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.  

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. 

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.

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.      

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. 

Diagnosis and Feelings

When I was about 20 years old I was working at Young Singers Club. We had a small children’s ensemble that rehearsed at the Labero Theater practice rooms. One day during practice one of the little boys had an episode of some kind… he couldn’t breathe. He was a small and frail boy. He had some sort of handicap, but he was so sweet and he loved to sing. During his emergency the other kids started to panic, which only made his problem worse. The only adults in the room were the program director and me, and she asked me to help him while she stayed with the other kids. I quickly and calmly took him into the bathroom and shut the door. I sat down on the dirty floor and held him on my lap. I talked to him soothingly and told him that he would be fine. I told him to breathe with me, in and out, in and out. I heard his sister crying outside of the door calling her mom on the phone and asking if he was going to die. I just held him and smiled at him and kept breathing with him, in and out. His breathing got slower and better. He was fine. And I remember the thought coming to me very clearly: I think I’m going to have a special needs child some day.

I forgot about this event until recently.    

Ezra has been diagnosed with a rare genetic disorder called 13q deletion. The specific part of the chromosome that is deleted is 33.1. There are only hundreds of cases that have ever been recorded and every case seems different, but there are several common traits: small head, wide-set eyes, wide nose bridge, hand and feet anomalies, skull issues, low muscle tone, and lung problems. Those are the common traits that Ezra has. There are several more that are on the list that he does not have, and we are grateful. For instance, every case I have read involves feeding problems and/or failure to thrive. Ezra has always eaten well (thanks to lots of trying and non-traditional positioning) and has grown beautifully. 

Rocking the helmet. I kinda like it white. 

It also seems that almost every child with this disorder has learning delays and physical delays. Who knows how it will affect Ezra. There is a case of a child with 13q deletion running at two years old, and others of children who cannot walk at four. His physical therapy seems to be helping him, so I’m hopeful in that department. Most cases report that children have a hard time learning to read, write, and speak. They also report a shortened life span, but I don’t know what this means for our boy. We have some answers, but we still have many questions. Some of those questions can only be answered with time. 

When I first got the news I took it well, but I cried anyway. I was shocked and overwhelmed. I mourned for the future that I had unconciously imagined for him. I was scared about what this diagnosis meant. How severely will it manifest? How will it affect Ezra? How will it affect our family? I still have those questions, but they don’t make me as anxious as they once did. Dan did not cry. He is a man who takes things a step at a time, and not much can shock him. The only time he teared up was when we sat our older kids down and told them about Ezra’s special circumstances. He told them that he knew they would be wonderful older siblings to Ezra because of their goodness and the love that they have for him. They really do show such love and devotion to their baby brother. 

Bath time boy, no helmet. 

 I have thought a lot about this situation, and I really have come to view it as a blessing. Ezra is the happiest and sweetest baby, and I get to interact with him every day. I get to serve him. I get to be his mother. He gets to teach our family about empathy and compassion and patience. If it turns out that he can’t speak well, we will all get to learn sign language or another way to communicate. Ezra's name means "help"-- he will need help and he will be a tremendous help to others. We are the lucky ones who get to be with him the most. There was a 1 in several million chance that I would have a baby with 13q deletion, and I won the lottery. I would not trade Ezra for the world. 

(PS I need to say that many people have prayed and fasted for Ezra and for our family, and we are so grateful. We are humbled and we love you all.)   

Mr. E

Ezra does not have a diagnosis yet. 

The last time I posted about him I think we were here: head x-ray, CT scan, cardiologist, urologist, ENT. 

We have now added: geneticist, neurologist, cranial technicians, physical therapist, hip x-rays, chest x-rays, extra doctor check ups. 

Our "to do" list: get him in a helmet ("like, yesterday" the neurologist said over a month ago- don't worry, it is being made), see another physical therapist through "early intervention", breathing treatments, see a pulmonologist, go back to the geneticist and the neurologist and of course the cranial technicians weekly. I might be forgetting some stuff. I don't really have an organized brain by nature. 

So far the steroids aren't improving his labored breathing... but he doesn't seem to mind either way.  

Ezra usually sleeps well, and he is a very sweet and aware baby. Most of the doctors and specialists have noticed that he is very social. He enjoys attention and people most of the time. 

He is a good baby, and that's a good thing, because I'm worn out. If he cries for no reason, I sometimes get disproportionately frustrated or upset. 

Sometimes I'm really stressed. I have to give Ezra physical therapy several times a day, most of which he doesn't like. Deep pressure on hands, feet, and back along with lots of neck stretching, assisted tummy time, side lying time, and "sitting" time. He has extremely low muscle tone all over his body. He is getting better with the therapy, but the effort weighs on me. And of course, this is on top of the responsibilities inherent in having a baby. Feeding, changing, cleaning blow-outs or spit up, bathing, grooming, loving, scheduling, laundering. 

Then there is worrying. I was never much of a worrier AT ALL, but now I have to think about unpleasant things all the time. They are my responsibility. Nobody else is going to make appointments, take Ezra to those appointments, make sure nothing is overlooked, and do the unpleasant things that need to be done every day. I don't want to think about these things, but if I don't, Ezra will not get the care he needs. And I still occasionally miss an appointment or I don't do enough therapy during the day. I have other kids after all, and a mind that doesn't do well with organizing and scheduling. 

And believe me, I don't worry about needless things. When Asher became old enough to stop hurling himself off the top of stairs and into pools and off of jungle gyms, I stopped following him around. I am the laziest parent of all time. I will take the easiest non-worrying route any chance I get. But if nobody else is worrying about important things, I guess it is my job.  

Not to make this post a rant or anything, but I just need to say how I feel about this next thing. Some people are like "Oh, he's fine. He's normal. Don't worry about it. He'll be fine." When people have this attitude it brings out the rage in me. I want to punch them in the throat. He is not normal. If he were, we wouldn't be spending all of our time and money on all these specialists. I have known from the moment I saw him that something was not quite right. And no, my pediatrician is not over-doing it. She knows a lot and sees a lot of babies. She is trying to rule things out and help make his conditions better. And yes, most likely Ezra will be fine after all of this. But he is not fine right now. Do you know what is going to make him "fine" in the end? A lot of hard work and dedication from me and a team of doctors. I need to be active in this. I cannot kick back and stop worrying.

This was back when his head was not as bad. 

I must confess that sometimes I look at him from certain angles and I cringe because his head is so misshapen, but he is still beautiful to me. Sometimes I don't want to get out of bed because of the daily grind, but I do it because I love Ezra with my whole heart. He is so precious.


Bonus: Here's a picture of a child about to get a chest x-ray. Can you believe that they put kids in this mechanism? It reminds me of a cross between a torture device and Augustus Gloop going up the pipe in Willy Wonka and the Chocolate Factory. 

PS This baby is a lot less purple and screaming than Ezra was. Also, Ezra is younger than this baby and has less ability to hold himself up. I held his hands at the top. I was shaking like a leaf an hour after this appointment.