Christmas Calamity and Christmas Peace 2015

I would have never put calamity and peace together. We still have a lot to travel on this journey. A lot to learn, to wait, to sift through, mountains and valleys. Psalm 23 comes to mind easily.

1 The LORD is my shepherd; I SHALL NOT WANT.
2 He makes me lie down in green pastures. He LEADS me beside still waters.

3 He RESTORES my soul. He LEADS me in paths of righteousness for his name’s sake.

4 Even though I walk through the valley of the shadow of death, I WILL FEAR NO EVIL, for you are with me; your rod and your staff, they comfort me.

5 You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows.

6 Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the LORD forever.

On Wednesday, December 16, my niece, Melissa Johnson, was driving to pick up her employers from the airport. She hit a pole, lost control of her  truck, it flipped twice, injuring her badly, leaving her without breathing. She was wearing a seatbelt, headed to pick up her employers, then to prayer meeting. 19, first semester finished at Indiana University South Bend, gifted with children, loved Minions, three older brothers.

25 Days later, Melissa’s condition remains unstable. She is out of ICU, breathing on her own. Her body will heal (broken leg has been operated on, bruises are fading), but how much of her mind and her cognition will return remains unanswered.

Joel, the kids and I drove to Indiana for Christmas to be with his sister, Kay and brother in law, Dave, and our nephews. Melissa did not wake up when we were there, but we wanted to be there to support the others.

This was a difficult time for me to face an ICU unit. The sounds, the IV beeps, the ventilator, the nurse suctioning her mouth, positioning her body. The smells of rubbing alcohol, the gloves, the IVs – yes, they each have an aroma.  I left each night GRATEFUL I could stand up and walk out, because during my transplant experience and relapses, I would shrink further into the bed every time my loved ones would leave. I would cry endlessly. I would watch the clock and listen to the clicks, listen to all the IV beeps in the rooms surrounding me.

Each evening we left the trauma center I had panic attacks beginning, quick breathing, tightening of the chest, pain down my arms, severe headaches. Guilt. Thankfulness. Growth, Recognition of what Joel, my parents, and my caregivers at Emory did for me.

Most of all, I left with an enormous amount of thankfulness for my donor’s family that gave me a 2nd chance on life. After 3 and 1/2 years, I finally wrote UNOS (United Network For Organ Sharing).

The first year, they don’t allow you to write. It’s too raw, too hard for the donor’s family and the recipient. The 2nd year, I’d had a relapse and had to go through rehab again.

We started family therapy, marriage therapy, I was depressed, had suicidal thoughts, was lonely. Many friends and even family members began to desert me, thinking I “should be over this, “or I “wasn’t thankful or joyful enough.” My second year was tough as people expected me to be the mom, housewife, homemaker, get back to exercise, fitter, stronger, faster — I had a heart that was 20 years younger. I should be a powerhouse!  But I wasn’t. Through the year, I progressed, our family progressed, and God revealed more of Himself and His Word.  He also blessed me with physical recovery.

It took seeing Melissa in a trauma unit for me to write to UNOS, having them to contact my donor’s family with my letter of thanks. I don’t know what, if anything, will come of it.

But I wanted them to know how grateful I am and how much it matters to Joel, Chloe, and Jack.

 

Why does everybody keep giving my kids junk food?

  
 In a society with impatience, instant gratification, entertainment, rewards, everywhere we go someone is eagerly trying to give my kids, 9 & 7, junk food.

  • Read for 500 minutes a month – earn a personal size pizza at Pizza Hut with 620 calories & 67 carbs, courtesy of Book It, a program encouraging young students to read daily.  
  • Say your Bible verse at Sunday school, earn a fun size of M & Ms , 75 calories, 3 grams sugar. 
  • Complete a music lesson, receive a kid’s handful of skittles (or comparable) for 25 cal or 4 grams of carbs. 
  • Study hard for 9 weeks at school, receive an Oreo milk shake, courtesy of Applebee’s at a whopping 840 calories and 100 carbs.  

Throughout the year, let’s take Valentine’s Day ( which used to be cheap little cards), Easter baskets, Halloween, Thanksgiving (or Bust A Gut Day), Christmas ( candy canes, candy, cookies, hot chocolate), birthday parties with grab bags filled with sugar. Really? This is how we reward ourselves and our children?

Every mom wants to be the mom at school who brings in “treats” because it’s a pick me up, it makes the kids happy, gets in good with the teacher. It doesn’t help a diabetic child, or a child struggling with their weight. It sets them apart even more than they already are.

Sugar is everywhere. The checkout line, the school, the church, retail. Has the entire country gone insane? Hot chocolate and donut holes at church while singing Christmas carols? A Christmas party with cookies, brownies, candy & juice boxes?

What would that same parent say if I offered their child a cigarette ? But it’s a “ treat” to give my children a full sized Oreo milkshake because they worked hard for their grades? Why are we rewarding with things that will ultimately destroy their bodies when it’s not a “ one time thing?” It’s every place we go.

And a 9 year old and a 7 year old cannot make long term decisions. That is why they can’t join the military, sign a contract, get married. They cannot understand long term effects.

With the epidemic of childhood obesity, please consider non food based rewards and treats like games, puzzles, dollar store items, certificates. For functions with food, such as a birthday party, offer cake or ice cream, not both, water bottles to drink. How about encouraging words? Instead of a personal pan pizza, credit to a book store?

Just like most people wouldn’t give out food containing nuts because some kids might have nut allergies, be aware that some kids may also have medical issues with sugar.

Treat Yourself!

Indulgence, celebrate, extravagance, pleasure, delight, satisfaction.

I love treating myself & boy, can I rationalize getting a food or drink treat. I LOVE getting a coke ( which is now off limits for the kidney diet restriction. Off limits, but yes, I’ve had one.). I LOVE a Starbuck’s iced caramel macchiato decaf, with extra caramel. I enjoy baking breads, brownies, etc.

A while back I was talking to my sister about giving my kids treats and how I’ve gotten into regularly giving them or myself treats. If it’s a regular habit, it’s not a treat. A treat implies that it’s unusual or the minority of time.

So my nerd, analytical mind is thinking …” How many days a week? Once a month? Once a week? How often? What’s healthy for the kids or for myself? Do I restrict the size to a tall, or a grande? I haven’t settled on an answer, just that it’s the minority of the time, a minority of our diets. For me, it won’t reflect in labs or mistreat my new healthy organs someone sacrificed for me & God graciously gave me.

Moms… Any input on giving cookies, chips, candy, worthless juice or soda or junk to your kids is helpful to discuss. How many “exceptions” do you make for birthday parties, holidays ( Valentine’s Day, Easter coming up)? What about if you are a guest at someone’s house? What if you want chocolate cake, but don’t want your kiddo to have it? To sneak or not to sneak?

Wake Up, Muscles!

It has been a long road in recovery the last 5 1/2 months, especially in the area of physical therapy. After lying in bed in the hospital for 7 weeks waiting for the transplants and 9 weeks post transplant, let’s put it this way: my muscles went into a long winter’s hibernation. Asleep. Dead sleep.

When I wast first “waking up” in mid or late July, I had no idea I would be so handicapped. My legs wouldn’t move, my hands wouldn’t raise up to rub my face or hair, I couldn’t even talk.

So began Physical Therapy, PT and the infamous Amelia. Wiggling my toes, ankle pumps, quad & glute pumps, sitting up, standing up, walking to the door of my ICU room & floor. I’ve never experienced such fear & pain in my life. Even getting moved from the bed to a recliner was fearful & painful. “If I fall on the floor…” was all that I could think. Amelia demanded a lot & wouldn’t take no for an answer if I wasn’t in excruciating pain. She was tough, but I learned that the only way through this was doing the exercises. Hard work, feeling uncomfortable & out of my comfort zone.

If you aren’t exercising, you need to start. My physicians told me repeatedly told me the only way that I was eligible to be the first triple transplant in Georgia, was my strong will, my exercise background of running marathons (18 between 2001-2007), and the fact that I was compliant to what they expected. My past fitness really helped and helps me now to recover.

Ok, so you probably won’t have three transplants in your future. You may be in a car accident, develop disease, get older, etc. if you smoke or heavily drink, you’ve increased your health risks for many diseases. Do you really want to settle for a low quality of life?

Stop the excuses: it’s too hot, it’s too cold, I don’t have time, I don’t like to exercise, I can’t afford a gym membership, blah, blah, blah. Find some music & walk. Park far away in a parking lot instead of circling like a vulture wasting time for someone to get out of the closer parking space. Go upstairs & downstairs in your house 10 times. Use soup cans to do bicep curls or straight arm raises. Move your body out of the couch and do something! If not for yourself, think of your family without you prematurely. I do a lot of painful exercises for my husband, Jack, & Chloe.

If you choose not to exercise, don’t be surprised that as you age or something happens in your health that decreases your quality of life.

Thank You and Reflections on 2012

New Years Day is always a time for reflection, and we have a lot to reflect on from the 2012. Going back to the beginning of 2012, we had much uncertainty, waiting for transplant calls and trying to hold things together.

Looking back at 2012, I don’t think of it as a good year or a bad year. It was an adventure, filled with dramatic highs and lows, and a lot of sitting and waiting. Seeing Stephanie pushed to the brink of death, only to be rescued by organ transplants at the last minute, then the slow and painful recovery.

We have much for which to be thankful. We thank God for sustaining us and delivering Stephanie from her failing organs, and for keeping our family together despite all the turmoil. His providential hand has been very visible through the past few years, and especially evident this year.

We are very grateful for the love shown to us by so many people, many of whom we didn’t know. So many of you generously and sacrificially gave to Stephanie’s transplant fund. It vastly exceeded our expectations, and every month when we get the bill for Stephanie’s medicines, we are very thankful for your help.

We are very thankful for Customer Effective, Joel’s employer. They stood behind us and supported us through it all with Joel’s unpredictable schedule, and we could not have made it without them.

Some lessons we have learned in 2012:

  • We are not in control. We think we are, and we make plans, but we aren’t in charge. Nothing last year went as we had planned, but in hindsight, we are thankful that it didn’t   I had to learn to trust others for things like caring for my children, buying groceries, making meals, things that we think we control.
  • Kids are resilient. They had some very difficult times with their mom being in the hospital, and still do even now during the slow recovery when she can’t do some things that they want her to. We try to teach them that it is OK to feel angry or sad sometimes, and how to deal with those feelings in constructive ways, and we point to the milestones of the past year to show how God has worked and is good. It forced us to be more open with them about life and death, and we could not shelter them from the reality that their mommy could have died. Parents, don’t try to protect your children from all bad news. This wold is a scary place and dying is a part of living, something that we all must know how to face.
  • Men, you should practice doing some of the things that your wife does—wash laundry, do dishes, cook meals, give the kids baths, comb your daughter’s hair. Some day you might have to do these things.
  • Never say “now that I have gone through X I’m never going to worry about the small stuff anymore.” It’s not true. You would think that living through a triple transplant would make you immune to worrying about stupid everyday stuff or petty arguments. It doesn’t.

Who Deserves a heart?

I have just passed 6 months on the transplant list and through talking with many people, I have found many people have misconceptions.

Misconceptions include: how you get on the list, what is your # on the list, how long you wait & why, and many more.

The waiting process is different for everyone. It is based on your body size, blood type, tissue type, and where you will receive your transplant.

The process of getting on the national transplant list, managed by UNOS (the United Network for Organ Sharing, a private, non profit agency, http://www.unos.org) is very difficult. Your specialists needed to have exhausted all other avenues of treatments, decide whether or not you can live through a transplant, be mentally and psychologically strong, and if you can agree to the contract with UNOS.

With UNOS, there is no way to cheat the system. The most sick patients (in the hospital) get organs first; if there is no one that matches that organ, then the patients very sick, but living at home receive the organ, and so forth.

Your fame, money, or powerful job status CANNOT BUY an organ. it just doesn’t happen.

Since Dick Cheney received a heart at 71, there has been more questions and accusations of cheating/buying. Does he deserve a heart at 71, when there is a shortage of organs and younger people are waiting? Who deserves to live? Some people bitterly say “at least now we know he HAS a heart.”

It comes down to Who you believe is in charge of life. Who chooses when life begins and end? Who has the power & might, Who created all things? If your worldview is based upon God, then you believe God gave Dick Cheney an extension life. If your worldview is based on chance and “common sense”, then you may believe that young people deserve to live and once you get “old” then you are not as important as a 37 year old with kids. When I was 19, I thought 37 was old.

Yesterday someone was asking me if I think Mr. Cheney deserves a new heart? Am I jealous? He’s 71, I’m 37 with young children. No, I’m not jealous or wistful or any other term. I am so happy for him and hope he helps to promote organ donation awareness. He has children & grandchildren that are rejoicing he is still alive. He is as important to his family as I am to my family.

At the same time, I am compassionate to the donor’s family. They are mourning the loss of a spouse or parent or son/daughter.

So who deserves a heart? Biblically, no one. We don’t DESERVE anything from God. He gives his grace and steadfast love to those who love worship Him. He loved us before we loved Him. ANYTHING He gives us, is because He loves us & has mercy on us.

Hurry Up & Wait

I’ve been actively listed for both a liver and a heart transplant. The testing last summer was intense, mentally, spiritually, & physically. Since I will be the first one at Emory University Hospital with this combination of organ transplantation, every part of my health, labs, and meds are scrutinized.

The waiting is the hardest part and transplant recipients of my support group (whom have tremendously helped me), agree. At first the waiting was extremely tough, because my doctors said it would be a 3-6 month wait for my body size, antibodies, and certain parameters. It’s approaching 4 1/2 months.

Today is day 144 of waiting. In some ways it has gotten easier – I’ve enjoyed Thanksgiving, Christmas, more quality time with Joel, the kids, and my family. I’ve been blessed even more with my friendships, encouraging me & praying for me. I’ve grown spiritually & learned more Scripture. I’ve really picked up my hobby of jewelry making & involvement with Let There be Mom.

There are some days I forget I am waiting & that the transplants will come.

But, there are often sick days & days the suffering gets worse. The pain increase, rapid heart rates (A-tacks), uncontrollable stomach pain and issues. Nosebleeds, sore lip and nose from wearing my oxygen tube. 84 pills a day. 84! I’ve had e-Coli , strep, sinus infection viruses, my dog died of kidney cancer, our first floor of the house flooded with sewage water, and my entire family is grieving with me.

Through this I have been truly blessed by my Heavenly Father. His mercy and steadfast love are poured out. He keeps His promises, Joshua 21:45. He keeps his promises to ME.

Joel has a fantastic job that allows him to work at home.
My mom does our laundry.
My parents watch the children.
My sister, Jenni, watches the children, gives them baths & feeds them , & cleans twice a week.
My brother and sister in law help with children and house projects and repairs.
My church family has done everything from cutting the yard, visiting me, having church with me at home, run errands, pray, encourage, and counsel me & Joel. Sit with us to help with the kids, provided meals, gas money for our trips. Unbelievable love.

It IS a struggle to wait, but the woman of Proverbs 31 uses her time wisely, regardless of her health. And that’s my goal.