Two Years...After (Part II)

Photo courtesy of Cindi Fortmann Photography

I struggle to believe that it has been two years since they wheeled Bailey out of that waiting room to take her leg. We strive to live in the day and not look backward or forward. But when I see old pictures of her, it can be painful. It is especially hard to see photos from when she was really young, with her chubby little legs, perfect and healthy. The memories of her amputation day are vivid and will always remain that way. I will not forget the emotions, the pain, the fear. They are seared into my being.

We had done our research, and even though the decision seemed somewhat unusual and slightly crazy, we did have peace knowing that God was leading us down the path of rotationplasty. It was clear for a number of reasons. Yet this did not alleviate the agony or uncertainties. We could not avoid walking through the grief and loss. We also had to figure out how to parent a child through this trauma. It was a long and rocky road. There were so many moments when we felt so overwhelmed and afraid that we did not know how to continue forward.

But as I reflect, with the hindsight of two years, I am completely overjoyed by what God has done. Bailey has adjusted to her new normal with a maturity and grace that leaves me in awe. She has been amazing and each day I am convicted by her joy and willingness to tackle life. She is much tougher and works so much harder than I thought possible for a child of her young age. I am completely astounded by her progress on a prosthetic leg. We thought it would take years, and in God's sweet mercy, she played three sports for her school this year. Gratefulness overflows. Big, crazy joy. 

Are there still hard days? Absolutely. Sometimes Bailey has such a cheerful spirit and makes it look so easy that I think people forget what she is actually living with on a daily basis...both big things and little things. If she has to use the bathroom at night, she hops. Every time she takes a shower, she must balance on one leg. She is not as fast as she used to be. Certain fashion items are a challenge because they do not fit well over a prosthesis. She burns about 60% more energy doing a physical task than someone with two good legs. There are a few things here and there that she cannot do and  she finds that incredibly frustrating. If she swims at the pool without her prosthesis, people stare. As a parent, there are challenges as well. We will have a lifetime of appointments, juggling insurance, paying for legs, adjusting legs as she grows and making sure her technology is the most current. We are learning how to parent the emotions of a child with a physical challenge. When she is struggling, we want to show empathy and validate what she is feeling, but ultimately we must teach her to march forward. It can be emotionally tiring to find the balance between being too tough and allowing the mentality of a victim to surface. There are a number of ways that life is more difficult as an amputee, and every now and then, on the hard days, it can feel very unfair. But overall, I believe we would say that the amputation portion of this journey is not quite as difficult as we imagined it to be in those dark weeks leading up to her surgery.

Bailey is doing incredibly well. She has embraced this as God's path for her life and she is learning to use her story to minister to others. We have already had so many wonderful and unexpected opportunities arise and the beauty is that these experiences have begun to give Bailey just a small glimpse of the bigger picture. Cancer takes something from everyone. It is a beast and it steals. From some, the bounty may be smaller, while others pay the ultimate price. Bailey was sad the other day about something she was struggling with because she is an amputee, and I reminded her that no one escapes cancer without some kind of loss. Our goal with this surgery, was to attempt to limit the loss so that after cancer, she could return to doing almost everything she loves to do.

This warrior princess has already exceeded any expectations we may have had and she has done it faster and with more joy than we could have dreamed. We are grateful that this surgery was a choice and we are thankful to her surgeons, Dr. Scarborough and Dr. Gibbs, for doing an amazing job. We adore her wonderful friends who are incredibly loyal and loving. It has been two years since that terrifying day. It is not always easy and there are certainly challenges, but Bailey is handling life beautifully and when she does not feel strong enough, we know that He is filling her. We are incredibly grateful that God continues to supply all of us with what we need for this journey. We are 100% committed to this battle against childhood cancer because we know the gift we have been given and we will fight always for those who cannot. Our faith has been strengthened, as has our conviction to be certain we are living lives with an eternal focus. Life is precious and we do not want to waste a moment. 

Bailey and our rotationplasty friend, Kelsey

Richard casting Bailey for her new leg.

School is out for summer. Happy.