Monday, July 21, 2014

Deepest Suffering and Deepest Joy


This is to all my brothers and sisters in Christ and anyone seeking to know God and see through His eyes.

It's been on my mind a lot lately, and I needed to share it. Hopefully this will help, encourage, or push someone on in their life's journey. It's about being Jesus to a broken world. It's about sorrow and joy and empathy and action.

Lately I've been talking to a lot of beautiful warrior moms in some TSC forums...many of them just receiving the devastating diagnosis of TSC for their child...or TSC and epilepsy....or TSC and epilepsy and autism...They're working hard for their babies...researching, asking questions, praying, crying....Exasperated, they ask about how to get their baby to eat, who can't seem to figure out eating solid food....or how to get their child to sleep, who seems to be the walking (and jumping and screaming) definition of insomnia. They ask about seizure meds and diets and side effects and surgery. About heart tumors and meds, about how to get their child to stop biting/hitting/screaming/raging when nothing else works. If they can know how severely their child will be affected by this disease. About clinical trials and medical marijuana and the best hospital or TSC Clinic or doctor for their child. I've read countless comments that says "I HATE TSC!" or "I HATE EPILEPSY!"

And i read these online conversations and I cry.

I remember...that I've been there. And that I'm still there. And as much as I wish I could take TSC away from my daughter, I see the beauty in the midst of the pain, and I see how I'd still be blind to much of the world's suffering and still living in my little bubble.

I've come to a point in our journey when I might not like TSC or epilepsy or Audrey's meltdowns...but I love how strong it's made my daughter at only four years old. And i love how strong it's made me. I love how strong it's made Asher. I love the compassion it's taught to my seven year old son who, when Audrey's raging, and I'm at wit's end, says,

"It's okay mom, I got this. I can get her calmed down...." And he asks Audrey if she needs a hug and if he can read a book to her. And continues to reach out to her, unshaken, when Audrey attempts to punch him, through tears. What seven year old boy does that? Mind you, it's not always like that. They have their fights. He does things to antagonize her and she steals his stuff, like every other group of siblings 2 years apart in age. But then there are those times when I've battled Audrey to nap for the fifty billionth time, and i fall onto the couch exhausted...but unaware of my own exhaustion because it's become my normal....

...and Asher hands me a glass of water, puts his arm over my shoulder as if he's comforting a friend, and says, "Rough day, mom?"

I ask him why he said that, since I think I'm fine....

"Well Audrey was having a rough day and she was hitting and screaming and I know that's hard on you."

Yall, I'm not making this up. This conversation with my 7 yr old son actually happened last week.

My kids cuddling during my daughter's EEG

And I love that when I take Audrey to the doctor, or the grocery store, or Chuck E Cheese....she strikes up conversation with anyone and everyone.... She saunters over, cool as can be to complete strangers and says, "What's up?" Gives them a high five and flashes her dimpled smile. And in a city with so many lonely people and perhaps the lowest levels of hospitality I've seen in any city anywhere, Audrey is not afraid to make connections. She's not afraid to hug the boy at the ophthalmologist's who has cerebral palsy and a walker. Or the older boy in the same room wearing a helmet. Or the almost-7 foot young men playing basketball at the park.

And I realize, I'm not scared for her future any more. At least not hourly, daily. I don't know her future...I don't know if her seizures will come back with a vengeance. But even when she had a ten minute long seizure, completely out of the blue that necessitated calling 911....I realized I wasn't nearly as scared over that as I would've been a few years ago. 

And I'm thankful that though the doctors said she'd never walk, talk or make eye contact, that she is running and telling me off when she's mad and carrying on conversations with strangers at Chuck E Cheese. And yet even though we're doing okay and she's beating the odds, I still cry. But not out of fear. My heart breaks.

I want to encourage and comfort other moms as an angel woman once did to me by saying they'll find their new normal. They need not be petrified forever. My deepest desire is to help others who are where I was not very long ago.

Here's what I've learned: if you want to work hand in hand with Jesus in this world and do kingdom work, you have to see the way God sees. You can't numb the feelings and you can't turn a blind eye to the suffering in the world. If you really ask God to see this beautiful messy broken world  the way he sees it, apathy isn't an option. You will experience greater joy at the seemingly insignificant, and you will mourn deeply for complete strangers.

I used to wonder why Jesus wept when he arrived at his friend Lazarus's grave...when he knew his friend was going to die, and he knew he was going to bring Lazarus back from the dead.

Because Jesus wasn't weeping out of fear. He was weeping because he felt the pain and brokenness of this world. Because death was never supposed to happen. Ending of relationship (through death or divorce or miscommunication) was never supposed to happen. Seizures and tumors and sensory overload and pain were never supposed to happen. Sin (which is more than people "doing bad things" but rather the entirety of the brokenness of this world) was never supposed to happen. Jesus grieved this. He cried. And he stepped into the ugliest parts of it and he felt it and he faced it and absorbed it and that's where death was defeated. And while the war is over, the battle rages on, and God asks us to join in. The beautiful thing is that when you face the ugliest and scariest and most unjust pieces of this life, you see beauty and joy like never before. I promise. You'll see things other people can't see.

And the world needs you to do that. Please don't be afraid to enter into peoples' messes. Don't be afraid to help the homeless, the divorced single mother, the veteran with PTSD, the woman with alzheimers who treats you like dirt, the suicidal teen boy struggling with his sexuality. Don't be afraid to foster children with no parents, even if their mothers did drugs while pregnant. Don't be afraid to smile and say hi to a child who can't make eye contact with you. Wherever God opens your eyes to the suffering in this world, enter into it in whatever way you can. They will be blessed, you will be blessed. And this is how God's kingdom comes to earth.

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. John 16:33

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. James 1:27

Wednesday, January 29, 2014

Define "Risky"...

First I should say I really DO almost have finished that third installment on natural treatments for TSC and epilepsy. I really should've written it a year ago, but last year was a very crazy year. But I wanted to share this thought while I work on finishing up that other article.

Research and life experience has taught me that there are a lot of natural treatments for just about every illness under the sun. I had my daughter unassisted at home; I've cured ear infections and pink eye with breastmilk; I've cured shingles with Lysine; pertussis with sodium ascorbate (Vitamin C); the flu with elderberry syrup and/or garlic and raw honey; colic and silent reflux with diet changes and probiotics; fungal infections with coconut oil. I could go on...the list is long.

But sometimes natural treatments don't work. Sometimes western, prescription treatments don't work either. And when the discussion comes up about surgery, particularly with epilepsy, inevitably people say "but that's so risky! she seems to be doing ok...are you sure you want to do something so drastic?"

Being on the other side of four successful brain surgeries with my daughter, it's easy for me to say this, but I just wanted to talk a bit about real "risk" vs. fear of the unknown.

For those of us battling epilepsy, especially medically refractory epilepsy (epilepsy not controlled well with medication), sometimes the conversation of brain surgery comes up. It did regarding my daughter at an early age. She was 14 months old when I started seriously researching the prospect of epilepsy surgery. Red tape and insurance issues prevented it until she was 3, but she was a good candidate from much earlier on.

I guess I should start by saying the obvious. There are real risks to epilepsy surgery. I've spoken with those whose children have had strokes after epilepsy surgery. Others, their child's personality was permanently altered. Allergic reactions to anaesthesia can be fatal; blood loss is always a concern. Obviously brain surgery is a "big deal". But often parents talk about brain surgery as the absolute last resort, or NOT an option because it's so much more "risky" than uncontrolled epilepsy or being on five seizure drugs.

Some of what I'm about to say may sound harsh, but I only say it because I've been there, I've been in the place of having to make these decisions, and it feels sometimes there's no good answer. I had to do a lot of soul searching and I recommend that parents in this position do the same. What I had to do was set aside my fears and emotions, and instead look at the cold hard facts. What is the statistical likelihood of the various side effects or complications that come with the various (or limited, depending on what you've already tried) options?

What I realized is that honestly, many of the drugs she had been on had a stronger likelihood of side effects, some potentially very serious...but sometimes the side effects happen slowly, over time. So they're every bit as "risky"...but not quite as "scary". Let me explain.

Audrey's first drug she went on for infantile spasms at 4 months old was ACTH...a very very strong steroid...and she was on large doses of it. This steroid severely inhibits the immune system, such that a simple cold or mild scratch on the skin could be potentially fatal. It also put her at risk of developing diabetes, not to mention making her extremely obese.

Topamax inhibited her ability to sweat so much that her sweat glands didn't start working again until 3 years after she stopped taking the drug. In the summer time, this can definitely be fatal. She regularly got bloody heat rashes in barely 80 degree weather in the shade. It also changed her personality and due directly from the drug, her speech regressed severely, and this is a very very common side effect of the drug.

She had a psychotic reaction to a Dilantin bolus in the hospital where she looked like something straight out of a a horror movie, her BP and heart rate went through the roof, her brain activity wasn't even measurable on the EEG because it was such a mess, her eyes were rolling back in her head, but not like with a grand mal seizure...more like someone who looks possessed in a horror movie. It was scary. Her voice changed. I dont think the nurses had ever seen anything like it.

Deadly skin rashes can occur from reactions to certain seizure medications, and they are relatively common. And then there's SUDEP....ANY uncontrolled seizures that seem "mild" can snowball to where the condition is less controlled and more risky. Sudden unexplained death from epilepsy is a risk with anyone battling epilepsy, especially if the epilepsy isn't medically controlled well.

And of course, ANY prescription seizure medication is going to slow down the brain, and often the effects to cognition and learning are worse with the drugs than with them just having seizures.

Now, having been through 2 intercranial (surgical) EEGs, a left temporal tuber resection and a right temporal tuber resction within 2 months' time with my 3 year old daughter...I can say that it was very stressful. It was not an easy time. She was miserable and sore; i got no sleep. She had an irritated spot from the grids on her brain after her 3rd surgery that made her feel things that werent there; I had a mini- stroke due to stress after her 3rd surgery, and threw out my back. It went as smoothly as this sort of thing could possibly go, and yet it was still one of the hardest things i've ever been through.

BUT....over all, it has caused far fewer side effects than the drugs she was on did, she recovered surprisingly fast, and from the first night after her surgeries, we saw HUGE improvements in her cognition and speech. She began sleeping through the night for the first time in her life..even when her seizures were controlled by drugs she still woke up throughout the night. No longer.

Also there were things that I thought were just part of who Audrey was, or things i thought she'd never learn how to do, and had kind of settled with that...but since the surgeries, she's changed...for the better...she's learning things I never thought she'd learn, doing things I never thought she'd do. This is something that did not happen with any of the eight seizure drugs she has been on over her 3 years of life up to that point.

I don't want to say that surgery is *less* risky than drugs. That's silly. But I also truly do not think it is more risky. I really don't. I think it's just easier to get lulled into the "comfortable" with drugs because usually the side effects with the drugs happen more slowly and gradually than a complication from brain surgery would. Drugs or surgery can help. Drugs or surgery can kill. The positive with surgery, however, is that if it're done. It's over. You don't have to deal with it for the rest of your life. You have a few weeks of hell...and gets better. With drugs, it's always a battle, ALWAYS a risk of developing new side effects.

Anyway I'm always a believer in following your gut as a parent...and I"m certainly not trying to tell anyone what they should do. Our kids are all too different, and I'm not a doctor. Just wanted to throw out my perspective as someone who has been through all of it.

This post has gotten too long already but I'm hoping soon to share the details of her surgeries for those who might be going through it, so I can share what I learned through it and hopefully be of some help to those going down this same path.


Wednesday, January 1, 2014

Little life lessons....

I've not used this space very often as a place to speak of emotional/spiritual things, but I felt it was worth sharing.

Over the years I've become increasingly aware of all the ways the world tells us to be attractive, to please other people, and to live for others' approval. Unlearning those lessons is something I've been working on since my teenage years, and as a result I've been acutely aware of the words I use when I speak to and about my daughter--and about myself in her presence.

But, I guess it caught me off guard when I had such a conversation about self-image and self-worth with my six year old son. Six year old boys aren't affected by such messages are they? *sigh* I was clueless.

I was sitting on the couch with my kids. It was a lazy day, with my son having a 24 hour stomach bug. So we cuddled on the couch and watched movies.

All out of the blue, Asher begins crying. I asked him what was wrong.

"My teeth are crooked! But I don't want braces!"

Now, Asher is only six. He only has two of his permanent teeth, and several loose baby teeth--the top ones being slightly bucked since he still sucks his thumb. I tried to brush it off. "Well, babe, if you get braces it won't be for many more years after your adult teeth are in, so no worries."

"But I don't want them!"

"Okay, so don't get them. No one is going to make you get braces if you don't want them."

"But, if I don't get braces, since I've sucked my thumb, my teeth will be crooked..."  as he bursts into tears again.

"Well, that's not the end of the world, son. When the time comes, if your teeth are crooked, you can decide if you want braces to make them straight or keep them as they are."

"But, if i don't get braces, all my friends will be MAD at me and not like me!"

Whoah. Hold on a second. All this time I had been on hold with the insurance company, as I tried to get him thinking on another topic and not worrying about it. At that moment, something cut into my soul. My son was being attacked by the goblin that's been chasing me for 31 years. The People Pleaser. An ugly manifestation of shame. I hanged up the phone.

I told Asher to come sit in my lap and I held him as he sobbed.

"Listen to me, son. God has made you beautiful and unique, inside and out. He chose your hair and eye color, your height, what your fingers would look like, and the shape of your teeth and mouth. It's his artwork. But he's also given us our bodies to take care of. It's why we bathe and brush our teeth and cut our nails. God lets us share in making his artwork. It's why some people dress one way, and others another way. It's why we style our hair differently. But God put you in charge of your body. So if you want a mohawk or a traditional haircut, fine. If you want to wear one outfit or another, fine. If you want to dye your hair, fine. But do it because you want to, and because it makes you smile, not because you don't like God's artwork, and not because you're afraid your friends will not like you if you don't.

If you want braces when you are older, if you need them, that is fine. If you don't want them, that is also fine. Your friends will not care, and if they do, they are not your friends. One is not better than the other, just personal preference, like how you style your hair."

I hope the message took. But sadly I know I'm going to have to say the same message, in a thousand different ways, every day, in my actions and my children, to myself, and to the world. Shame is a nasty beast and it does not die without a fight. But I believe the battle is crucial.

You are beautiful. You are inherently "worthy of love and belonging" (to quote Brene Brown).

Peace to you all. And Happy 2014.

Wednesday, April 3, 2013

Does autism need cured or not?

I will finish the last part in the natural treatment for Tuberous Sclerosis, but I felt it was important given the time of year that I write this article. It is April, and April is Autism Awareness Month. Though most talk about finding a cure, there are those--sometimes mothers but often adults themselves who have autism, that argue that autism is simply a difference in the way one views the world, and to argue that it is a disease is like arguing that being Jewish needs cured--it is prejudiced, and is an effort to get rid of anyone different than ourselves.

I have read a few articles over the last few years from adults with autism, arguing that very thing--that to try to take away autism is to take away a piece of their personality, and that they don't need or want to be cured. The most recent article I've read on this subject can be found here: April is the Worst Month.

I recommend reading her article to understand this point of view, where they are coming from. Her argument is certainly valid. After all, she has grown up with, and still has, autism. Surely she is in a strong place from which to speak about it.

But, I would argue the issue is not so black and white. For many parents, their children getting an autism "diagnosis" has been helpful in that it has gotten them the help they need to be able to more easily function in the world, or gotten their parents the help they need to better understand their children and enter their world. The unfortunate thing about an autism diagnosis, however, is that autism is not "one thing". It is a spectrum, and it can look very different from one person to the next. There is a common phrase, "When you've met one person with autism, you've met one person with autism."

People will point to highly functioning people with autism or who were believed to have autism, like Albert Einstein or Temple Grandin. It is absolutely true that autism does NOT equal ignorance, inability to think or anything of the sort. There is indeed a lot of misunderstanding surrounding autism, and society as a whole needs to work harder to understand the world of those living with autism or raising a child with autism. The author makes many valid points.

I have two children. My five year old son has sensory processing disorder that can be managed fairly well with diet--but if he were to eat a standard American diet, he would be a very different, very agitated, very stressed child. He is very smart, and he talked very early. I recently learned that he memorized my cell phone number after hearing me repeat it *once* in passing. He is 5. I can barely remember phone numbers now. He remembers so many things, years later, that I cannot comprehend how he does so. When his SPD is not as well controlled, he can hear things I can't hear, smell things I don't smell (much akin to the nose of a pregnant woman or dog!), and visually pick up on things I don't notice. His brain is on hyperdrive, and one could certainly find pros to having such a condition. However, I considered it a case of disease--dis-ease--because he was not at ease with himself or the world. He suffered by the simplest things that could not be avoided, and not just people judging him or my discipline measures or seemingly lack thereof. He was scared and terrified by the sun, by flushing toilets, by hairbrushes and water and wind. At three years old he had to be put under and had fillings in all his molars because he refused for months on end to brush his teeth because it tickled too much, and if i were to force him you'd think i was cutting off his arms. It was literally torture for him. These were not issues of him not being understood by those around him, or me wishing he were "like everyone else". I had some of the same characteristics as a child (and was just considered by everyone to be whiny), so I understand somewhat where he was coming from. But my baby was suffering. When he was 2 years old, he accidentally had a bite of pudding. I already knew he reacted negatively to cow's milk so he never got it, but this time he had one bite. He had been playing calmly in his bedroom, and out of the blue, with no one else around, he started screaming hysterically. I went in the room, and he would not make eye contact with me, he began hugging himself and rocking back and forth screaming. I tried to run to him and hold him, and he pulled away like my hand was acid. He ran to his *metal* closet doors and began banging his head into them and he did this for probably twenty minutes before he sat back down in the middle of the floor and began crying some more. I finally realized what was happening, told him I loved him and I would be in the other room and waited for him to calm down. He eventually fell asleep in the middle of the living room floor. This was very uncharacteristic for him. But, he had always been gluten free (I've been for 10 years), he had been dairy free his entire life as well. (and both of my children are not vaccinated for other reasons than fear of autism...that is another story for another time...). The one bite of pudding turned him into another person entirely. Any time he eats certain foods or eats too many carbs or fake foods, he very clearly shows behaviors of someone on the spectrum, and he very much seems to be in a state of dis-ease. He is suffering. It is not just about helping people understand him. The sun will not shine less brightly because my son's eyes cannot handle the light.

My daughter is three. She has a genetic tumor disease called Tuberous Sclerosis Complex, and as a result of the tumors in her brain, she has medically refractory epilepsy. She is developmentally delayed and has been very slow to speak. Because Tuberous Sclerosis is the leading genetic cause of both epilepsy and autism, she has regularly been evaluated to see if she is developing or has autism. Thus far, she has not been given a diagnosis, but lately I've seen certain behaviors very characteristic of the condition despite her being very social, very interactive, and has great eye contact. These behaviors pop up most when she is stressed by situations beyond mine or anyone else's control and it makes it hard for her to function in public places even if said places were as understanding and accommodating as possible.

I do not want my children to unnecessarily suffer. Period. It has nothing to do with wanting them to be like everyone else, or me not wanting inconvenienced by their differences. Not everyone feels as though they suffer with autism, and if they are happy with how they are, people should be understanding and respectful of that. There are certain talents and gifts that people with autism can offer the world that we should honor, ones the rest of us simply do not possess. Art, revolutionary thought in science and math, work with animals...just to name a few. But for those who are suffering....who are getting concussions and bloody faces from slamming their faces into hard surfaces to try to make the sensory overload stop...please don't say they are fine just as they are, because you are fine as you are. That is not understanding. There are also others with severe autism who have found a way for their voices to be heard, and they have made it quite clear that they wish they did not have the symptoms that come with autism.

And last, I should add that research has shown that autism is not simply a unique way of seeing with and interacting with ones'  world. It is often linked with very real disease in the gut and the immune system. Those with severe autism often struggle with both diarrhea and constipation, eczema, allergies, getting sick more often than others, and measurable vitamin deficiencies. These are the very definition of disease, and no amount of understanding their world will make those problems go away or be less problematic.

Saturday, December 1, 2012

My latest DIY adventures

If you read my last post on natural treatments for TSC, I do intend to continue that series soon; still trying to collect all my information and have time to write it all down. :-)

But, in the meantime I wanted to share my latest creations. With cold and flu season upon us, I made a batch of elderberry syrup, as it is far cheaper to buy your own than to buy Sambucol from the health food store. I used the recipe found at Frugally Sustainable. It tastes pretty good too! I didn't include echinacea, as some recipes do, since the kids will be using it primarily and it seems there is some debate as to the safety of using echinacea with very small children. Since I've not researched it enough to feel safe using it regularly, I left it out. The honey I used in the recipe was raw, but not local. Since i'm not using it for allergy treatment, I didn't mind that too much.

My other creation is a face cream made from beeswax, red clover and calendula-infused olive oil, water, and lavender and frankincense essential oil. I will probably talk about this one again in the TSC treatments series, since it is for my little one with TSC. Red clover has been shown to have antitumor properties and has been shown to shrink fibromas through blocking angiogenesis. Calendula is soothing and healing to the skin. And, red clover does not smell nearly as strong as turmeric or frankincense which have similar antitumor properties. I'm still in the experiment phase but i am hoping to see her angiofibromas (red bumpy vascular tumors on the face associated with Tuberous Sclerosis) shrink as we use this cream. I plan to take before/during/after photos and post them later. I am just glad the cream actually came together, because my first try was a total flop. Creating creams or emulsifying oil and water (such as when making mayonnaise) is a tricky process and is really easy to screw it up. But, this time it worked, and I am so excited! After i made the cream I added in a few drops of lavender essential oil and frankincense essential oil.

If interested in making your own facial creams, here are two tutorials with slightly different processes.

Herbal Cream Recipe
Fabulous Face Cream or Lotion

To make my cream, first I made the infused oil. In the future I would probably use coconut or jojoba oil or a combination of the two, because I'm not super fond of the olive oil smell for a face cream. There are a few ways to make an infused oil. It seems the most common and best way is to use the same method as when making sun tea: put bulk herbs in a large jar, cover the herbs with oil to the top, screw on the lid, and set it in the sun. And wait. Some say wait two weeks; others say six weeks. I suppose it depends on time of year and the amount of sun you get. Then strain out the herbs. Considering the time of year, my oil wasn't getting very warm outside, so i used this method, which is faster, yet still doesn't get the oil too hot like the stove would. Once my oil was ready, i warmed two cups of the oil in a double boiler with 2 oz of beeswax until all the beeswax was melted. I then poured the oil-wax mixture into the food processor and let it cool five minutes. I then turned on the food processor and slowly and steadily added about 3/4 cup of room temperature water to the oil-wax mixture while the processor was running. Once it looks like everything is incorporated and it looks like a lotion, stop (don't process it too long). I then used a spoon to mix in a few drops of lavender and frankincense essential oil.

I got my herbs from a local store, Herbally Grounded. You can also buy bulk herbs and all the other supplies you would need to make the cream or the syrup at Mountain Rose Herbs.

I will write more when we've had the chance to use the cream and the elderberry syrup and see how they work!


Friday, February 24, 2012

The Naturally "Dr." Mom Guide to Family Wellness

Last night, our two year old was discharged from the hospital after having a CT scan and MRI of her brain. It was a long 30 hours while we were there, but Audrey's no stranger to the hospital so it wasn't scary. She had just been having non-stop debilitating headaches for the last two weeks that were only getting worse, so I felt they needed checked out (due to a genetic disease, her brain is also full of benign tumors that have the potential to grow, so I wasn't just running to the ER for a simple headache).

Whenever there is a health problem in the family (often having to do with Audrey and new symptoms of the Tuberous Sclerosis), I often get friends and family saying how they're in awe of how "in tune" I am with my kids and when something is wrong, how dedicated I am to finding an answer or cure. People have said how shocked they are that often I correctly "diagnose" the problem with my kids before a doctor does. I hear what an "amazing" mom I am, which is kind of weird because nearly every mom I know would, I think, be the same way given the same set of circumstances. I think most parents want to do, give, be anything that their child needs. But over my almost- five years of parenting two kiddos, one of whom is special needs (I'm still a newbie but we've been through a LOT), I have found that some moms just don't take the initiative to have a family that is truly healthy. And I don't think it has ANYTHING to do with love, will, desire, or that they're any less amazing. Like anything else, I think some people just need the tools and information. Some of the items in my toolbox are a natural part of my personality...other things I've learned in our journey with Audrey as we were, in essence, thrown into the deep end of the pool and told to learn to swim.

So, I absolutely am by no means a doctor (my highest level of education is a B.A. in Biblical (ancient) Greek and Hebrew), but, to quote Jenny McCarthy, I definitely feel like I've just about gotten my Ph.D in Google Research.

I had intended to talk about this in a chapter of the book I'm writing about our journey with Audrey, but I think it is important enough I want to share it now. So here is my advice, for what it is worth, on having a healthy family.

1. Preventative care comes first. 

I'm not talking well baby visits and vaccines here. I won't get into the vaccine debate on here, but suffice it to say I'm against them for a variety of reasons, but the primary one being I just don't think it is the best way to grow immunity in a human being. I'm talking, begin to understand nutrition. Not just calories. But what good fats are. What they do in your body. What a healthy diet looks like. Stay away from processed foods. Find blogs on cheap, easy, home cooked meals. Shop the perimeter at the grocery store. Understand the ecosystem that is the human body and what happens when it gets out of balance. If you begin to learn about the human body, you won't be as likely to get tossed around by every new diet "fad"...but will better be able to critically evaluate for yourself if a certain thing is right for your family. Hippocrates, considered the "Father of Medicine", said

"Let food be thy medicine, and medicine be thy food."

God has created your body not as a system of disease, but one that is able to self-heal, provided we nurture it and give it the tools it needs to self-heal. For Christians, Scripture teaches that the body is a temple of the Spirit of God. Treat it that way.

Another part of preventative medicine is exercise. But I believe good food comes first. You can't run a marathon if you're eating nothing but potato chips and diet coke all day every day.

Food is not just nutrition and calories. It directly affects cognition, behavior, mood, energy levels, immunity, etc. This is particularly noticeable in children. Because a child's frontal cortex--the area of impulse control--isn't fully developed until age 25, children are much more affected in their  behavior by food than adults are. Artificial colors, flavors, MSG, sugar overload, genetically modified food, and OFTENTIMES gluten (wheat protein) and casein (cow's milk protein) all act as neurotoxins. And the small intestine has more neuroreceptors in it than anywhere else in the body, besides the brain itself.

2. Always ask WHY.

Think like a detective. Western medicine is very good at treating symptoms, but except in cases of acute illness (broken bones, heart attacks, etc) very very bad at providing a CURE. Get back to the root cause of whatever the problem is, if at all possible. There is a commercial on TV that talks about getting at the "cause" of a stuffy nose--inflammation. But that is not (I would do my philosophy professors proud here) the FIRST CAUSE. What is causing the inflammation? Do i feel this way after eating a certain food? After I pet the cat? When I first wake up in the morning? When I get stressed? It may help to keep a food journal or a daily activities journal to see when the symptoms flair up the worst, and go from there. The body does not just stop working effectively for no reason. There is always a reason. Sometimes we may never know the reason, but we should seek it out when we can. Taking a pill should almost always be a short term solution while you try to play detective and find the cause so you can root it out and deal with it. Otherwise we will all find ourselves at younger and younger ages on a cocktail of prescription drugs...and some of those drugs being to deal with the side-effects produced by other drugs. You don't want to go down that rabbit hole. It's very hard to get out of it.

3. Understand what you can treat at home, and what you cannot.

This is a delicate balance at times. The more research you do, the more empowered you become to realize that there is actually a LOT you can cure without a pill...through diet changes, spine alignments at the chiropractor, exercise, stress relieving techniques, or herbal supplements. It really does make you feel good when you realize you cured your child's ear infection in one day with your own breastmilk or with garlic oil and didn't have to go to the doctor, PAY for a doctor visit, and put your child on a round of antibiotics that then leaves them open to more infection, as it kills off not just the bad bacteria, but the good stuff that creates part of our immune system. But sometimes when we begin to learn these things, our priorities shift. My goal used to be to cure everything at home, so I could say I didn't "NEED" some silly doctor. Then I had a special needs daughter, and I would have been stupid to not put her on some really strong prescription drugs that I absolutely hated, and she has a whole TEAM of medical doctors treating her. Pretty much every "ologist" there is. Now, my goal is not to be smarter than the M.D. or to be able to say I'm entirely self sufficient in every way and need no one, but rather, my goal is simply to have a healthy family. A big part of that is taking care of things at home, but I've learned that sometimes, some things are out of my range of abilities and i need help. We are social creatures that need to live in community, and sometimes there's nothing wrong with asking for help...even from a doctor. :-) Which brings me to my next point.

4. VERY carefully choose your family's health care practitioners.

We have seen SO many doctors I honestly could not list them all here, and the list is even longer when you include hospitals, nurses, chiropractors, etc. I have learned that there is no "noble" profession, only noble people or not so noble people. There are doctors who abuse their power and do not listen to their patients. There are too many doctors who think they're God. And there are nurses with absolutely no bedside manner and you wonder why they chose this profession. But there are wonderful nurses who work their butts off and get puked on and continue to smile. They advocate for you to the doctors and people at hospitals who make policy. And there are good doctors. Great doctors. People who want to HELP people. There are certain qualities that a good health care practitioner has, in my opinion.
          a. They listen, more than they talk. They can't prescribe a good cure if they don't know the full story. If they aren't willing to sit and listen to you, find a new doctor who is. This also means you need to be more patient in the waiting room, because if the doctor is willing to sit and listen, that means that not all the appointments will fit neatly into the schedule, and he may get behind. Audrey's first neurologist listened intently to everything I said, and also asked how we were doing, after the blow of her diagnosis. But I often waited in the waiting room two hours. Sometimes longer. That is a more extreme example..he really was slow in everything they did, including walking to the bathroom, but i digress...
           b. They don't talk down to you like you're ignorant. A good doctor can explain something to you without all the "doctor-ese" and medical lingo, without treating you like you're a moron. If you ever feel stupid leaving a doctor's office, or insulted...find a new doctor. I know we all love to watch House, but in real life if i had a doc like that I'd punch him.
           c. A good doctor is also a teacher. A good doctor knows that if you don't take responsibility for your own health or your children's health, no amount of pills is really going to do all that much good. When I was learning about Audrey's illness, her doctors took time to go through her MRI's and ultrasounds and point out to me what exactly was going on, explain to me how it happened, and prepare me for what I could expect in the future. You should feel empowered, or at least a little smarter, when you leave the doctor's you learned something. If you didn' may want to consider a new doctor.
           d. A good doctor is HOPEFUL. I know they see sick people all day long, but a really good doctor can look past that and see a brighter tomorrow. This is especially important when a major disease is diagnosed. No one wants a doctor who tells you, after a cancer diagnosis, that you are definitely going to die in six months. First of all, it is depressing, and secondly, no doctor can know that.  They cannot tell the future, only look at statistics and past experiences. But your situation is unique and need not be like anyone else's.  When Audrey was first diagnosed at four months old with Tuberous Sclerosis and infantile spasms (a brain damaging hard to control seizure type), several doctors told us she would stop smiling, get autism, and be mentally retarded. She would never walk, never do anything. She is two, and despite uncontrolled epilepsy, she smiles all the time, she is quite the character, she runs, she climbs, she does not have autism, she is social, and she understands. Her only delay is in verbal speech.

5. Be willing to say "No."

If a doctor offers a diagnosis, or prescribes a certain medication to deal with said diagnosis, and you have issues with it for whatever reason, DO NOT be afraid to question the doctor, not give the medicine, get a second opinion, etc. Doctors are not Gods. They are not all knowing, or all seeing, or always correct. If they were, they would not need malpractice insurance. With regard to your children, you know them better than any doctor does. Here I will speak to my friends with kids with epilepsy for a moment--if a doctor has your child on an AED and the side effects are worse than the cure, insist on a different medication or lowering the dose. This was really hard for me to do in the beginning because I was petrified of going "against doctor's orders" and her condition getting worse. But every time i blew off my intuition I regretted it. I will mention that more in my next point. It also reiterated what I mentioned about finding a good doctor who is willing to listen to your concerns and is willing to offer alternatives. There have also been times I've taken Audrey to a doctor because I needed a diagnosis, but then treated it at home with other methods. (see again on knowing what you can treat at home and what you can't.) For example, we found Audrey had chronic ear infections that were causing her to have hearing loss, and they wanted to do tubes in the ears. Instead i first took her to the chiropractor who aligned her neck such that the fluid could drain properly, and now no ear infections, and no surgery required! But first she needed to see an ear/nose/throat doctor to get a diagnosis.

6. Learn about natural treatments, and keep your Dr. Mom bag handy. 
Check out this book for a starting point.

In addition to healthy foods and chiropractic care, I would recommend keeping coconut oil, amber, garlic, apple cider vinegar, certain essential oils, probiotics, baking soda, and Vitamin D handy in your mom bag. And do some research on what all these things can cure. You'll be amazed. Also, if you're nursing....breastmilk gets rid of pink eye, sinus infections, diaper rash, and heals cuts. Also consider, next time you're sick, doing a quick google search for natural cures for whatever the illness is. I cured my own case of shingles that was quickly covering my entire body, in three days with B12 and Lysine. In addition to the above, if you have kids I would keep on hand a stethoscope (cheap on Amazon) and more importantly, an otoscope. It is so much easier to be able to see at home if your baby has an ear infection than to wonder until it gets bad, or take your baby to the doctor every month to see if they have one. And if you're pregnant, a fetoscope can tell you not only your baby's heartrate (and hear your baby's heart anytime you want, once you reach 20 weeks), but your baby's position, and where the placenta is located. 

7. Above all else, always listen to your gut.

The Holy Spirit, Mama Intuition, your gut...(i think the first two are separate, as I'm not God... but intertwined) LISTEN TO IT. We've been trained in our society (I think largely because society is run by western-minded men) to ignore intuition, to look only at what you can see and have PROOF of. But intuition is not just some new agey idea. It is the right brain, and like any other muscle, you have to practice using it to be able to hear it effectively. Practice using your intuition. Even self-defense coaches say that too many women are mugged, raped, robbed, etc because they get a certain feeling that something isn't right about a situation (hairs stand on the back of your neck, etc), but they brush it off as them just being silly hyper emotional women...only to find out too late that their intuition was trying to tell them something. Will there be times you take your child to the doctor thinking something is really wrong, only to find out there's not? Probably. Will you feel silly and like you overreacted? Maybe. But you'll feel a whole lot worse if you DON'T take your child when something IS really wrong and it could've been corrected if just addressed sooner.

So there ya have it, my best advice on how to take control of your family's health and wellness. Hope it helps someone, for whatever it's worth. :-)

Wednesday, February 22, 2012

Finally, I start the cloth diaper series....

...I've been meaning to write since I started this blog. But, I've held off. For something that should be as simple as what to put on baby's bum, there is a RIDICULOUS amount of information out there on cloth diapers. And how to wash them. And how to store them. And which kind is best.

My children are 4 1/2 and 2 1/2 years old. The older one potty trained completely right at three years old. My daughter is still in diapers. I began cloth diapering my oldest when he was 2 months old, and my daughter from birth.

Last year, nearly everyone I knew got pregnant and had a baby, and I got a lot of emails asking about cloth diapers. I spent a lot of time sharing what I had learned and repeating myself over, and over...and before another wave of babies comes through my circle of friends, I want to share this series on what I've learned about cloth diapering in the last almost-5 years, and I will try to make it as simple as possible. But before I get into the styles of cloth diapers, the differences between them, etc, I wanted to write a post on the differences between cloth vs. disposable, and what you can reasonably expect from cloth diapering, should you choose it.

I won't spend a ton of time on why people choose to cloth diaper, but rather just a short list of a few of the most common reasons:

  • Cost/the economy (on average the cost of disposables over the diapering period is between $2000- $3000...and you get none of that money back...just thrown in the trash, whereas cloth can be as cheap as a few hundred dollars over the diapering period, to as much as $1000 depending on the style and brand, but much of that money you get back by selling them after the child is done with them)
  • The environment
  • Health reasons (Dioxin, a chemical found in disposables is a known carcinogen)
  • They're so STINKIN CUTE!
Now on to what you can reasonably expect from cloth diapering. Some cloth diapering friends and I had a good laugh the other day, about how common it is for people who cloth diaper to "fudge the truth" a little bit about how easy and carefree cloth diapering is. The truth is, sometimes cloth is SO much easier than disposables. Other times, it can be a royal pain. I feel it is only fair to pull back the curtain and let potential future cloth diaperers know how things REALLY are cloth diapering a baby.

In the early days, when the baby is small, particularly if the baby is breastfed, cloth diapering really honestly is a breeze. First of all, the elastic in the diaper or cover is stronger than in disposables, so you have far fewer newborn poop blow-outs. Which means fewer clothing changes mid-day, and fewer of those awful bright yellow stains up the back of your favorite outfit for your baby (or stains on YOUR favorite shirt, from wearing your baby during said blow-out, as has happened to me). The diapers don't stink too badly (if baby is breastfed), and they are easy to clean. The poop is so runny you don't even need to rinse them first. (Honest!) It all just dissolves and leaves with the wash water. So when they're small, the diapers work better than disposables, they're cuter, they're cheaper in the long run, and I would argue they're even better to deal with post-diaper change than disposables, because you just throw them in the wash with no hand rinsing and you're done...they're not sitting in a Diaper Genie collecting funk and you don't have to take it outside to the trash. You also don't run out of diapers in the middle of the night, like has happened to me during short stints when I've used disposables. (Even if all your cloth diapers are all dirty, nearly anything can be made into a diaper in a pinch.)

When your sweet baby gets a little older though...things start to change. The honeymoon is over. You begin to wonder why the diapers are starting to stink so badly after he pees. You wonder what to do now with REALLY nasty poops with solid food in them that you clearly cannot put in your washer without it screaming in revolt. Suddenly you have to worry about either pre-dunking diapers in the toilet (isn't that the nightmare everyone has about cloth diapers and why so many choose not to?), or buying a diaper sprayer which costs more money and is only slightly less gross. And stripping diapers. And why do my diapers suddenly smell so bad even when they're washed? And why are they leaking all of the sudden? And why, after stripping them, am I having the same problem again a few weeks later? What's the best detergent? What's the best wash routine? It gets maddening!

And then one day you find yourself with a pail full of dirty cloth diapers that stink so bad of ammonia they could burn your nose hairs, and some of them have poop crusted on so bad from days of you avoiding rinsing them out, and it becomes very tempting to just throw the whole gosh-darned thing in the trash...all several hundred dollars worth of it...and go buy some Huggies. (Confession time: I've done this more than once, and so have a few of my friends.)

I have tried nearly every detergent, I've tried numerous wash routines, and I've used every kind of cloth diaper in an effort to avoid all the above listed problems with cloth diapering an older baby. And my detective cap has come out a few times wondering why this is such a huge problem now-days with cloth diapering an older baby, when ALL babies were cloth diapered throughout human history until the late 1970's. What gives?

And this is where I say we expect WAY too much out of cloth diapers. First, we expect them to be the washable version of a disposable. We expect them to hold a gallon of liquid without smelling and without leaking. Numerous studies have found that due to the super-absorbing chemicals in disposable diapers, people are changing their babies' diapers less and less often...we're a busy people after all and don't have time to change diapers every time they're wet. No matter how gross and unhealthy this is, we don't smell it with disposables because they contain chlorine that masks the smell.

So, in our effort to make the "washable disposable"...the diapers are made with elastic...and 8 to 10 layers of fabric sewn together...and synthetic fabrics like microfiber and Zorb that hold 7 times their weight in liquid, but don't rinse out as well in the wash. And because we're busy, they sit in a dry diaper pail for two to three days before we wash them. (okay...or SEVEN) During this time, the urea breaks down into ammonia, which is the nasty smell that burns your nose hairs. Add to it that most washers are now HE--using precious little water (I don't even think they get normal clothes clean, let alone diapers containing human waste), and detergents now have more and more additives, fragrances, softeners, and citrus oils....It's just a recipe for disaster no matter how you slice it.

Fifty years ago, cloth diapering was a different ball game than it is now. Diapers were made of 100% cotton, and most were flat diapers that were only one layer thick (the fold and pin kind). there were no HE washers, detergents had fewer additives, and cloth diapers were washed EVERY.DAY. They also changed diapers more often, and potty trained their children at a MUCH earlier age than we tend to do now. (And there is no evidence that the children were psychologically scarred because they were potty trained completely by two years old, either.) I suppose the fact that they were in cloth that didn't absorb as much, and that they changed more often, also led to a baby who was ready sooner to be potty trained. Why go on the potty when I've been trained for two or three years to go in my pants, and the diaper leaves me feeling dry even after I go?

The Solution?
Wool Soaker (cover) I made from a thrift store sweater
Well, I would suggest the most obvious solution is to use flat diapers with wool covers. Wool covers are the most bulletproof cover out there, they're ADORABLE, and they don't stink of ammonia when they're wet. I will address wool in more detail in another blog entry.

People get scared of flat diapers and pins because we've been trained to think they're difficult and antiquated. But really they're not at all difficult to use, they're trimmer than some other cloth diapers (fits better under jeans, etc), they're the cheapest option, and they fit from birth to potty training. I would also suggest washing more often. Like, daily. And don't use an HE washer. Diapers need WATER running through them to truly get clean. Flat diapers can get clean in an HE better than other diapers can because it's only one layer thick, but still, when it comes to diapers, the more water in the wash the better. We could all also use a little bit of SLOWING DOWN. Perhaps if we don't have time to change our babies' diapers  more often, we've got too much going on and should reprioritize.  Our pastor just did a sermon series on this very topic. Here's a funny video about being unhurried that my husband made for the series.

I know few people who cloth diaper are going to give up their HE washer and their all-in-one diapers. So, my advice for keeping the ammonia funk to a minimum is:

1) If you have an HE washer, there are a few things you can do to get more water flushing through your wash cycle with the cloth diapers only. If you have an HE top loader, you might have a setting that allows for more water. On my mom's, this is the "bulky" setting for pillows and such. It will fill the water to the top like a standard washer. If you have a front loader HE, you may have this same wash option, or you can pour extra hot water through the opening where detergent goes. You can also "trick" your washer into thinking there is more to wash than there is by adding a soaking wet towel to the wash load. The extra weight of the wet towel will make the washer "think" there is a larger wash load, and add more water accordingly.
2) Part-time EC (elimination communication, also known as infant potty learning). It is not a new concept and is still the default in most of Africa and China. I will post about it in more detail in a future post. Few people will EC full-time, but doing it occasionally isn't difficult, will cut down on the number of dirty diapers, and will make it easier to potty train your child completely down the road. Again, more detail on how to do this later. But if you're itching to learn more, you can google "Elimination Communication" and find lots  of good articles and books.
3) Change diapers more often.
4) Either rinse the diapers (including wet ones) immediately, use a wet pail to store them in, or wash them daily. The more time diapers have to just sit, the more time the urea has to break down into ammonia. And poopy diapers are MUCH easier to rinse out if you do it immediately after the diaper change.
5) Use a good detergent that rinses clean or make your own.
6) If you've part time EC'd your baby from birth and made an effort to potty train them sooner, this doesnt' become as much of an issue, but when they do get older and have big grown up man poops in their diaper...these really are awesome. Disposable, flushable diaper liners catch the poo, then you just throw it in the toilet. 

Cloth diapering doesn't need to be a nightmare. In fact, it can be a lot of fun. Maybe our expectations are just a little too high.

More later on types of cloth diapers, EC, detergents, and wash routines. Stay tuned!