Lonely, Sick, Afraid, Worn Down, and Content

I begin to ask myself...am I doing something wrong if God is not answering my prayers? 

I've hit the realization that my relationship with God has changed. 

I am praying for results. Not a relationship. I'm no longer sharing my thoughts. I just pray a list of needs. What I think will make my life easier. What will make me happy.

Could I be content if our finances will always be tight, if I have another flare?

Could I choose contentment? Am I willing?

Choosing contentment means I accept the situation. Accepting the reality of having 3 major illnesses in our family. 

Is my relationship with God worth letting go of what I have no control over? I realize I am only asking God to just do something. Fix my problems. Fix me.

But God is not just a problem fixer. He wants to fix my heart.

He wants to heal the hurt and the pain in my heart caused by the struggle my children and I face with chronic illness. 

I've seen God answer prayers of physical healing. But to heal my heart? I've never asked.

I can accept God will know when and how to answer my prayers, to know he will work out the details. I believe in never giving up in asking for the desires he has placed on my heart and mind. 

But can I just be myself with him. When did I forget that I can be lonely, afraid, or worn down in his presence? When did I begin to think his answers to my prayers are a measure of how much he loves me?

It happens to quickly. I avert my eyes momentarily on what needs to be fixed, not Jesus, the one who has the power to fix my circumstances, body, and heart.  

My prayers will be answered. It will not be contingent on how often I ask or how many mistakes I continue to make. They will be answered because my God loves me (lonely, sick, afraid, worn down, and content).

...let us lay aside every weight and the sin that so easily ensnares us. Let us run with endurance the race that lies before us, keeping our eyes on Jesus, the source and perfecter of our faith, who for the joy that lay before Him endured a cross and despised the shame and has sat down at the right hand of God’s throne. 

Hebrews 12:1-2 HCSB

Seeking to remember.

It might seem there is no good to be found in the struggle and each day there is a new one. 

We wonder when will this end.

How do we get through this moment?

And when we finally see a glimpse of hope? Another door closes...relationships change...a new illness...a new challenge.

It's enough to make you want to scream I give up!

Moments seem dark while we're trying to grasp the hope of God's promises. 

I was asked by a good friend how my day was going. I answered "Can Jesus just come back now?" 

Maybe the Israelites felt the same way towards God during the 40 years in the desert.

Mana and quail...Again? Really God.

God's not here. He's taking to long. Let's cast our own idol. Something we can touch and see. 

I want to see answers now. I want to know it will all work out. I want to know I am following God's will. I want to hold on to hope.

I want to remember...I've been here before. Remember those years after my sister died, my own diagnosis, learning my children will face life long illnesses. I want to remember because no matter how difficult those moments were I survived....and....I survived stronger.

Stronger perseverence.

Stronger hope.

Stronger faith.

So, I have been here before. And I will open my eyes and look for the hope, just as David writes.

I am certain that I will see the Lord’s goodness in the land of the living. Wait for the Lord; be strong and courageous. Wait for the Lord. Psalms 27:13-14 HCSB

Maybe His goodness is seen in the moment we find the physical strength to finish a task, our teens are laughing momentarily together, or maybe watching the rain from our beds while we are ill.

But we only see when we seek and remember.

Be strong.

Be courageous.

Open our eyes to the Lord's goodness.

I Enjoy You

Another day of homeschooling...not sure who is getting the most out of the lessons today.

What I thought would be a great discussion became a "lecture". Now, I never knew a lecture was two people discussing a concept or subject. In my mind, a lecture is one person sharing information on their opinions of a concept or subject without discussion. According to our son with Aspergers, if I am speaking it's considered a lecture. 

Looks like I am getting the lesson today...

We have been using The Giver by Lois Lowry for his language arts. As we've been reading and lecturing/discussing each chapter, I've learned how differently our son perceives the world. We are near the end of the book. Jonas, the protagonist, is given the memory of love. In Jonas's society an expression of love would be inappropriate. A better choice is I enjoy you or I am proud of your accomplishments. A more specific description of how you feel about someone.

Here is where my lesson and "lecture" began. I ask a question. How do you describe love? His answer. I don't understand. What do you mean? I try another approach. How do you know we love you? He shrugs his shoulders....My heart breaks a little...I change my approach again. Do you understand if I say I enjoy being with you? Yes, it means you like being with me.

And here is where I probably turn our discussion into a lecture. I want him to understand love. I don't want him to miss understanding the most powerful gift we are given...to love one another. I try to give him a new perspective. If you enjoy watching videos, do you want to do it as much as you can? Do you think about it when you're not? Do you research new videos to watch? Does it make you sad when you don't have screen privileges? Yes.

If you love someone you want to be with them as much as you can. You think about them when they're not with you. You find new ways to make them happy. When you can't be with them you're sad. Do you understand? 

It's 4:30, you said we'd be done at 4:30 and I could watch my video, can I watch my video?

I enjoy you. He smiles and shakes his head. 

I'll take it.

Like Two Vultures

I'd like to say I am compliant and normally a strict rule follower. Unless we're playing Monopoly....I'm no longer allowed to be the bank because my kids know I cheat. I just can't help it...But in most every thing else I follow the rules.

When I was first diagnosed with Lupus I was warned to stay completely out of the sun, use sunscreen, and wear a hat anytime I leave the house. I did not like that warning and decided, like not taking extra money from the bank in Monopoly, it wasn't a rule that applied to me. 

One of the main cause of early death for Lupus patients now is non-compliance. 25 years ago you were expected to live only 5 years and die from kidney failure, heart disease, or infection. We may not have a cure but treatments have definitely improved our life expectancy.

I was really surprised to hear non-compliance was so rampant among patients. Looking back at my own history, even this past week, I can see non-compliance making an impact on how I feel. I remember being 19 and going to the tanning bed. There was even a form that asked if you had Lupus. I always checked no. What's 15 minutes in a tanning bed going to do to me? There is nothing like a Lupus flare with kidney disease to give you a wake up call. I was no longer worried about being pale, now I worried all my hair would fall out, how to lose the 60 pounds I gained  in 3 months from steroids, or if I'd live to my 20th birthday. Just last week I made a quick trip to the grocery store. No sunblock. No hat. I was in bed by 8 and still did not feel well the next day. So..um...yeah...I may have a thing with non-compliance.

When I was young, even though I had a sister who lost her battle with Lupus after 5 years, I just didn't think I would become that ill. And after that flare from the tanning beds, I thought I would take better care of myself...But it's hard...Really hard to be compliant when you live with an illness every day. 

So now I'm experienced (older) and we have a daughter with Type 1 Diabetes. Both of us fighting a daily battle with illness where non-compliance is a dangerous option. I wonder what kind of example I am setting when I forget to take my meds or just don't want to wear a stupid hat. It's not a good one.

A few months back our daughter's A1c (average blood sugar) was almost 13. 6-7 is a healthy average. It came down to non-compliance. She had everything she needed to keep her average down. But she was tired of doing it day after day. And I understood, but I didn't want to see her suffer. Just like my husband and kids don't want to see me suffer.

It was time for a new plan to help her, encourage her, or as Jim called it we were like two vultures on her, but it made a difference and we have a ways to go but she's in the single digits!

Sunny and I share a lesson in grace and forgiveness. Having health issues is frustrating, overwhelming, and really just plain sucks some days. But it's the life we were called to live and we have to do the best we can. This includes making mistakes, but then giving yourself grace, and forgiveness. Then moving on and allowing it to be a lesson in compliance and perseverance. 

And sometimes you may need a vulture to be after you.

Changing My Response

Some days are good. Some days are ok. Some days are bad. Then some days are so bad you are left weak.

How I would love to tell you I was strong...that I didn't cry...that I found hope. In the moment it is hard to stand strong, to breathe. I am left weak.

Sometimes you have to hold it together because you can't fall apart now. Not in the moment. You have to stand strong...even when your legs go weak...your breath is frozen...your heart aches.  

You will find the will to stand, the patience, and strength. You will breathe. 

You will remember this moment will pass. 

You will not give up. You will hope. 

You know your situation isn't changing. Only how you respond can change.

Our normal is still our normal. Our daughter is still diabetic. Our son still has Aspergers. I still have Lupus. Our medical bills are still not paid. Our hope to adopt still unfulfilled.

No matter what you are facing you can find hope. Hope in the illness, your child's pain, financial burdens, loss. Hope can be found. 

I find Hope in saying yes I can survive this, even though deep down I want to say I give up. I have to reach even deeper and ask for the strength and patience I don't have. I have to call out.

The situation has not changed but I am changing my response. Hope. I will tell my self keep digging deeper, fight the urge to give up. Humble myself and realize I can't always find hope on my own. Remind myself God has never let me down. When I can't find the words nor the strength to speak, He hears. He restores my hope.

Getting Uncomfortable

Its been awhile.

Crazy.

New.

A blessing.

It's been two months since we've uprooted our family and moved back to Indiana. We were tied to our little town of Bryan, OH, church, and friends. I'd say uprooted is a good choice for describing how we feel, especially a teenage girl and Aspergers boy.

They have done better than I at times. And I love change. Just ask Jim how many times he came home from work and found the house rearranged. Lately, change has meant fear. 

To overcome fear I often list how God has blessed me. 

So here it goes...

As a homeschooling family it's been great to have Jim on 2nd shift.

We've found a new home church. Our last move took 2 years.

Doctors appointments are no longer a full day event. It's a quick 30 minute drive. And there just happens to be a Starbucks on the way.

Jim's new insurance is amazing.  I held off ordering Sunny's supplies last month because we just couldn't squeeze out the $300 a month co pay only to find out our new insurance covers them 100%! And yesterday Elliott's heart echo, which is to to be the first of many, covered 100%. I was a little excited...I may have yelped...Elliott may have been embarrassed.

Our home is a rental that is bigger than anywhere we've lived. Old, capped off gas light fixture, old. Lots of character, translated needs some work. Best of all our wonderful landlord, and I mean the landlord is amazing, didn't even blink an eye when we asked about our zoo moving in with us. 3 dogs, 3 cats, 2 fish, 1 iguana. Didn't blink. Ok, maybe he was shocked. Normally, the look we get.

Jim has reconnected with many friends. I've run into family at the grocery store. With a quick drive I can see my parents or even help drive them for doctor appointments. My brother can be seen in a quick day trip. Jim's brother, 15 minutes. We've never lived this close to family.

Grandpa...Jim's sweet 90 year old grandpa. The best man in our wedding. Just down the street. Jim takes him shopping every Tuesday, off like a herd of turtles. Grandpa's words. Thursdsay's I cook lunch and we eat there together and look through Grandpa's pictures and his room full of...well if you need it it's probably in there.

Growth...nothing helps you grow like jumping into a new environment. Getting uncomfortable. Nothing makes me more uncomfortable as making new friends. It makes me vulnerable. Will they understand when I cancel at the last minute because my body's not cooperating, my son is having a bad day, my daughter's blood sugar is sky high. Having an illness doesn't make you very reliable. I'm afraid. I'm an introvert. I forget my own good qualities I can share with others. So I've been giving myself the speech I've been giving my kids. Friends are important. We are meant to do life together. Each new friendship stetches us a new direction, blesses us in a new way. My friends from Cincinnati, I love them like sisters. Even though we've moved 10 years ago, we reconnect every summer. In Bryan, I was hesitant to make friends. I had one bad experience at the library's story time and I allowed it to stop me. I didn't make true friends until I was humbled by a Lupus flare. These women, who I didn't even try to get to know, came to our home and served my family. Primarily, they opened my heart to amazing friendships. Friendships that have grown over bible studies, meals shared, serving together. So how can I say yes to fear and no to finding the friendships for this season in my life. If they're anything like the friends I've found, I am going to be blessed. 

Yes...blessed.

I Am Thankful

Thanksgiving is a time to reflect on the many ways we are blessed. It is also the time of year we lost my sister to her battle with lupus. She was and still is a blessing to me, I'm thankful for the many lessons she taught me.

....hope. You remind me to find hope even when my physical pain seems unbearable.

...stubbornness. You where the most stubborn person I've known. Stubbornness can also be powerful in fighting for those you love.

...courage. You taught me to not be afraid of new opportunities. Forcing me to go to homecoming, to ride in the front of roller coasters. You taught me to find excitement in new things.

...love. It's unconditional.

....laughter. It's okay to laugh when your sick, it will actually make you feel better.

...do overs. When you make mistakes just start over. 

...time is short. Make the best of your life you don't know how much time you have. 

...strength. You wrote a paper about your little sister as your hero because she had strength she did not know she had. When the days are hard and the pain is too much I remember that I am someone who is strong and can continue to fight.

...faith. You shared Gods story of love and forgiveness with me. Reminding me that no matter when or where I need him, he's there and he loves me.

In the 18 years you were here, you made the best of your time. You left us all with a little piece of yourself, you made mistakes, you loved, you inspired. 

I am thankful.