Thursday, July 5, 2012

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.