What we fight for

In a time when each month has several "Awareness" labels, it's not easy to get awareness. We are all affected by something whether it is our own struggle or a loved ones. To be honest I really hate "awareness" months. When your family is given a diagnosis you are going to live with awareness for the rest of your life. For my parents and friends with cancer, remission may have been attained but I am well aware of the emotions tied to their diagnosis and struggles. Maybe it's just me but awareness almost seems as if its a competition. Who's walk will have the highest attendance? Who's the biggest fundraiser? Yes, awareness is important but why do I have to walk or raise $100 for a T-Shirt? Why do I have to be rewarded?  Why don't we just help each other out?  What if we could just join together and celebrate and encourage those who are struggling with Cancer, Diabetes, Autism, MS, Lupus, Heart Disease, Alzheimers, and we all know this list can go on for pages.  Just share our stories and educate those who do not know their lives too are being affected. So many people are struggling, families are devastated by medical bills, hearts are broken from those who's fight ended. But what I think gets lost in these "awareness" months are the stories. Why these people need celebration and not just another walk. They need to know they're not alone, their lives are not a burden, that if today they got out of bed and made it to the bathroom alone or made eye contact their lives are Facebook worthy.
A quick note about walks and awareness events. They're not all bad. I love being able to support friends and families and seeing a community come together to support a family. My issue rests more with "corporate" events. We have been apart of one for diabetes in Fort Wayne and the walk raises money but offers no support for the families in this area. Also I thinks it's sad that many patients can't participate in a typical walk.  

So in honor of Lupus Awarness month. I am going to educate you a little bit about Lupus while celebrating two sisters with Lupus.

My sister, Brandi, and I.

She was 13 and I was 15 at diagnosis.  Most people are diagnosed in their childbearing years. Siblings rarely are diagnosed. But hey, we're not normal.  Our Lupus started out with the same basic symptoms. A rash across our face. The butterfly rash ~ looks like you've been in the sun. Anemia. Fever. Hair loss. Mouth and nasal sores. Fatigue. Joint Pain. Those are just a few of the 11 criteria for diagnosing Lupus. (Unfortunately there is no basic test for Lupus. A Lupus diagnosis is based on several blood tests along with meeting at least 4 of  the 11 criteria symptoms.) I didn't even show positive for one of the major blood tests used in diagnosis.  So I was told I was borderline. Later to be told by a rheumatologist (a doctor who specializes in Lupus) that you can't have borderline Lupus, it's like being pregnant either you are or you aren't. But Lupus is not just those 11 criteria symptoms. It can be discoid (skin) or systemic (entire body).  In my sister it manifested in her thyroid, lungs, kidneys, and liver. My Lupus manifests as vasculitis in my skin and colon, lungs, kidney, central nervous system, and severe photosensitivity. I now have the pleasure of embarrassing my children by carrying an umbrella on a beautiful sunny day and wearing a hat wherever I go.

When it comes to treating Lupus treatment plans can be just as varied as the manifestations.  Sadly there are very few Lupus specific treatments. Along with  a lack of treatments there are few doctors who treat Lupus. This has changed over the years. Brandi's Lupus battle and mine are an example of how Lupus can be treated. At her diagnosis she was given five years to live, told to stay out of the sun, and each hospital stay was used to get her symptoms under control, not fight the Lupus. When I was diagnosed 8 years later, I was given Plaquanil (a drug used to fight Malaria) an anti-inflammatory medication that I will need to take the rest of my life, told to stay out of the sun, and have blood work every 3 months to monitor the Lupus and its affects on my organs.

Five years. 

That was all our family was given with Brandi. We lost her and her unborn baby girl Krystina. Six months into her pregnancy her body was taken over by infection after a bought of bronchitis, her kidneys and liver too damaged.There would be no doctors educated in watching for organ involvement, no prednisone to slow kidney disease, no chemotherapy to stop the Lupus from attacking her body and taking her life. Even though she fought with all she had, she had no fighting chance. She was 18. Ten years before the average patient is even diagnosed.
             

Fight.

One thing I was taught through her death it was to fight. Give my life a fighting chance until my last breath, fight for patients to receive a diagnosis, fight for their voices to be heard.

Because of Lupus complications many like my sister have lost their fight. Many like me suffer every day never knowing when we wake if our bodies will cooperate. Families and friends watch them suffer knowing they are helpless and nothing in this life will bring complete healing, This is why we have awareness we want to have our voices heard.  We want to see less die from complications. We want to know there will be a break from pain and fatigue.

I would really love to sit outside and feel the sun...

Okay. I really tried to be positive but living with Lupus or any illness, or watching our kids struggle with special needs is sad. And hard work. And sometimes lonely. But there are good moments and that is what we fight for.

Prosper in Captivity

My body is warning me. Symptoms of Lupus starting to slow me down, my blood work still looks good. It's time to be vigilant, rest, and let my body fight. 

It's a fight I'm really tired of. I have plans, responsibilities. Lupus doesn't care. It takes me captive.

There is one place I go when I'm tired of fighting, need reassurance, and need to surrender. There is one place where surrender gives me the strength to prosper even in captivity.

"For I know the plans I have for you” — this is the Lord’s declaration — “plans for your welfare, not for disaster, to give you a future and a hope."  - Jeremiah 29:11

The Israelites have been exiled in Babylon. They have been taken captive. We may not find ourselves in a literal state of captivity as the Israelites but we can be held captive by the struggles we face.

“Build houses and live in them. Plant gardens and eat their produce...Multiply there; do not decrease. Seek the welfare of the city I have deported you to. Pray to the Lord on its behalf, for when it has prosperity, you will prosper.”  -  Jeremiah 29:5-7

Keep moving...don't give up...pray...prosper...it's not the end. 

“For this is what the Lord says: “When 70 years for Babylon are complete, I will attend to you and will confirm My promise concerning you to restore you to this place.”

  -  Jeremiah 29:10

So how do I prosper when my body has taken me captive.

“You will seek Me and find Me when you search for Me with all your heart. I will be found by you” — this is the Lord’s declaration — “and I will restore you from your captivity..."  -  Jeremiah 29:13-14 

I am held captive but God knows my story. He knows how far I can be pushed, when it's time to rest. He knows when I will be restored from a flare. He reminds me this temporary captivity is only a portion of my story. 

I will prosper in captivity. Today a short walk. I grab my shoes and struggle to put them on. I notice the bottoms are stained red. Georgia clay from miles I walked while serving others just months ago. A break from my captivity.

And when the time is right He will restore me once again. 

An Honest Christmas Letter

Dear friends and family,

Merry Christmas!

Well it's been another year and we've been stretched, challenged, and blessed. We hope you've experienced a year with challenges and blessings also!

During the winter we enjoyed Netflix. The weather did a number on Jenna's Lupus and afternoon rest times became mandatory. Sunny and Jenna bonded over Gilmore Girls and yes they made it through the whole series. Many tears were shed during the finale and we were concerned about what we would do without Lorelai and Rory. Elliott spent his time in his "office" watching videos about playing video games and mimicking their crying. Jim worked.

The torrential rains held us hostage for most of the spring and we know how much water our basement can hold. Maybe an indoor swimming pool is on our future. In April Sunny and Jenna went on a mission trip to Atlanta. We had hoped to go to Haiti but doctors banned us from leaving the country. It was AMAZING! It was like we were normal even though Jenna was covered in sun protection and Sunny's blood sugar dropped  low on a walking day. We were actually prepared..snacks were packed. The emotional part of our trip hit us the hardest. The smiles and the gratitude shown through the eyes of those in need broke us and blessed us. We are that needy family. We can't count how many meals have been prepared or how many times our kids were dropped off to be cared for so we could stay with a child or Jenna in the hospital. We are that family who can offer smiles and gratitude through their eyes. We were blessed to feel it from the other side. And it was AMAZING!

Then summer was normal. Well...normal for us. There were moments when we looked like that Dr. Phil family. You know, the one with the out of control teen...parents have lost control. We all think that...But in reality mom was gone for a week and that teen could not deal. Jim and Jenna took a mandatory weekend with friends. This is how we survive a Type 1 Diabetic teen and an Aspergers teen. This year our trip was cut short. Ending with a sick kid. But we can break camp in twenty minutes AND  the infection was called caught before the blood sugar spiked AND no hospital stay! Our summer ended with our annual  Acts 2:42 camping trip. Although we moved away 10 years ago it's always like it's been only days. It was a weekend of great fellowship, food, and prayer. And we didn't even have to set a new record to break camp!

Over the summer we made the decision to stop homeschooling. (Jenna needed a job. Medical bills hadn't paid themselves and she was hitting remission.)  We have been blessed with the special needs program at the schools both kids had an IEP set up. We've had to tweak them a bit but we'd say this semester was a success. Grades are excellent and we only had to change one class due to melt downs. Sunny made the show choir and Elliott begged to play football. We hadn't let him play since his Ehlers-Danlos diagnosis. Football seemed a little too risky. But he LOVES football. So we saw a specialist, we expected them to say, FOOTBALL, ARE YOU CRAZY!? But instead said if his EKG showed no heart issues and he wants to, let him. Yes, he might get hurt, but will it improve the quality of his life? Thanks doctor! So we said yes to football. When he came off the field that smile on his face made it worth the risk. 

As fall comes to an end we realize we've been stretched, challenged, and blessed. It's been a year since we've moved and as there are blessings there are challenges we didn't consider. Making friends and finding a support system is hard. We have found a great church but have struggled to get connected. Sunny enjoys the youth group and is beginning to connect with friends. We let her go on the youth mission trip without us, 8 hours away. Elliott has decided he doesn't need friends just his therapist. We're working on that.  Moving close to family has put us in a place to help Grandpa. Jim has weekly grocery trips with him and although it's hard to watch his mind and body go it's the gratitude in the eyes that make it worth the pain. 

We had our hearts broken through another failed attempt to adopt through foster care and as the pain is still fresh we don't see the blessings yet. Sunny's A1c is below double digits, not in the good range yet, but it's progress. Elliott is Elliott and we've seen a lot more smiles. Jenna's been off low dose chemotherapy for 6 months now and she's worksite part time substituting in the cafeteria. Jim works A LOT, more then we'd like. Yeah, medical bills don't pay themselves, and we're pretty sure no one's getting cured in the next year. 

So maybe this year we've been stretched a little more than we like but we're counting our blessings more often. In the coming year we hope you remember to count the blessings. It's the blessings that really count anyways!

Love,

Jim, Jenna, Sunny, and Elliott 

Consider it joy.

Life is hard.

That's it.

Simply hard.

Emotionally and physically draining. 

I always thought it would get easier as I aged. 

But I'm still waiting.

If only one thing would go smoothly or just as I planned.

What if everyone in our family was perfectly healthy, no overdue medical bills, everyone gets along? My hopes and plans workout? 

Would I then be content? Because in all honesty some days it's a struggle. 

On the days when I've just had enough, when giving up seems like the simpler path, why don't I. Because I can't. 

Deep down I truly believe the struggle and pain are worth it. Deep down I know hard is good. Hard teaches me to love with patience. Love for today. Don't give yesterday's struggle or mistakes a seconds thought, don't give tomorrow's uncertainty the smallest thought of fear. Hard makes me vulnerable. I can't survive hard without sharing the details, the nitty gritty heart wrenching moments with friends I can trust. When life is hard I appreciate the little things. Clean laundry not folded, siblings laughing together, teeth are brushed, 5 minutes of calm. 

Life is hard. I wouldn't have it any other way.

**Family update**

I originally wrote this blog in May. Our family was dealing with the struggles of moving in the midst of all our normal battles. Of course it was only a season.

Then this summer we were contacted about adopting the two boys we had hoped to adopt over a year ago. We quickly went through the home study process here in Indiana. Unfortunately, this fall we were informed it wasn't going to work yet again. We were encouraged to continue the adoption process here in Indiana for other children. We were devastated and are hurting. We are praying about whether we will continue to pursue adopting.

It's been hard. It will be hard. I will consider it joy.

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.