Brutally Honest

Thirty-four years. That's how long I have been changing diapers.  There is no end in sight.  Every night I listen for my daughter crying in the night, as she is occasionally unable to sleep.  Usually I get up with her four or five nights each month. In the morning, I will start her bath water and guide her to the bathtub, lift her eighty-five pound body into the tub and give her a bath. She will splash happily for a while until I lift her out, give her a massage and get her dressed for the day.  Then comes breakfast feeding and the day begins!

I did not ask for this life.  I am not special and chosen by God to care for this "angel from heaven." I do not know what her true cognitive abilities are, but if she has the capability to understand at all, she would know that she is a sinner in need of grace, just like me.

When Bethany was born, she was a little pink thing and the midwife immediately noticed that she had a tongue-thrust. Little were we to know how important a problem that would become.  Soon we knew that she could not suck very well, and she screamed with colic almost constantly.  A feeding specialist was recommended to us, and the misery began.  Since I was homeschooling my older three children (the oldest was eight), I had to drag them to the doctor's office on almost a daily basis. We carried our school books so we could keep some semblance of normalcy.  Bethany was diagnosed with "Failure to Thrive," but the doctor still was trying to make sense of her symptoms. She knew other things were wrong.

Finally, when my daughter was about eight months old, her doctor gave up and sent us to another specialist.  Based on three of her symptoms, he diagnosed her with Beckwith Wiedemann Syndrome. That was actually good news, because the research showed that most children with that syndrome outgrow their physical problems and live a normal life.  We soon learned that Bethany was not "most children." Unfortunately, the diagnosis meant many trips to the doctor and expensive ultrasounds performed every three months to check for kidney problems.  Even though Bethany did not have enlarged kidneys, the main symptom of Beckwith Wiedemann, she still had to have the ultrasounds until she was eight years old.  By her first birthday, we could no longer get insurance for her, so we had to scrape together the money for all her medical expenses. This piled even more family stress on us, and we all had to make sacrifices for our little daughter.

When she was three, a special education program was recommended for us, and we gave it a try. Our little one did not adapt well to school, even with me in the room.  She screamed and threw temper tantrums and nothing interested her or calmed her down.  The head of the program, who desperately wanted to help us, told me that Bethany was a mystery. I heard that a number of times from education experts. I did not blame them. That is how I felt too.  Mostly, I felt like I was part of a zombie apocalypse--or would have if I had known about zombies back then!

I felt alone, and perhaps my husband did too. He was busy with work and his schedule involved traveling, so we didn't really have time to sort through our problems.  We muddled along, taking one day at a time.  I wish I could say that I turned to God in my desperation, crying out to Him and seeking His face, but I didn't. It was all I could do to keep house, homeschool, and take care of Bethany!

I am reading Total Truth by Nancy Pearcey right now.  I am learning that America highly values the individual over community, and has devalued family, small organizations, community in church, etc. As I think back on my experience, I know that I missed community. We had almost no help from anyone. My parents had moved away from their parents, so I did not grow up in the constant presence of grandparents, and we did the same thing. We moved all the way across the country. Looking back, I wish we had lived closer to family where we would have gotten more support.  However, it was God who brought us to California, and I don't know if it is right to even wish this!

We were active (and still are) in our church. My husband was and is a deacon, and we both taught classes, participating in almost every event.  Unfortunately, the nursery workers had too many children on their hands, and Bethany could not handle the noise. She was soon kicked out of the nursery. I attended church as much as I could, sitting in the back and moving to the restroom when she got too loud. My time with God's people was important and necessary to me.  After a while, I gave up and stayed home.

A few years later, another family with an autistic child started a little class for our two children and a few others who were severely handicapped. We took turns watching each other's kids, and were able to lead fairly normal church lives for a while.  It was good to talk to someone going through the same thing who was dealing with similar pain.  We enjoyed several years with faithful teachers taking over care of our children during their teenage years, and that was a blessing!

I say the above to mention that the church as our community was a help, although we could have used much more support and counsel at the time.

Somewhere in all this, I became very angry with God.  I realized that Bethany was not getting better, and I felt stuck. I could not see any hope for a normal life. For a year I ignored God and did not crack open the Bible. When I tell people about this dark time in my life, I see shock and judgment register on their faces. I do not care. It is part of who I am.

When I read the Bible, and remember the stories I learned through the years I know others have felt similar pain.  Moses spent forty years in the wilderness before God called on him. He missed out on going in the promised land because of his anger. Elijah won great victories, but felt alone and afraid. God met him with a still, small voice.  David felt abandoned by God, but he was a man after God's own heart. Peter failed, but God still loved him and used him.

Yes, I did come around and return to trusting God, accepting my place in life and loving God's word. I can't say when, I just know it happened. God met me in my hard place.

As I contemplate my experience, I think of it this way:  When sin came into the world, God's creation was cursed. Bad things happen as a result.  Our bodies get sick and decay. Genetically, our bodies experience more mutations and fail. Something did not go right with Bethany. I don't think God chose for things to go this way, but He allowed it as a consequence of sin in general. When Jesus healed the blind man, He said the man had been born blind to give God glory. I can't understand the reasoning behind bad things happening, but I can know that God will get glory from it.

So today I count my blessings. Even though my life is much different than I imagined it, it is still good. I have been blessed with good friends, and some have helped financially and with gifts in dark times. My other children live lives that honor and please God. It is my belief that they are a little more caring because of their sister.

We have been blessed to be a part of NACD and to know Bob Doman, who was the first person to explain Bethany's problems and give us hope.  We are privileged to have made friends with ladies and their families who have loved on Bethany and given me a break from her daily care.

It is a pleasure to hear Bethany laugh and squeal and call "Mom" or "Dad." She is able to connect our names with our persons, and that is good. It is fun to see her stop and look at the plants and want to touch them. The simple things of life are good.

A friend who had suffered a great loss, posted the article linked below about grief. It caused me to think about my own pain and grief and my frustration with platitudes.  I don't get upset about platitudes anymore because I know people are just trying to figure out the reason in their own minds and help in whatever way they can. I may not agree with what they say, but I smile and move on.

Almost everyone goes through difficult times. No matter the problem: illness, cancer, pain, heart problems, a broken relationship, a lost friendship, the death of a loved one--especially the death of a child, it is not pleasant.  The loss is always there. It takes time to recover, and it is never forgotten.

I have often played "what if," imagining that if only I had done this or that differently, Bethany would be better. Recognize that the person in pain often feels guilty already. Don't judge! It is good to exercise compassion for those who continue to grieve. As the article says, it is helpful to just be there. I would say that prayer is a great help as well.



Essential Oils

I'm playing around with essential oils these days.  So far, I've loved the scents of most.  Some have grown on me--like basil. I use DoTerra, but there are other good brands.  I also like Rocky Mountain and Young Living.  Rocky Mountain is best if you don't want to participate in Multi-Level Marketing. I don't mind the MLM even though I haven't pursued selling DoTerra. I do get discounts and extra perks. Also, my nutritionist has me taking DoTerra supplements every month, so I automatically spend a certain amount--might as well get the freebies too!

Young Living is used by several of my friends as well as NACD, the organization that helps Bethany.

Bethany has been helped tremendously by frankincense.  Her seizures have been reduced about 90% and she doesn't have grand mal seizures at all anymore.

As far as DoTerra specifically:

I'm not seeing any miracles with the Slim and Sassy--no sudden weight loss! But I haven't been perfectly behaved on the diet either.

The vitality pack works well--I've had more energy, my nails are stronger, and my hair is getting thicker.

Lavender is helpful for relaxing, Breathe and peppermint work great for congestion, eucalyptus is wonderful for cuts, infections, etc. I use many oils and am happy with all of them.

So now, the real reason I am posting this is to hang on to this recipe.  I listened to Josh Axe talk about essential oils and he gave out a few recipes.

This one is for a muscle rub.


Links to sellers of essential oil mentioned above:

http://www.doterra.com/#/en  If you want to sign up under me, let me know.

https://www.youngliving.com/en_US I have a friend selling these oils.

http://www.rockymountainoils.com/  I've tried a few of their oils and the quality is good and the prices are generally less than Doterra and Young Living.

http://draxe.com/natural-remedies-category/essential-oils/  Lots of good information on oils, nutrition, and health.


It's a Crazy Life!

God has a sense of humor.  

On Monday, I needed to shop at Walmart in the evening, so I took my driver's license and charge card out of my wallet and carried them in my pocket.  Ever mindful of safety, I didn't want to carry a purse.

That began the missing driver's license saga!  I didn't recall what I had done until Wednesday when I noticed that my license wasn't in my wallet. That began the panicked search all over the house for my missing cards, including going through all the trash, prayer, checking at Walmart, and more prayer.

So . . . I haven't been stopped by a police officer in 20 years, and I needed to take Bethany to her caregiver and then attend a meeting at church.  I decided to risk driving without my license.  Guess what? Yep.  I was stopped by a police officer.  You can only imagine how nervous I was, and I had no clue what I had done.  

It turned out that I hadn't done anything wrong.  She had thought I was using my phone, but I wasn't.  I dug through my purse until I found it and once I figured out where the calls were was able to show her that I was innocent.  Fortunately, she didn't check my ID!

Talk about stressed out! So I dutifully made an appointment with the DMV and resigned myself to limited driving, trying to think of ways to have Noelle drive me around without encroaching on her time.  Unfortunately, with all the illegal aliens  undocumented immigrants now getting driver's licenses, the first available appointment was six weeks away.  Sigh.

This morning, I woke up at five, cleared off my desk, and lo and behold, there were my cards, right under a wedding invitation I had scanned for my son!  Thank you, God! 

Now why in the world when I haven't been stopped by a policeman but once in my life, did I get stopped on the one day I didn't have my license?  


Not so deep thoughts . . .

I would never have thought this, but it is easier to put up with broken teeth than a sprained ankle.  Dentists can fix teeth quickly!

I wonder what causes Bethany to have more seizures.  This past month I started using more frankincense on her feet and changed her iodine from crushed tablet to liquid.  Seizures increased, but it might be coincidence.

I miss my kids and I wish they'd call, Skype, text, and or email more often!  I wish I had done the same for my parents. (Well at least write and call--we didn't call much because it cost money! Computers and cell phones didn't exist.) After writing this, I'm going to call Dad tomorrow.

Noelle and I went shopping at Michaels and put together this happy arrangement!


More Health Care Surprises

First, let me say that I am not writing this to elicit sympathy.  Although I may cite personal examples, my desire is to explain the ramifications of the health care law.  This is simply to increase awareness. As a Christian, I trust that God is able.

My husband helps run a small nonprofit ministry, so we purchase our own insurance.  Before the new healthcare laws were enacted, the money spent on insurance was considered nontaxable income.  Now it is taxable.

This year we were surprised to learn that out of pocket expenses for medical care are now taxable as well.  Previously, if we had high medical bills, we could receive extra income to pay for those expenses.  That is no longer allowed.  For example, when our handicapped daughter was small, we paid for her expensive dental treatments ourselves.  We were allowed to ask people to donate extra money to our ministry to offset those expenses.  This is no longer allowed under the ACA as of this year.

To add insult to injury, the money we do spend on extra health care is now considered taxable income. Whether the authors of the bill intended this or not, the obvious result will be that people in ministry will have to carefully consider whether they can afford that trip to the dentist or new eye glasses, etc.

It increasingly seems to me that the ACA is just a sneaky way to raise taxes on the middle class, and employees of small churches and nonprofits are the first to experience the wonderful opportunity to pay more taxes!


Giving--Is the organization worthy?

Lately I have seen facebook posts encouraging people to give or not give to various organizations. When I read the information, I was frustrated because the posts often were emotional and without clear sources for their information.  If facts were presented, I had no way to verify their accuracy.

Since my husband has worked as a consultant for nonprofit ministries for years, I decided to ask him for his opinion.

First, I wanted to know if it is a bad thing for operating expenses to be a high percentage of the amount raised.  Surprisingly, he didn't think so.  He said that it really depended on how much was raised. If an organization has low operating expenses of $100,000 and raises $500,000, it has a 5 to 1 ratio and has $400,000 to spend.  If a second organization has higher operating expenses of $500,000 and raises $1,500,000, it has a 3 to 1 ratio but has a million dollars to spend.  Even though the overhead for the second organization is much higher, it can spend more on serving the needs of others.

Secondly, I asked about the fairness of paying a CEO a high salary.  He said that a good CEO is worth the money. (Basically, you get what you pay for.) 

He mentioned three sources of accurate information on nonprofits:  http://www.guidestar.org/http://www.charitynavigator.org/, and http://www.ecfa.org/

However, the above organizations can not measure everything.  When deciding whether to give to an organization, one also has to look at the goals and how well they are being met.  This is not easy to measure because it depends on getting evaluations from the people the group is helping. So it is good to find out how well the organization performs when meeting the needs of others.

In conclusion, carefully examine the organization but don't just look at the percentage of money spent on overhead as compared to actual ministry.  Decide whether the goals of the group match your desires and then do your best to find out how well the nonprofit meets those goals.