teacher for the entire semester.) “I have 6 spoons” I meant kids.    Teacher, “huh” Me, “ummm you know, the like,the,uh things people have in their families.” Teacher “You mean children? ” Me: “Yeah”

On a call to my partner. “All 6 cars slept with me because of the storms.”  Ry. “wasn’t it crowded, with 6 cars? where did the kids sleep?” =P

For some reason I seem to like the words spoon and Aardvark, but have a dreadful time with children, child, or kids. Interesting, since I work in with infants and toddlers!

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