Happy New Year!

Today we say "goodbye" to the old and say "hello" to the new. Welcome, 2009. We all make resolutions because we feel we have to... I'll quit smoking, lose weight, be a better friend, send birthday cards this year, be a better parent... whatever your resolution is, it's important to you. Those with great will-power stick to those resolutions, others get caught up in old ways, busy schedules, etc. and soon forget what we vowed as the New Year rang in.

We here at the Braue Household aren't making resolutions this year. We have enough going on in our lives this year. However, before I get to why there are no resolutions, let me give you a background on what our life is like here.

My husband and I have two children... Ashleigh (age 17) and Alexandra, whom we call Lexie (age 10). Ashleigh is from my first marriage and at 22-years-old, my husband took over the fatherly responsibility for her. After we were married, Brant and I had Lexie when Ashleigh was 7. For five short weeks, everything was completely normal. However, in one brief moment, everything as we knew it changed. I took Lexie to the doctor for what I thought was a cold, which turned out to be congestive heart failure due to severe anemia. Before long, we found out that our new baby had a bone marrow failure disorder called Diamond-Blackfan Anemia, in which her bone marrow does not produce red blood cells. We found ourselves thrust into a life that we could never imagine...doctors, hospitals, blood tests, bone marrow biopsies, liver biopsies and more. The last 10 years have been a struggle in more ways than just the medical concerns.

The old saying is, "You aren't a real parent until you have more than one child." I'm not going to say that is totally true, but there is some truth to it. For instance, if there is a juice stain on the rug and only have one child, you can pretty much know who did it. In our situation, that saying has a completely different meaning. It's hard enough to manage your time among multiple children, but when one always gets a different kind of attention than the other, things get even harder.

Lately, Ashleigh has been making the joke of being the "forgotten child." Unfortunately, it's not necessarily a joke. Lexie's condition keeps me running back and forth to hospitals, doctor appointments, blood transfusions, parent/teacher conferences, etc. Ashleigh's appointments and schedule has to fit into Lexie's which causes some difficulties as we haven't figured out how to clone me yet. Throughout this blog, I will be talking about some of the challenges that we have come across over the past 10 years and how we dealt with them. As I look back on the outcomes, in some situations I think to myself, "Wow, I handled that really well." Other times, I think, "Boy, that really backfired in my face." Unfortunately, it's usually the latter. However, I've learned from the situations that didn't end very well, and wanted to share our experiences. We learn from our mistakes and hope others can too.

Okay, back to why we won't be doing any resolutions this year. It seems that after 10 years of blood transfusions, Lexie's body is getting very iron overloaded and we needed to look at Plan B. We have made the decision to proceed with a bone marrow transplant to cure her of the anemia. The transplant is planned for February, and if all goes well, Lexie will be in the hospital for 6 to 8 weeks, and then we will have another year of back and forth to Schneider Children's hospital in Long Island, NY. During the time she is in the hospital, I will be living up there with her and Brant and Ashleigh will come up on the weekends. This will bring on a whole new load of parenting challenges.

This blog will be a sort of memoire of our experiences over the past 10 years, combining the past with the present. It is mainly meant for those parents who are living a similar life as we do, hoping that our experiences can help you as you travel through your own journey. To follow Lexie's bone marrow transplant, we have set up a Caring Bridge site for her. That site is www.caringbridge.org/visit/alexandrabraue. Also, for more information on Diamond-Blackfan Anemia, please visit http://www.dbafoundation.org/.

Please feel free to read her Caring Bridge site and post on her Guestbook. Additionally, I welcome your comments on my blog postings and look forward to your own experiences and how you handled them.