Tag: prayer

May was lupus awareness month.

I realize this is now June, but I want to share a little of my autoimmune journey and what God has shown me along the way.

I won’t give you all the sordid details of the journey to diagnosis.

Just know that I have been diagnosed with lupus and antisyntethase syndrome (A.S.S. for short. Yes. I think this is funny). To paraphrase,  lupus attacks my organs whenever it pleases. A.S.S.  attacks my muscles as it pleases. Both lupus and A.S.S. love to play in my lungs.

Before being diagnosed, I was fulfilling a long-term desire to complete law school. It was during finals of my 2L year when I was first diagnosed with lupus. I tried to push through anyway.

For me, this was a TERRIBLE idea. Several ER visits later, I realized I could not maintain legal studies. I went from cramming for finals to being homebound for the next three years.

I looked okay on the outside. Inside? Several of my organs were having a party and creating chaos. Breathing was becoming a real struggle.

It was during my many months/years in bed that I learned to fail at many things.

Think I’ll check the mail..oops. That was a bad idea…too much sun..flaring…back to bed. Think I’ll do some dishes…oops…I’m exhausted..I can’t breathe. Back to bed.

I learned to fail well. To truly accept failure as a new way of learning what i could and could not do.

It took some grieving.

I learned to say goodbye to my lawyering dreams, to say goodbye to ever returning to my previous work with the special needs community. I learned to accept the reality that I could not be relied upon to complete obligations.

It was during this season of being homebound, that I learned to lean deeply into prayer.

That first summer, after being mostly stuck in bed for what seemed like an eternity, I kept asking God, “What is happening here? I thought I was going to be a voice for those who could not advocate for themselves. That I would love my neighbor by standing up for them when they could not.”

I received no answer.

I slept a lot.

When I was awake, I prayed. Truth was, praying was the only thing I had strength to do.

 I prayed for understanding. I slept.   I prayed for clarity. I slept.  I prayed for my church family. I slept. I prayed for our neighbors. I slept.  I prayed for my children. I slept.

 I began taking prayer requests from others. I prayed. I slept.

Mathew 11:28-30
²⁸ “Come to me, all you who are weary and burdened, and I will give you rest. ²⁹ Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. ³⁰ For my yoke is easy and my burden is light.”

I would watch Hot Stuff work several jobs and donate plasma to offset my medical expenses, while I prayed and slept.

I felt utterly useless. I felt guilty.  I was like “God, you have GOT to be kidding me.”

 When I apologized to Hot Stuff for not being to contribute to our household in any tangible way, he would just grin and say “Sweetie, you would do the same for me.”

He was right. I would. But I still felt bad for him. I wanted to ease his burden and all I could do was pray. I know there is value in prayer, but sometimes it is easy to forget that value.

I wanted to be of tangible value. Value that could be seen.

God had other plans. I needed to learn the value in just being. The value in praying silently.

I had to learn to receive Tracey’s giving sacrifices of time and energy, gracefully. To be honest, I still struggle with this.

This homebound, stuck-in-bed season, was a huge crash course on learning to be dependent on others.

I began thinking about my years working at a day-hab for adults and children with developmental and emotional delays. Clients who were sometimes completely paralyzed, but still could laugh while you changed their diaper. Clients who had every reason to be angry, depressed, and constantly anxious, but who had developed a quiet resilience and love of small things.

Maybe I had been gifted those years with these precious souls to prepare me for lupus life now.

After the end of the first 6 months of prayer, I realized my life ambitions had shifted from being an immigration lawyer to simply having the graceful humility and ability to listen and communicate with my heart. My previous dayhab clients, were my new heroes.

I was led to Galatians 5:22-23.

 22 But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 23 gentleness and self-control. Against such things there is no law.

I spent the next three years, dwelling on the freedom this scripture brings.

 I didn’t have to be physically fit. I didn’t have to contribute to my household. I didn’t have to be socially active.

 I may desire these things…but I could still love and love deeply.

 I could find joy in small things.

 I was getting a CRASH COURSE in forbearance…as was Hot Stuff.

I could spend my life turning to God to cultivate kindness, goodness and faithfulness within my heart.

 I could learn to be gentle towards myself as well as others.

Everyone knows I could benefit from cultivating self-control. Yeah. I still need lots of help from God on this one. I’m a work in progress😊

As I became slowly healthier, I began writing. All. The. Time.

I started taking my writing more seriously.  I began some long-term writing projects. Works that are still in process.

Somewhere along the line, my doctors got me sorted with a nice cocktail of medications and God graced me with a little autoimmune reprieve.

 I don’t know how long this little auto-immune reprieve will last. I still have a team of specialists I see regularly. I still have a ridiculous amount of lab work done on an ongoing basis. I can still feel like I’m starting a cold on Thursday and have bronchitis or pneumonia on Saturday. I still get easily fatigued. I never know what my energy level will be.

But I will savor this season while I can.

I wish I could say my prayer life is just as constant, deep and active as it was when I was homebound. But it’s just different. I think that is okay.

I am grateful for these “bonus years” where I get to teach, and write, and actively engage with family and friends.

I hope I never lose sight of the tings God has shown me.

This morning I am sitting on my front porch.

Next to me is a glass table holding a plant I cannot name, a paperback romance, my cell phone, and a glass of tea. My dog barks at a neighborhood boy on a bicycle. I can hear birds chirping everywhere. I smell Fabuloso floor cleaner, Mr. Clean, and a mix of wet dirt and just rained, morning air.

 I spent the morning cleaning and now I can just chill on my porch for the rest of the day.

Spring Break is a beautiful thing.

I am just a tad chilly in my jeans, t-shirt and my flannel shirt that is pretending to be a jacket.

 My pretend flannel jacket/shirt that has two pairs of glasses in my pocket. One pair for reading, one for seeing, and my computer glasses are currently on the top of my head.

Wow. Three pairs of glasses. Each one assisting me to see different parts of the world more clearly.  Unfortunately, none of these help me see my music during orchestra rehearsals. Do I (gasp) need a fourth pair for seeing sheet music?

Last rehearsal, I kept leaning into my stand partner’s arm to see the music. You know, the arm that is moving up and down the neck of the violin to play notes. After apologizing for the gazillionth time, my stand partner assured me that he had difficulty seeing also. I mean look, he says the notes are extra tiny on this piece.(I think he was being polite) He assured me he was bringing a light to place on our music stand next rehearsal.

The violinist behind me just laughed. Forget it. Nicole, you just need your own stand with a light on your head.  Gotta love the support of fellow musicians.

So, yes. A visit to the optometrist to get orchestra glasses is in order.

I am telling you about my declining vision, because this Lent I chose to give up coveting. I want to see clearer. To see what my world looks like if I become more aware of the things, circumstances, situations I covet.

I feel like I am spending WAAY too much time on Amazon. I am trying to buy the life I want instead of just living it. I spend too much time on Zillow..wondering what it would be like to have a home of our own, or another place to rent..

Relationships? I covet what appear to be healthy/authentic/enjoyable adult-children’s relationships that some of my friends have cultivated. Relationships where they see their kids and grandkids all the time.

 As I realize the circumstances I am putting as larger than God, I feel covetous. The circumstances in which I am unappreciative. I feel guilty. I feel ungrateful. This realization spiralsl into shame…which leads to more retail therapy…back to Amazon, back to Zillow. How do I buy the life I desire?

When this year’s lenten season started, I was like Okay, God…help me see all the areas I am covetous. Uhm..and gently please.

I wonder what covetousness is, exactly.

I looked up definitions on Google. So many variations..from doing something you shouldn’t to obtain an object to, what I think I was struggling with. Turning your desire for some thing, circumstance, or situation to change that the desire becomes a false idol. Covetousness.

That God is not enough.

And there it was. My new lens to see through. Did I really believe that God is not enough?

Did I believe that God wasn’t enough because I had some children that don’t keep in touch as much as I would like? Children that are NOT afraid to tell me what is really going on. What their opinions are, when they are stressed, when they are excited. Children who aren’t afraid to say Mom, I’m going to be really busy, so it will be awhile before we can talk.

I read an article from a mom who saw her children every week and had no idea what was going on with them. I realized that my weekly text thread, and periodic visits were very real. I was wanting quantity over quality.

I used to pray that my own children would never be afraid to tell me what they really thought. I realize this prayer has been answered. I just don’t always like what I hear.

How many other answered prayers am I living?

My home, the one I keep complaining about. The home with no central air or heat. The home with slanted floors and electrical outlets that don’t work. Hot Stuff and I prayed for this home. Why? Because we wanted space for our family and friends. AND because I LOVE this front porch!

This neighborhood. The one with a cat colony(ugh), and airplanes flying overhead all the time.

I prayed to live in this neighborhood years before I moved here. At the time I was living in a small, Tx. hill-country town. I wanted desperately to move back to the city in which I grew up. I missed living in a city.

 To know what a healthy, real, loving and kind marriage is. To know what it is like to be married to a best friend. Answered prayer.

The weirdo dog that I get irritated with? An answered prayer

 A small prayer. Hey God, I wonder what it’s like to have a cat…

That week, the weirdo dog, led us to a stranded kitten. There had been a crazy storm the night before. The dog led us to a kitten, stranded in a puddle.

A kitten that Hot Stuff never wanted and now can’t stand to leave at home.

Wanna go to dinner? I’ll ask Hot Stuff on the way home from work.

Sweetie…the pets. The cat’s gonna be mad. I’ll cook dinner.

Yup. The cat that now rules our house.

 An answered prayer.

My job? I wonder what it would be like to work at the zoo?   

What do you know, lupus and all. Makes no sense, but I get a job with the zoo. Still in education, but the zoo none-the-less. Answered prayer.

Hot Stuff’s job as a pool tech. Albinism and all, still makes no sense. My husband applied on a whim. Turned out, his (now) supervisor, is an old friend. Answered prayer.

The first day of my Spring Break, Hot Stuff and his friends practiced music at our house.

The house we prayed for was filled with praise music. A house filled with laughter, seriousness, music and deep friendship.

God has given me a new lens to look through this Lent.

I hope I don’t lose sight of this new clarity.

It is 20ish degrees outside in my South Texas City. The streets are covered in ice.

I wake up super early this morning to spend some time with God.

Family events, personal events, national events. All bitter sweet. Bitter because there is so much heartbreak. Sweet because, well, there is love mixed into all of it.

I have a new grand child. My heart is pierced with a painful love. I am so in love, yet family estrangements make it difficult for me to be a part of her life.

I think of all the children at work.. I wonder, how do I protect my students, my neighbors, my family? I research what legal safeguards are still in place.

I watch the political violence in Minneapolis.

 I am mortified.

I simply cannot fathom any way/time/circumstance in which  political violence against the vulnerable is considered acceptable. Yet I have seen this violence played out my entire life. In Timisoara, Romania as a child, in Los Angeles, CA, US in my twenties, all along our Southern Borders for the past decade and a half..

I wish, so very much, that we would learn from our mistakes in history.

I pray.

“Dear One (for this is how I refer to God in my prayer journals) What do I do with this? What is my part? How do I stay involved with a grandchild with whom I have no access? How do I cultivate unity in my family? In my neighborhood? How do I stay true to my social conscience and to you?”

I turn to Mathew 6:9-13   I read, and re-read the Lord’s prayer.

I ask..”How do I really walk this out?”

So here it is..my super personalized Lord’s Prayer. Paraphrased by…me.

 Our father who art in heaven   
Dear One  in heaven

Hallowed be thy name
Please reveal yourself to me and my family, so we may all draw closer in relationship to you, each other and the world around us.

Your kingdom come. Your will be done, on earth as it is in heaven.
Help me love my neighbor and welcome the stranger. Help me advocate for the vulnerable,  act mercifully and walk humbly today.

Give us this day our daily bread.
Thank you for my literal “bread” of breakfast tacos this morning and my spiritual “bread” of life, love and laughter today.

Forgive us our trespasses
  Please open my eyes to those I have hurt. Give me wisdom to ask for forgiveness and make amends.

As we forgive those who have trespassed against us
Please remove seeds of bitterness or resentment I have in my heart to those who continue to hurt me, intentionally or not. Help me in my unforgiveness.

Lead us not into temptation
Please keep me away from amazon…  Please help me not to desire things, people or circumstances that are not for me. Help me accept and celebrate my life as it is right now.

Deliver us from evil
Please give me the wisdom and understanding to navigate malicious intent.

Amen.

I love you.