The hope in technology

Technology. I used to hear that word and think of gadgets and gizmos and the latest and greatest in whatever field you’re looking at…including agriculture.

But not too terribly long after George joined our family, I started looking at technology in a different way.

My 9-pound-13-ounce George, this picture was taken at the hospital when he was born. Little did I know what the future would hold.

My 9-pound-13-ounce George, this picture was taken at the hospital when he was born. Little did I know what the future would hold.

It’s not just about finding easier ways to complete the same jobs. Nor is it about finding ways to play God. Sometimes technology is simply about saving lives and improving the quality of life for those that are here.

And that’s a hard lesson to learn.

But I have.

Trust me, I do realize that there is a difference between a new app or a device that’s used to steer a tractor and a plant that’s bred to improve its genetic makeup – but one of these causes activists to go crazy, and I’ve never seen a protest line outside of GameStop the night before a new game is released. (But then again, I don’t normally hang out there, so let me know if I’m wrong.)

An iPad in the tractor cab, connected to the planter. Yes, technology can bring great improvements to efficiency!

An iPad in the tractor cab, connected to the planter. Yes, technology can bring great improvements to efficiency!

Here’s where I get personal: Had my son been born a mere two decades ago, I am guessing that I would probably be a mother of three. Not four. That’s a sobering thought. Technology and advancements in medicine have allowed him to not only survive, but to thrive and far exceed any of the expectations that we were given. Even by Mayo’s standards, George is amazing.

George, summer 2010, before we had a plan in place. This picture sometimes makes me cringe...wishing I could go back and cheer myself on...pushing harder. But you know what they say about hindsight.

George, summer 2010, before we had a plan in place. This picture sometimes makes me cringe…wishing I could go back and cheer myself on…pushing harder. But you know what they say about hindsight.

When there are advancements in medicine that saves lives and improves the quality of life for hundreds, or thousands, or millions, we shout from the rooftops and celebrate! As we should.

Yet, those same scientists…those same doctors…those same hands…they can follow the same methods, the same protocols, the same regulations and red tape and years of hard work and trials…but if those advancements are made in our food – well, the reaction is quite different.

Are they not achieving the same goal? Does it not improve the quality of life for others if our food is more nutritionally sound? Does it not save lives if we are able to grow crops where crops always failed before? Does it not make a difference if the diseases in plants that used to destroy thousands of acres can be eliminated?

If we were to find a way to eliminate cancer, would we not celebrate? Yet if we find a way to eliminate a plant disease…we protest?

I’m not saying there isn’t a difference. And I’m not saying that we don’t need to look at technology with a cautious eye and we need to carefully and judiciously move forward. But do not tell me that using technology is not natural.

Let me tell you what is not natural…having to carefully watch what your 4-year-old eats is not natural. Explaining to the parents of his classmates about his condition is not natural. Relying on a powder to provide your basic nutritional needs is not natural.

But burying your child is also not natural.

This is the George that we know and love...he just needed a little help getting to this point. We sometimes slip, and it's  not all roses, but that smile and those eyes make it all worthwhile.

This is the George that we know and love…he just needed a little help getting to this point. We sometimes slip, and it’s not all roses, but that smile and those eyes make it all worthwhile.

I realize that my exposure to technology is vastly different from most people. And for that, I am grateful. I have traveled down a road that I wouldn’t wish on anyone. But right now we’re on the other side, and it’s pretty sweet.

And I thank technology and science…and God…for that.

The health epidemic

Lately I’ve been doing a lot of reading and research regarding our health, diets and how our choices influence it all. It’s been fascinating to learn so much more about our society, but when I read claims that our agriculture methods are creating problems, I tend to raise my eyebrows a little bit.

Now, don’t get me wrong…I completely agree that cropping methods and systems have changed in the last few centuries. But shouldn’t we expect them to? I know of no other industry where people criticize innovation so blatantly. But again, that’s their right.

Here is my unofficial synopsis of all the reading I have done: Perhaps it’s not only the crops that have changed, but our expectations of health. Our quest in life is to “feel good.” If we don’t feel good, we try to figure out why we’re not feeling good…and in doing so, we keep hunting down causes until we find something to blame.

We are a culture of excess. We want to have our cake…and eat it to, even if it has to be gluten free.

medical food, cyclinex 2, formula

Will we reach a time in which all of our nutrition will come in compact form?

People clamor that these are new diseases, new allergies, new problems with digestion. But I wonder, are they really? And I’m not talking about true allergies, the kind that risk your life when in contact with triggers. Or true diseases, the kind that cause bleeding and excruciating pain and life-threatening consequences. I know all about those.

It's hard to believe how far he's come, but the long road was worth it!

It’s hard to believe how far he’s come, but the long road was worth it!

My grandmother would tell me stories about when she was growing up. She had her appendix removed when she was a little girl and it terrified her. She was afraid that what she ate would make her ill, so she was very selective for a little while. Food made her ill, so she cut back on what she ate. Simple as that. She didn’t go to a doctor, she didn’t expect a pill would make her better, she didn’t question her choices, she just limited them. And no one was the wiser.

Now we expect answers. We expect to “feel good” and when we don’t feel good, we expect that there’s a pill, a medicine, a cure, to make us feel better. In general, we do not suffer quietly and self-adjust our diets to make up for it, as our ancestors did. We enroll the help of medical professionals, we make it their job to find out what’s ailing us, and find some way to allow us to continue the same behaviors that made us ill to begin with…it’s mind-boggling truly.

No, I am not convinced that our food has changed so greatly that our bodies are now rejecting it. But I am convinced that our world has changed so greatly, that our expectations are creating problems that our ancestors would have just brushed off with “that didn’t agree with me.”

Looking back through our family history, I am pretty certain that George’s OTC is not new to our family. It just happens to be the first time that it could be diagnosed. And we were blessed when it was discovered…completely by chance. His diet changes are necessary, and life-saving, as is the case for many across the world.

I have no doubt that watching what you eat, being aware of how your body reacts and adjusting your habits as needed is a great tool for everyone to use. But are we taking it too far? Just last night I heard two young girls talking in a store. One was buying gluten-free items, the other replied, “I didn’t know you had celiac?” She quickly said, “Oh, I don’t, I just read that it’s better for you. You know, more natural.” I had my oldest child with me, so I didn’t interrupt, but…ugh.

What will be the next epidemic?

I vote for common sense. How about you?

Being a perfect parent

It’s been a crazy few days…in ways that I can’t even begin to explain. We couldn’t get to church this morning because Boss Man returned from his uncle’s funeral at 2 this morning, and I stayed up to watch cows so he could sleep. I took a few moments this morning for myself and did a little thinking, I guess some would call it reflecting, maybe others would call it meditating.

I’m reading a book called “99 Ways to Raise Spiritually Healthy Children,” by Kathleen Long Bostrom. It’s not my usual reading fare…but any time I see something that I think will help me be a better parent, I’m game to read it.

The first two pages went straight to my heart…and I know I’ll be hooked for the other 98 ways (but I’ll only read them one chapter per day, so I can soak in the information). The first thing the book tells me is that you should forget about being a “perfect” parent. Instead, work on being “pretty good” or “good enough.” The term that they use that spoke most to my heart? Be a perfect parent for your child.

Amen.

This chapter came with three things to always remember: 1) Remind yourself that you’re only human. Let go of mistakes and missed opportunities. 2) Recognize things that you can’t control. Go with the flow. 3) Remember the big picture. You’re not in this alone, and believe in grace.

You ARE a good parent, you just can’t base your judgment off what others think. You can’t use someone else’s ruler to measure your worth as a parent. So stop doing it.

Why does this speak to me so much? I don’t think these words would have stopped me so completely this morning, had it not been for our youngest son – you all know him as George on this blog.

Before George was born, we knew that he was trouble. At 13 weeks pregnant, I became very, very sick and ended up having an emergency gall bladder removal. The risk of the surgery to his survival was pretty high, but the risk of leaving it in was high as well. We moved forward, and he showed a great amount of resilience. My right kidney gave me all sorts of trouble, and we finally got to the answer during the final weeks of my last pregnancy. I have a twist in the tube that goes from my kidney to my bladder, and pregnancy would close off that twist…blocking my kidney and causing lots of pain. Stents were painful as well, so I tried my best to make it as far as I could.

In the last few weeks of my pregnancy with George, we did an amniocentesis to see if we could deliver early. At 37 weeks, it shouldn’t have been much of a problem, but my doctor wanted to make sure. It was a good thing she did, because even at that stage in my pregnancy, his lungs were very immature. We waited until 39 weeks to the day, then delivered by repeat c-section. (I had one regular delivery and three c-sections.)

He had a few hours of trouble with breathing, but nothing major. I spent a few extra days in the hospital because of problems with my cesarean. George and I left the hospital with a clean bill of health.

But that bubble didn’t last long.

Late-onset jaundice, troubles gaining weight, something that seemed like colic, but not…finally I gave in and went to the doctor, but our regular doctor wasn’t in. Blood work, lab tests. We left the clinic with promises of phone calls with answers. The clinic is an hour from our farm, so I took advantage of the time to get a few groceries and other items not available in our small community.

My skinny, tiny little boy. My heart.

My skinny, tiny little boy. My heart.

Something told me to check our home voicemail. We received a message from the doctor himself, asking for me to return his call ASAP. (I don’t know why they didn’t use the cell phone number I gave them.) I did, and received the news that we needed to get to the hospital. We were being admitted.

What was wrong? It seemed like everything. Nothing made sense. Off-the-charts liver enzymes, critically low blood sugar, etc. There were more lab tests with flags than normal. And we didn’t have a clue what was going on…he was three months old.

Who can deny this determination? Meet all of your challenges head-on.

Who can deny this determination? Meet all of your challenges head-on.

That began a whirl-wind of appointments, specialists and 18-months not knowing what was going on. I pushed and pushed…knowing somewhere there would be an answer. Failure-to-thrive is a symptom, not a diagnosis.

Finally, the fourth physician that was involved at Mayo (or maybe sixth? seventh? I lose track.) came up with a long-shot. Ornithine transcarbamylase deficiency. (You can check out the OTC tab on top) Yes, spell check, I know that’s spelled right. I’ve had to spell it many, many times.

Low-protein diet, tons of doctor’s visits, extreme caution with illnesses…it’s been a crazy ride. Imagine, a rancher’s son living the life of a vegan – yet stricter. But the payoff? Weight. Curiosity. Growth. Imagination. My son.

I have NOT been a perfect parent. But I have been the perfect parent for my son.

According to science, my son isn’t expected to live to see the age of 5. He’ll be 4 in April. According to science, my son should have developmental disabilities. His MRI shows the gaps where his white matter should be. He’s an extremely intelligent little boy who knows all his letters, colors, numbers and shapes. He has started adding and subtracting and can read simple words. According to science, he should be sickly and weak. He hasn’t been in the hospital since last year at this time. According to science, he shouldn’t be growing. His blood work shows that he produces no measurable amount of growth hormone. His pituitary gland is small and malformed. Yet he weighs 42 pounds and has grown three inches this year.

We are beating odds and blowing away science. And we won’t quit pushing.

No, I am not a perfect parent. But I am perfect for my son. And he is perfect for me.

Trust in the Lord with all your heart, and do not rely on your own insight. In all your ways acknowledge Him, and He will make straight your paths.

Proverbs 3:5-6

An anniversary of sorts

It’s hard to believe that it’s been 3 years. Three long, crazy years that I was never sure we’d make it through.

George, summer 2010, before we started his low-protein diet. With his skinny little chicken arms, tiny legs and minus any fat.

The beginning of October is the anniversary mark of our trips to Mayo in Rochester with George. Sometimes I find myself staring in those big, beautiful eyes of his, and I am amazed at where we were and how far we’ve come.

How will we celebrate such an anniversary? Well, with a trip to Rochester, of course! Actually, we’re pretty lucky because our trips are now down to twice a year (barring any bumps in the road).

So, as we prepare for another series of doctor’s appointments, please keep George in your prayers. Things have gone so well the last several months, I’m just hoping and praying for continued good health and no hiccups in his blood work.

George, summer 2012 – all sass and attitude! Full of life, love and a true blessing through and through!

It’s been a long road, but you frequently find the best trips are the ones that take awhile to get there. Right?

It’s Creeping Closer

Whooping Cough. I never used to think much about it. Along with chicken pox, influenza, measles, etc. It was all just stuff that I didn’t worry about. My children were vaccinated, and if they still managed to catch something, well, they’d recover and be no worse for wear.

That’s no longer my way of thinking.

Ever since George has blessed our home, I’ve become terrified of outbreaks, even of the simplest of illnesses. Because with George, nothing is simple.

So what made this all come up now? I saw an article in a Montana paper about the whooping cough outbreak there. Montana. It makes my stomach hit my throat.

For those that aren’t aware of geography, or aren’t familiar with the Upper Midwest, Montana borders North Dakota on the west side. Yes, we’re on the east side, but so many people (even local people) are traveling from western North Dakota to eastern North Dakota that I don’t believe it will take long at all for the epidemic to hit our state. And that is cause for concern.

During our last trip to Mayo, our team decided that with the circumstances in our area being what they are, that we should go ahead and have George fully immunized. (Up to this point, he was only immunized with those vaccines that were not derived from a live virus.) This is both a blessing and a worry at the same time.

I feel blessed, because this will mean no longer having to wonder whether or not we should venture out. Well, at least it alleviates the concern quite a bit. I’m worried because the days following the vaccinations will be stressful at best.

It wasn’t a hasty decision to fully vaccinate. There are concerns and risks involved…but the risks can be carefully monitored and better controlled when you know what could be coming, instead of being blindsided. For example, if George were to be exposed to chicken pox, it would take up to two weeks before we would even know that something was truly amiss. The “pox” do not show up until the disease has already been in your liver, and George’s liver is already an organ we don’t want messed with. So what do you do? You take the known risks and have a plan.

Must we, with the photos Mom? All the time?

But before we can get to that point, we have to get George over his cold and make sure he’s as healthy as can be. And in a house full of boys, that’s not always an easy task!

The blessings of social media

I regularly hear people talking about the amount of time that is wasted on social media. When people ask what I do, and I tell them that I blog about our farm and our family, it’s almost as if I just told them I’m a stay-at-home mom…oh, wait…

"George" and I...towards the beginning of this journey. It's amazing the changes that have been made, to both of us.

My point is, that neither my chosen profession nor my hobby gets much respect in the real world. (You can decided which is which.) That doesn’t bother me, and for the most part, I ignore it…but last night it became very clear to me that all of my work and time “wasted” has not been in vain.

For those that have been following along a little while, you know that our youngest son, “George” on the blog, has been diagnosed with OTC. (You can read more about it on the OTC tab above.) It’s been a very crazy ride, but we’re feeling our way through, and have seen some amazing results in the last year.

But that doesn’t mean that we haven’t had problems, or that there were times when I wasn’t really sure who to turn to for answers, venting, etc.

And then I received an email. And not just any email, an email from the Executive Director of the National Urea Cycle Disorder Foundation, which just so happens to be the link I use in my blog posts describing OTC. Yeah, that’s big.

I think back to that meeting in August, almost two years ago, where I finally met JP in person. There was a round-table session where you could just sit and ask different people questions relating to social media. I sat at her table and asked if she thought that my story was worth telling (we had been “connected” through Twitter). I thought that my connections through Twitter and facebook were probably enough, maybe a blog would be too much, and maybe I didn’t have anything to really share.

With her encouragement, I started Wag’n Tales in September of 2010…and the rest, as they say, is history.

And I’m not the only one that Janice has positively influenced through social media. Just check out her latest blog post and see.

Yes, social media can take away time. It can be used for evil and wrong-doing. But when it’s used in a positive way, it can truly be life-changing…

In fact, it can be life saving.

Thankful Thursday – Growth

We have our next scheduled appointment set up for Mayo…it’ll be at the end of March. This is the longest we’ve gone without being to Mayo since October, 2009. A whopping six months between our last appointments.

That may not seem like a milestone to some, but it’s a miracle to me. I’ve gone from feeling like a frantic, over-reacting mother to feeling like a frantic, why-didn’t-I-push-sooner mother. There’s been a few moments of lucidity in between, but I’m not sure they should count.

George had more tests right after Christmas. And the wonderful news is that his thyroid function is back to normal! Yay! On this bumpy road that has become his life, I will admit that I would not have been surprised if something else would have come up amiss. It’s just the way it’s worked for us, but I’m more than happy to share the GREAT news!

After his appointment, I had to meet with the office where his medical food comes from…and it was interesting to say the least. George has packed on a few pounds, and although it’s not something I’m concerned about, apparently his stats aren’t the greatest. (His BMI is on the high side.)

She asked if I was concerned, and I tried not to laugh, really I did. What’s funny is that a year ago we finally got a clue as to what was wrong with George…a year ago we finally turned a page.

Prior to that, George looked like this:

George, summer 2009, just a few months old and at the start of this journey.

 

And this:

George, summer 2010. With his skinny little chicken arms, tiny legs and minus any fat.

 

At three months old, George was diagnosed with failure to thrive…and we could not figure out why. It took literally years of testing and throwing stuff at the wall to see what would stick. And now we have some solid footing, a plan and more importantly, we have weight…and happiness.

And I’m not messing with it.

Nope, I’m enjoying every roll, every chubby cheek, every ounce. I understand that his “medical food” is given to him through juice or applesauce, neither low in calories, but I have plenty of time to worry about diet changes once we have his diet down.

Because, for once in his life, George looks like his brothers:

A very Merry Christmas indeed!

 

His cheeks are filled out, his arms are strong, there is no longer skin sagging on his chest. He has a baby belly, his legs have rolls and he wears one size larger than his age. He plays by himself and with his brothers, he no longer has balance issues and he’s quick to laugh, hug and kiss.

And there isn’t a BMI statistic in the world that counts that in its measurement.

Miracle Monday

Today I have a special request. It’s not for myself. Well, kind of, but not really.

My mom’s best friend is in need of a liver transplant. Desperately. She’s also been a second mother to me, for most of my life.

She hasn’t had an easy life. But she handles it with a great deal of grit, determination and such a no-nonsense attitude that I’m amazed at it all. She hasn’t been healthy for a long time, but her complaints are few and far between, and she’s rebounded from setbacks that would make most people throw in the towel.

And now she’s hit another roadblock.

And so I’m asking you for help. Actually, I’m pleading. Please, take a moment to say a prayer. Can we storm the gates of heaven for a miracle? A Christmas gift for Darlene, a blessing for her and her family…and all those that know them.

And if you’d like, you can leave a note for her. I will print them off and give them to Darlene, as a way to show her that there are people across the country that are on her side, joining her in the fight, and willing to spend a moment of time in prayer for her healing.

Thank you. I know it’s a season of giving, but this time I’m asking for something in return. It isn’t much, but it can make all the difference in the world.

Wordless Wednesday – Thanksgiving

Today’s post is mostly wordless by me…following you will find another survivor’s story, this one by Heather Von St. James. We are all given so much, and sometimes we don’t realize the “village” we have, until we need it.

And please, don’t forget to click on the blue angel in the right-hand corner! We need more angels and more gift suggestions! Let’s make this a season of giving!

The Strength of My Village

When a mother announces her pregnancy, a village surrounds her. Family, friends, co-workers and even strangers offer support and advice. This happened to me in 2005. On August 5, my husband and I welcomed our daughter Lilly into our family. Our village surrounded us in the hospital with well wishes as they met our daughter. In the months and years to come, I would realize how much I needed their support.

As the partial owner of three successful salons, I supervised 20 employees at one location and worked behind the chair until the day Lily was born. After a few weeks at home with my baby, I regretfully returned to work. Unenthusiastically, I accepted a location switch and a lighter workload. I really only wanted to be home with my child!

Motherhood brings health changes such as weight fluctuation, lack of energy and tiredness, but I soon began to experience severe symptoms. After losing an average of six pounds a week, I consulted my doctor. Blood work and a chest x-ray revealed fluid build-up around my left lung. The doctor prescribed more tests. On November 21, 2005, my medical team discovered the source of my unusual symptoms. In the lining of my lung, I had cancer called malignant pleural mesothelioma. Caused by asbestos exposure I had experienced as a child, the diagnosis came just three and a half months after precious Lily was born.

The doctors gave me 15 months to live, and my thoughts flew to my husband and child. I wanted to do whatever it took to save my life. My husband and I decided to pursue drastic treatment. On February 2, I underwent extrapleural pneumonectomy in Boston. Specialists removed cancer-laden organs and tissue and administered heated chemo to remove all the cancer. I spent 18 days in the hospital recovering from surgery. Two months of additional recovery prepared my body for chemotherapy then radiation. I survived the horrid medical treatments with help of my village.

My parents took Lily to live with them in South Dakota where my childhood friends and people from my church surrounded my parents who both worked full-time. They babysat Lily and made meals. Halfway across the country, my baby learned to roll over and eat solid food. So we could watch her grow, my mom emailed pictures of Lily that my husband printed out. In black and white, I watched my little girl grow and change. I fought for my life because of my daughter.

Five years later, I rejoice that I can stay home to care for my child. As we embrace life, Lily has learned to give to others in need. She befriends everyone she meets and really thrives because of the family, friends, and strangers who surround us. Because of the cancer diagnosis, I remain thankful for my many blessings. With the bad comes good, and my family appreciates every moment thanks to our village who so generously supported us then and continues to support us now.

 

Mesothelioma: www.mesothelioma.com
Diagnosis: http://www.mesothelioma.com/mesothelioma/diagnosis/
Heather Von St. James: http://www.mesothelioma.com/blog/authors/heather/

Heaven is for Real

I’m sure many of you have heard of the book, “Heaven is for Real.” I had…but I had never read it. Sometimes we avoid those things that we fear the most…and I didn’t want to think about death, or death and children specifically. But I’ve read it now. I’m pretty sure God wanted me to, so I did.

This weekend was our annual Farm Bureau meeting in Minot. George and I packed up Friday morning and headed north. I wanted to testify on one resolution specifically. It would support allowing North Dakota Children’s Special Health Services to open their doors to children with catastrophic illnesses. (Catastrophic illnesses are ones that are life-threatening. Currently, NDCSHS can only assist those children with illnesses specified by state statute…OTC is not one.)

On Saturday morning, I stood in front of the Farm Bureau delegates and tried to give a brief synopsis and explain why we needed to forward this resolution. It was, by far, one of the most difficult things I have ever done. Imagine explaining to a large body of people that your child’s life is at risk, and you would hate for other children and families to have to fight the same fights you’ve been battling. It was pretty emotional for me, and I wasn’t as strong as I would have like to have been. But I made it through, and I thank God that the resolution passed.

After that, we had our district caucus meetings. And I was sitting in the back of a room, along with my friend, Joannie. A lady came up to my table, handed me the book, “Heaven is for Real,” and told me that she thought I should have it. She gave me a hug, watched me wipe away my tears, and quietly slipped out of the room.

Sitting here, I still can’t believe it happened. It was one of those moments that (looking back on it), God was telling me not to worry about the future. No matter what happens, He’ll have George in His arms. I need to quit dwelling on the what-ifs and work on enjoying the now. I get that. And when I falter, and start to worry, I have a book to read to remind me.

I needed that.

And to the wonderful angel who delivered the message to me…thank you.