Thursday, March 13, 2014

Family Update

I keep telling myself I'm going to write more. I really WANT to write more, but time is an ever-growing issue that I haven't managed to solve. I could use about six more hours in my day.

Things in the Craft house are busier than ever. Between wrestling, which is now over, swim lessons, and science experiments, I barely have time to sit for just a couple minutes. I have always needed a few moments of solitude to gain back my energy in order to tackle the next thing. Apparently, even that has gone by the wayside.

Ethan has moved back into my bed. I'm not sure how these things happen. It seems to be a very fluid, very slow occurrence that happens before I realize it's happened. I find myself realizing he's sleeping with me every night again, and I'm at a loss as to how to stop it yet again.

This time, I've been letting him lay in bed with me at night while I'm reading. He quietly plays his leappad (please no comments on how awful that is) while I read. When I say lights out, he goes to sleep. He gets more sleep that way and we're all better for it. Except my husband is afraid to wake the screaming bear I become when I'm woken up shortly after I fall asleep, so he's taken up residence in Ethan's bed. I'm not sure this is healthy.

I've thought about ways we can get him back into his own room. And then I thought about how long we've been dealing with these bed time issues. Well, that's easy. The very first night he came home, he screamed bloody murder until I picked him up and brought him to bed. The rest is history. And it's hard to kick the kid out when he holds my hand and asks, "Do you know who I love more than anybody in the whole entire world and universe?" When I say, "Who?" He says, "You, Mommy. I love you that much."

Someday he won't. Someday he'll enter his teenage years and look at me like I have three heads and fangs and am dead set on ruining his life. Someday he'll fall in love with someone else. And that person will be the center of his world and he'll still be mine. I think knowing those things holds me back to forcing the bed issue now.

I suppose I'm lucky the other little munchkin in the house prefers his bed. It's amazing how different they are. Don't get me wrong, they're similar in some ways. They're both ornery boys that purposely push each other's buttons. But Dylan is much better about entertaining himself and sleeping in his own bed.

Speaking of Dylan. That child is going to be TWO in less than two months. I can't believe it. When I look at him, I have a hard time seeing him as nearly two. He still seems so small (he is). He says TONS of words but also still babbles a lot. He's beginning to recognize some letters here and there and loves to count everything....one, two, one, two, three, one, two. He's really been working on his jumping skills lately. He put two objects right in front of each foot and tried to jump on them. It's funny to watch him.

I'm beginning to think the child will never get more teeth. He only has six. Weird. He's just getting over his first real cold of the season. I've been fortunate so far not to have a lot of illness in the house. That has been nice!

Over the past weekend and week, the weather has been pretty nice. With the time change, we've been enjoying the outdoors after work. Ethan's been working on his tree-climbing skills. I love watching him climb trees. It reminds me of how many trees I scaled as a child.

Things keep moving forward. The boys definitely keep me busy, and the gluten-free shift has definitely put me in the kitchen a lot more than in years past. But we're all doing well with it and Ethan is doing so much better. Except for his Chex obsession. I refuse to buy more Chex. They're everywhere.

Tuesday, February 25, 2014

"Making" Things & A Little Ethan

So I've really jumped into this whole DIY product stuff. When I think about how much of it I make, I'm rather amazed with myself. I've always wanted to make my own things, but never really knew how. The internet is a wonderful thing. Currently, my list includes
  • Baby wipes
  • Deodorant
  • Body wash
  • Laundry detergent
  • Dishwasher detergent
  • Lotion bars
  • Shower cleaner
I think that covers it. It's super easy. People ask me how I have the time, but once you have the ingredients on hand, most of it takes less than five minutes to make. And I love these products way more than their expensive, chemical-laden counterparts. I know what's in these products. The added bonus is that they usually cost pennies on the dollar when compared to store brands. I WISH I would've learned these techniques ages ago.

Ethan
If you've been around for any time at all, then I don't have to tell you how challenging my firstborn is. He's a handful and more. He's willful and determined and persistent and intelligent. It's a pretty exhausting combination. We struggle with him at school, and he's only in Pre-K. I fear kindergarten in so many ways. I mean truly, wholeheartedly FEAR it.  I fear his behavior and absolute resistance to conforming to the "norms" that will be expected of him. I fear his teacher's patience. I fear his adversity to change. I fear his boredom with the things he already knows.

I fear his unrelenting avoidance of the things he doesn't feel he's "good" at. I fear so much of what's to come, but most of all, I fear he'll lose his love of learning. I fear he'll be shattered by the wrong words and the encouragement to be like everyone else and focus on what everyone else is focusing on. I fear he won't engage and will learn to abhor the very institution that is tasked with preparing him for the intellectual world.

And while I know there are plenty of people at the ready to give me well-meaning advice about his behavior and parenting skills and his need to learn how to operate within social norms, those people don't know my child and they don't know the things we do at home in terms of discipline. I refuse to be made to feel I'm inadequate as a mother because I know I'm trying. So.Very. Hard. I know he has to learn those skills, but I also know he needs to be engaged and stimulated in a learning environment.

I was so fortunate to see exactly what Ethan is like when he's engaged over this past weekend. We went to a Discovering Engineering Event geared toward elementary kids about all sorts of engineering fields. For 2.5 hours, we walked around, we experimented, we talked. Ethan stayed 100% engaged the entire time. He paid attention. He asked questions. He answered questions. He learned. He engaged. He felt heard and respected. It's an amazing thing to watch your child light up when they realize like-minded people actually care about what they're saying.

I mean, I try to be all scientific with him. I research so much stuff and look at so many ways I can engage his scientific heart, but I don't speak the language as well as other scientists. When Ethan started explaining how lightning forms and was correct, I was blown away. I didn't know he knew that. I had no idea. Watching him run through logic sequences without batting an eye was amazing. Hearing him explain how Magma rocks are formed to a group of kids blew me (and the demonstrator) away. And watching him determine how to make paper stronger so it could hold a whole jar of pennies was also quite eye opening.

He was in his element. He excelled. He listened. He synthesized. He rationalized. He didn't want to leave!

I am so thankful I chose this event over the Cat in the Hat event I was going to take him to. I've never seen him so engaged. I keep saying it because it really was something to see. There were no outbursts. There were no "reminders" of behavior needed. There were no consequences reiterated. There was simply no need because my child was too interested in learning and sharing and being part of a group of like-minded people. It was FANTASTIC!

And it's even more terrifying. I know now more than ever that he's bored. I know now more than ever that the public school system is not going to be able to engage him. I foresee many bumps in our future road. I'm looking for alternatives. I'm looking for clubs. I may even start a club. He needs an outlet for his interests.

I can tell you this....nothing with that child is ever easy, but there are so many moments when I stand enthrall of who he is and what he may very well become.

Thursday, February 20, 2014

Alive and well

I'm still around. Just not around here. Work has been busy. Home has been busy. But we're all still here. Updates? Sure.
  • I'm all kinds of messed up over this Hailey Owens thing. I know these things happen all over the country, but it seems to have a more bitter impact when it's in your own back yard. I'm sick over it. Just sick. 
  • This event has also made me reexamine the things I let Ethan do....like play outside. I'm really not comfortable letting him out alone now, even though we live in the country. I also have been thinking about ways to communicate the real danger of some people without making him distrustful of everyone. I mean, this guy was a public school employee that worked with kids. They should be able to trust him. And that's the rub; as a parent, I feel I have to look upon everyone with suspicion. I can't trust anyone to be safe with my child. It's a hard road. And I'm already so distrustful of most people, which is something I don't want my children to feel, but alas, how do I teach them to trust in such a scary world when I can't do it?
  • Ethan is doing fantastic since going gluten free. He completely understands the need to avoid all gluten and is quick to ask if something contains the intestine-damaging stuff before consuming anything. It makes it much easier on Momma. I'm fortunate to have a child that just "gets it." 
  • I got his medical bills for all the blood work and procedures. Ugh. Expensive. 
  • I have to schedule an appointment for a mammogram and ultrasound on my left breast. I've had this done before in my 20s, but the lump has changed, and I rather be safe than sorry. I'm not overly concerned, but I'd be lying if I didn't say I'm a little nervous about it. I don't know who wouldn't be. 
  • Dylan is fantastic. He says tons of stuff now. I can't even tell you everything he says. I love hearing his little voice say "thank you." Or "bless you." Or "Okay." Or even, "live long and prosper." Really. He does. He's still the tiniest guy I know. At 21 months, he weighs a whopping 20 pounds and still wears his 12-month clothes. He's too cute for words. He loves to sing and is pretty good at keeping the rhythm and throwing the right words in here and there. And he is a die hard Thomas the Train fan. He can name MOST of the trains. His favorite, from what I can tell, is Percy. He sleeps through the night MOST nights, which is a God send. I need the sleep and have waited a long time for it. 
Ethan's preschool is having a Parent's Night Out this Friday. I'm super excited. And they take siblings. Yay!

Tuesday, January 28, 2014

Raising Our Children

 This is my youngest brother. I don't know how old he is in these pictures, but I can say that he still looks like he does in the second picture. This boy was a sweetheart. Rowdy? Yes. Hyperactive? Yes. Annoying to his big sister? Most definitely. But sweet nonetheless.

Today, this boy is in his twenties. He struggles to make ends meet. He's been down roads I can't even discuss here and has managed to not follow his older brother's fate by sheer luck. When I see these images, it makes me think. It makes me think about a past that is riddled with hardships and self doubt. It makes me remember how hard life was growing up. And it makes me sad for the boy smiling back from these photos.

Photos are supposed to bring a since of nostalgia. A smile to ones face. A glimpse into a childhood left behind. But I can't say there was a "childhood." Did we ride bikes? Yes. I taught this boy to ride a bike. Did we fly kites? Most definitely. Did we spend hours in the woods pretending we lived in a far away land? Many times. But we always had to go home. We always had to go back to a house filled with yelling and cussing and hitting. That little boy in these pictures saw more before he was three than most people care to imagine.

That smiling face is a facade, hiding fears and angers and heartaches that would fester into adulthood and likely beyond. That little boy lost self-esteem and confidence and was told he would amount to nothing. That he would be nothing. That he wasn't smart enough, wasn't good enough, wasn't strong enough.

I can't share the secrets of his adult life because 1) it's not my place and 2) I'm not involved enough in his life. A divide occurred between us likely when I moved to California when I was 12. Nevermind that I was gone less than a year. I left again when I was 17. I left for good and rarely came back home. Holidays. That's when I would appear and even then, I would spend hours reading in a room to my self. I spent little time with my siblings, so it's no wonder he doesn't turn to me. I wish we were closer. I wish I could help him. I wish he could share his childhood battles with me. Not because I think I could cure it all for him. He has to want that. But because I know all too well many of those feelings and have been forced to come to grips with a childhood that was less than childlike in order to move forward toward a happy adulthood.

I understand how parents can indulge their children, especially if they carry these feelings and the fear that they'll repeat these mistakes. It's likely my biggest battle. I don't want my children to ever feel unloved, abandoned, alone, fearful before there is anything to fear. That's what we felt. My brother has gone in the opposite direction. While I don't doubt his children know he loves them, I do know they are exposed to things I hope my children never experience.

Children, while resilient, are fragile. Yes, they have an uncanny ability to shake it off and come back for more. But as they grow into adults, those things don't disappear. They stay with them and haunt them as they try to navigate an already unstable world. In these cases, poverty takes another, separate toll, as climbing out of that ditch becomes a fight against all one knows and all one hopes to be. Leaving behind the people who knew you best to forge a new path isn't easy. It takes strength and conviction and willingness to say goodbye, even if you still talk on the phone or visit over the holidays. That relationship is rarely the same.

Why would he turn to me? What do I know? I can see why he would turn away. Why it would make sense that I wouldn't understand. We're in two extremely different places. The only thing that binds us is our past, and he once told me I left him. I left. And I didn't come back. I have added to the pain I know he deals with, and I hate that. I wish I would've been stronger. I wish I would've come around more often. I wish I would've put my own anger aside during that time to be there for my siblings. But I didn't, and I know I couldn't. Not then. My own emotions were eating me alive and I was in a state of self-preservation.

Parents, I think, should realize the impact they have on a child. It's not just during childhood that their actions affect their children. It imprints upon them for a lifetime. A lifetime of love and joy and self-worth. Or a lifetime of doubts, fears, abandonment, and pain. Yes, with enough counseling, one can move past many of these things, but that doesn't make the memory of them disappear. And it doesn't stop those feelings from creeping in every now and then. The experiences a parent gives a child last a lifetime. A lifetime. My memories still haunt me. The things I've lived through still haunt me. Thankfully, there were moments when I saw true love from my mother. Moments that I cherish and try to hold on to tightly when all those other moments creep in.

When I look at my children, I know how damaging my choices could be for them. And that is why I struggle so hard as a parent. The child in these pictures had potential. He had every right to be where I am. He had every right to be loved. To be told he could make it. To be encourage to overcome obstacles and succeed. But no one did that for him.
 My youngest on the right at his kindergarten graduation
 My oldest brother, who is currently serving his second term in prison

Thursday, January 9, 2014

And then it began to sink in....

I know there are plenty of people out there with Celiac Disease. It strikes 1 in 133 people, after all. But for me, this is all new. As with anything new that I don't fully comprehend, I research and research and research until I feel adequately knowledgeable.

I don't just research the basics; I dig. I want to know everything. I want to know if those small amounts of gluten found in "gluten-free" processed items will damage my son's intestines. And guess what? They, in fact, can. Now they say it depends on your own sensitivity; however, a Celiac is a Celiac. And some people with the disease show very few symptoms but have a increased risk of premature death regardless of loss of villous, the finger-like hairs that absorb nutrients, in the intestine. Why? Sure, you may not become malnourished, but you may very well be at risk for other side effect, including heart disease and liver damage.

Gluten-free processed products are rarely gluten free. It's true!

"You're probably wondering by now what all of this means to you — after all, if you're careful, you're probably following a strict gluten-free diet with no cheating, which means you're 100% gluten-free ... right? Well, no. It's just about impossible to be 100% gluten-free because "gluten-free" foods actually contain gluten. Grain products — those gluten-free breads, cereals, waffles and crackers — are the worst offenders."

So why is it considered "safe" for people with Celiac Disease? Because when they performed the studies, they used people with completely healed guts. However, that percentage is small, so says the University of Chicago's Celiac Disease Center:

"While healing may take up to 2 years for many older adults, new research shows that the small intestines of up to 60% of adults never completely heal, especially when adherence to the diet is less than optimal. The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine."

SIXTY percent! More than HALF of people adhering the what they believe is a gluten-free diet do not completely heal.

And that is why my reality just got a lot scarier. That is why I am realizing the extent of the disease and just how serious it is. Because honestly, I kind of looked at it as just a dietary change. It would suck, but all would be well. Not so fast, says the research.

"The researchers also found that those diagnosed before age 20 had nearly twice the risk of death, overall, but Ludvigsson says that, too, needs to be put into perspective. 'Kids are at increased risk of mortality,' he says. Even though the risk is increased, he says, it is still very low. The higher risk in those with less severe disease, Ludvigsson says, may be because of the untreated inflammation, as those patients may not be told to follow a gluten-free diet. The risk of death was found to be highest in the first year of follow-up, then decreased. Deaths were often from malignancy or cardiovascular disease, the researchers found. Exactly why isn't known, but Ludvigsson says that the longtime inflammation associated with celiac disease may boost the risk of other disorders, such as heart disease and cancer."

A risk of untreated Celiac Disease is Lymphoma. 

But what, exactly, does it mean to treat Celiac Disease? For me, it means doing all that I can to remove ALL gluten. I already knew this was going to be tough because gluten has to be replaced with something, and that something usually comes in the form of other processed chemicals. I'm already all kinds of crazy over processed chemicals. We know that. So I don't look at a box that says, "gluten free" and think, "Oh, that's safe." Nor do I take medical advice at face value. It's not that I don't trust doctors. I believe they are trying to do the best by the patient--there are exceptions--but they're human. And we're human. 

There is also a gluten-free craze going on in this country.

It's called supply and demand. The consumer wants to be gluten-free, the companies are going to find ways to profit from that by serving the need. The trouble is it hurts people who have REAL issues with gluten. It hurts people that NEED to be able to trust the products on the shelves. And, by nature, Americans are a trusting lot when it comes to food on the shelves. "If it says it's gluten-free, it must be true." No. No. No. It's not. Unless you're talking about products that are minimally processed and never contained gluten to begin with...think Masa Harina (made from corn). But of course, you then have to worry about whether it ENCOUNTERED gluten. In other words, has it been cross contaminated? Because guess what? That's no good either. 

So through the research, I have begun to realize this is NOT just a dietary change. This is, in fact, what I already knew. An autoimmune disease. It's a serious thing, and one that I can't take lightly. I have to be diligent in ensuring Ethan gets what he needs and avoids the things that will increase damage. I am his mother, after all, and it's my job to protect him; regardless of the difficulties it poses.
 

Wednesday, January 8, 2014

A Moment of Selfishness

Last night, I walked in the door, threw my stuff on the table and walked into the kitchen. Immediately, I grabbed a potato out of the pantry. Then I turned to the refrigerator and grabbed a couple carrots and a small head of broccoli. I put the plates back on the George Foreman and pulled out the Cavendars seasoning. I quickly washed the produce, pulled the cutting board and knife out and began chopping. I threw the produce into my steamer and pulled the chicken from the microwave. I seasoned each piece and strategically placed it on the foreman to ensure all four pieces would fit. I pulled the cottage cheese out only to discover it had gone bad. I worried over whether the boys would eat. I thought about what I would eat with my chicken because I don't even like chicken.

And then I went to my bedroom to get out of my uncomfortable work clothes and into something more homey.

This is my reality. We ate at 6:30. Dylan takes a bath at seven and is ready for bed by 7:30. Timing is everything. And from now on, there will be no, "I don't feel like it." Or "let's just eat PB&J tonight," or "Can we just throw some breaded fish in the oven?" It won't matter how exhausted I am. It won't matter what time I get home. There is no mac & cheese. There are no hot dogs. No bread. No pasta. No. No. No.

Yes, yes, I know there are alternatives. But have you ever read the labels to those alternatives? I already try to stay under six ingredients with a goal of five. In an effort to produce foods that are similar to the gluten varieties, there are added chemicals, preservatives and sugars. Oh my! The sugars! I do my best to steer clear of HFCS. I try to limit food colorings. I try to avoid things like BHT. Have you looked at the ingredient label on a box of "gluten-free" Chex? Sugar, Fructose, Molasses, mixed tocopherols, and BHT. And Udi's Gluten-Free bread? A whopping 19 ingredients.

It's true. I know a lot about food. I know more than most. So it makes sense that people conclude that this transition might be easier for me than others. But here's the rub. I can't forget all the other things I know. I can't say, "Oh, well, it has HFCS, but it's gluten-free, so it's okay." I cannot do that. It's like the "low-fat" craze. I don't buy low-fat cheeses or sour creams or cottage cheeses or pretty much anything because they have to substitute the good-tasting fats with other stuff equal or worse for your body. Usually worse. I don't buy shredded cheese because of the cellulose and preservatives used to keep it from sticking together. I grate ALL my cheeses.

So while I know the biggest burden of this whole thing is being placed on Ethan because he will have to deal with this his ENTIRE life, I am going to be a little selfish right now.

I don't want to do this. I don't want to put in all the extra work it's going to take to keep our foods as close to natural as possible AND gluten-free. I don't want to inspect every ingredient EVERY time I shop. I don't want to think about whether the ketchup has gluten in it. I don't want to find alternative desserts to feed his sweet tooth that are healthy AND gluten-free. I don't, I don't, I don't. I don't want to have to think about it all the time, every day, every meal, every outing, every birthday party, every this, every that.

But I'll do it because I have to.

I've never been great at staying the course. I can do a few weeks, a few months. Beyond that, I slip and slide around until I regain traction. And that's what sucks. There is no slipping and sliding because every bite of gluten my son ingests will damage his gut. And so my selfish rant is nothing more than that. A rant. I rant at the unfairness of it all. A rant at the fact that parenting and working and staying healthy are hard enough without the added pressures of watching every tiny bite we ingest and knowing every hidden gluten ingredient on the market. Yes, I'm thankful we discovered it, and yes, I'm thankful we CAN do something about it. However, that doesn't make it suck any less.

Tuesday, January 7, 2014

Going Gluten Free

It's confirmed. It's done. It's truly happening. Ethan has Celiac Disease. Most of his villa are gone, meaning his little body is not absorbing the nutrients it needs to thrive. The cure? There is no cure. However, a gluten-free diet does keep the gut healthy and helps stops damage from occurring.

After Ethan's endoscopy on Friday, the doctor kindly told us to have one last hoorah over the weekend before going to gluten free. I know some people would wonder why we'd continue to feed our little one something we KNOW is causing damage. I get that. But I also know that this change is not a temporary change. For Ethan, it's a lifetime change. This isn't a fad diet. It's not a "healthy diet."

It is an autoimmune disorder.

It means there are no lazy nights for dinner. No take-out without intense examination. No Incredible Pizza. No birthday cake at the birthday party. No exceptions or nights off ever.

And so, as we look to the future, it seemed fitting to allow Ethan an opportunity to come to grips with his new life and eat all those favorite things. It gave us all a chance to discuss the changes ahead and why the foods we were eating are so bad for him. But I can tell the Celiac is in full force. He barely ate a thing the past couple of weeks. He complains about his tummy hurting after eating.

I'm glad we've started this journey to healing his gut. 

No one has said this will be easy, but a good friend did say that if anyone had to do it, it's good that it's me. Why? Because I already know so much about food. I can read a label. I pay attention to the foods we eat. I make monthly meal plans. I buy organic when possible. I try to buy things with no more than six ingredients. I'm diligent about food. But I'm also a whole wheat kind of girl. I try to avoid refined foods/carbs, but there are tons of whole wheat/whole grain options out there. And I'm not perfect at it. I have days, weeks, months where I barely hit the mark because life is so busy or I am so tired.

There are no more exceptions. 

I have to learn where gluten hides. I can't take a day, a week, or a month off. I can't slide backwards. Because every time I do, I will allow for a potential "gluten" event that is damaging to my child. This isn't going to be easy. Yes, there are tons of gluten-free options out there, but that doesn't mean they're safe for someone with Celiac Disease. I'll have to watch him to determine his particular sensitivity to miniscule amounts of gluten and to cross contamination. I'll have to be diligent at every turn.

And so will he. 

Ethan is young. This will become his lifestyle. I know that. But he, too, will have to be constantly diligent about what he ingests. He will have different food experiences than I had. He will always be conscious of what goes into his body. Is that a bad thing? No, probably not. However, we all fall off the wagon. But for him, it will cause damage.

And damage to the gut affects the brain. 

If you haven't heard of the gut-brain connection, you should look it up. Our guts and our brains were created out of the same type of tissue in the womb. There is a strong connection between gut health and brain health. And more and more is being discovered about that connection. It will be interesting to see how this diet affects him.

As hard as the transition will be, I am so glad we found out. 

I know now that Ethan has always had Celiac Disease. Essentially, he hasn't felt good a day in his life and has no idea what it's like to feel good. I can't imagine that and I'm so happy I pushed so hard to find out what was going on. I'm thrilled that he will get healthy again and he will get to experience what it's really like to FEEL GOOD.

This journey is both terrifying and exciting.