Friday, November 23, 2012

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.

Saturday, November 10, 2012

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. 

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!