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.

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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.

Sunday Sharing

I’m home from church today, sick. Yet, even on days like these, I count my blessings.

Tomorrow at noon, I will draw a winner for my Pink KitchenAid prize pack…I would like to thank EVERYONE who has participated, entered, shared their stories, whatever it may be.

So, for today, here are three more stories…blessings to you all:

On March 7, 2008, my husband’s younger brother got married. The next day we learned his oldest brother’s wife had lost her battle with breast cancer. Although I never had the pleasure of meeting her, I think of her often. We talk about her, her husband (my husband’s brother), and their two little boys often.

Starting last year we run the Liz Hurley Ribbon Run in memory of Tanya. I’ve jokingly told my family that I’ll run it until all I can do is walk and then I’ll have someone push me in a wheelchair if I have to. One day we hope to run it with our entire family. I can’t think of a more fitting way to cherish the memory of someone who went home to God at such a young age.

And another:

My sister has some cancerous breast tissue removed a couple of years ago and now my other sister has to go back and have another mammogram because something showed up in the 1st one. I don’t know all the medical terms for what they have right now but as soon as you hear the word Cancer you get nervous. I haven’t had a mammogram in 4yrs. I didn’t even realize it was that long. I have been seeing the same doctor too and he never mentioned to me I should get one. So I have an appt. this October to have mine done. It is so important for us as women to take control and get this done. God bless all the cancer patients in this world.

And one last one for today…

I will never forget my Mom and Dad’s 28th wedding anniversary.  She came to see me at work and had an IV in her hand.  I asked her what
was going on, since she also works at the same hospital that I do, but it was her day off.  She took me into our nurses lounge with my Dad at
her side and said, “I had a colonoscopy today, and they found a mass.”  Then she started to cry.  She was only 49.

I immediately went into nurse mode and started to grill her with questions.  She had the colonoscopy done at a different facility, but came back to our hospital to get labs and other tests done, then was going home.  I was numb the rest of the day.

The next day, I went to Columbus for a Young Farmer conference, and Mom went back to work.  Dad called me that evening and said that Mom started to bleed at work, and it wasn’t stopping.  She left work(which NEVER happens!) and Dad took her straight to Fort Wayne.  They admitted her to the larger hospital, with a colorectal surgeon, and gave her blood transfusions.  (One of the biopsy spots failed to clot, which was the source of her bleeding).  She was in the hospital a few days, then was released to home.  She had a colon resection on September 6, and found out 5 days later they got it all.

She lucked out, had a great surgeon, and an even greater faith in God.  No chemo or radiation.  Just frequent checks with her surgeon.  So pay attention to your body.  It does talk to you.  All you have to do is listen, and have faith.

Yes…you are so right. All we have to do is listen, and have faith.

Tomorrow morning’s post will wrap this month up…and I’ll explain why I did all this. And then, at the stroke of 12 (or close there to), I will draw the name of a lucky winner of this sweet KitchenAid. Good luck to all who entered…and more importantly, good luck to all who shared their stories. May God bless every one of you.

Fighting the Good Fight

Yesterday, my fellow blogger and friend-across-the-miles started her second battle with cancer. I’ll be praying for her for the next few weeks/months as she boldly fights this beast called cancer. If you’d like to swing over and give her a shout, just letting her know that others are in her corner, you can leave a comment on my “Fight Like a Girl” post that you did, and be entered to win a pink KitchenAid Artisan Stand Mixer. I’ll be giving it away at the end of the month, so hurry and enter!

I’m sharing another reader’s cancer story today…I’m so glad I did this. I’ve learned so much about the strength of so many women. You guys are all amazing. It makes me feel silly for worrying about some of the things I worry about. Thank you for a lesson in humility, a lesson in strength and a lesson of how to keep going.
I wanted to share with you my story of my step dad that has passed away to cancer.  Five years ago in May my mom married Bill.  They were happy together in fact the happiest I have ever seen my mom in years.  In August Bill had a swollen gland in his neck so he went to the hospital.  For a couple of months the doctors told him it was allergies and put him on Zertec and antibiotics.  Sept 8, 2006, Bill got up during the middle of the night to go to the bathroom and he collapsed on the floor.  Blacked out and was unresponsive.  My mom had called 911 and the ambulance was on their way when she had called me.  They did get him to start breathing again on the way to the hospital.  Several hours later the transfered him to another hospital and mom and I were on our way there too.
Once there, they did a scope to look at his throat and found a cyst wrapped around his main artery and that is what caused him to black out and quit breathing.  After further tests we found out it was cancer, Yes cancer not allergies.
That’s when the battle began.  We stayed at a house that is just a block away from the hospital and the Cancer treatment center.  While Bill was in the hospital trying to get better we spent endless hours by his side (the treatments he was receiving and the lack of blood to the brain would make him hallucinate).  Four weeks after he was diagnosed with cancer, he woke up one morning and asked me if I thought he was going to die and I told him no.  That night mom and I went home to get clothes and so I could spend sometime with my family and we got a phone call that we needed to come back. Bill had taken a turn for the worst.
We drove back that night and he did make it three more nights before he passed away.  Cancer is a horrible disease to watch someone die because of it makes it even harder.  To see a strong man weak and needing help getting up, going to the bathroom, and not being able to eat because the radiation burnt his throat was very hard and then to find out that the treatments didn’t help was frustrating.  With cancer I think a person has every feeling possible at some point and time of treatment.
I pray for all people going through cancer, their family, and their cartakers every day.  It takes alot of courage and strength to get through such a horrible disease.
Thank you, everyone for sharing your lives with me. Let’s keep raising awareness, and supporting others that are fighting the good fight. We need more marks in the win column.