Beginnings

Beginnings are hard sometimes. When I started contemplating blogging again, I couldn’t think where to begin. This year of our lives has been full in both good and bad ways, and since I didn’t document all of the events as they happened, I couldn’t figure out how to jump in. Did it begin with Sammy’s birth? His pneumonia and miracle recovery? Wren’s Celiac diagnosis, or Dennis’? With friendships and family connections that pulled us through? Where?

It struck me recently that it all began before that, last year actually. It started with a little girl named Sierra Rayn who fought a tough battle with neuroblastoma and became an angel on November 23rd of last year. It started there because the events that followed her passing have affected my family for life. With permission from Gen, Sierra’s mom, I’m going to tell you why.

I have been on conference calls and such with Gen for some time, but we’ve never met. However, I received all the updates about Sierra’s condition and sat with my family and cried when she passed. Shortly after, Sammy was born, hospitalized, life sort of went nuts. It wasn’t until March of 2011 that I saw Sierra’s face again in a magazine put out by a company I purchase health products from. The company interviewed Gen and shared information about the foundation she started for Sierra.

Excited to read about Sierra’s life and dreading to read about how it ended so early, I stood in my kitchen with the magazine on the counter and read while Wren napped on the floor and Sammy napped against my chest in his Moby wrap. My brain was in a fog; I was quarantined in the house with a three month old and a two year old, and I was exhausted. Very few things were able to grab my attention at that point, but this article grabbed me. I started reading the symptoms of neuroblastoma, a cancer that preys on children and usually isn’t detected until it’s at stage four. I stopped cold and felt a lump in my throat. I turned to look at my two year old daughter sleeping peacefully on the floor, and fear that I may have made the biggest of mistake of my life washed over my brain.

In the previous months, Wren’s stomach had started pooching out. She basically had a beer gut for toddlers. It was cute, and most kids have one to a certain extent. However, Wren’s was getting bigger. In my half asleep, still recovering from a c-section, never not holding, feeding, or changing a child state of mind, I didn’t think too much about it. Dennis did. He asked me why Wren’s stomach looked like she was starving, like those kids on the commercials where they ask you to send money to feed them. I joked saying, “Do you want to ask friends and family to send a dollar to the Feed-A-Wren Foundation? Seriously, I’m with her all day and I never stop feeding the child.”

That probably should have been a sign, but my understanding was that toddlers just ate often. And Wren always woke to nurse when I breastfed her, always needed some sort of food in her hand to be happy. I thought she just had a high metabolism. The doctors never thought it was weird. But for my husband’s sake I asked at Wren’s next appointment. There are three doctors in the practice she goes to, and we got the new one on this particular day. He asked if Wren was pooping. Yes. He asked if she had stomach aches. No. He declared her okay except that she had fallen off the weight chart. He attributed that to the emotional breakdown she suffered during Sammy’s hospitalization, the breakdown that landed her in the doctor’s office several times in 10 days, and took weeks for her to pull out of.

Months passed, the stomach stayed bloated, then I came across the article about Sierra. One major sign of neuroblastoma: a distended stomach. A large, I believe tennis ball sized, tumor was hiding behind Sierra’s stomach. Oh, God, I thought. I really screwed up.

I called the doctor back, made an appointment with a different doctor, our usual one in the practice, and took Wren in the next day.

Now, despite my immediate concerns, I had no idea how to walk into a pediatrician’s office and explain that I thought my child had cancer because I had read a magazine article and then surfed the internet while I should have been sleeping. I know doctors hate this. But I was not walking out of that room without saying cancer and my child in the same sentence because I needed someone to tell me what was going on. So I sheepishly explained about Wren’s stomach, the article I read, the fact that it wasn’t getting better. The doctor didn’t laugh. She asked Wren if she could see her belly button and then tickled her while she felt the huge ball that was now my child’s abdomen. After several minutes she said, “Mom, I don’t think it’s a tumor.” I breathed for the first time since I made the appointment. I waited for the inevitable lecture about not self diagnosing your kids because of the years it shaves off your life. However, that’s not what came next. The next thing she said was that it wasn’t normal and that we needed to start food allergy testing and stool testing ASAP. This led to weeks of insanity before Wren was diagnosed with Celiac disease.

Celiac is not cancer. Celiac is a disorder where the sufferer has to avoid eating gluten because it poisons their bodies. It’s a chronic autoimmune disorder that can only be managed through diet, and it can never be cured. It’s neither the best or worst diagnosis you can hear for your two year old. There are severe consequences for not following a gluten free diet if you have Celiac, such as increased risk of bone loss, diabetes, cancer, infertility, other auto immune disorders, other diseases in general because of an unhealthy gut, and death, usually caused by one of the other conditions it causes . Finding it early is the best thing that can possibly happen to a Celiac sufferer. Just ask my husband who was diagnosed a week ago at almost 30 years old. Wren was actually very blessed to be diagnosed at two.

However, I doubt she would have been if not for Gen and Sierra. I am overwhelmed that a life that lasted only two and a half years has impacted my family for the rest of our lives. I am also shocked at the selflessness of a mother who, in her mourning, was still thinking about helping other people’s kids.

I am selfish. I am not saying this so people will come back and say I’m not, or that that’s not true, or that I’m one of the most unselfish people they know. If I am one of the most unselfish people you know, then you hang around a bunch of jackasses. I’m saying it because when my son stopped breathing in my arms twice, or when we realized we were feeding my daughter every two hours because she was actually starving, I did not give a damn about anybody but myself and the people in my immediate family. I have pretty much been living that way for the last year. It’s been survival, but it’s been selfish.

During this time I have thought about Gen and Sierra. I’ve wondered what would have happened if Gen hadn’t started Sierra’s foundation, hadn’t allowed herself to be interviewed for that article. Would we be finding out about Wren’s Celiac after she developed intestinal cancer? After she had diabetes? After her body started showing signs of malnutrition(her gut was showing severe signs, but the rest of her body hadn’t caught up yet)? Thanks to these two, I won’t have to find out. Gen is the best kind of mother. She’s not just a mother to her children; she is a mother to everyone's children. Because of her, I've realized I cannot live in a shell without community, without caring about the hurt of others. I aspire to possess her strength daily.

So, I am going to attempt to blog again. This blog will not be defined by Celiac, as we are so much more than this funky condition(by we I mean all of us as Sammy and I are also believed to have it and live as if we do. Testing is pending based on several factors which I’ll go into another time). However, Celiac is a big part of our existence now, and we can’t change that. If anything I happen to post helps someone else, I feel blessed. Understand I’m not a doctor, a nutritionist, or even sane most days. If I had to write a book about our lives right now it would be titled, I don’t know what the hell is going on and what’s for dinner? But, if anything, maybe others can avoid some of the mistakes we’ve made, be encouraged about nutrition, or laugh when they read about me cutting my own hair off with a pair of dull scissors(I was serious about the not being sane part).

I’ll try to be consistent in my blogs, but all I can guarantee is that I’ll try to be real to wherever we are the moment I’m writing them. I’m hoping to stop making excuses about time. That’s not my real reason for not blogging most days. My real reason is selfishness. It’s not like I think my little blog changes the world, but I know we have done a ton of research that someone can benefit from. I keep telling myself there are millions of blogs that deal with Celiac, and this one will not be totally dedicated to that. Why should I put myself out there? However, it was Gen’s article I ran across when Wren was sick, not one of the many other sources about childhood cancer. I keep coming back to that.

Please check out Sierra’s foundation at http://www.sierrarayn.org/home/. Maybe give up your morning coffee for a couple of days and donate to this amazing foundation. I hope one day to be as brave and giving as Sierra and Gen. Right now, I’m just a mom in progress.

Pneumonia, Quarantine, Poop Collection, Cutting Carbs: What we’ve been doing the last six months

This is going to hopefully be the entry that starts me blogging again. I’ve missed it, but as you can see from the title, we’ve been a little busy the last few months. After Sammy’s give-mama-heart-failure stay in the PICU at Children’s, we went into quarantine for months. That’s right, me, a newborn, and a two year old unable to leave the house from January to April. After April we entered “cautious quarantine”, freeing us to move about with certain restrictions. When RSV season hits, we may actually have to go back under for another few months. We’ll see.

Sammy is doing so great, and I haven’t blogged about our experiences during that time because I needed some distance. I can’t say that we’ve all fully recovered emotionally, or ever will, but I think time is giving us some perspective and helping us live without the fear of every germ like we were before. My little man who was being fed through a tube in his nose months ago starts baby food tomorrow. It doesn’t get much better than that.

Since nothing can ever be too boring at our house, Wren has just recently been diagnosed with Celiac disease(official diagnosis coming after blood test panel, but chances of a positive outcome are right around 98% at this point). This means no gluten in her diet, ever. If you don’t know what foods contain gluten, let me give you the short list: everything you eat. The last six weeks of trying to get this crappy poison out of our diet have been overwhelming, exhausting, and just challenging. Add to that her gut is destroyed, so she came back positive for 23 other food allergies. We are currently eating no gluten, dairy, eggs, nuts, corn, yeast, and more. I have so lost the baby weight. And we got to collect poop specimens so it can be determined exactly how much she is not absorbing. After collecting poop, I don’t really want to eat anyway.

Honestly, it’s the been the best and worst of both worlds in a very short time, but I want to think we’re ready for the challenges ahead. We’re trying to pull out of survival mode and move into something a little more sustainable, but it’s going to take time. In the meantime, I hope to blog about our progress, about our diet, about our lives in hopes that it might help others or just be a venting process for me. Feel free to read.

Ways to go from totally relaxed to stressed to the max in less than four hours

Hear the nurse practically wail “the doctor said please let this woman have an induction date” after viewing your NST report

My first thought is that my child is in distress when really the apparent goal was to see if scaring a 42 week pregnant woman would break her water. It was not my doctor who viewed the NST, the results were fine, and I’ve just become the ultimate anomaly in a highly medicated world. So no, I cannot be induced, but all is well.

Consider castor oil
While talking to my chiro/acupuncture doctor, he tried to enlighten me on the benefits of castor oil to induce labor. It worked for his wife twice. I have read up a ton on castor oil, and the only for sure thing I can really glean is this: It’s not if you get diarrhea, it’s when and if you survive it with your butthole in tact. Now, if I knew for sure this would work, I would drink that junk straight from a shot glass and call it a day. However, there are no 100% guarantees with anything. The idea of ending up with horrible diarrhea and still no baby, or in labor having diarrhea on my baby, or with a c-section having diarrhea when I can’t even feel who I’m pooing on because of the spinal has kept me from committing to this procedure. However, just thinking about all this poo has stressed me out.

Telling your husband he was right about something that is so wrong

This is a Christian blog and I am going to assume that most Christians value and understand the importance of sex within a healthy marriage. With that being said, don’t read this if you are easily grossed out.

My husband came home last week after talking to the guys at work and informed me that sex was not the only way to induce labor; his guy friends at work clued him in on another highly effective way to get things moving: drink semen. I stared at him, told him research would be done and if he and his friends had devised this plan to trick a majorly overdue pregnant woman, then he might not be alive for the birth of our son. All of my research came back negative, and we laughed the whole thing off. Then on the phone with my natural birthing teacher a few days after that, she started a sentence in an eerily, familiar way: “you know prostaglandins in semen are absorbed through the gut ten times more than through the vagina, right?” Great! She knows this stuff, has the research to back it up, and now my husband gets to be right about something that no man should be able to hold over your head when you’re big, fat, whale size pregnant and on the verge of drinking almost anything(see castor oil above) to get the baby out. My choices for inducing labor: drink castor oil or semen. Further proof that the Lord of the universe has a much better sense of humor than I could have ever imagined.

Having the sonographer ask you to answer questions about pregnancy, induction, and VBACs

I love my sonographer. We have been through the trenches of low fluid levels for what seems like eternity, and I value her dearly. However, I think when you are in the medical profession and you see an overdue woman these should not be the first words out of your mouth: “Oh my gosh, I was sure you’d be pulled off my schedule by now. How are you still pregnant? What’s wrong? Did the doctors tell you why he won’t come out? Why isn’t he out?” My first thought was to tell her I wasn’t drinking enough semen, but I refrained. She’s nice, and though she has a couple kids of her own, she’s not someone I can see appreciating semen jokes. She might have cried, and as frustrated as I was, I didn’t think making her cry would make me feel better. So I told her everything was fine(uh, she’s been doing the ultrasounds so she should know this) and we don’t know why he won’t come out. When she asked again why I can’t be induced, I explained I was VBACing. Then, though she was induced and I would think would know this, I had to re-explain the risks of medical inductions to a woman VBACing or a woman who’s not since there are significant risks to both. I also had to explain the risks to the baby. By the time I left, I felt I should have been rewarded a doctorate because when you pass 42 weeks, everyone expects you to have all the answers, even if they went to school for this stuff. Why am I not getting paid for this? And why don’t people in the medical field know these facts? Scary stuff.

“The truth is I don’t really even like camels”

We went to the mall to let Wren run off some energy in the play area yesterday, and I had the most awkward conversation with a five year old. Here it is:

Little girl: What’s in your belly?

Me: A baby.

Little girl: People with big stomachs look funny.

Me: Uh, thanks?

Little girl: The truth is I don’t really even like camels.

Me: Okay.

Little girl: Can I take your daughter for a ride?

Me: No.

I’m not completely sure about how I reminded this child of a camel, but I have to admit it was odd to have a conversation that was weirder than the ones I already had last week or anticipate this week. All my conversations last week stemmed around three questions: You’re still pregnant? Well, is my abdomen still protruding beyond what’s normal for the average human being? Then the answer is yes. When is the baby coming? Hold on, let me get my crystal ball out and give you an exact date! Where is the baby? With this one, I just look at my stomach then back at the individual who asked and shrug. I mean, really?

People are concerned and get nervous when there’s no plan, and the last few days have been evidence of that. Parents have the option to get their kids into the world by a ton of means, and I guess that’s okay. It’s just with all the planned inductions, life becomes a little harder for us wait it out types. No one has a clue what to do when the due date passes and the baby is still not here. They all want my contingency plan. Currently, we don’t have one. I have never seen anyone stay pregnant forever, so I do believe Samuel will come out. That’s about it.

I do admit that I am human and have been very tempted to jump on the proactive planning train, especially lately. Words like “fluid dip”, “c-section”, and “zero dilation” are not wonderful to hear when we want no drugs, no surgery, and absolutely no medical intervention short of being provided a hospital bed to birth near. But I cannot focus on the what-ifs or try to lay out a concrete road for how this birth is going to go. It’s pointless, it stresses me out, and stress does not lead to labor. My doctor, as previously mentioned, is amazing! She trusts me, she trusts Sam, and she is all about a woman’s body and its ability to birth. IF, and I pray it does not come to this, I end up with a c-section it will be because Samuel needs it. Otherwise, she’s content to let me ride this out as long as he is. Being that we are cut from the same strong-willed cloth, we may be waiting a while.

So as I somewhat dread going back to work tomorrow, I’m trying to look for ways to make it entertaining for myself. I think when people ask if I’m still pregnant I’m going to say no and give them indignant looks. I might fake going into labor during my classes just to make my 8th graders squirm. Some of the things they do give me nausea, so I think it’s fair. I am fully planning on wearing a sign taped to my stomach that says, “Yes, I’m still here and still pregnant.” My hope is that if I make the answer that obvious I can avoid answering the same question all day. Not having to answer the questions will help to avoid throwing me into thinking about all the what-ifs and messing up my zen mama calm. And if all else fails, I’m just going to take a cue from the five year old and say, “the truth is I don’t really even like camels.” Everybody will think I’m nuts, but I’m pretty sure the question and answer portion of my day will come to an abrupt end.

In all honestly, I may try all the above mentioned strategies. However, I'm also going to work on being more grateful for people who stop and care enough to ask how I'm doing. I'm lucky to have them. They're better than camels.

A letter

Dear Contractions,

I am not trying to tell you how to live your life or do your job. However, your recent choice to just drop in and out of my life, cause me pain, and not offer anything(a baby!) in return has not gone unnoticed. I feel it’s come to a point where I have to say something.

Consistency is key in relationships. Deciding to conveniently appear Monday at my doctor’s appointment and cause me to have to stay on the NST machine for over an hour was not cool. I also did not appreciate you setting off the NST machine’s alarm. I’m still not exactly sure how you did that. It would have been fine if you had kept appearing regularly, but no, you just stopped. When you then waited until later that night to appear and interrupt my sleep, I tried to understand. It was very inconsiderate though.

Last night you made me try three yoga positions at 11 pm before I could get comfortable. You popped in twice at consistent intervals, then you just dropped off. I am grateful for the night of sleep you finally decided to offer me, but after standing on my head, flipping on both sides, and squeezing the crud out of my husband, I thought this was the real thing.

Know that I’ve waited for you for a long time and am grateful you’re here. I’m just a commitment girl; I need to know you’re going to hang around and our relationship is going to result in something beautiful(the delivery of my baby) as opposed to just hurt, sleepless nights, and never-ending doctor’s appointments. You don’t seem to consider any of this. You are so unaffected. Please consider my feelings before you play with my emotions and my uterus. That’s all I’m asking for.

Sincerely,
Kristy

Waiting

Dread permeated the air. I felt it before I even entered the building. Returning from a break to resume business as usual at school is never easy, and the looks on the faces of my students made it clear that they were not going to jump right back in, ready to learn. In an effort to cheer up my first period, I reminded them that we only have three weeks left until winter break. After sharing this news and putting on my best smile, one of my more pessimistic boys dropped his head down on his desk so hard I thought he might have given himself a concussion. When I asked him why this was bad news he said, “Because I thought we only had two weeks.”

It seems we’re all waiting for something, and patience isn’t a game any of us are good at as far as I can tell. I know for a fact that I am not a picture of stillness and calm right now. On my waiting for list are the following:

Waiting for Sammy to arrive

Waiting to discontinue the daycare drop off while Wren is home with me after Sammy arrives

Waiting for Dennis to finish finals and graduate(keep your fingers crossed, Wednesday should be the last day)

Waiting for Wren to get to the point where she’ll just say Grapenuts instead of staring at the pantry crying the fake fit cries until I make her use her words(seriously, she never stops talking, but when she is in a particularly divalicious mood, which is not often, she expects me to respond to groans, cries, and huffing sounds. She’s not an 8th grader yet, so I’m not sure how she has reached these development milestones so early in life. She must be a genius!)

Waiting is inevitable, but here’s the problem: sometimes I find myself focusing more on what’s going to happen when the waiting is over than enjoying what’s happening now. Seeing this behavior in my 8th graders made it easier to see in myself. They have three days to create their own multimedia project using the computer labs and their imagination. On any other day, this would be what they considered an awesome assignment; today they came back to school just waiting to leave again, so they half heartedly began their projects. I viewed this as very ungrateful, which it is. So am I. I have a great husband, wonderful daughter, easy pregnancy, no real complaints, and all I could do was try to get through the morning routine to get to work. In my mind, I thought maybe I wouldn’t be going back to work, that Sammy would make a Thanksgiving break appearance. He didn’t, and quite frankly, it was naïve to expect him to. He’s not due until the 7th, and if he arrives before Christmas that’s fine with me. My children really dig the fashionably late statement. But I want to meet him. I want to go into labor(I’m not nuts, I really WANT this experience). I’ve been reading a book a friend lent me about natural childbirth experiences, and I’m even more anxious to have a shot at this now than I was before. I’m ready for Dennis to not have to give up hours of his day to homework. He already works so hard.

But focusing on all of that has left me missing the now. I love Sammy’s kicks and his little hiccups. I won’t feel them inside of me once he arrives. And really, I love being pregnant. I feel great and the fact that there is a little life inside of me is still awe inspiring.

With the grunting, sometimes tantrum phase, Wren has also started saying please and thank you often. She doesn’t call us mommy and daddy but says “my mommy” and “my daddy”, which is adorable any time of day. Her go to foods are apples, corn, and homemade protein bars. There is so much about this phase that is amazing, and the tantrums are a very small percentage of the overall day.

As for Dennis and college, well, I’m just ready for that to be over. I know I cannot be as ready as he is, or as Wren is for that matter. He doesn’t see her from Monday night until Thursday morning, and they NEED to see each other. They both have tantrum tendencies when too much time goes by without each other.

My goal for the week is to focus on the now, the great events happening at this moment without so much preoccupation with the future. When Sammy gets here, he gets here. I’m trying to convince myself he’s not due until Christmas so anything before that will be a pleasant surprise. When Wren gives me the sounds that express dissatisfaction instead of the words telling me what she’s actually dissatisfied about, I’ll just think about the “I love yous” and the way she kissed both cheeks, my forehead, and my nose before I got out of bed this morning. College we only have to contend with for three more days. We’ll get through it. Life is about now, and our now is good.

A few things...

Things that make me smile

Starbucks offering buy one get one free holiday drinks this weekend

Wren’s positive body image. After putting on her clothes this morning, she looked at me and said, “I so cute in red pants!” I could learn from this child. I had just been examining the situation that is my upper thighs now touching.

My grandmother coming to clean my house before Sammy gets here. I love this woman. I know she goes home after scrubbing my baseboards and cleaning under my refrigerator and wonders how something like me flowed from her genealogical line, but I don’t care. I’ll take the judgment for a spotless house.

No TV. Really. We have no channels. My grandmother may flip when she gets here and there is no Dr. Phil. Don’t worry, I’m keeping the house super messy so she won’t have time to think about it! I’m mercilessly hard on this 79 year old woman.

Wren taking her eye drops that I believe actually contain the word “acid” in the ingredients without a fuss. It took a few rounds, but she’s a pro now.

Date night

An unexpectedly large check from the side business

Things that make me put on my look like I have gas but am really just frustrated face

My 8th graders acting like writing a persuasive paper is a NASA assignment after three weeks of being hand held, spoon fed, and checked in on while working on this very assignment. When one of them had the audacity to ask me what a thesis was today, tears literally welled up in my eyes. We’ve only been covering that for 12 WEEKS! That paired with hearing the word “Seriously?” bathed in sarcasm when I tell them for the 500th time they cannot use the word you in a formal paper makes me so grateful for Thanksgiving break next week. I might be resigning if there wasn’t a break near.

Being asleep when my husband gets home from college. He came home at 10:10. I had already been out for at least two hours. Such a waste of time together.

Falling asleep while thinking about all the things I need to get up and do. I was running a list in my brain of the chores that would be great for me to get started on when I zonked out next to Wren last night. How very productive!

Missing Bible study and prayer time after starting the week so strong and truly enjoying it. It’s amazing how quickly I get apathetic about the things that matter.