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.      

1 comment:

Tracy Mills said...

It is ok to be frustrated and honest and put it out there and vent for everyone to read. You are doing great and everyone loves you and is wishing you the best. I love you and am keeping you all in my prayers.