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. 


Andrea Johnson said...

Hi Jamie,
I have not kept up with you over the years, but I'm so glad that I get to know you in this way at least. If I was in Arizona with you, I would sweep in and do something!! I really would! You're right, it's easy for friends sometimes to help a little and then move on, but it's different with family. So all I have for you is words today and prayers for awhile. But please know I'm dying to help you. We ALL HAVE REALLY ROUGH PATCHES!! I could go on and on about times I've had where we thought my daughter had a brain tumor/cancer, and hospital stays, and the house a complete disaster, and the boys horrible, and so much more. This struggle will pass. I don't have your situation, but you'll make it through. Promise! I'll be praying!

Janna Hanson said...

Jamie dear! It's your dear friend, Janna Hanson here:) Thank you for sharing and being candid and vivid in your life and the things you deal with. I can't help but absolutely HATE my decision of moving to Flagstaff right now simply because if I was there, I would come live with you for a bit and help out. Just a thought-have you thought about respite? Like a caregiver to come in and help? Thats what I have done for the last 8 years of my life and have really found it fulfilling and i love and learn through it. I also do habilitation. I have a feeling it wouldn't be hard to get sweet Ezra connected with these additional benefits and while it doesn't fix anything, it gives relief to the family who is living in what can often be a nightmare. If you are comfortable, each out to my mom. She has had her fair (Well, very unfair) share of health and hellish battles with her children (each of us) and stuff of her own. I know I'm not physically in the Valley right now but I want to help. Can i help you get hooked up with a relief team?…see what options are out there for you? Love you bunches!

Lori said...

Take Janna's advice, Jamie. Those of us who aren't there to help you, and really couldn't help even if we were, WANT you to get help! You don't need to do this all alone sweetie! You must feel so beyond overwhelmed...have your VT's or RS Prez seen the reality of your house? Let them! Those who love you want to help but don't know they bring a meal...knee jerk reaction. Tell them what you REALLY need, even if it's embarrassing or whatever. They will get blessings for it, and you'll find that you'll make some real friends from it. Love you...

Kristy said...

You are right Jamie. Life totally sucks sometimes. It is super hard to face challenges that you know won't go away for a long time if ever. It is life changing. It is depressing and you get angry and totally exhausted. You are going to have to find a way through and it's not possible to do it alone. I can tell you what helped me, but I don't know if you want to hear it. Really, only you can figure out how to make this work for you and your family. I know you will find a way. You are creative and talented and a great mom, so of course you will find a way. Love you sister!

Tracy Mills said...

I don't know what else I can say that hasn't already been said. I wish I lived closer. I would help. I wouldn't be able to take a lot of time off of work, but would it be helpful for me to come for a long weekend? What you really need is a vacation... which I would be more than happy to take with you, but I know you can't just leave with the way things are right now. Just know that the moment you can... I'm there. Let me know if there is something I CAN do. Even if it is just a phone call to vent. I love you.