Monday, October 10, 2011
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.