I breathe deeply.

My forehead is red. Waiting for the mark to go away. I found myself in the most awkward position. IV in, face down, arms behind my back. Take a deep breathe. A new test. A new day. A new normal. I should be recovering from a partial hysterectomy. Instead I am waiting for a full hysterectomy and going through test after test. Laughingly, I tell the technician, I've been through a lot of tests but nothing like this.

I am thankful God's timing is perfect. Since my partial hysterectomy was cancelled I decided to have my yearly mammogram. It was supposed to be routine. The next day the call came. I pray. I breathe. We are used to those calls. We need you to come back. Something abnormal found. We take another picture. The next day the call came again. We need to biopsy. MRI scan to check for more clusters. Is this a dream? I have lupus. I can't be suspected of having Breast Cancer too. Our new normal has begun. They review my history, I have too much risk. So today I find myself in the MRI machine. In an awkward position, trying to slow my breath with prayer, searching my mind for every calming verse His word has spoken to me.... I fear.... How can this be? It has to be a mistake.... I remember who is in control. Who loves me. Who never forsakes. Who asks to carry my burdens. I breathe deeply. His peace fills my lungs.

I have heard all about you, Lord. I am filled with awe by your amazing works.  In this time of  need, help us again as you did in years gone by... Habakkuk 3:2

Beautiful Creation

On our flight home from California we flew over the Grand Canyon. Pictures and movies can not do it justice. I can't begin to imagine the wondrous beauty it would be to behold from the ground! It amazed me, the vastness, the time it took to be created, and is taking to be created. Millimeter by millimeter it is being carved out. Only God knows how deep and wide he has visioned it to be or which minuet piece of sand and rock will flow through to bring it to completion.

I realized we are similar to the  Grand Canyon process. I too am being shaped. By the friends and family I have, my struggles with my Lupus, the consequences of my sins, the lessons I learn every day, each one is a minuet piece of sand and rock shaping me. God is slowly carving me into who I am meant to be. He is the Living water to bring all the rocks of hurt, disappointment, and sin in our fallen world into something beautiful. I am one of God's beautiful creations. How often do we think of ourselves as a beautiful creation? We were created by God to be his beautiful creation. But we have damaged his creation through our sin. He so eagerly wants to restore us to the beautiful creation he has visioned for us. If we stand firm and allow him to shape us with the freeing grace found through Christ and follow him in obedience we will become the beautiful creation he has visioned us to be. Even more wonderful than the Grand Canyon.

Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.” (John 7:38 NIV)

You answer us with awesome and righteous deeds, God our Savior, the hope of all the ends of the earth and of the farthest seas, who formed the mountains by your power, having armed yourself with strength, who stilled the roaring of the seas, the roaring of their waves, and the turmoil of the nations.
The whole earth is filled with awe at your wonders; where morning dawns, where evening fades, you call forth songs of joy. (Psalm 65:5-8 NIV)

Too Much To Do or Maybe Not

We are going to California this weekend.  I am so excited! Probably driving my family crazy.  This will be the first visit the kids will remember. I am so excited, really, really, excited!  I have it all planned out. I have looked at the maps, [I think I have the freeways memorized, and I can say freeway without being made fun of while we're there because that is what we Californians call the highways] calculated gas milage, food budget, and planned where we will go. I am so excited!

We are as prepared as can be for the whole TSA thing.  We had trouble the last time because of my sunblock, it contains metals and banned ingredients. I think we will just buy some there. But now we are in a whole new situation with Sunny.  Although they do approve her to carry on all her supplies, she will need to be personally searched according to their website. Our plan is to arrive early and be patient.

And now let the resting begin. I know it is what I need to do, but it's not what I want to do. There is packing and preparing for our home visit. Oh, did I mention that we have our home visit the week we return.  The last step and our home study is done!! Did you read that? Our home study will be done! Finished! Complete! Now that is exciting, really, really, really exciting.  If all goes well, we will bring our kids home this sumer. Did you read that our kids? I am smiling from ear to ear. Our kids! I love the sound of that! That is worth resting for. Our house really is ready, it's not going to ever look like it came from a magazine and that is ok.  As for packing, Jim and the kids are quite capable of helping to pack. So now I can rest and just be really excited! Yep, I am really, really, really, really excited!

Happiness vs Courage

I  want my children to be happy, however I have discovered what makes them happy is not always what is best for them.

Sunny had a rough start to our homeschooling year. Actually Sunny and I had a rough start to our homeschooling year. There were tears, angry words, and stomped feet. Not proud to admit, many were had by me.  We both often wanted to be right. O. K. We both wanted to be right ALL the time.  She said her work was too hard, in "real" school teachers are trained to teach the subject they teach so they know more than I do, she wanted to be with her friends, and  she wanted to be a normal kid (still trying to figure out what that looks like). I agreed with her 100%.

So back in November I placed her back in "real" school. School was still hard, her teachers do have more knowledge about the subjects they teach, her friends didn't have "room" at their lunch table and she had to find new friends to sit with, and  being "normal" for a diabetic kid is a  whole different kind of normal.

Sending her back was the easy choice or at least I thought it was. Her anxiety is too the point of tears some mornings and we have weekly discussions about letting her be homeschooled again. She would be much happier she says, but is it the best option for her.

She became ill last month and missed most of the month of school. She started failing her classes, she just couldn't keep up. I was frustrated with the school for not helping her get caught up. Then Jim pointed out to me I was doing all the talking with the school. Sunny is more than capable of working with her teachers to make up assignments. But it meant she had to speak up for herself. She had to learn to use her voice. Being someone with a chronic illness needs to have their voice heard or they can easily be pushed aside. I knew this personally with my Lupus, during high school I had to constantly ask for extensions on assignments. There were days when I literally could not sit up or even hold a pencil. Sunny has days when her blood sugar is so high she cannot concentrate on the simplest subject. Our voices need to be heard, we need to have the same opportunities as those without medical complications. But it takes courage (lots of it) to say I can't do this, today I need help, I have an illness that affects my entire life. She will need that courage until the day she stops fighting her diabetes. Life takes courage. Courage is not always the option that will make us happy.

We told her last week she will remain in public school. No discussion. She was not happy. I wanted to say yes we will pull you out, we will protect you from being afraid of challenges, working harder then you think you are capable,  and dealing with your peers. Then I got my head out of the clouds and accepted life isn't that easy. She will always face these issues, there will be situations that take us out of our comfort zone. We have to accept that we will grow through finding courage or hide from the realities of the world we live in.

So now that I chose for her to find her own courage. I have to find the courage to allow her to grow.

But now be strong, (Jenna) Zerubbabel,''declares the Lord. ‘Be strong, (Sunny) Joshua son of Jozadak, the high priest. Be strong, (Sunny, Jenna) all you people of the land,’ declares the Lord, ‘and work. For I am with you,’ declares the Lord Almighty. (Haggai 2:4 NIV)

A Lesson Gained from Failed Resolutions

Every year I make resolutions for the New Year. I have even written them out and signed my own contract. Year after year I do not keep them. Usually due to loopholes I purposely place in my contract. They are for my own protection. It can be devastating to my self esteem to see I have failed again. Usually I fail because I don't have a realistic plan. Now I am an avid planner. I have plans for budgets, vacations, how to be a better wife and mother, and of course the ever popular lose weight.  My weight loss plans are the most devastating, the chart that shows were I should have lost x amount of pounds after 12 weeks. Normally I just start the chart over, but it really is not a productive plan. I do think it is important to try again even if it means trying anew every day.

I have decided that instead of a resolution list this year. I will focus on making each day new.  Each day is a new day to turn my focus on God and when I turn my focus on God he will guide me.  I will still make a list to love my friends and family unconditionally, be a loving respectful wife and nurturing mother, take my health seriously by taking meds as I should no matter how good I feel at the moment, exercising even when it feels I have no energy, and feeding my body healthy food instead of feeding my emotions.  These are all extremely important to me and can all be accomplished.  They will be accomplished by prayer, gaining wisdom from God's word, and trying over and over.  I will not put a time frame on it for each day will always bring a new challenge that may stop me from my goals. But only for that day. My list will be a lifelong list because even if I become healthier than I have ever been in my life I don't know what the next day will hold.

My list is important it contains no loopholes, because I am handing my list over to God and He has it all worked out for the greater good.  I may not lose 100 lbs this year, reach a medication free Lupus remission, or become the world's best friend, daughter, sister, mother or wife. I WILL face each day God has blessed with as an opportunity to grow in God's wisdom, learn from my failures, and try again.

A Lesson in Thankfulness Called Sunny

It is easy to look around and find something to be thankful for. Our families, friends, living in a country where we have freedoms, we have food on our table, beds to sleep in, and a roof over our heads. It is always easy to be thankful for the gifts we have been blessed with.
But what about being thankful for our trials. In 1 Thessalonians 5:16-18 we are reminded Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. How often do we give thanks for our hardships? I can look back on my trials and choose to ask why God? Or I can look back on my trials and praise Him for the lessons he has taught me.
After having Sunny it was such a relief to hold her, it was easy to thank God for the blessing of a child. When she was 2 months she started bleeding profusely from hemangiomas. I took her to the doctor and was told I was overreacting. We were in the process of moving to Cincinnati and I decided to take her to a doctor there. She just didn't seem right. We had blood work done and headed home. Before we arrived home the doctors office had called telling us to get to the Children's Hospital. We were seen immediately and told they suspected she had Leukemia. They tested her and it was negative, but she had lost so much blood she developed a heart murmur and needed to replace 80%of her blood. Over the next few months she received blood transfusions, we would hold her down as she would be poked for a good vein over 50 times. Surgeons would be brought in for the last effort. The doctors decided the only way to stop the bleeding would be to remove them. It would require an 8 hour operation. It would be dangerous due to her size. It was our only option left. After the operation she stopped breathing on her own. When she was finally stable they let us see her. A few hours later her heart stopped. I was awakened by the alarms. They would rush in and bring her back. This would happen two more times. I have never prayed so incessantly. By morning she was in a comma, but finally breathing on her own and she had a smile on her face. Nurses started calling her Sunny. Then she woke up, no crying, she just started looking around with that little smile on her face. There was much rejoicing, tears of joy, and praise to God for an answered prayer. But why did we have to watch her suffer, why did she have this condition, why would we have to go through years of therapy to make her "normal"? Yes, I could praise God for saving her, but could I praise Him for the fear of losing my child, for all those painful memories.
I was given a gift through that experience; the gift of strength, of perseverance, of faith. As our life continues those gifts are used daily. They were blessings when Elliott had daily seizures and when Sunny was diagnosed with Type 1 Diabetes. Now I am truly thankful not only for the blessing of family and friends but also for the trials we will face that make us question how am I to overcome this. So, yes Lord, I will rejoice and give thanks to you when I see or feel suffering for you are giving us a gift. A lesson to how we will overcome our fears and trials.

Feeling Normal

Every once in a while I feel "normal". Today it is the opportunity to spend time with other Lupus warriors. Even though each one of us has a different story, a different list of symptoms, and a different treatment plan, we are all warriors against a body which fights against us. 

Recently I have been very blessed to be in a medicated remission. Most days I can honestly say I feel normal.  I am enjoying these good days and so blessed to have them. It is easy to forget what those bad days where like or worry about when they will return.  I know I can not live this way. I have to prepare myself for those bad days and those moments when the hopeless thoughts start to takeover.

Having an opportunity to be normal is a gift. It is received by being with other Lupus patients.  We are a gift to each other.  No one else can understand the inability to fold laundry (this is not to be confused with my deep hatred of folding laundry so maybe I should see this more often as a blessing) or feel  completely exhausted after getting up in the morning. 

I have been learning how important community is.  It is so easy to try to handle our emotional battles alone.  A physical need is easier to notice. That pile of laundry that took over the couch, but those emotional needs they can be easily hidden with a smile. They need to be taken care of too.  Sharing my emotions, as I am learning, is harder than dealing with my physical needs.  I can ask someone to fold the laundry, but to share my fears and hopeless moments that means being vulnerable. Being vulnerable to sharing emotions is an amazing release, an opening into a deepening relationship.  I have been surrounded by an amazing support system  from my family, friends, and "lupus family". My lupus family is my support group I attend monthly where I can be truly honest about how I am dealing with my "normal". So maybe I can learn to share that today is not a good day, that I am scared, or I am angry I have to cancel again because  I am too tired or in too much pain. I will still probably tell you with a smile!