Today has been a good day for Brea and a hard day for Brea's mommy. Brea is doing great. She is charming all the nurses, doctors, therapists and technicians with her smiles, waves and kisses that she blows and causes quite a stir when she leaves her room in a little red wagon for one of her appointments here in the hospital. It amazes me that even with the little mask covering the majority of her face we are still able to see her smiling through her eyes! I think she just might have a career in the medical field in her future since she has already started "helping" the nurses by trying to remove her PIC line, removing the bandages from her wounds and has even attempted removing the stitches from her side where her emergency chest tube was put in. This morning when she went for her echocardiogram she was eager to help the technician with her job too. Thank goodness that jelly wipes off easily or we would have really had a mess to clean up. I must say that the staff here is really wonderful. Even with all the "help" they get from their little patients, they keep a smile on their face and truly seem to enjoy interacting with them.
I wish I could say that my day went as well as Brea's did. I spent the majority of the day in tears. Have you ever had one of those days that it seemed with every corner you turned there was someone there to smack you with a giant snowball? This morning the transplant coordinator told me that she was sending Brea's prescriptions to the outpatient pharmacy to be filled and I would need to pick them up by 6:00pm. It took all afternoon and countless phone calls to figure out how the 10 medications would be covered and the pharmacy even called to tell me that they were holding off on filling the orders since they had already made 4 of the 10 and the total was already $2,700. Needless to say when I arrived at the outpatient pharmacy the clerk was quick to tell me what I owed and was not sympathetic to our situation. At that point I had taken all I could take for one day and broke down in tears (ya know, the kind that start to flow when you are so angry that you really want to shout but know that it is not the right thing to do). I guess I just still can't believe that our system is so broken that it rewards those who don't work and penalizes those of us who do. Needless to say, I got the medications and went back to Brea's room. Brea was napping so I settled down in a chair next to her crib and started opening the mail that Danny delivered over the weekend. Our home owners renewal policy had come in the mail and I was shocked to see that the rate had almost tripled. I called our agent only to learn that the insurance carriers in Louisiana have raised their homeowners rates by 60% effective January 1, 2007. What do ya know...here came the tears again. I believe with all my heart that my God is so much bigger than insurance carriers and He will provide for all our needs but I am still overwhelmed at the idea that we thought we were doing everything right. We married, bought a home, had children, had health insurance, planned for retirement, etc. but now all of that is in jeapordy because we have had a catostrophic illness in our family. Maybe I am naive but I've never heard of this happening to anyone before until now. I've met families here in the waiting area who have lost everything. They've had to file bancruptcy or had to cash in their retirement savings to pay medical bills and are now facing an uncertain future when they retire. One suggestion made to us by the hospital social worker is to get our story out to the media. She felt that it could put pressure on the government to get us the help we need. I'm not sure if it would or not but at this point I'd stand on my head and whistle Dixie if I thought it would help. I am so thankful for my faith at this point in my life. Without it, it would be too easy to crawl under a blanket and not come out for days but then Satan would have won and I'm not going to let that happen! I'm praying that he will realize that the more he attacks my family the more I am going to reach out to others to join me in prayer and the more God's message of hope will be spread around the world. He has used the internet for far too long for evil but now it is our turn as Christians to use it to glorify God!
As if the insurance woes weren't enough to burst my bubble today, I am really missing the kids and Danny. It was so nice to have my family together over the weekend even if it was only for a short while and even if it was stressful making sure the kids were wearing their mask, not touching their sister's hands or face and sanitizing everything they touch over and over again (letting them visit in the East wing is a little easier but still strongly discouraged). Now that things are calm and quite and Brea is sleeping peacefully in her crib, the reality of our seperation is all too real. How could it be that a family of five could be spread out across two states when they need each other the most? Ya know, someone told me once that times like these will either tear a family apart or it will make them stronger and the first is not an option for us so we are going to be one mighty strong family when we are finally all together again! Thank God for the telephone! Thank God for the sound of the kids voices in the evenings and thank God for a husband that I'd marry all over again even after all these years.
Thank you for letting me share our lives with you. This journal was never meant to be anything more than a way to document our adoption experience but it has turned into something much bigger than I could have ever imagined. It has become a source of comfort in this storm, a link to the outside world from inside the four walls of this hospital room and a special place to share my thoughts, feelings, fears and joys. I have heard from many people who say that I've encouraged them or helped their faith to grow but be assurred that it is not me, it is God who does those things...if it is me that He wishes to use as His vessel then I am willing in hopes of someday hearing those precious words..."Well done thou good and faithful servent" Matthew 25:21.
I don't know about you but I am looking forward to a new sunrise in the morning, a new day, a new outlook, a new awakening and a new chance to serve a risen God!
Goodnight from an exhausted (emotionally) mommy of three beautiful blessings...one of which just snorted in her sleep.
PS: I have not been able to email out since we've been here and now suddenly I'm not getting emails. Possibly operator error.