a day in the life, part one
I remember some time ago I wrote about how you begin to get comfortable in the hards, especially when the hard lasts longer than you would like. I typed something to the effect that you hunker down, settle in and it becomes increasing difficult to remember what life was like before the hard....even though a large part of you yearns for that easy way again. Well, that is exactly where we remain. No matter which side of Heaven God chooses to heal Colby, there is a kind of mourning of the way things used to be...when my biggest worry was trying not to leave a child forgotten at an extracurricular activity or what was for dinner. Even if Colby lives to be eighty plus ten, there has been a new revelation, a deeper knowledge of Him, that makes it impossible to view life here on earth with nothing less than an urgency to get "it" right...whatever "it" may be He has placed in front of me. I believe when He kisses your heart with the gift of suffering and pain, the mark left is deep and can be eternally changing if you allow yourself to wrestle with and rest in Him.
And wrestling I have been.
Normally, the new year brings me much joy and happiness. The old is gone. New things lie ahead. Only behind the shield of my eyelids this year, there seems to be only a deep, dark abyss when I look at what lies ahead. I cannot see how the ending to this hard will fare. Last year, I chose the word "abide" to dwell on, pray on and sit in for the year (well, it actually chose me). This year, I wanted to do the same thing. Originally, "peace" kept creeping in my mind. But as I walked through December feeling the gloom of a new year approaching, I felt like I needed to marinade in Biblical "hope" this year. I was talking to a sisterfriend the other day about the dimly lit mirror in 1 Corinthians..."For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I am fully known." (1 Corinthians 13:12) What does it mean to hope when you cannot see clearly? How is it different than faith? How can one stay in hope yet be true to reality? How do you live it out daily in the midst of the hard? It was a deeply interesting and satisfying conversation. I am finding it is perfectly fine to not have the answers to the questions. Yet it is in the wrestling that I am still learning.
When we found out the cancer started progressing again in the fall, we decided that we could not put life on hold for our family like we did the first time around. We were in full battle mode then...five alarm hide yo' kid, hide yo' wife status. Even though the disease is still five alarm, I think our thinking has shifted to an overall war mentality. We have settled in to being in it for the long haul--however long that may be. We are measuring every day as a battle to get through without too many mental causalities knowing that tomorrow the war will still be festering. It is definitely more about investing in today in light of eternity rather than what our flesh feels.
So it is once again, managed chaos around here...ok, with six kids it is always managing some kind of chaos. We roll with how Colby is feeling. If it is a good day, he goes to school. If he wakes up puking, well...that is a stay at home kind of day. Last week, he went to school four days. This week, he started his third round of chemotherapy so he just moved from the bed to the couch to the chair and back to the bed again. That is chemo living at it's finest. Cancer has dictated a lot of what we do and when we do it. It is forcing us to not make plans past a certain point or because we know it is not in Colby's best interest. My need to plan...to know is being squeezed out of me. At this point, I am happily letting go some days and allowing God do what He was going to do anyway before I meddled. But other days, the sitting in the holding pattern gets the best of all of us.
When Jonathan Canlas, who took our Christmas photos in October, found out that the cancer was growing again in Colby, he offered to fly back out from Hawaii and do a "day in the life" session with us. Right before Christmas, he came out and spent about thirty six hours with us...literally shooting from before the sun came up until many hours past it set. I am woman enough to admit that tears mixed with twinges of regret pierced my soul as I looked at our gallery. I wish I would have done this when the Bigs were little. We are on the edge of a changing season in our family...Kai is preparing for her last year of high school, so many unknowns with Colby, the Mids (Kennedy and Bryce) are just coasting through tween years and the Littles aren't quite as needy. I wish I would have done this when we were in the midst of pampers and pull-ups and bottles and sippy cups. The regret, however, did not overshadow the sheer joy I have at looking at each picture Jonathan made of us. If the house burned down, I would be standing outside naked...with my hard drives...and my kids. Priorities. So this is just a small sampling of our days. Life is going on. We are continuing to strive for a normal in between the vomit, doctor's visits and hoping.
This round of chemotherapy will be his last one before we head out to University of Florida for his vaccine. Each round of chemo has taken a little more out of him in terms of being sick and tired. We are excited to try something that does not feel like it is taking you to the brink of death to cure you. We are trying to significantly change eating habits as well. We know way more about whole eating than I care to think about...but that still does not make it easy to walk away from the Krispy Kreme donut. We have investigated so many alternative treatments...the gleaning of information out there can be overwhelming. We have listened (and follow-upped) to many well intentioned family members and friends. Being parents responsible for making true life or death decisions when your child is fighting to live is mentally exhausting. Paralysis by analysis is in full effect. We know there are some things that we just are not going to do or pursue...no going on an expedition to the remote part of Antarctica to find a rare whale species that only comes out between the hours of 3pm and 4pm. We are wading through what is reasonable and makes sense to try given time is not our friend.
Colby update: Colby has been receiving chemotherapy since November in hopes of slowing the progression of the cancer while his vaccine is growing. We have heard from University of Florida that Colby's vaccine will be ready at the end of this month. We are planning on being back in Gainesville, FL from mid-February until mid-March for about a month while Colby receives prep treatment and his vaccine. After he receives the vaccine, it will be a wait and see and pray that it works. Our hope is that it will work to kill the cancer cells or stop it from progressing. We are also researching other options in the event the vaccine does not work.
Colby, as well as all of us, continue to try to keep our spirits up even though we all have moments of sadness. Being busy with other activities helps. Focusing on Jesus helps even more. Having a great support system of friends and family who continue to pray for us as the road becomes longer has been a blessing. Our prayers continue to include...
God's will be more important than our wants.
God's complete healing for Colby...that these rounds of chemo slow the progression of the cancer and that his body recovers from the chemo trauma as well as stays strong.
Grace and patience with each other in our weariness.
God's continued guidance on what to do next and working out all the little details as Bryant and I head to Florida with Colby.
God stands in the gaps for the children left at home.
We continue to look for Jesus in our dailies.
(All photos taken by Jonathan Canlas)