Two Worlds

To some extent, we have moved past the shock and denial stage of this cancer journey (although not completely...I think we will carry some sense of the "I can't believe this really happened to us" feeling forever). The truth is that our current reality is still very new and the territory is extremely unfamiliar and painful to navigate. In the first couple of weeks, I could do nothing but look either backward - at what was no longer...or forward - at what was never going to be.  I think I am beginning to submit to this path (as if there was a choice?) and to live in the present...simply because it is the only way to make it through each day. Even so, the present is proving to be difficult terrain, as I attempt to find a balance between two very different worlds.

No one likes hospitals. The only thing good that happens in a hospital is that new babies are born, and if you aren't visiting for that blessed event, then any other trip stinks. They are filled with white walls and small windows. The environment is cold and mechanical...machines buzzing and beeping and whirring at all times.  Outside the day is bright and sunny and the world bustles by. Inside, it is dark and quiet and time stands still. Childrens' hospitals are even worse...especially in the cancer wing. You walk the halls past pictures of precious and smiling bald children...and only now do I have a sense of the war those sweet faces have waged. It is miserable. Still, what we are finding when you have a child with cancer, is that there is some comfort in the hospital. A bit of routine to it. A bit of familiarity. You get to know the nurses. All of the families there have been baptized by fire into a club that no one wants or expects to join. We understand the brutalities of chemo, the grueling nature of the schedule...of juggling life and cancer, of being consumed by fear, of horrible choices. You don't feel alone...and if you are in the hospital, you are fighting the illness...and so it is one of the few times when you have some sense of empowerment because you are actively battling the disease. It is still stark and sterile, but it is a community and there are few distractions. You can set aside life, withdraw a bit...and focus on the fight.

But then there is the other world. Home. Obviously our preference for places to be. When we are in the house with just us, life is relatively normal. Although normal looks a bit different...as we have a child with bone cancer who has lost all of her hair and can no longer run around outside with her siblings, climb into her brand new loft bed or go to school with her friends...but even with all of that - home still feels good. Any mama knows that there is something about having all of her babies under the same roof.  If we could simply hide in our house, home would be amazing. In our little cocoon, it is easy to remain relatively free from pitty parties. But with home, comes the "doing of life" - our old life - and jumping back into the crazy suburban routine is hard. It makes the pain feel new again, fresh...almost as raw as it was in the first few weeks.  The typical things of life, even though I know they are important...feel ridiculous, excruciating, superfluous. I wish I were mature enough, wise enough...to rise above - to embrace our journey as one designed specifically for us (because it is) and be thankful for it...to refrain from looking around or back. But I am not that woman...at least not yet. I am praying that I will get there, but I feel that peace might still be quite far off. I see Bailey's friends run into school on two healthy legs, and it hurts. I get an e-mail about summer basketball camp and my heart sinks. I see information about the talent show, which Bailey was looking forward to competing in with the jump rope club...and I shake. I listen to other moms complain about planning and driving and busyness and stress and I have to walk away. I hear about all of the exciting things the kids will be doing in fifth grade and I ache. I see Bailey's teammates headed to swimming or tennis practice and it knocks the wind from my lungs. May is usually such a happy time for children. There are fun things at school, yearbooks, awards ceremonies, good times with friends...and she has missed so many of them - her eyes sad, but her emotion is disappearing, because there have been so many disappointments...the pain throbs. I know that this will fade over time, but never completely. For now, it feels like a fresh wound is ripped open each time I am confronted by something from our old life.

Two months ago, we had no idea how our lives were about to change. We had healthy kids and we were ready to wind down the school year for a fun and active summer. Swimming, a trip to the beach, a wedding in Vail. As a parent, I think you always have some sense that things can change immediately, that accidents can happen...that life is fragile. But did we ever suspect that our athletic child would be stricken with a rare bone cancer that would threaten both her life and her ability to do everything she loved? Did it ever occur to us that Bailey would be one of only 400 children this year who will be diagnosed with osteosarcoma?

Never ever.

I am not used to having a sick child. I am not used to having a limited child. I not used to having a child whose body will look permanently different as a result of this cancer. This is all new. In speaking with others who have suffered, I am realizing that traveling between the two worlds is something with which most everyone struggles. Being in either world is tolerable, but jumping back and forth from one to the other, though unavoidable, is extremely uncomfortable and emotionally distressing. I am saddened that I was not sensitive to this before...as I watched others hurt.  I am learning so much and I am greatly humbled. Maybe some day I will be on the other side of this and I will be writing posts with answers...with neat little wrap ups about walking through a valley. I'm not sure.  I can't even imagine being in that place. The immediate future holds only more wrestling, more hard, more trying to sort through our new reality. I pray that in time, God allows me to rise above this...to grow in faith and wisdom. I suspect for now, that I have much more time to spend wandering in this desert.

1 comment:

Sonja said...

Thank you so much for leaving a comment on my blog. I have been looking at a few posts on your blog and am so impressed with the grace and courage you have as you take care of your family and deal with cancer. I can relate with so much. My heart goes out to you, I know how hard this is. I havent been very good at keeping my blog up, but I want you to know just how well Steven is doing on his leg. He has had some complications through this last year and I have doubted the rotationplasty decision at times. But it has been just over a year since his surgery and he is doing so well. He plays soccer with his friends at recess and 'runs' everyday with his class to prepare for their fun run. It is not the same as before and he and I both feel a sense of loss at times, but usually he just goes forward and adapts and challenges himself to do more. I am glad we chose rotationplasty now. He is developing so much confidence in himself as he overcomes hard things.

I hope and pray for the best for you and your family. Your little girl is so brave and so are you. If you ever have questions or just would like to talk, my email is sonjablodgett@gmail.com. Email me and I can give you my number.

Also, a friend of mine found your blog through your comment to mine. She was really touched and inspired by you and was reading an article that she thought you might like. It is from one of our church leaders http://www.lds.org/general-conference/2011/10/the-songs-they-could-not-sing

Take care and good luck with the surgery. It is funny how the things I worried about before Steven's surgery never happened and then things I never would have imagined would be hard. He has had no problem with being embarrassed or self concious about his leg, but I also thought he would just kind of start walking right away. Learning to walk is hard for all the kids, but he had some extra challenges and was on crutches for so long. But like I said, looking back I can say with confidence that we made the right choice for him. After reading some of your posts, it is clear that you are an inspired lady and since I am a rotationplasty fan, it is easy for me to cheer you on in your decion as well.