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!

Our Invincible Army

        We as a family enjoy taking turns. There is no reason to hog all the visits to the local hospital as a patient.  This is usually a twice a year event. Sunny and I tend to keep this to ourselves  but once in a while we allow Jim or Elliott to take a turn.  Being a good sibling, Sunny is sharing her turn with Elliott. They have a long history of taking turns in the hospital.  We joke that we helped pay for the new wing at Cincinnati Childrens.  All joking aside we paid for at least the flooring.  They could of at least asked for our opinion of carpeting or laminate.
     Here in Bryan we have assisted in funding the new hospital. You know I never thought of it this way but when we move to a new town the hospital gets a makeover. I really think Jim and I should find something else to invest in.
    All kidding aside tomorrow Elliott is going in for a few tests. He is being checked for some stomach issues and  gets to have an upper gi and blood work (ruling out diabetes since it can run in families).  He takes it all in stride. We all have a strength we don't know is within us until it is needed.  
    As a family we have been reading The Bronze Bow, a story about a boy growing up near Galilee when Jesus was beginning his ministry. He is conflicted with the idea of love and forgiveness and fighting for freedom from the Romans. A friend shares a scripture about how God has given King David the strength to bend a bronze bow with his hands.  This morning I felt an urging from God to sit outside and have my coffee with him. Not pray for anything. Just be. I had so much to do but decided everything else could wait. It was well worth it. I opened my bible app and with my eyes closed pressed a scripture to meditate on.  It was a scripture I studied earlier this week. It is quoted by Habakkuk and contains the bronze bow reference also.  It is about the strength God gives us along our path.  God is so AMAZING!! So tomorrow as I sit in the hospital with Elliott, our family will have our own invincible army from God to fight away our fears.

Psalm 18:31-36
For who is God, but the Lord? And who is a rock, except our God?— the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze. You have given me the shield of your salvation, and your right hand supported me, and your gentleness made me great. You gave me a wide path for my steps and my feet did not slip.

When God Says It's Time

It is done. I have been planning on doing it for awhile. Something always stops me. I made a decision. Today will be the day. Nothing will stop me.  I did it. I dropped off our adoption application. This has been a dream of Jim and I since before Elliott was born.  Something quiet in our hearts started speaking to us. There are children who are brothers and sisters that want to grow up together but may never have the chance. Children by no fault of their own who are waiting to know they are loved and belong to a family who will love them forever. 

We first started this process 11 years ago. It was after we lost our fifth child.  I was told my Lupus was terminal during my pregnancy with Sunny and because of a miracle we both survived. We knew why I could not carry children and the impact it would continue to have on my health.  We wanted a family so we started the adoption process.  There wasn't much discussion we both were drawn to the idea of bringing a set of siblings out of the foster care system. 

We had to stop the first process after finding out I was pregnant with Elliott.  We didn't know how my health would handle another pregnancy.  We were blessed to make it through with no complications.  We considered continuing after his birth but he was diagnosed with a genetic seizure disorder.   Six years later we started again. Jim was injured at work during our training, and we put it on hold again.  After he recovered we returned to the process again, then Sunny was diagnosed with Type 1 Diabetes. I began to give up. Two years later I developed one of my worst Lupus flares. We were done. I had written in my prayer journal about these children that are out there who belong to our family and are waiting to come home.  I mourned for the idea of bringing these children home as I had mourned the loss of being able to carry more children.  Every time I saw a pregnant woman or hear of a families' successful adoption the tears would come to my eyes. I ended up in a dark place where I had to acknowledge my bitterness towards my situation and learn to accept it.  I am so thankful for the two children I have been blessed with but there seems to be an emptiness where I know more children should belong. I was so angry that God would take away this opportunity to love and raise more children. Each time the door closed. Was God really telling me no? 

I began to realize God's plan is always perfect.  In my life no matter how bad a situation was I can look back and know He brought about something amazing. Last spring that quiet voice started speaking again. It is time.  Don't be afraid. Don't let the fear of the unknown stop you.  Keep praying, you're children are waiting to come home. We will be waiting for when God says its time to bring them home.

One Half Closer

Today I am lowering my prednisone by a half. One little half.  That one half means I am one half closer to being completely off my prednisone. It has been 3 years since I came into this Lupus flare. It seems like forever.  Maybe that has to do with the fact my memory was gone for half the time. Which makes it kinda nice since I don't quite remember how bad it was. I have a walker in my garage to remind me how my Lupus affected my Central Nervous System and I was losing my ability to walk. I do have a great story about leaving a dressing room without my pants on and countless stories about friends who fed my family and cleaned my home until I could stand on my own two feet. To get out of my flare I started on 60mg of  prednisone along with receiving weekly doses intravenously of 1000mg of Solumedrol, 1000mg daily of CellCept (an anti-rejection immunosuppressent drug), and my old faithful 400mg of Plaquanil (an anti-malarial drug).  Now I am down to 4.5mg of prednisone, CellCept, and Plaquanil.  Every two weeks I get to take the prednisone down half, as long as my Lupus remains in remission I keep going down.  Eventually I may even get to stop the CellCept. 

I really am bad about taking medication.  I know it is what has saved my life, but it is a constant  reminder that I am sick, that I am waiting on a miracle for this Lupus to be cured.  Until that day I will never have a day that I can go outside my home and allow the sunshine on my face, open my drapes and let the sunlight brighten my home, awaken in the morning able to move without stiffness and pain, and not feel fatigue as I begin my day.  However with these drugs my life has become easier. Most days I feel almost normal, I can get out of bed with in ten minutes, finish a chore or two before I need to rest, and make dinner for my family. Today, I will celebrate with my family that I am below 5mg, one half closer to a med free remission.  And I will keep hoping for my miracle, a Lupus cure.

Ketosis Strikes Again

Well it has been less than 1 week since our last encounter and it has struck again.  This is a new venture for us. One we would rather not take.  Sunny normally may develop ketosis once every two years, now it seems to be a weekly encounter.

This morning I was awakened by Sunny telling me her pump wasn't working.  So we checked the battery. It was dead, found a new battery, it was dead. At 7 am I went in search of the ultra expensive hard to find battery at Walmart. Where 15 other people with full carts are trying to check out in the 1 lane open.  I only want to buy 1 package of overpriced batteries and leave. While I spent 20 minutes in line Elliott texted me that Sunny had large ketones and what should they do. I hardly ever get impatient at the grocery store, it's usually my child free quiet time.  But today the employee who cashed her check in the only open lane and  stood chatting with the cashier almost brought out the mama bear in me to yell I have a sick child who's life depends on this battery. Technically her life doesn't depend on the battery, it is insulin we depend on, the battery just makes it easier.  As for yelling at the cashier, who also insisted in cleaning the counter between every customer, I left that up to the grumpy older gentleman, who noticed two managers having a chat, he let them know how WE felt about standing in line. Two lanes immediately opened.

As soon as I was home we started checking symptoms, giving shots, and playing phone tag with doctors.  Luckily by lunch time she was back to normal, able to eat, and ready for a nap.  I think I just may take a nap too.