Tuesday, July 7, 2015

Utah Start to Finish

We stayed with my parents in Utah for three weeks. I had always wanted to "bug out" for the scorching Arizona summer, and we finally did it. Unfortunately it seemed like we brought the heat with us, but at least it cooled down in the morning and at night. And there were other perks. My mom and dad were terrific hosts, I got to see my Utah family a lot, and my kids enjoyed playing with their cousins. I also got a break from my daily grind. I will now sum up how we spent our time.

The first week we took it pretty easy. Gwen woke up in the middle of the night two nights in a row. Once was just coughing, the next time she threw up. Dan felt sick on and off. We were tired. So we ended up hanging out with family, going on a very few outings, and binge watching Marvel Agents of Shield. I also finished a book and read a trilogy. I exercised a bit, sometimes with Tracy sometimes on my own. We sat around and chatted a lot, but there were other things we did as well.

To sum up our activities for the first week and a half: we tried to meet Tracy at a rodeo but it was sold out so we went to Discovery Park instead, Dan and I went to a few amazing properties as part of the Parade of Homes, we went to church and my parents hosted their epic family Sunday dinner, We celebrated Fathers Day with homemade signs and store bought cake, I had two exercise nights with Tracy, we hosted Dan's friend and business partner Ron who stayed the night at my parent's house (while Dan and Asher went to a baseball game with Chad and Clara's family), we went to the Provo Food Truck Roundup then to Tracy's place, we watched The Imitation Game all together at my parent's house, we had a picnic with the whole Utah family (minus the ever-traveling Tracy) up in the mountains, and we had another church day followed by the epic family gathering. My cousin Trina was there with her kids, and I hadn't spoken with her in about ten years. It was so great to catch up. If we lived close I'm sure we would be really good friends. I also got to talk to my uncle Dale and aunt Teresa. Dale told us some epic stories from his childhood... and by epic I mean shocking and scary. I spoke with my aunt Joanne several times as well; she lives in my parent's back house so she is around a lot. She is a great person to talk to.

The Saturday picnic. 
We really started picking up the pace on the second Monday. Dan took me to one of our favorite local restaurants, Magleby's, for lunch. My mom and Kristy and I took our kids to a splash pad/park in the afternoon; it was a really hot day.

Gwen tried to stop the water jets with her feet, Asher went around punching and kicking the water.
Tuesday I went for a morning jog, started washing our car (Dan finished), and then met our friends Jon and Lisa Williams at the Springville Museum of Art. We had our kids, they had theirs. Gwen and Jane were friends immediately. After exploring the museum (I love that place!) we went back to my parent's house for lunch and more talking. They are cool people. After they left, we got in the car and drove to my brother's house for dinner. He and Clara made some awesome burgers and salad and we had a great time playing Catch Phrase and talking.

Wednesday morning I took the kids to the Aquarium in Draper to meet up with Clara and her kids. The cousins had a blast together. The aquarium was the nicest and largest I had ever seen, and it had great food and a fun playroom for the kids. We ended up heading home in the afternoon, and then Dan and I went to the new Payson temple. After that I went to the mall with Tracy and she showed me one of her favorite stores before we both got pedicures. Mom met us there but they couldn't squeeze her in which I thought was pretty lame, especially since my mom just ended up dropping me off at a movie theater to meet Dan for a date afterward- I felt like a teenager or something having my mom drive me around. I am so grateful for her. Dan had put our kids to bed and we saw a late showing of The Avengers: Age of Ultron. It was a good action movie.

Ezra was in his stroller and Asher is pretending like he needs to hold on to the tail or he will fall/die. 
Thursday our family ate lunch at the Art City Trolley which is a cute little restaurant with a hipster/antique vibe. The food was AMAZING. I went to my sister Kristy's house and the cousins played, then we all had dinner at their house. Dan left around dinner to drive to Ron's house so he could spend the night and the next day with him and his family.

Since Dan was gone Friday, I did a lot of laundry and cleaning. I watched this silly Mormon/mafia mashup movie with my kids and my mom called Inspired Guns. Asher loved it. I could appreciate things about it.

Saturday was Independence day and Dan and I took our older two kids to see the new Pixar movie Inside Out. We were SO impressed by that movie. That's all I will say, because I could write a book about that story and its execution but I have neither the time nor the space. Let's just say we recommend it. Gwen hopped into my arms and cried a little during the last half of the movie because she had so many feelings. Anyway, afterward we went to the food court and sub-zero ice-cream so Gwen could have a pink shake. It was cotton candy flavored and I snuck some and it was delicious. Later my parents hosted a big dinner and then a street firework show. I caught the first half, but I missed all of his arial stuff because I was putting Ezra to bed. But I went outside and sat with some family and watched other fireworks from people shooting them off in the neighborhood. Utahans LOVE fireworks, especially in July.

Sunday was another church/family day, complete with the normal BBQ feast. I miss doing that every week, but it was fun to be there for three in a row.

Monday Dan and I took all the kids to Salt Lake City. Our first stop was this place called Les Madelines that my friend Nicole (who did the Big Sur trip with us) had recommended. It was CLOSED. I was SO BUMMED. I'm going to be thinking about that place until I can go back. After we drove by the capital building and then took a tour of the conference center. The kids didn't seem to think it was cool or interesting that the roof had flourishing plant life everywhere; maybe it was because it doesn't seem like a roof while you are walking around on it. Anyway, I walked the kids around temple square while Dan worked in the car for a bit. We went to lunch at a place called Blue Lemon in the mall across from the temple. The mall was very cool and if I hadn't had my family with me I could have looked around there all day. As it was Ezra wouldn't nurse and the kids were tired.

Not the best picture, but you get the drift.

Tuesday my grandma took our little family to lunch back at the Art City Trolley. I got a different salad that was just as delicious as the first. After she treated us to lunch we went back to her house and she gave my kids candy, chips, gum, and ice cream sundaes! When I refused that stuff because I was full from lunch she said, and I quote, "That's terrible." Ha! I love my grandma, she lives to serve others and to make people happy. I talked with her for a bit and I always love talking with her. Apparently her dad was a real-life "Steve Rodgers" (Captain America): he was a small man but he wanted to fight so badly that he just kept going to the recruitment office even though he knew they would turn him away. Eventually they gave in and let him fight. My grandma always has new and interesting things to share. I should have packed my family up Tuesday night, but we decided to go on a hike with Tracy and her friends. My mom and my whole family hiked Stewart Falls, which took a little longer than we thought and zapped our energy more than we expected. We had to take turns carrying Ezra, and Gwen was a little slow. We seriously got to the falls, took a couple minutes to breathe, and then started back. We hiked a significant portion of the way back in the dark! It was an adventure, and even though our bodies felt like they might fall apart afterward, we had a great time. We felt like we accomplished something.

Dan was pretending Asher was a prisoner at this point. "March! Don't try anything funny..."
Wednesday we all left for the Grand Canyon... but that is another post.

I would love to do this again next year if my parents would let us. Ezra had a hard time adjusting at first, but I think he got used to the new places and faces within a few days. He also learned how to scoot/army crawl on his belly while we were there, so I think Utah is good luck! His PT was very impressed with him when we got home.

Thanks Utah family! We really had a great time.

Saturday, April 11, 2015

Adventures with Ezra and Easter

On Thursday I had an appointment with a GI specialist for Ezra. It was at a Mesa location for Phoenix Children's and when I drove up I thought "I remember this place!" I hadn't been there since Ezra had his CAT scan when he was four or five months old. I almost thought I dreamed this place, where there is plenty of parking in the front and you can just walk right on in. I have been to many specialist locations, and to the PCH in Phoenix a dozen times and a different Mesa location a handful of times. It was kind of nice to come back to this place, just to know I wasn't crazy and that this building really did exist. Plus, the people were really friendly the first time we were here.

I met a lady in the lobby who was a former nurse and a foster mother to two babies. She had a medical binder as thick as my arm for the boy. He had a different chromosome disorder than Ezra, and she told me he had had open heart surgery. Meeting so many other kids with issues (from all the hospital trips we've had) makes me marvel at the human body, and at the human spirit.

When we finally got into our room, Ezra had a hard time. He is not loving hospitals nowadays. Any place where I have to take his clothes off, where there is crinkly paper on the squishy tables, and where people poke and prod him sends him into a panic. He cries and shuts down. I have to hold him the whole time.

They almost  re-weighed him because he weighed less than their previous records of him. You know, the records they had from over ten months ago. I had to confirm, yes, he does weigh less than when he was four months old.

We finally met the doctor, and she was a no-nonsense business-like woman. She was there to solve our problems. She did no tests, she only asked about his history. She told me I needed to try harder with weaning him, with his eczema, with feeding him more calories. His current therapists weren't right for him, I needed a new and better team of people. I wasn't doing enough. What were my thoughts on the G-tube?

This is why doctor visits stress me out, it's aways like a slap in the face. It's not enough that I put on a song and dance show every time I want Ezra to eat more, that I pretend to be in love with the honey bear so that maybe he will try to drink from it one day. It is not enough that I am still breastfeeding him although I would like to be done so that I can finally start to lose my substantial baby weight (50 pounds isn't a fun amount of extra weight to carry). It is not enough that I schedule for him, even though I am not organized and do not prefer to spend my time driving to appointments. It's not enough that I work with his little body personally every day, knowing which muscles need to exercise. None of it will ever be enough for these doctors, because he still has problems. He still has low tone. He still has intestinal problems. He still isn't crawling. He still is below the weight charts. His head still isn't growing. I feel like I am failing a very important test, and these people are shaking their heads like you should have studied harder, Dummy. I want to yell "The test is rigged! I can't do any better than this! I'm trying my best."

So I told her I'm not opposed to the G-tube, but maybe it might be nice to try the NG-tube first because it is less invasive and doesn't require surgery. And really, could she give me a little bit more time to try to feed him normally? Ezra had lost weight due to a month of sickness, and he was doing so much better. He is never sluggish or dazed-looking, actually he is usually smiling and happy. He is feeding well now, and we started to turn a corner recently, could she please wait?

So now we need to go and get weight checks every two weeks. She gave me a list of people to call and things to get from the drugstore for his skin, for his food, for his colon. And so it goes.

And now for something completely different!

Easter. It happened. I dyed eggs with Asher and Gwen while Dan was gone. Asher says that his favorite color is pink right now, and that is fine by me. We, I mean the Easter Bunny, hid eggs inside because it is already starting to get hot. The Easter Bunny left some baskets for the kids with candy, a book, bubbles, games, and a toy. We watched an epic amount of church on TV. It was a great day.

Tuesday, March 31, 2015

Jesterz with the kids

Jesterz is a family friendly improv company in Mesa. We've been before, because we love clean comedy. I actually gave Dan a few gift certificates to this place for Christmas this year. 

Recently Jesterz has been partnering with different actors from Studio C. My kids LOVE Studio C right now. If you don't know what I'm talking about, look them up on YouTube: there are a plethora of sketches to watch. We decided to go to James Perry's matinee, and I was crossing my fingers that the kids would like it. We asked them if they wanted to take pictures with him afterwards. Asher didn't want to, and Gwen said "First I'll see the show, then I will decide." She must have liked what she saw, because we waited in line and snapped this cute shot.
"Look, I found a small child!"
Gwen was quiet for most of the show, Asher laughed hysterically for the first thirty minutes, and Ezra was at home napping with a sitter. Dan and I enjoyed ourselves as usual. (That makes us sound like regulars. We're not, because we rarely go on dates. However I can say with certainty that we've never had a bad time at Jesterz.) Anyway thanks James Perry and Jesterz for the fun afternoon, and for adding the word "muhlarge" (a cross between medium and large) to my kid's vocabulary.  

Monday, March 30, 2015

Cinderella and Tooth-hurty

Our Spring Break vacation was a little shorter than it normally would have been, because I had purchased two tickets for Cinderella at the Gammage Theater on Friday the 13th. We had to go home or sell the tickets, and I didn't want to sell them. I was excited to see Cinderella, because it was newly re-vamped Rogers and Hammerstein, and I love a good modernized classic.

As Dan and I walked from the parking garage to the theater, we saw dozens of little girls dressed up as princesses. It was precious, and it made me think how nice it would have been to take Gwen and Asher. I consoled myself by remembering that I bought four tickets for The Phantom of the Opera in May. 

The theater was packed. Before the show, a voice announced that Cinderella would be played by a different girl and that Madame (stepmother) would be played by Fran Drescher. The audience went wild. I could not believe that so many people were that excited to see "The Nanny" perform. I'm pretty sure she hasn't been in anything since the 90's. The crowd gave her lots of love through the night. But I digress.

The show was very well done, and the sets and costumes were amazing. The actors were wonderful and funny (oddly the Prince's herald was a stand out performance), and the choreography was great. There were of course a few things that bothered me: the prologue singing was very disjointed and everyone had crazy vibrato for that song, the people who re-wrote the book went a little crazy and decided to make the people vote for a Prime Minister at the end, etc. Despite those few bothersome things, I enjoyed the show. It was sweet and magical and they made this crazy love-at-first-sight story believable somehow.

So it was a good show, but sometimes when I see a good show I get this strange feeling. It's a mixture of sadness and jealousy and having missed my calling. It is as if someone is dangling some beautiful thing that I love in front of me, and I cannot have any part of it. I loved the show, and I was so glad I went to see it, but I kept thinking things like "I'm too old to play Cinderella now, if I ever could have. I'm too fat to play anyone but the bigger stepsister. I'm too settled into my life to even audition for anything like this..." And I know that it is okay and that my life is pretty great, but I just get a little wistful and melancholy to see people living my dream. I was even jealous of the set designer. 

Anyway, it was a lovely night.

(PS, start this video at about the 53 second mark to see a medley of Cinderella songs. I WISH Santino Fontana was our prince, but the replacement sounded a lot like him.) 

The next weekend we took the kids to see the new Disney Cinderella movie, which we all liked. I thought the "be kind and have courage" thing was a little heavy-handed, but it isn't a bad message, so I was okay with it being repeated ad nauseam. The casting and the performances were great. I would buy the DVD. 

Before I sign off, I just need to mention that my tooth hurt for a few days so I made an emergency dental appointment on Monday the 23rd, for 2:30. TOOTH-HURTY. I mean, if you are going to have a root canal where the local anesthetic isn't really working because your tooth is so infected, that is the way to do it. It took a few hours because they had to break off my crown to do the procedure and get to another cavity in between my teeth. I just kept thinking "Better me than Dan, he would hate this." and "I would totally go through this in proxy of my kids, especially Ezra. If there was a way to transfer his tooth issues to my mouth, I would totally do it." They shot me full of anesthetic every ten minutes (because I kept feeling what they were doing, ouch), so my gums felt like a pincushion the next day. But I didn't even need the pain meds they prescribed. That was nice. 

PS I don't know how this happened, because I just had my teeth cleaned and x-rayed and everything was fine. Sigh. 

Friday, March 20, 2015

The Writer's Journey

It all started with a Facebook post.

Part of the long and winding road.

My friend Nicole said she was excited to attend this writers workshop in Big Sur. She had been planning to go for years, and she wondered if any of her writer friends were going. That was it. Normally I'm not the kind of gal to hop on board a random weekend getaway, but for some reason the idea stuck. It didn't matter that my book wasn't quite finished, that we would have to pull the kids out of school two days early, or that Dan would have to come because someone would need to take care of Ezra while I was busy. I don't know how it happened, but we went for it.

Nicole and I were planning to leave on the same day. We were also going to stay overnight in Santa Barbara; me at my in-laws with my family and she by herself at a hotel. We had tentative plans to meet up, but we didn't talk about caravanning or carpooling. (I couldn't offer, because our car was full.) Anyway, we were almost to Riverside when she texted me saying that her vertigo was back (she had it before for several weeks) and she wasn't sure she was going to make it. She had left late and had been stopping to throw up on the side of the road. She was trying to wait it out in Palm Springs. We turned our car around to get her.

When I climbed in Nicole's car she looked drugged, which of course she was. She had taken some dramamine and maybe something else. She had sunglasses on and was lying down. In fact, she needed to go to the bathroom but opted to stay in the car and hold it because she didn't think she could move. I drove her to her hotel in Santa Barbara, and we decided to caravan up the rest of the trip in her car the next day. By the time I dropped her off, she was feeling much better. We had some great conversations in the car. And we stopped a few times to eat (and feed Ezra) and to get gas.

The next day we got a Blenders smoothie, packed all of our writer's stuff and baby gear in her car and drove up the coast. We were running late because we had to make multiple copies of the chapters we planned to take to critique groups and the copy shop had terrible service.  We were stressed, but the drive was beautiful. I was in the backseat with Ezra for the last part of the trip, which also happened to be the most winding. (Blarf.) But we made it to the writer's workshop welcome segment with a few minutes to spare. Phew!

When Dan and I went to our room/cabin to unpack we saw it was filled with smoke. We thought it might be on fire, but it was only burning ash in the fireplace with the flu closed. Dan got it sorted while I went to my presentation and first critique group. Our room smelled like a campfire for the rest of the weekend.

An overview:

- My first critique group was awesome. I gave good advice to others and received good advice in return. Reading your worst chapters to strangers is hard, but immensely helpful. My second critique group wasn't as good, but I'm sure it was mostly my fault. I chose weird chapters to read.

- I had at least three people tell me I looked like someone they knew. In fact, one lady in my first group spent two hours nervously wondering if I was her adopted son's birth mother. She hadn't seen her in seven years, but she apparently looked just like me and her name was Jamie. She asked me how old my children were and what my maiden name was, and when she explained why she was asking I gave her a hug. She must have been freaked out by my story (teen pregnancy).

- The editors panel was interesting, the agent's panel was enlightening, and the query letter event was informative. There are so many simple things I did not know. For instance, I did not know that all queries are now submitted by email. And that 99% of the time you NEED an agent to submit your story to a publisher. Things were different before 9/11 and anthrax scares, now the writing industry sounds as difficult to navigate as the entertainment industry.

- The food was excellent, and the service was impeccable. I would totally go back to Big Sur Lodge.

- I was amazed at all the different types of people attending this workshop. Our group wasn't large, but it was diverse. There was a sweet lady who looked like she could be a great-grandmother, and there was a sixteen year old girl (I didn't meet her, but I heard she was a great writer). I saw a lady that reminded me of a viking woman, complete with a crown of flowers in her hair. We sat next to a guy at dinner who had written down things to say to others, and he kept consulting his paper so that he could ask us where we were from and tell us what he was writing. A nice girl stopped her car to give me a ride up the hill, and I later heard that she was autistic. I was not the only writer who had a spouse and child in tow. I kept wondering how many of us were introverts really stretching our comfort bubbles. I was consistently amazed that so many writers would want to meet together like this. At meal times we were a loud group.

- I found myself wanting to encourage certain writers in my groups. One man was writing a book called "The Day Elijah Learned to Fly." He thought his story was a middle school book, but the voice and themes seemed older. He got the advice to center the story around the children instead of the old man, and to try Christian publishing houses because the kids listened to sermons at church. I kept wanting to say "I like your book as it is, and I think anyone could publish it. Just make it an adult book, and your problem is solved!" Another woman in the same group was writing a middle school version of Shakespeare's "Much Ado About Nothing" which I loved. She was given advice to make her characters and tone older (which would require re-invisioning and rewriting the entire book) so that publishers wouldn't be scared of the Shakespeare tie. I wanted to say "Who cares? It is a perfect story for that age group. Your middle school voice is perfect. Don't change everything, just tighten up some of the writing." But I wasn't the professional. I wish I had gotten emails for these people (and a few others) so that I could be a positive voice for the stories they created.

- It was a busy weekend, and I didn't get to do much other than write and attend workshops. But we did visit a few picturesque spots on the way out. Luckily Dan had lots of time to explore and to take Nicole and I to the good spots. Plus, he is an amazing photographer.

I call this one "Swirly Swirly Sea" because it reminds me of Van Gogh's "Starry Starry Night."

I could have stood in this spot and looked at this scene all day. It was gorgeous. 

Anyway, it was a great weekend. I learned a lot, got a few new books, made some contacts, and started tightening up my first chapters. Thanks Nicole for the random Facebook post that turned into a grand adventure, and thanks Dan for everything always.

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.