3.15.2013

One Year Later

Bailey's 10th Birthday (November 2011)
Disney (February 2012)...we had no idea Bailey was sick, but her knee bothered her the entire trip.
This time one year ago was hell week in our house. Bailey's persistent knee pain led to a Sunday x-ray, Tuesday MRI, Thursday biopsy and ultimately, a Thursday afternoon, March 15, 2012 diagnosis of bone cancer. The fear was startling and suffocating. Even now, after all we have walked through, it still feels like this bizarre dichotomy between acutely real and unbelievably impossible. It seems long ago, but I cannot yet read old journal entries without feeling physically ill. Almost overnight, we were brutally hazed into this cruel world of childhood cancer and we can never go back to how it was before. 

Never. 

Many have asked how we are doing, how I am doing, as we approach this anniversary. There is no simple, short, small-talk, feel good answer to this question. I suppose if pressed...thankful, battle-weary (yes, still) and profoundly different would suffice...but those words barely scratch the surface and they are a grossly inadequate description of the journey we have been on. There are so many emotions, both good and bad, and it is difficult to boil an authentic answer down to a socially acceptable response time.

How are we?

We are no longer who we were.

Suffering brings questions for everyone. However, if you are a person of faith, I think those questions are much scarier because they threaten the fabric of your belief system. It is very easy to claim that you cannot believe in God because a good God wouldn't let this happen. It is far more challenging to concede that His plan has suffering in its design for a very specific reason and at a particular moment, that suffering involves your child...yet you still choose faith. It is easier to write Him off completely...than to spend night after night confessing your anger, doubt, confusion and absence of trust in His plan - sometimes lacking even the strength to pray - uttering only groans...yet to still choose faith. It is easier to pick a few favorite verses about God being good, stamp them over the issue at hand and and deny your feelings, rather than violently wrestling for truth. Many times well intentioned loved ones want to throw theology at the problem, but during the darkest nights of the soul, theology can feel like nothing more than salt in a raw wound. Grappling with the fact that He is good regardless of of the outcome...living the agonizing reality that "good" can mean something very different than safe, healthy and happy...that there is a much bigger puzzle being assembled and we are only a small piece...this requires tremendous effort. To every day choose anew to actively trust what you know and not what you feel...it is an epic struggle.

We are no longer who we were. 

Biopsy and day of official diagnosis...osteosarcoma (March 15, 2012)
Bailey had port placement surgery and began chemo the very next week.
Her hair began falling out about two weeks after the first chemo.
Bailey decided to go ahead and go bald. (April 2012)
We have a precious daughter, born with two healthy legs...who is now an amputee. We have watched this now 11-year old turn into a woman-child before our eyes, as she experienced things that would make most adults crumble. We have seen the horrors that come in the name of a "cure." We have spent over 50% of nine months in the hospital....watching our daughter miss school and friends and life. Our family has been separated and we have tried our best to keep everyone's life "normal." Although early on, we realized that this was both a ridiculous and impossible plan. Eventually, we settled on the goal of simply filling each of the four love tanks as they became too depleted...because "normal" was nowhere on the radar, nor was it even remotely attainable. Our active, athletic child has not run a step in over a year. We watched her handle hair loss, nausea and amputation like a warrior princess and some days, we were able to keep going simply because she did. We have learned about chemo and prosthetics and long-term side effects and probabilities. We have been connected to so many other cancer families and we will continue to walk with them, because that is how this world works. You can't truly understand the horror of childhood cancer until you have lived it. To see one of your children in agony and not be able to give them relief...it does something to your soul. We knew nothing of childhood cancer and now we are passionate about raising both awareness and funds. We are also learning to live life in 3-month increments...from scan to scan...battling for joy and against fear with each day. 

We are no longer who we were.

We managed to squeeze in a few days at the beach before surgery, but it was not a vacation. (May 2012)

"Good-bye Leg Party" the night before surgery in Gainesville. Bailey swam laps that night until she was exhausted.

The morning of Bailey's rotationplasty. I'm not sure how she managed a smile. It was a very difficult day.  (June 5, 2012)

It is done. The tumor is out. Time to move forward. (June 11, 2012)

We have seen a church and school carry us when we couldn't stand...showing us how the body of Christ is designed to function. Fourth grade boys shaved their heads and fourth grade girls made a precious quilt that we will forever cherish.  Food miraculously arrived at our door for months. People sent gifts and notes of encouragement almost daily. Flowers were planted in our yard. Acquaintances I hardly knew were some of the most faithful prayer and support warriors. Professional athletes made the time and effort to bring a smile to Bailey's face. Miss McConaughy and Miss Robbie came as angels from heaven here on earth. Everyone prayed. We were overwhelmed by the active outpouring of love and service and surprised by the numbers who were standing in the gap for us.

We are no longer who we were. 



So to sum up in a sentence or less how we are doing...it can't be done. You cannot walk through the valley, yet be continually loved and lifted up and not be profoundly different. If you ask me in passing...I'll probably give you the one sentence easy and incomplete version. But be assured that internally, my brain is whirling and spinning and wrestling...still trying make sense of the magnitude of the last year and of our new normal. It will take time to continue to process and adapt...there is much that is different and much to sort through. There does seem to be some truth to the idea of post-traumatic stress disorder as it relates to a cancer battle and we are still learning how to live in the after. I read as one mom described her "white knuckle grip on gratitude" as they walk their journey...and I am adding joy to that grip as well. It is the only way to move forward, but there are still days when that joy and gratitude feel slippery.


Suffering is not something I would wish for. Only the super-human could desire that sort of pain because they know that growth is the ultimate result. I am human and selfish and sinful...happiness...and the avoidance of feeling as though my heart is being ripped into pieces...well those are my preferences. :) This is also not some nice, neat suffering story wrapped, done and ready to file away. This journey is dynamic and has left us with permanent scars and issues that we will be dealing with forever. Grief and pain are very personal and our path will look different than that of others. Everyone must wrestle with God in their own way and at their own pace. But if I compare the "me" now vs. the "me" of a year ago...there is a marked difference. I am more patient, more empathetic, faithful to spend daily time with God, stronger, a better mom, more intentional, more in awe of my heroic daughter who is oozing joy and Jesus out of every pore, more selective in how I spend my time, more aware of those suffering around me, more content in the mundane, better prepared to help those who are hurting, better at living in the day...even...more joyful and more thankful. I am still a work in progress, but if I honestly take inventory...there is fruit blossoming as a direct result of the last twelve months. It was hard. The pain was intense. Much of the brutal agony has subsided, but we still have bad days and I'm certain the cycle of ups and downs will continue. Even though it has dulled now, the heartache has been a constant, but the blessings...they too are ever-present. 

We are no longer who we were. 


The new leg! (October 2012)

Even after everything Bailey has been through...still smiling. (January 2013)
Three-month scans...no evidence of disease! (February 2013)



"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking in anything. "
-James 1:2-4










10 comments:

Sonja said...

I just love your thoughts. You and your daughter are truly inspiring.

Karen said...

I just read through your blog with wet eyes. Our world also was turned upside down within one week (1/25/12) when our 11yr old Nicole was diagnosed with osteosarcoma left femur. We, like you, brushed it off as "growing pains" when she would c/o occasional knee pain for about a month until it got to the point where she wouldn't walk on it and wanted to used crutches. But with a strong faith, prayer and belief that God would heal her she endured an allograft surgery (removal of 6" of her left femur and replaced with a donor bone), thoracotamy, (a total of 7 surgeries) and 30 wks living in Seattle. My husband stayed at home (3 1/2hrs away) with our other 4. It's been a long road and she's still on crutches as we approach 6mos post chemo treatment, but she is still cancer free. God bless your daughter (maybe our 2 should become pen pals).
Karen

Karen said...

I was also curious if you have a caring bridge site for Bailey. I don't do a CB site for Nicole but one through "coles pages" and it is http://www.colespages.org/NickelsforNicole/pages/visit. Thanks

Kathie said...

Reading through tears. And praying for you, your beautiful daughter and your family.

jodymcnatt said...

tiffany. these one year ago moments mark more than 12 months on a calendar, don't they? we both know that. they are evidence of how our perfect God uses time perfectly. how HE writes the story in and on our lives between the hours and minutes we think we own. oh precious sister, how encouraging you and your family have been to so many. and how many more will come to see the evidence of God's glory, and even His goodness, as the moody's continue to proclaim and He continues to pen this story. we love you guys.

Rebekah Hughes said...

Followed Ann's link to your site. Read through blurry eyes. I know the horrors of childhood cancer. I am a survivor of 30+ years from childhood cancer. I was diagnosed with sarcoma when I was three years old. Having lived with cancer, fought for my life for two years, lived with long term effects, and still facing difficulties and challenges, I know it is not easy. But I also know of God's steadfast love and His mercies afresh every morning. My heart instantly goes out and hurts for others who have been touched by this dreadful disease in childhood years. It is amazing grace when we can see it through the greatest love story and that He does work out all things for the good of those who love Him and are called according to His purpose.

Shelly Peleshok said...

I linked to your blog through Ann's... I attend church with her:-) I wasn't going to read her blog today but stopped and took the time to... For some reason I clicked on your name(I don't often follow links:-)... I am a survivor of those cancer... 13yrs clear now! It was in my right humerus... I was 22yr old hairdresser when I was diagnosed. I wasn't living for Christ despite knowing His truth.. He used this life altering experience to teach me some hard lessons... The Dr's told my parents to prepare themselves because I would not make it... They still don't why I am here .. Despite what I tell them! You're family will be in my thoughts and prayers ... Please contact me through Ann if you want to talk about life after the trauma of cancer... Lots of love Shelly

Cheri said...

Bailey, this is Ben, my neighbor. He is quite the athlete too. And he also has awesome parents!

http://www.caringbridge.org/visit/BenBaltz/photos

Luvmikidz said...

I hopped over here from Holy Experience and wow, what a blessing! I am on a very long journey with a Lyme disease battle and your blog post today really blessed me.
The real blessing for me is to see the pure faith, hope and love that shines through Bailey. I can not even imagine the grand plans God has for her. And my prayers and heart go out to y'all as a whole family . The love you all have will get you all thought it . Kind of like teamwork and sports!
Thank you so very much for sharing yalls story. It has reached a heart all the way in Texas. Please tell Bailey thank you for being such an amazing example for this tired 43 year old mom:)

hellobutter said...

We have visited the same places you have although we fight a different disease. Your words are exactly where my heart has been. We are no longer who we were...but joyful & thankful & living full in God no matter where He leads. So thankful I found you today from Ann's blog. Thank you for sharing your beautiful family, so inspiring to see God here! Love & Blessings, Tina
www.hellobutter.com