Saturday, January 31, 2015

It's Not OK

No matter what your views on vaccines are, it's not ok to shame parents for the death of their child from a vaccine preventable illness.

It's not ok to shame the parent if they vaccinated their child and their child contracted the illness anyway and died. 

It's not ok to shame the parent if they didn't vaccinate their child and the child died.

It's just not ok.

It's not ok, even if in the first case the parents' research showed vaccines to be safe and effective. Even if they failed to have a blood test done to make sure the child conferred immunity from the vaccine - not every child does. Even if the parents gave the child the illness because they didn't choose to make sure of their immunity either. Even if the parents were never told that their child might not become immune to the disease after vaccination. 

It's not ok, even if in the second case the parents' research showed that the risks of giving the vaccine to their child outweighed the risk of getting the illness. Even if the child wouldn't have an anaphylactic reaction to the vaccine, as can happen with some children. Even if the child's immune system wouldn't have overreacted making the child very ill, as has happened with many children and adults alike after receiving a vaccination. Even if doctors warned them that not getting the vaccine could be dangerous.

It's also not ok to shame a parent who vaccinated their child for the child's death due to the vaccine. 

Even if the doctors warned that getting the vaccine could be dangerous. Even if the doctors stayed silent about the risks of vaccination. Even if the parents failed to read the vaccine insert, as they should with anything they would have injected into their child. 

It's not ok because people on all sides of the vaccine debate have science to back them up, along with some fear, and usually lots of questions about the what ifs of vaccinating or not vaccinating. I say all sides, because there are many. There are those who cannot receive vaccines due to illness, medication, or allergic reactions to vaccine contents; or because some families have health histories that make even the most vaccine-promoting doctors question whether it's the right thing for that family; because some families are adamantly for vaccination and find they cannot proceed with vaccination for their child due to a bad reaction to the vaccine, or are adamantly against vaccines and find themselves needing to make the choice to do so because of their child's particular situation. There are parents who blindly get their children vaccinated, without studying the risks vs. benefits and parents who blindly deny vaccines without research. There are parents who don't know that some vaccines shed, and they are putting others at risk for days or weeks after their child is vaccinated and there are parents who don't realize their non-vaccinated child has come into contact with an illness and accidentally spread it. 

It is ok to show compassion for a family whose child has died or had serious complications due to a vaccine preventable illness or due to getting a vaccine. It is ok to mourn with them.It's ok to love them.  It's even ok to forgive them. 

Wouldn't this world be a better place if instead of placing blame and arguing, we wrap all of these families in love and forgiveness and realize that we are all doing what we think is best for our families? 

But...but.... you say. 

But love. If a child has died, no matter the reason, it is a time for compassion. It's as simple as that. 

Anything less than love is not ok. 

Monday, January 26, 2015

Return of the TRex Arms

I don't know what I'm doing anymore.

And that needs to be ok.

I'm in one of the worst places someone with psoriatic arthritis could be: off treatment and waiting. Waiting for tests and test results and doctors to decide whether or not I can resume treatment. 

I was in the same place a couple years ago - off meds and undergoing testing on my liver. One day I noticed my arms were not functioning properly. I was in a ton of pain.  I took a nap. When I woke up and hour later, I couldn't lift my arms at all and the pain was excruciating. After a quick call to my parents, we were off  - my husband dropped me off at the ER and took the kids to their house for a sleepover, just in case my hospital stay was going to be more than a few hours.

Once in the ER, I was called to registration area and asked for my health insurance card. My tyrannosaurus rex arms elicited strange looks from the staff until I mentioned that the reason I was there was because my arms weren't working properly. Once in triage, the "How Do You Feel on a scale of one to ten" pain question was posited. I laughed, commenting that the Wong-Baker scale didn't go high enough for my particular pain level, and I didn't have a copy of the Brosh scale on me. The nurse commented that, for someone in pain, I certainly had a good sense of humor. I told her I figured I had two choices: I could cry, moan, complain, and make everyone around me miserable, or find the humor in my t-rex arms and the blessings of a caring family and hospital staff taking care of me, She said that was refreshing to hear. 

This morning I woke up with the same arm problems. I know from experience it just gets worse from here. 

I could dwell on this fact, or I can live my life to the fullest. I could wallow in my illness, or make the best of things. 

So I took a bunch of prednisone to start a taper, and moved on with my day, being mindful of pain and arm usage. Should my arms get worse, I know I can head to the ER for a couple shots of heavy duty meds I refuse to get prescriptions for and then be on my way. 

Now to figure out how to get around when neither my arms nor my legs are cooperating ... this should be interesting, but I'm sure we'll figure something out. 

I don't know what I'm doing, but that's ok. Life wouldn't be as interesting if I had everything figured out. 

Thursday, January 22, 2015


I can always count on my friends to keep me thinking. My beautiful, inspiring friend Jackie, whom I don't see even nearly enough, shared her insights with and asked a question of an online minimalist group we both frequent. It was about needs. Real needs. What we need from the world, from others, and from ourselves. 

I have to admit that my first thought was "coffee... that's what I need... coffee - from the world, from others ... for myself." Not so helpful. My second thought was, "enough." But what is that "enough?" 

After not nearly enough thought, but oh, well, that's life for me lately...

From the world: food, water, beauty.

Food to not only nourish my body, but my spirit; to nurture family and community; to bring people together; to sustain and revitalize. 

Water, not only to sustain me, but to sustain the Earth. Water in which to bathe; to swim; to kayak. Waves lapping or crashing into the shore or babbling in a forest stream. Fragranced water in which to soak my aching feet. 

Beauty to buoy my spirits and soothe my soul. Both the outward beauty of nature and the inward beauty of people. 

From myself: integrity, the ability to find my center in any situation and balance in my life as a whole, mindfulness.

Integrity so that I might live a life worthy of being called Mama and Christian; so that I might inspire, love, and serve. 

The ability to center myself and find balance so that I may be receptive to God's love and others' care throughout the storms of life; so that I may be a shoulder to cry on or a pillar of support while meeting my own needs so I can continue to be there for others. 

Mindfulness so that I may treat lightly on the Earth; be respectful of others; live in the moment; and make good decisions for myself and my family.

From people: kindness, connection, and love.

Kindness because I like to receive what I give; because it feeds my faith in humanity; and simply because the world needs more kindness.

Connection to others is essential to sustain life. Community, family, and friendships are all about connection. I don't know what I'd do with out the unique and inspiring connections in my life. 

Love, because it is what sustains me above anything else. Because I love people, I get up every morning and my life has meaning and purpose. Because people love me, I can live my life knowing I'm cared for, supported, and valued. 

And for me, I need God. 

From God: grace, love, guidance.

Grace because every day I stumble, every day I mess up, every day I can do better, but because of God's grace, I am forgiven. It is through this forgiveness that I frame my life, striving to be as grace-full with everyone in my life. 

Love, because love. 

Guidance through the crazy funhouse that is my life. Left to my own devices, who knows where I'd be. The Spirit's inspiration leads me to the best places.

Interesting that while thinking of all the things I need from life, things didn't make the cut. I want coffee. Sometimes I feel like I can't live without my computer. But when it comes down to it, all I need is nourishment of my body, mind, spirit, and soul. 

Thursday, January 15, 2015

Seeing God

Seeing God in it all: a recent topic at Tuesday Night Sunday School. This was my contribution... 

The reality of my life is this: I live every moment of every day in pain. My legs don't work properly. My arms don't work properly. In fact. most of my body doesn't work properly. I'm exhausted. I never get enough sleep. My house is falling apart and I don't have money to fix it. I'd love to get a job, but my health is so unpredictable, I can't. It's even difficult to put food on the table some months. It seems like all of the things I love to do are being taken away from me. My health is getting worse. I endure test after test with no answers. Taken off the medication that keeps my body from attacking itself, I can only look forward to losing the ability to move every part of my body little by little. I live in pain and worry and anxiety over my future.


The reality of my life is this: I have been given an extraordinary gift. I wake up each morning. I breathe. I eat. I love, I laugh. I'm alive. God has blessed me with five wonderful children, a husband who loves me, parents who are amazingly loving and supportive, friends who are there when I need them, and a God who forgives my doubt and anger when they sometimes overrule my faith. I can walk. Not well, but I appreciate every step. I have fabulously decorated crutches and a quirky yet awesome wheelchair that help me not just get places, but live life to the fullest. I can talk ... sometimes having a difficult time finding the right words, or remembering my own children's names, but that makes for some hilarious and memorable moments. I can lend my Spirit-given talents to church, to our homeschooling community, and to other endeavors. I have a team of doctors working to figure out my medical issues and get me the treatment I need.  I live in gratitude for the opportunity to slow down, for God opening my eyes to focus on what's really important in life, and to enjoy every single moment I can. 

It is only through life's trials that I've come to truly appreciate and love life. I know that God is with me every step of my journey and has blessed me beyond measure.

When life isn't going well, take a step back and look for God. He may just show up in some surprising ways. 

Tuesday, January 13, 2015

I Love You On Purpose

Him: "I love you on purpose."    
 Me: "I love you completely by accident even though I tried really hard not to and it's all your fault."

I've loved him for over half my life, even though I tried not to in the beginning.

I didn't want a boyfriend. I didn't want to be in love. I just wanted to get through life.  Why did he have to screw all that up?  I tried with every fiber of my being to not like him, to not love him. But he gave me no choice. Why did he have to be so darn cute and loveable and compassionate and loving and awesome and care so much about me during a time I didn't care very much about myself? 

I tried so hard not to love him, but God had other plans. God knew much better than I whom I needed in my life. God put this man in my path and was patient with me as I tried everything to not love him. 

Words aren't enough to express what a blessing my husband has been to me as we've Walked Together these past twenty-one-ish years. Nineteen years old when we started dating, nineteen years married today. 

I had big plans for our nineteenth anniversary this year. I was going to make and put together some awesome stuff that would have made his day. But it just didn't happen. My health is not so good lately. I have zero energy for anything beyond was is essential to get through the day. I've tried to not be sick and be awesome instead, but it just hasn't worked. But that's ok. My husband understands. That's' one of the things that's amazing about him - what matters to him is the nineteen years, not the celebration. 

Since we can't celebrate with a bottle of Glen McKenna 30, one thing I can do is this:

Jim/Alex/my Honey,  
Thank you for loving me no matter what I throw (literally and figuratively) at you. Thank you for handling my alphabet soup of diagnoses with love, compassion, and grace. Thank you for loving our children and teaching them all sorts of useful and not so useful things. Thank you for working so hard at work and at home and for taking such good care of me. Happy 19th Anniversary! I love you so very much!
I'm so glad you're my labenslanger schicksalsschatz. 
Always Remember... 
P.S. Next year is TWENTY years. We need to do something legen .... wait for it...

(Text above is Helvetica, except for the part at the top which is Helvetica Bold. This is Times New Roman. True story.)

Monday, January 12, 2015

Coming Out

This post has been a long time coming. I started it over a year ago and have been putting it off because, well, I'm not sure why. A recent post by a friend on facebook seems to have tipped the scales in my mind and I feel now is the time to just lay it all out. 

I've been like this all my life. I've always known. Up to this point, I didn't feel like I needed to share this with everyone, as to some it's always been obvious, and others just assumed. I've never been ashamed or really felt any different from anyone else, but think now might be the time to say something. 

But before I do, I just can't get this frustration, this heartbreak to loosen its grip. When my friend posted something like this, he was talking about the fact that he's gay. It was not news to me, even though he never directly said anything to me. His words, though, got me thinking. Why is it that people have to "come out" as gay and not "come out" as straight? Why do some people need to come out as male or female just because their outward appearance doesn't match who they are inside? Why does "different" need to be announced rather than "different" being just that - a difference. We are all different. 

I guess it all comes down to assumptions. We assume people are straight unless they tell us otherwise. We assume that if a person looks like a man, he's a man, or looks like a woman, she's a woman. We assume a lot of things that might not necessarily be true. Can't we just assume that each person is unique and get to know that person for who they are, not how they appear or how we think they should be?

As a parent, I hear what if questions a lot. "What if one of your kids is gay?" seems to be a popular one. What if one or more of my kids is gay? I won't love them any differently, any more, or any less. One of my children has expressed that their brain has yet to decide if he's a boy or she's a girl. My response? "Wonderful! It's great that you have all the time in the world to see what your brain decides." This child will still be the same child no matter what. 

So, back to what I was saying. I've been like this all my life. People I've recently met might not realize this about me. These days it's not really evident when you look at me. It is Winter, after all. You see, I have elbows. I thought you should know. They're not very evident under the layers of clothing I've been wearing to keep me warm, but they're there. Two of 'em. Thanks for understanding. 

As I commented to my friend: 
Praying for a time when being gay isn't something that needs to be announced or explained or grappled with any more than being straight or human or having elbows.

I'm also praying that being gay will someday soon be as acceptable to all people as having elbows is. And elbows are weird (have you ever looked really closely at an elbow?), so really, being gay is no big deal.