Sunday, February 8, 2015

The inevitable follow-up

Ok, now that I've got everyone nice and concerned, let me just clarify and explain a few things.

1) First of all, Dan wants to make it known that while I was writing that last blog post, he was cleaning our gross kitchen. Dishes are his purview. And it looked amazing by the time I had clicked the "publish" button. The reason we are having a hard time keeping up with cleaning is because we are all sick (except Asher) and it literally takes 3 hours to feed Ezra 2-4 ounces of liquid. More on that later.

But seriously, Dan is amazing.

2) Many people don't believe me when I say I'm not depressed. Please do believe me. I'm not. I know what depression feels like. I am anxious and very worried. I get frustrated and scared and stressed out. But I am not depressed. I am working through super hard stuff, not crying through it in a fetal position in my closet.

3) Ezra does sleep, and usually he sleeps through the night. He is crying less when we put him down, I think because he cries so much through his feedings and it tires him out. He really seems like he is getting well (finally) but he has been on the mend earlier and then gotten sick again. We are hoping for no relapse, and we are hoping that his breathing clears up. We believe this is a huge part of why he won't eat.

4) I am not exclusively addicted to Facebook. Somehow, that sounds more pathetic than being addicted to your computer. I check in on Facebook a lot because I am already on the computer. (I am an introvert and that is how I connect with people. It is what I do instead of talking on the phone or going on lunch dates or something. I can give like 10 compliments in one minute to 8 different people on Facebook.) What do I actually do online? I read articles and research things for Ezra's special needs, or about parenting, or about any topic that is of interest to me. It's like reading the newspaper. I have no interest in "reality TV" type stuff, unless it is about the psychology of people and why they watch it. I also have two books I'm writing, and I work on those... on my computer. So sometimes online I am researching how to write query letters, or finding out if the term "eskimo kiss" is offensive, or looking up paint color names, etc. All of these things are distractions from how harrowing it is to feed Ezra sometimes. Or how tired I am. Or I'm just working. Whatever.

5) The only reason why I want people to "take my children away" is because I feel like I cannot spend the time they need right now. It is very hard to deal with a raspy special needs crying hunger-striking baby at times. I love all of my children and it is sad that I don't have the time or energy to help effectively with homework, or play with them, or talk to them, or make them meals that they won't complain about. Beyond how nice it would be for me to not have responsibility for them for a while to give myself a break, I think of how nice it would be for them to have a break from being around a stressed out messy household. It would be a re-set for all of us. I would miss them, but I've been exposed to stressful circumstances for a long period of time. Honestly, when a friend came two days ago to take Ezra to her house for three hours with instructions to try to get him to eat as much as possible, that was HUGE. She got him to drink 2 ounces of Pediasure, and that was a battle that I didn't have to fight. I was responsible for zero children for 3 hours. While I am with my children, I am usually happy and loving... but my brain is also very full. I think of what their needs are, what I need to do for them. Usually this is fine, but if their needs are high it overwhelms me. I still try to get everything done, it's just harder and more stressful... and more disappointing when I can't accomplish anything. When someone else has my kids (not just my husband who is still in the house with them) my load feels lighter. You know, because it is no longer there. The empty space in my brain is staggering.

6) I did not mean to say that bringing a meal is not helpful. It is very helpful. It means I don't have to go out and get fast food, or spend time I don't have in the kitchen, or feel guilty about anything. What I said was it doesn't solve my problem, and that is true. I wouldn't need meals if Ezra wasn't flipping out about food. My problem is Ezra's attitude towards using his mouth (his philosophy this last month has been "scream, don't eat"). So thanks to my friend Emily and more thanks to the people who will bring me food throughout the month. You are golden. It really does relieve some stress, and I am grateful.

So hey, I'm sorry if I was a little harsh with my delivery. I want you to close your eyes (not yet, read this first) and imagine that you have a crying baby (who should be a toddler) who will not eat. In fact, he has never even exhibited hunger cues, he doesn't know the connection between eating and feeling better. He is the same weight he was ten months ago. Doctors are worried, which makes you worried. His skin looks a little saggy, and his normally cheery disposition has changed. His pee is so concentrated it is brown, and he hasn't had a messy diaper in two weeks. If you even put him in a feeding position, he arches his back like a contortionist and screams with all his might. You know he needs to eat, but he just will not. You have other things you need to do, but you spend all of the baby's waking moments either worrying about him not eating or trying to feed him. You try different methods, different spoons, bottles, syringes, different beverages, different positions. You try to distract with television, rocking, singing, beatboxing, dancing, funny faces, jumping up and down, talking, louder, softer, sweeter, firmer, all at once, nothing at all. You give it a rest, but you have to try again, because eating is important. Sometimes you catch a break and your beautiful baby eats a little bit and smiles. You think this is the beginning of "back to normal" but you find out soon that it is not. Your other kids are coughing, your spouse is really sick. You don't feel so hot yourself. When the baby sleeps you have stuff to do, but also you are a little shell shocked. This isn't just a bad day, it is repeated for days, weeks, a month. And you aren't just watching someone do this to your child like nurses administering shots, technicians getting x-rays, nurses forcing him to swallow barium for the tests. YOU are the torturer. Over and over. Ok, can you picture it? Can you understand how or why I might be a little stressed? I hope so. I'm mentally sound, anyone would feel frustrated in these circumstances. At least, I think so. That might be what a crazy person would say.

FYI we have a feeding specialist coming tomorrow (YAY!) and a follow up appointment with a pediatrician about his pneumonia. The day after that we start having friends over daily to either take Ezra or stay here and work on his eating. I really didn't think people could be of much help with Ezra, because if the people he loves most couldn't make him eat, then I assumed other people (who sometimes scare him and make him cry) couldn't be helpful. But when Eliza fed him some of a bottle and Melanie got some applesauce in him, I became hopeful. I am on cloud nine just thinking about people coming to help if they can make him eat. We are getting 3 meals a week for the rest of February. We have a consultation for a GI specialist to talk about his absorption and the possibility of a G-tube. My mom called and said she would like to come and help when we need it. People have been calling with ways they can help us, and honestly we are almost overwhelmed by all the love and assistance. Friends have come to clean, people are fasting and praying for Ezra, it is raining in our desert.

I just want to express my thanks to friends who have written and called to comfort me and give me solace, to friends who are willing to sacrifice time or money or energy to help us out. It is hard to know when I need help sometimes, because hard things become my "normal." Thanks for telling me how abnormal this situation is, and for offering me the helping hands that I need.      

Thursday, February 5, 2015

Hard Knock Life

For some reason, a few people have requested a blog post. An update of my super difficult life. Well, your wish is my command, but be careful what you wish for.

A picture of happier times... about a pound and a half ago.
Today Ezra won't eat... much like yesterday and the day before. This morning I had to pump and squeeze milk from a bottle into his mouth while holding him in a headlock as he bucked and cried and choked. This is how we do things now. And I'm drying up, so I don't know what to do about that.

Ezra had a chest x-ray after seeing a pediatrician yesterday. (I'm glad they could squeeze us in, and I'm more glad that Dan went instead of me, because I'm usually on doctor patrol and I hate it. It takes all day and they just tell you how many things are wrong with you and your child while said child cries and doesn't sleep. Want to be stressed out? Go to the doctor. Preferably more than one specialist a day.) Anyway, they saw something on his lungs and we are treating him for pneumonia. We feed him his medicine much like we feed him his milk, as he screams and cries. We are supposed to make eating a pleasant experience for him, and not push him. With his sensory issues and his other problems he could become adverse to eating for the rest of his life if we screw this up. But we need to feed him something somehow, because he is now less than 17 pounds. He is slowly starving. And he prefers starving to eating.

Ezra doesn't fall asleep on his own anymore. He cries off and on for an hour or so until he finally passes out. If we rock him, he will wake up if we move. And even if we don't move a muscle, he can't sleep for longer than a few minutes on someone. If we keep him up, he gets crazy tired and freaks out even more when you put him down to sleep. Most days my head feels like it is on the verge of exploding.

All of us are some level of sick. I've been feeling like I am coming down with something for weeks. I'm achy, my throat hurts, I'm tired. Ezra has had some hard nights where he has woken up in the middle of the night and won't go back to sleep, or he's gotten up really early. Dan and I have sacrificed some sleep. We don't feel good. Asher and Gwen are home from school today because they wouldn't go to sleep last night until after 10:00. They just kept getting up and complaining. Asher seems the least sick, in fact, he might even be well. He was sick last week, and he seems to have the strongest immune system. I was too lazy and tired to take him to school, although I was pissed off that he and Gwen would be home all day. I told him that he needs to take care of us all, but that obviously won't happen because he's not old enough. He will play on his own and make messes and occasionally fight with Gwen. He will use the TV so I can't watch what I want to watch. We are giving Gwen Ezra's breathing treatments because she is sick and coughing and crying and WHO CARES who's name is on the meds? They are helping her. Ezra's getting breathing treatments too, because he is so snotty and he can't breathe. He is not a fan of the treatments. He is not a fan of anything.

My kids are late to school approximately 90% of the time.

Our house is a MESS. It is laughable, really. We have ants and there are dirty dishes and food everywhere around the kitchen. Every room in our house (excepting the piano room, we must keep up appearances) looks like someone detonated a bomb of clothes, dust, toys, books, and filth. The kids bathroom has toothpaste everywhere and two nights ago Gwen woke up in the middle of the night and peed her pants on the bathroom floor. I still haven't taken care of that. At least it wasn't in her bed, but actually that might have been easier to clean. I try to clean things. I clip my kids nails, I give baths, I provide clean underwear. I do the laundry and take out the trash and try to mop and organize things, but it doesn't help. The mess compounds faster than I can work. And did I mention that I was sick, and bone-tired? And I've been caring for a handicapped baby who won't stop crying and has pneumonia?

So many times I have typed paragraphs on Facebook and erased them without posting. Nobody wants to hear it, nobody really cares. I mean, they feel bad and they will pray for us, but what I'm going through can't affect people, they can't really help me. They are living normal lives with normal children going through normal things. Some of their moments are happy, some are frustrating or sad. People just want to live their own lives, and I get it. If my friend had a handicapped baby who was going through a severe rough patch I wouldn't really want to get in the middle of that either. I might pray for them and make them a meal, but I would probably walk away thinking how nice it was that I didn't have to go through that in my own life, and I would absentmindedly feed my children and sleep a normal amount and that would be that. I am in the 7th circle of hell right now. What can people possibly do about it? I don't want to bring others down, I don't want to be a constant complainer. I will type something like "I'm obese and gross-looking and I can do nothing about it. My handicapped baby refuses to eat and I can do nothing about it. My house is a mess, which I probably could do something about, but it would take me a month of uninterrupted work. I'm tired all the time, and I feel like I'm being tortured." Then: delete, delete, delete. Because, what could possibly come of those words?

Yesterday I did not delete. I posted that Ezra had pneumonia. Before that I posted "Did anybody ever read Goodnight Mr. Tom? It's pretty messed up, from what I recall. I remember in Jr. High thinking 'Wow, I hope I never get locked in a closet with a baby for weeks as it screams and slowly dies of starvation in my arms.' Well, I'm pretty sure I'm living the dream, folks. And yes, it's as fun as it sounds." These posts have gotten me some sympathy and a friend is bringing us a meal tonight. I feel like I am going to die from over-exposure to torturous experiences over the last year. A meal brought? Wonderful. Better than nothing. Someone is being kind to us. I really appreciate it, for real. Does it fix my situation? Not even a little bit. 

What I need is someone to take my kids away from this house for about a week. A feeding expert that can deal with Ezra. I don't care if he gets physical therapy or whatever, just make him eat food and drink. Take him to the doctor. Get up when he cries in the night and hold him although most of the time it doesn't help. Any nurse-Mary Poppins's out there? Anyone? I will gladly go into debt to pay you. And yes, you need to take them away, you can't stay here, it's too gross. 

Sometimes I imagine ways out of my situation. Running away? Surgery? Mental institutions? Prison? You do not know how blissful solitary confinement sounds. The problem is I would never be able to do anything to get there. I'm too upstanding a citizen. Will extreme grumpiness get me thrown in the clink? Because I am definitely getting meaner and grumpier.   

Also, I am addicted to my computer. It is my drug of choice. I need to escape my reality quite often through the day. I need to write or read or post something funny on Facebook so that I can have a little lift in my life. Sometimes though, I see bad news and get sad. Sometimes I see good news and get sad. --Oh, you just had your 5th child and you look like a supermodel? How nice for you. You have a typical baby who had a little ear infection but he's on the mend? Oh, and look at how well he's wolfing down that food and how much he's giggling? Super. Most of the time I really can rejoice with people in their happiness and good fortune, but sometimes it is part of my torture. Especially when things are really bad around here. 

Dan took a day off yesterday to be in charge of Ezra. It was... amazing. I felt like I could fly, like I had just done the best drug on Earth. But then his time was up, and my time started again, and it was like being punched in the face with a brick. Poor Dan thought he was helping... and he was, he was. But it was like a cool breeze in the midst of the burning desert: the breeze goes away and you are still dying, but now you have the memory of the cold air to make your burning all the more painful. What would be helpful, truly helpful, is removing me from the desert to some place where I won't slowly turn into a shriveled ash heap. But I just can't find my magic lamp. I think the genie is on vacation, anyway. 

And, just so you know... miraculously I am not depressed. My situation sucks rocks and there are entire days and weeks that I just have to power through, but I don't need medicine to cope. (But drugs and wine, on the other hand... kidding.) I love my children even though thinking of physically caring for them while they re-infect each other in a never ending cycle of coughing, sickness, and complaining makes me want to jump off a cliff.* Ezra is learning not to like me, but he sometimes smiles, and that is nice. My body is humungous and uncooperative and sick, but I still want to live in it (but please, genie, make it smaller for heaven's sakes!). I would love, LOVE to change about ten things about my situation, but I can't. I'm on a Facebook page for kids with 13q deletion and some of those parents have it worse than me, believe it or not. I can still count a few blessings. So don't feel bad for reading this and then awkwardly shuffling away from my horrendous problems. Maybe I'll find someone that I can pay to come over and save my sanity, but probably I won't. Unless you are my 13q deletion baby whisperer, you can do nothing for me. I suffer hardship and literal headaches every day, but I'm still hanging on to the ends of the fraying rope of my existence. Some people just get dealt crappy hands, and it's the hard knock life for us. Maybe "this too shall pass," but probably not. 

Hope you enjoyed the update. Sorry, it's the best I can do. 

*Please don't think I would actually jump off a cliff. I am a dramatic individual that uses hyperbole and is extremely scared of heights.