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Be careful what you wish for.

November 27, 2011 Leave a comment

I write this blog, not as a complaint, but as a possible wake-up call. I’m quite content with my little man and my grief is steadily turning into acceptance over his condition, but if I had control over it, obviously, I would want him to be healthy and disability-free.

A friend’s relative is rather pregnant. She is 34 weeks at the most, with 40 weeks in a full pregnancy. There is some question of her dates, and she has a health problem that will add weight to the baby anyway, so it’s probable that the child is closer to 32 weeks along. As I said, she has a health problem outside of pregnancy and she has been using that in an attempt to try to make her doctors induce. Her doctors won’t, because there isn’t truly anything wrong. I’m sure she has this idea that the baby will come out and everything will be fine and they’ll go home but she won’t have to be pregnant anymore. Anyone that’s ever been pregnant into the third trimester has had thoughts of how they wish their due date would hurry up because they’re miserable. I think that’s natural. Some people take it to the extreme.

I can only speak from my own experience, and I want to again make it clear that I am not coming from a place of sadness anymore, but some of the things I have gone through and my son has gone through have been very painful, physically for him and emotionally for me. It took a long time to get to a place of acceptance and I still falter. But this is what you risk if you have a baby before that baby is ready to come out:

My water broke at 32 weeks 2 days. I was already at risk of preterm labor due to past pregnancies, and I had pneumonia (possibly Swine Flu but I was never tested) that I believe caused me to break my water. If you knew how bad I was coughing, it would make sense to you, too. I probably should have been in the hospital for that, anyway, but I wasn’t. The antibiotics only did so much and I guess it just didn’t clear up in time. I spent the next 6 days on hospital bedrest, away from my other children, tired because the nurses wouldn’t leave me alone, hot because the ventilation in my room sucked, and feeling icky because I wasn’t allowed to shower but maybe twice. In that time, I was given steroid injections to help develop the baby’s lungs. Even with those, the neonatologist didn’t expect him to breathe room air.

After as natural of a labor as you can get in those circumstances, my son was born at 33 weeks 1 day, weighing 4 pounds 1 ounce and having a length of 16 inches. His apgars were 9 and 10. Seemed pretty positive to me! I figured we’d get him home in a few days, once he put on a little more weight and showed the doctors that he was fine. It was hard to leave him behind in the hospital at first, but surely I could handle a few days.

Wrong. A few days turned into 6 weeks. He took until the very end to get the hang of eating. He had a bout of jaundice. He  had a few vitamin deficiencies. He had to be able to control his body temperature.

Here’s what my typical day looked like for 6 weeks.

At 9:00, I would get up and have breakfast while talking to a nurse on the phone about my son. I’d pump milk for my son. I’d take care of my daughter. I’d wait for my husband to get up. At 11:00, when he was finally up and ready to go, we’d leave the house. We’d drive a half hour to drop our daughter off at one of her grandmas’ houses, then go to the hospital. We’d stop in the cafeteria and eat. We ate a lot of soup because it was cheap and gas wasn’t. I’d spend 3 hours with my son, part of that time pumping milk in the lactation room or at his bedside. Then I’d go get my daughter and race home so I could meet the older kids when they got out of school. I’d pump. Then I’d help with homework, do bathtime, make dinner, and all of the things that a mom would do. I’d pump again. I’d lay down and nap for an hour. Then I’d load up my daughter, because my oldest was old enough to be home alone with two sleeping siblings close to her age but not a one year old. I’d haul her and my milk to the hospital, where my husband also happened to work, and I’d hand the nightly milk off to him. He’d run it upstairs to the NICU, come back, and we’d go home. I’d pump. I’d lay down and sleep for 3 hours. Then I’d wake up and pump. Then I’d wake up at 9:00 and start all over.

In no way did I have it the hardest and in no way did my baby have it the hardest. Out of the 6 babies in our “pod”, he was born the latest and he was the healthiest. For that, I am grateful. I have since attended the funeral of one of the other babies, when he would have been 20 months old. He died due to complications of HLHS (a congenital heart defect). His mother had ten times the fight I did on a daily basis, and the little guy that passed on was a twin so she had another preemie on top of it.

At any rate, after 6 grueling weeks, we got to go home. Most things were normal from that point. The only thing out of the ordinary was how clingy my son was to me. I had a clingy baby or two before him but he didn’t want any part of anyone, not even his father, for seven months. I don’t mean just not being able to hold him, either. He wouldn’t even let him sit next to him. There was no putting him down, ever, unless I bundled him in a snowsuit and tricked him.

Outside of that, everything was okay for a while. He was even ahead physically for a little while. Then it started to taper off. At first, it was his prematurity that got blamed, but when he still wasn’t sitting up at 11 months old, I called the NICU follow up clinic to ask for help. She referred us to early intervention and we started therapy.

He has also since had an MRI ordered through a neurologist and he was diagnosed with periventricular leukomalacia (PVL for short) which is the leading cause of cerebral palsy, and thankfully that is the only complication of the disorder that we have experienced, except for a possible connection to his ‘lazy eye’.

Here is a list of doctors/professionals we see regularly:
Of course there’s the pediatrician
neurologist
ophthalmologist
orthopedic doctor
ENT (though we haven’t been back to this one since his adenoids were removed)
physical therapist
developmental therapist
occupational therapist
vision therapist
We have a speech therapist on our team for consults but haven’t needed her yet.
We also see an orthotist every few months to have him fitted for various orthopedic appliances

Currently, he’s on baclofen as a muscle relaxer and that has to be given three times a day, orally. He gets botox injections in the backs of his legs every three months. He wears glasses. He wears articulating AFO’s to help position his legs and feet better. He wears derotation straps that pull his toes out, to keep him from being pigeon-toed. He has a walker. He gets Kinesio tape put on his back every two weeks, and he wears it for 4 days at a time. He also has special orthopedic shoes, simply because it is so very hard to find shoes on the first try that work with his AFO’s, so we cut to the chase and got him shoes we knew would work.

Let me stop and tell you what it’s like to get him geared up in the morning. First, we have to get him bathed, dressed, what have you. Then we have to find him socks. Laundry has never been my strong suit. So once we find socks, those obviously go on his feet. Then he wears little leg warmers over those because the socks aren’t long enough to go up the length of the AFO. Then the AFO’s go on. Then they come off because I realize I put them on the wrong feet, and I try again. Then the shoes. Then they get tied and double knotted. Then he tells me “I want my belt on,” which is good because he’d get it anyway. I take the derotation straps, attach the belt part to his waist with the velcro, and straighten it out. Then I wrap it three times around and down his left leg, and snap it to his shoe. Then I wrap the other one three times around and down his right leg, and snap that to his other shoe. Now he won’t step on his own toes. Then I put glasses on him, and we’re finally ready to continue with our day.

My dining room that once held baby gear now has pint-sized parallel bars, a bench for sitting, the walker, and sometimes something they call a peanut ball, or a wedge for sitting.

When I go to the store, I can’t just put him in the front of the cart. His shoes are too large and he can’t wiggle his ankles enough to get them through the holes. Even if we get him in, getting him out is even worse. So, as if a two and three year old in the store isn’t hard enough, I have to try to juggle him into the back of the cart and then his sister sits in the front. The people that work at the Kmart nearest to me are always so kind as to give me a look and then play the recording saying how dangerous it is to put your child in the back of the cart. I’m aware of that. There’s not much else I can do except leave him at home and that’s not an option either, so if you want my money, trust that I won’t sue you if I tip the cart over, and stop playing passive-aggressive recordings.

On Halloween, he couldn’t go to doors with his sisters. He had to wait at the bottom of the steps in his stroller and even miss out on some candy because the steps started too far away from the front door.

Despite research stating that rearfacing carseats for as long as possible is best, he can’t. When he’s in his gear, his legs simply won’t work in that position. It’s not a matter of hanging them over the sides of the seats or crossing them. We do what we have to do, but I know better and still can’t do better, and it bothers me.

I’ve been opened up to a new world of narrow entrances that I worry he won’t fit through someday, the realization that I can’t be there to help him forever, and I don’t even know how much longer I can lift him. Luckily he’s tall and lanky and not a chunky fella or I don’t know what I’d do. These things weigh on my mind, though, because I want him to succeed in life but when you can’t walk and your hands don’t work right, it slows you down.

Do I feel he will walk someday? Yes. Will it be before he does damage to my back? Probably not.

In a few months, he will start preschool. He has always relied on me, from the time he came home from the hospital. Very seldom is he without me. Soon, he will be navigating a school, by himself, despite not being able to use a spoon properly or push a button. This scares the hell out of me.

His adulthood and the uncertainty of what he will face scares me even more. I’m fairly young and in good health now, but we won’t live forever. I am so, so lucky that he is mentally “normal” because at least he will be able to live in society, at least with modifications, but I wonder sometimes about when he gets old. Will this shorten his lifespan because he’s already as stiff as some 70 year olds? Will he be okay? I simply don’t know. I’m just a worried mom that loves her baby.

So now that you’ve read this, if you’re planning to try for early induction via home remedies, first of all, know that most won’t work until the baby is ready to come anyway. However, for the methods that could work, be prepared to possibly accept this as your fate.

Do I love my son any less or think he’s any less amazing because of what he has? No, of course not, but everyday I wish I could go back in time to change this for him. It’s not that I don’t love him as he is and accept his disorder as a part of him, but I’m not the one that has to live in his body. I’m not the one that has to struggle to turn on a light or flush a toilet. He does. Any parent worth their salt would want their child’s life to be as easy as possible. I’m no different.

I’m sure you’re not either. So please keep this in mind. Yes, that child is within your body and it’s your choice to want the child out but your choice affects this human being for the rest of his or her life. Even if it’s something as simple as asthma because of underdeveloped lungs, it’s something that doesn’t have to happen. Pregnancy can be hard and it seems like it lasts forever at times, but in the end, it’s only 40 weeks or so. You can make it. I have teenagers. Trust me. Being pregnant is by far easier than the discomfort a teenage girl causes when she has pms and you won’t let her stay the night at her friend’s house. Tough it out a little longer, for the sake of the child within you that you love.

And if nothing else, remember how I left my baby in the hospital for 6 weeks. If you cause your child to come early on purpose and they spend that time in the hospital instead of below your heart, what’s the point? You don’t get to enjoy that baby. You have to ask permission to touch it. To feed it. To clothe it. To change its diaper.

Or, you could just be pregnant and miserable a few more weeks, and you could have your baby and enjoy him or her from the start.

 

 

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Categories: PVL

Norman Rockwell must have smoked crack.

November 23, 2011 Leave a comment

I said I’d let my readers know about the extra margarine inside the turkey cavity.  I honestly didn’t notice a difference, so it didn’t hurt to stick it in there since it was contaminated by raw skin and couldn’t be used for anything else. The turkey, as well as everything else, was amazing. The company that was eating said turkey was not so amazing.

So I decided I’m not doing the cooking for Christmas. I had husband tell mother-in-law that they should figure out somewhere else to do Christmas for their family when she called to wish us a happy Thanksgiving, and I’m thinking I’ll just put out a cheese and cracker tray for when my mom comes with presents. I’ll throw some soup in the crockpot on Christmas Day, and I’ll make whatever dishes I have to make for my in laws’ get-together.

I can’t think of a single holiday this year that didn’t have some sort of drama associated with it and I don’t see the point in making all of that food if the thanks I get in return is physical fights about racist opinions at my table. If people can’t be in a jovial mood because of the food I cooked, I pretty much cooked it for nothing. I could have just made sandwiches if that were the case.

I know everyone says it’s not a family get-together without some kind of drama, but not like this. Arguing over sports teams? Fine. Dropping the bird on the floor because a kid ran into you? Fine. Grandma falling asleep in the mashed potatoes? Fine. Being pissed off that you didn’t get your grandfather’s watch and you see your delinquent cousin wearing it instead? Fine. This is just ridiculous, though. I’m honestly crushed.

Anyway, all of this was my way of getting around to saying I hope you have a happier Thanksgiving than I have so far. Much love to you all. I wish I could be with you, my secondary “family”, this weekend. I’ll just have to settle for being there in spirit.

 

Turkey Timeline

November 23, 2011 Leave a comment

Today is our Thanksgiving dinner because my husband works tomorrow. My turkey is going in the roaster oven and smells divine. Dinner is planned for 3:00.

I hate blogs that tell you what to do, but my turkeys are always amazing so I’m going to make an exception. Besides, someday my kids will want to know how Mom made the turkey. Here it is.

I bought a 16 pound frozen turkey and put it in the bottom of the fridge Friday. I’m feeding nine people, 3 of which are children. The guideline is a pound per adult and half a pound for a kid. I have two teenagers so they’ve been counted as needing two pounds. If you feed a teenager, you understand. Really, I only need 10.5 pounds but I want leftovers.

The guideline for cooking is 20 minutes per pound, and the guideline for thawing is a day for every four pounds but 5 days later, and there were still some ice crystals inside so 4 days wouldn’t have been enough. I can say, though, that once it’s thawed, you have four days to use it. I figure a week is a safe timeframe if you have a frozen turkey. Of course payday plays a role in that too. I don’t know squat about fresh turkeys so it is what it is.

Anyway, the turkey was thawed so at 8:00, I got up and preheated the roaster oven to 450. If it were in the oven, I’d go to 500 but my roaster doesn’t go that high. Don’t fret. It won’t stay this hot all day.

I removed the plastic thing holding the legs closed. That’s probably one of the hardest parts on some turkeys. I had to cut away some of the fat, and then I had to wiggle and pinch and I finally broke it free. Then I pulled the neck out, set it aside, and dug deep for the bag of giblets. It’s in there, somewhere. If you can’t find it, check the neck hole.

Then you carefully loosen the membranes that old the skin to the turkey. Be very gentle or you’ll rip the skin. I sprinkle handfuls of Mrs. Dash into my other hand after that, though you can use any seasoning blend you wish, and I rub it on the meat, under the skin. Try as best as you can to get into the leg area too but there won’t be a lot of room to move so just get what you can. Then take three pats of butter. Put one under the skin in the body area and one in each leg area. You can use margarine, but butter is better. [channels inner Paula Deen]

You can stuff the bird at this point but I don’t. I use aromatics. This time, it was half an onion, a lemon sliced in half, a stalk of celery broken in half, and a carrot broken in half. Give it all a rinse but don’t worry about removing skin and stems because they won’t be eaten anyway. Then stick it in the cavity. I also used a stick of margarine in there this year because I followed someone else’s advice and tried to grease the skin with it but it didn’t work and I didn’t know what else to do with it. I’ll let you know…

Then take oil – olive oil is best but any oil will do if you don’t have any – and massage the outside of the turkey’s skin with it. When the whole bird is covered and the roaster or oven is preheated, you’ll put the bird in to start cooking. Use an oven-proof rack in the bottom of your roasting pan/oven (I use a small cooling rack that my husband’s ex left behind many years ago) to lift the bird a bit, so the bottom can crisp. Put the bird in and cook…

After a half hour, tent the bird with foil and decrease the heat to 325. Subtract a half hour from your total cooking time, because you just did that, and wait.

A half hour before you’re ready to remove the bird from the oven, take the tent off. Then when you remove the bird from the oven, you’re going to tent it with foil again and let it sit for 30-60 minutes. This will help the juices settle in the meat and not on the platter.

There’s plenty of other things to tackle in the meantime – gravy, dressing, potatoes, etc. – but I’ll leave you to google for those, but this is how I cook a turkey that my family can’t get enough of. That includes my mom and she hates poultry.

 

 

Friday Night Foodie: Thanksgiving edition

November 18, 2011 Leave a comment

Okay, so we’re celebrating Thanksgiving on Wednesday because my husband has to work on Thanksgiving, but I thought I’d share my menu with you (mostly in an effort to let you know I’m still alive).

Turkey
stuffing
mashed potatoes
‘candied’ butternut squash
scalloped corn
salad (my mom’s bringing this)
cranberry sauce
rolls
pumpkin pie (I’m using butternut squash but don’t fret – that’s what’s really in canned pumpkin pie filling anyway)
apple pie
eggnog cake

It’s all pretty basic and at least fringes on traditional. I got a 16 pound turkey on sale for  $12 tonight, along with a duck. I cook the turkey and the duck side by side in the roaster oven, because the grease from the duck moistens the turkey. There’s really only two people in the whole family (a total of 9 of us for the holiday) that will eat duck itself but one of them is a binge eater and the other is a teenager. It won’t go to waste.

My landlord’s wife gave us a stack of butternut squash, which is why you see that instead of pumpkin and sweet  potato. I love free.

My mom doesn’t stand like she used to. She gets worn out and it’s hard on her, so she can sit at the table to cut up a salad, which is why I always have her bring that.

I make my pies from scratch. Same with my cranberry sauce. They taste better that way. The cake was something I saw on someone else’s pininterest yesterday.

The rolls were on the day-old shelf at wal-mart for $1.47.

I think everything else is self-explanatory but feel free to ask if you want to.

I’m excited to cook for the big meal but what I’m really excited for is not having anything in the way of me decorating for Christmas. As far as I’m concerned, when that bird goes in the fridge, Fall is over. Break out the red and green (and blue and silver – we decorate somewhat for Hanukkah too, and no, we’re not Jewish, we’re just accepting of others).

Categories: Uncategorized

Christmas preparations are beginning.

November 12, 2011 2 comments

I just made my little girl’s night by taking a “Springtime” carboard butterfly off my back door. Fact of the matter is, I should have taken those things down a year and a half ago, but I never bothered. It came in handy when her older sister was painting a plaster butterfly and she wanted one. She’s convinced that she painted the cardboard butterfly when she was a baby and she’s flying it around the house.

Too bad Christmas gifting isn’t that simple. With five kids, along with extended families, it can be complicated and expensive. It hasn’t been too painful this year, though.

I spent a large portion of the year signing up for freebies and couponing to get what I could. Wal-mart paid me a dollar to take a shirt that will be given to my mom. I had a coupon for $5 off and I found a winter shirt in that brand for $4. It has been in the closet since June. I also found her a Yankee candleholder and candle on clearance for around $5 in June. I got a free first aid kit that is just a tiny bag with bandaids but it makes a good stocking stuffer. Her boyfriend is getting a movie that I found in the $5 bin at Wal-mart and a gift set of soaps that I won in an internet contest.

I couponed my way into two free bottles of men’s bodywash, as well. One will go to kid 2 and the other will go to my father-in-law. I’ll pick up a bath puff or something to go with my father-in-law’s bottle and I’ll let my husband worry about the rest. He usually gets him things he actually needs but doesn’t buy himself, like socks or t-shirts, sometimes underwear. Father-in-law is close to eighty. He takes joy in new drawers. To let you in on a little secret, we think it’s funny to buy him bikini briefs, knowing my mother-in-law is disturbed by it when he walks around in his underwear with his old man junk in her face. It’s worth it if it costs a little extra.

I plan to make my in-laws a quilt, though, and I’m giving my sister-in-law a scentsy warmer and 3 scent packs. I was the hostess of a party and got a percentage off of my order so it’s basically half-price.  It’s part of a combo pack so I don’t have an exact amount for it, but it’s about $34 worth of stuff, for probably half that. Oh, and there’s a reusable shopping bag that rolls up into a pouch you put in your purse. I’ll give that to my mother-in-law too. It was free.

For kid 1, I have:
a pearl necklace ($8)
2 pairs of headphones (free)
a sewing kit ($1)
a stationary set ($1)
handmade socks ($4 for the yarn)
Her big gift will be an ipod touch, which I intend to buy refurbished from ebay for around $150.

Kid 2:
Angry birds calendar ($5)
T-shirt with some excuse for not doing homework on it ($3)
Billy The Kid dvd (free)
100 piece puzzle ( $1)
bodywash (free)
His big gift will be a Nintendo DS, again from ebay, for around $70.

Kid 3:
High school musical teddy bear (free)
stationary set ($1)
handmade socks ($4 for the yarn)
handmade quilt ($20 or so for the materials)
small padlock and key (free)
I also plan to get her a DS. That’s another $70 or so.

Kid 4:
teddy bear (free)
Barbie ($5)
sidewalk chalk ($1)
handmade quilt (around $20)
She still needs a big gift, which I’m not sure about but I’m thinking I’ll try to score a better kitchen set than the one she has and that may be a joint gift for her and kid 5. Otherwise we’re looking at around $50 each. Stocking stuffers should be easy for her, at her age. I can pick up a My Little Pony or something.

Kid 5:
small tool set ($1)
hand puppet (free)
play-doh ($2)
If I don’t get the kitchen set, there’s  a ball funnel racetrack-like thing where you drop the ball in and it rolls down the track. That was around $35 at Toys-R-Us. I have the spare material to make him a quilt, too, if I have the time.

Hubby wants mortise chisels, which I can get on Amazon for around $35 and I can use a $5 card from swagbucks to cut the cost of that down. I also got him a little portable screwdriver bit set thing for free a few months ago.

That’s the extent of my gift giving, except for making cookies for friends. It almost seems too easy this year. I’ve always wanted to build a stockpile early in the year and never got much of one going until this year but I’m really glad I did. It makes the holidays so much easier to deal with.

Now, if you got through all of that, I have a reward:

My cute kiddo wants you to know that he’s sessy and he knows it.


 
 

Anniversary recap and movie review

November 7, 2011 Leave a comment

We really had a lovely anniversary date. It was nice to spend time alone together. We don’t get to do that nearly enough. My mom watched two kids and my cousins-in-law watched the other three. Actually Kid 1 did most of the work with kids 4 & 5 but we had adults overseeing her to make sure she didn’t let her mind wander into her ipod or something.

My cousins-in-law happen to live in the same neighborhood my husband lived in when we met, so it was a nice trip down memory lane as we went to our dinner destination. We passed the place where we used to go to breakfast every week. We drove down the road that would lead us to the Denny’s where we used to hang out at night. It was really nice.

We had a nice dinner, though it was definitely overpriced. We both ordered the $16.99 pick 2 deal at TGI Fridays, and a mojito. I had the fried green beans, Jack Daniels chicken, roasted veggies, and parmesan steak fries. I couldn’t finish the veggies and left a steak fry because I was so full. Hubby had potstickers and cajun chicken and shrimp pasta, and a second mojito. We managed to not talk about the kids too much and he gazed into my eyes while we held hands, just like he used to do when he wanted to get into my pants when we first met.

I drove to the movie because the hubby couldn’t. We saw A Very Harold and Kumar 3D Christmas. The 3D stuff was really neat. It looked like the snow was really coming down and the smoke rings were coming at us. The movie, honestly, wasn’t that great.

Part of it was that I’ve gotten a lot older since the series started and that kind of humor isn’t as funny to me. The other part of it is that they’ve gotten a lot older too and there’s only so many places they can go with it. Neil Patrick Harris was hilarious as he always is in those movies and there were a lot of funny parts but there were also some parts regarding a baby on drugs that made me cringe. Very tasteless. I really think they’ve exhausted Harold and Kumar and I hope they’ll just let the movies die a peaceful death now.

This movie would be better rented, but if you do, make sure you do it when your kids aren’t around. I don’t care if I see a penis stuck to a pole or Santa delivering a fatty, but you might care if your kids are awake.

Kid 5 did pretty well with being left without us. He whimpered here and there but he didn’t freak out. It probably helped that kid 1 was there. Otherwise I’m sure he would have screamed for sure. We had about 4 hours alone, though, and it was nice to be able to regroup as a couple. Anniversary or not, I think that’s important, especially when you’re parents.

Next year, we’re thinking we’ll go back to the hotel that we stayed at on our wedding night and we’ll just order a pizza. For what we paid for dinner, we could have done that anyway. For this year, though, we had a wonderful time and I’m so thankful for that… even if the movie did suck.

 

Categories: Special occasions

It’s been a year…

November 6, 2011 1 comment

Today is my anniversary. The very first one.

There were no flowers or breakfast in bed. There isn’t even a gift on his end (yet) and I used swagbucks to get him a book with the poem that was read at our wedding because I’m broke.

But you know what? That’s okay.

We’re going to have dinner and a movie later, and he’s working as hard as he can on a laptop desk for me for my gift. I’m a homemaker and it bothers me to use money he earned to buy him a gift, so I earned it myself in credits online.

There was no breakfast in bed because our 10 year old screamed over a mouse before 7:00 this morning and woke us up. He had to get up to help her. I had to snuggle our 3 year old so she wouldn’t wake anyone else up. Then there was fighting over the computer and there was a teenager telling me about her awesome dream and… craziness.

Good craziness. This is our life. This is what our marriage is. This is us. I can’t think of any better way to wake up than in the exact environment we signed onto in our marriage. Okay, maybe a hotel with just the two of us would be nice, but we’ll have plenty of years for that.

So happy first anniversary to the most amazing husband and father there is. Even when I’m at my most annoyed, I’d still rather be annoyed with you than lonely without you. I love you.

Categories: Special occasions