Tuesday, December 22, 2015

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!

Jim, Jenna, Sunny, and Elliott 

Tuesday, May 12, 2015

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 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.

Tuesday, March 10, 2015

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

Sunday, February 22, 2015

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.

Wednesday, February 18, 2015

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.

Thursday, February 5, 2015

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.

Thursday, January 29, 2015

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.

Wednesday, January 14, 2015

Getting Uncomfortable

Its been awhile.



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.