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

Good Friday post replay

I wrote this post last year about Good Friday falling on Earth Day…and how my son mistakenly thought that was the reason he didn’t have school. Although today isn’t Earth Day, when you have a rough week, it’s a comfort to know that there are days such as Good Friday to give you hope and remind you of the sacrifices made:

 

I was all prepared to write a post today about all the things we do on the farm that celebrates the Earth, such as using our manure, using no-till whenever possible, using the water from our well to heat our home…then heat our shop…then to water our cows, etc. (That’s right, all the same water, I’ll explain it sometime.)

But as I was sitting down to type last night, I decided to check out George’s lab work that was done at Mayo. (They have a really cool set-up, where you can register to log-in and receive the lab results yourself. No more waiting for that stinkin’ doctor’s call!) Anyway, I logged-in and for the first time ever, and I truly mean EVER, all of George’s lab work came back within normal ranges! (Well, minus the Vit. D and iron levels, but those are diet/sunshine related, not illness/disorder, so they don’t really count.)

I’ll admit it, I cried a bit. For the last just-about 2 years, I’ve dealt with continuously feeling like something wasn’t right, that we weren’t on the right track, bloodwork continuously showed something off here or there, nothing fit together, etc. It was a whirlpool of nightmares. Since George was born, he has seen: three pediatricians, two pediatric geneticists, two pediatric gastroenterologists, pediatric cardiologist, two pediatric endocrinologists, two pediatric neurologists, two dieticians, pediatric oncologist, pediatric neurosurgeon and several other various ER docs, nurses and staff. He has had: two colonoscopies, an upper GI series, multiple x-rays and ultrasounds, a liver biopsy, three MRI’s, an echocardiogram and two CT scans. He has given more blood for bloodwork that some people donate to the blood bank. He’ll be 2, and he’s been through so much, but is still such a wonderful little boy.

One of the things that I hear the most, when people hear about George, is that he doesn’t LOOK like anything is wrong with him. That’s always the problem. I wonder how many of those doctors blew us off because they felt he didn’t “look” sick enough. I know for sure one did, I overheard him tell the students that were following him those exact words. It went something like this, “And in this room is a 6-month-old male patient, case seems somewhat unremarkable. Mother has sought care at Mayo. Came in with fever, slight dehydration, etc. There’s no clear diagnosis, and I’m not real sure why they’re here. Their local hospital probably overreacted. We’ll keep him through tomorrow to satisfy the Mother.” (Needless to say, I requested a discharge immediately and we never returned to that set of physicians.)

We have so much to be thankful for.

This morning, Big Bro told me that they didn’t have school today because it was Earth Day. That sealed the deal for me. I’m not writing about our farm today. I’m not writing about how to recycle, or how to reduce your carbon footprint, or how to reuse your milk carton to make a mailbox. We should all know these things, and we should all be doing them. Every day. Period.

But today is Good Friday first. It’s a day that we celebrate all that has been given for us. The Blessing that was bestowed upon us so many years ago. And for me, today is a day of thankfulness.

Yes, I won’t be brushing my teeth with the water on, I’ll turn off lights where I don’t need them, our bulbs are already energy efficient. Those are things we do everyday. But today, I’ll spend extra time thanking God for those gifts that He has given. Including the ultimate sacrifice of His only Son.

Today is definitely a Good Friday.

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.

A Mother’s Love

I saw this on Facebook tonight…and couldn’t get it out of my head.

A Mother's Love

This was the caption under the photo:

This is a true story of Mother’s Sacrifice during the Japan Earthquake.
After the Earthquake had subsided, when the rescuers reached the ruins of a young woman’s house, they saw her dead body through the cracks. But her pose was somehow strange that she knelt on her knees like a person was worshiping; her body was leaning forward, and her two hands were supporting by an object. The collapsed house had crashed her back and her head.

With so many difficulties, the leader of the rescuer team put his hand through a narrow gap on the wall to reach the woman’s body. He was hoping that this woman could be still alive. However, the cold and stiff body told him that she had passed away for sure.
He and the rest of the team left this house and were going to search the next collapsed building. For some reasons, the team leader was driven by a compelling force to go back to the ruin house of the dead woman. Again, he knelt down and used his had through the narrow cracks to search the little space under the dead body. Suddenly, he screamed with excitement,” A child! There is a child! “
The whole team worked together; carefully they removed the piles of ruined objects around the dead woman. There was a 3 months old little boy wrapped in a flowery blanket under his mother’s dead body. Obviously, the woman had made an ultimate sacrifice for saving her son. When her house was falling, she used her body to make a cover to protect her son. The little boy was still sleeping peacefully when the team leader picked him up.
The medical doctor came quickly to exam the little boy. After he opened the blanket, he saw a cell phone inside the blanket. There was a text message on the screen. It said,” If you can survive, you must remember that I love you.” This cell phone was passing around from one hand to another. Every body that read the message wept. ” If you can survive, you must remember that I love you.” Such is the mother’s love for her child!!

Why did this strike a chord? Aside from just being a mother? (By the way, snopes clarifies that the picture and the story don’t go together…I’m fine with that, but whether or not the two go together, they both hit my heart.)

Well, to put it simply, I’m somewhat in the same position.

After researching and researching and researching some more…I’ve learned quite a bit about George’s OTC. And if he truly has OTC (which has been pretty well proven through testing and improvement with the diet), then we’re dealing with a disease that does a lot of taking.

For example…in OTC, males are hit harder than females. In fact, 50% of males born with OTC do not live 72 hours. And of the 50% surviving, another 50% will die by the age of 5.

Those are the facts.

So, on Sunday we head back to Rochester. And this time, the questions will be a little more pointed and a little more clear. I need to know exactly what the doctor is thinking, and what we need to do. I’ve read on some new research showing hopeful uses of gene therapy…something we may look into.

Whatever it is, we will do…I will stand over my son and let the roof crash on me, so that some day he can stand tall and read, “If you can survive, you must remember that I love you.”

Home Away from Home

Well, George has had a bad week. Yesterday (Friday) we came in for IV fluids. Unfortunately, George was making his Mama nervous. He kept falling asleep. By noon, he had taken three naps, and by the time we were in Aberdeen getting fluids, he was on nap number seven.

Now, I know that after the week he’s had (tonsils and adenoids out, tubes in ears, staying in the hospital for three days, etc.), he deserved some rest…but for a 2-year-old, well, we were dwelling in a dangerous area.

George’s OTC has “episodes,” which are periods of seizures, brain swelling, high ammonia levels, etc. These are medical emergencies and need to be treated with IV therapy ASAP. In fact, I carry a letter from Mayo and a letter from his pediatrician, instructing any ER we may end up visiting that if George comes in with fever, lethargy, or other unexplainable symptoms, he needs to be treated immediately. No waiting for triage, no waiting for doctors orders, blood draw and IV first, questions second.

So, my question when we came in Friday afternoon was, “Is his lethargy caused from regular post-op blahs? Or are we dealing with something else?” Doc couldn’t answer that, so we drew some blood. And quickly received our answer. George was dehydrated.

Now, I received a thorough grilling from our pediatrician. You see, he was behind in information. He knew that George had surgery on Tuesday, but he didn’t realize that he wasn’t taking anything orally and had only been released the night before with the saline-lock in his hand, with orders to come back each day for fluids until he was drinking 20-30 ounces per day. So we had gone a little over 12 hours without fluid, and George’s stats weren’t good.

The doc explained it to me like this: George’s body thought it was starving. So, it started the process of breaking down it’s own tissue to get enough protein, etc. that it needed. He called it acidosis.

So, we are back in the hospital. We have learned a valuable lesson. George can’t go very long without fluids. He dehydrates in RECORD time…and I mean fast! And although he was producing tears, had a runny nose, moist mouth (all signs that he’s hydrated enough), the blood work showed a way different story.

And now we know.

It is Sunday…and I will give thanks to God for allowing us to have the technology and the means to be able to figure these things out, and correct the deficiencies that are there. I will thank Him for the wisdom of the doctors, the compassion of the nurses and the love and care of all our friends and family. I will thank Him for mother’s intuition.

But most of all, I will thank Him for George.

Good Friday trumps Earth Day

I was all prepared to write a post today about all the things we do on the farm that celebrates the Earth, such as using our manure, using no-till whenever possible, using the water from our well to heat our home…then heat our shop…then to water our cows, etc. (That’s right, all the same water, I’ll explain it sometime.)

But as I was sitting down to type last night, I decided to check out George’s lab work that was done at Mayo. (They have a really cool set-up, where you can register to log-in and receive the lab results yourself. No more waiting for that stinkin’ doctor’s call!) Anyway, I logged-in and for the first time ever, and I truly mean EVER, all of George’s lab work came back within normal ranges! (Well, minus the Vit. D and iron levels, but those are diet/sunshine related, not illness/disorder, so they don’t really count.)

I’ll admit it, I cried a bit. For the last just-about 2 years, I’ve dealt with continuously feeling like something wasn’t right, that we weren’t on the right track, bloodwork continuously showed something off here or there, nothing fit together, etc. It was a whirlpool of nightmares. Since George was born, he has seen: three pediatricians, two pediatric geneticists, two pediatric gastroenterologists, pediatric cardiologist, two pediatric endocrinologists, two pediatric neurologists, two dieticians, pediatric oncologist, pediatric neurosurgeon and several other various ER docs, nurses and staff. He has had: two colonoscopies, an upper GI series, multiple x-rays and ultrasounds, a liver biopsy, three MRI’s, an echocardiogram and two CT scans. He has given more blood for bloodwork that some people donate to the blood bank. He’ll be 2, and he’s been through so much, but is still such a wonderful little boy.

One of the things that I hear the most, when people hear about George, is that he doesn’t LOOK like anything is wrong with him. That’s always the problem. I wonder how many of those doctors blew us off because they felt he didn’t “look” sick enough. I know for sure one did, I overheard him tell the students that were following him those exact words. It went something like this, “And in this room is a 6-month-old male patient, case seems somewhat unremarkable. Mother has sought care at Mayo. Came in with fever, slight dehydration, etc. There’s no clear diagnosis, and I’m not real sure why they’re here. Their local hospital probably overreacted. We’ll keep him through tomorrow to satisfy the Mother.” (Needless to say, I requested a discharge immediately and we never returned to that set of physicians.)

We have so much to be thankful for.

This morning, Big Bro told me that they didn’t have school today because it was Earth Day. That sealed the deal for me. I’m not writing about our farm today. I’m not writing about how to recycle, or how to reduce your carbon footprint, or how to reuse your milk carton to make a mailbox. We should all know these things, and we should all be doing them. Every day. Period.

But today is Good Friday first. It’s a day that we celebrate all that has been given for us. The Blessing that was bestowed upon us so many years ago. And for me, today is a day of thankfulness.

Yes, I won’t be brushing my teeth with the water on, I’ll turn off lights where I don’t need them, our bulbs are already energy efficient. Those are things we do everyday. But today, I’ll spend extra time thanking God for those gifts that He has given. Including the ultimate sacrifice of His only Son.

Today is definitely a Good Friday.

Day 2 – More good news

I had to make a quick, mid-appointment update to bring some really great news…George no longer needs to have growth-hormone shots!

Now, this may only be temporary, we will have to come back in 4 months and double-check on things, but I’m certain that things will continue to go on the right track. Sadly, our visits with Dr. Lteif (endocrinologist), may become fewer and farther between…but that’s only sad because she’s such an excellent physician, and thinks pretty highly of our little man.

Up next, we see the neurologist, who will become the lead doctor in George’s care. Dr. Renaud is a pretty great doctor, too.

So, as long as everything goes as planned, we’ll be on the road heading north shortly after lunch. And for once, I’m leaving Mayo feeling as if we’ve finally turned a corner, not just headed further into the abyss. What a great feeling that is! (And for those new to my blog, George is suspected to have Ornithine Transcarbamylase Deficiency, a disorder that doesn’t allow him to break down protein…which means he won’t be enjoying full servings of meat, dairy, etc., for most of his life.)

Yesterday, when they drew his blood, I saw on the paperwork that his tests were heading to Baylor for the genetic testing. George hasn’t travelled much in his almost-2 years, but his blood certainly has!

Ag Book of the Day 13:

“What Do I Make? (Let’s Find Out!)” by Dale Simpson. A great board book, with turning wheel, where you can match up the animal with their gift to us! Great for the little guys! Include milk from cows, honey from bees, clothes from sheep, etc. And with the cute cow-shape of the book, and great illustrations, it keeps the little ones interested in the book!

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