Bailey's Surgery - Part III - Another New Normal

Surgery is over. We have weathered being forced into cancer, the disbelief during the information gathering stage, the agonizing decision, the waiting, the wheeling off of our child into surgery, the grueling and shock-filled first few days of having a daughter who is an amputee. We have spent hours staring at her rearranged leg. On one hand, not overly surprised because we had prepared and visualized this moment so many times in recent weeks. Yet also, utterly in shock. Is this really Bailey? Our Bailey?  Seriously God? 

My child has now become one of probably less than 15 children who will undergo a rotationplasty in the United States this year. Why so few kids? There are a number of reasons. One is that only 400 children will be diagnosed with osteosarcoma - so the pool of potential candidates is already small. Another, and likely the main reason, because it looks shocking. It is the favored surgery in Europe and popular in Canada...but not in the U.S., not in our extremely image conscious culture. We still think that this was the right surgery for Bailey. Cancer gave her the option for form or function, but not both...the vote was unanimous...we wanted function. We are perpetually torn between both the oddness and miracle of rotationplasty. The cancer was removed, which for her included the knee. The leg was reattached after being rotated 180 degrees and her ankle will now become her knee. Her brain will retrain itself. No nerves were cut. The ankle joint was not wasted. Crazy. Brilliant. Insane. Awesome. While there are no guarantees, we have seen children do amazing things once they heal and adjust to their prosthetic leg. This is what she wanted, a solution that would still allow her to run, jump, climb, wrestle, play sports and experience an active and healthy lifestyle. It is certainly not what we could have imagined...not our plan...but we are thankful that He provided a way.

Bailey was released from the hospital yesterday. Her progress is going well and we are continually amazed at the things that she can already do...wiggle her toes, rotate her ankle, even lift her leg a bit. But though God has brought peace in this choice, there is still much sorrow to walk through. Cancer has taken part of our child's leg. It is a loss. A deviation from our plan, hopes, dreams, and expectations (but not His) for our daughter. We have no idea how to walk through this. There is no playbook. As we sit in a hotel room right now, waiting to head home, the emotions are mixed. It seems to be the only thing we can count on during this process...joy and sorrow - twisted together, occurring sometimes singularly and other times, colliding in this weird sort of other worldly cocktail. 

I feel as though there should be more tears. As I help her with a walker to the restroom. As I look at her different appearance. As we consider just how much has changed. But we have cried many tears already, and so for now, they are not coming. I am not sure if this is shock, or God preparing us or carrying us, or that we are too busy care-taking and are simply too exhausted to cry...or more likely, some combination. It feels like a strange sort of limbo...not quite home yet to truly face the reality of the changes. Simply trying to put one foot in front of the other and get through this particular day in front of us. Watching our daughter closely, taking our lead from her. While everything inside of me feels shattered, if she is doing alright, than I certainly do not want to heave my heavy load on her shoulders. We are definitely in uncharted waters, wondering when the next wave of emotion will hit and exactly what emotion that will be?

So, that is where we are now. Doing alright from minute to minute. Dreading the next two-three months until she can begin work on a prosthetic leg. Still reeling, yet feeling incredibly grateful for this solution and that all has gone so smoothly.  Praying that God gives all of us what we need to get through this, especially for Bailey...as she is ultimately the one who must travel this road.

I have taken many pictures. As we were making our decision, we relied heavily on the stories of others and Bailey would like to minister to other kids through her journey. However, and understandably, she isn't quite ready for me to post her new look for the world. So, when (and if) that time comes, then I will post pictures - but I am leaving that completely up to her. 

Again, thank you for walking with us...for standing in the gap when we are too weak to do so ourselves. While there are still challenges ahead, there is also much for which to rejoice and thank God. 

1 comment:

mini and brother said...

You are an amazing mom! Praise God the surgery is over. Praying the next couple months go quickly.