Love for Ellie: Surrender

I've been reading Father Joe's autobiography, The Four Gifts, as of late (which I highly recommend) and spending time reflecting on lessons learned along his path which in part permeate down to our journey. The subject matter and specific context is different but it has a familiarity of common themes that ring acutely true to our own adverse times. With every bump, every hospital stay, each surgery, the tense phone calls with insurance representatives now too numerous to count, the restructuring of work schedules to meet medical schedules, and the financial burden that follows it all....there is stress, worry, anger, frustration, impatience, and perhaps most of all there is fatigue. You wonder when is enough...enough? I try to rationalize where various feelings should go when the next disaster strikes and while decisions on that front get made regularly, there is always an overwhelming feeling on if the chosen way we go about things is the healthiest in the long run. I think we're keeping up OK, but the doubt still remains. Have I done enough? Have we researched enough? Could we try something new? Are we doing enough in the NOW to satisfy a life we have worked so hard to get back to but know can be ripped from our grasps at any moment? Why do bad things keep happening? Why us? Why? This thoughts will drive you nuts.

The damn milk was spilled a while back. Heck, the two gallons sitting in reserve in the fridge have sprung leaks as well. I may not have all the answers all the time, but I am quite aware that sitting here crying at the mess in front of me is an incredible waste of time. I know this and I relearn it on a regular basis. Doesn't mean I won't go back to some of the aforementioned questions again tomorrow when my son takes his turn under general anesthesia and we sit helplessly waiting for a positive outcome while we meddle in rare surgeries with no assurances in sight that this will produce a better outcome.....because no one can say for sure and I am not the one who has the power of the scalpel. But I do know better. Eyes have to come up from the puddle below, fully intent on focusing now to the horizon beyond, and they must be willing to surrender. If we can surrender our fear, our angst, and our worry....therein lies the ultimate Faith that will guide us through. Even though I do not believe you can ever say to a cancer patient that it is "going to be OK", fully embracing God's love and finding peace from releasing the burden of worry brings those very words to the tip of my tongue. So, this week I am surrendering (again). When properly done, there isn't anything we cannot handle through Faith and the specific, extremely welcome, sense of calm that comes along with it.

Where to begin with this past week. Polly's Dad had what was supposed to be a routine procedure for his heart late last week. This quickly evolved into a series of unexpected complications that stopped us in our tracks for most of the week as he spent about 5 days in the ICU. There is so much time spent focused on the cancer fight that it is very easy to forget how the slightest change to the support system can really shake you. We are elated that he has improved steadily over the past couple of days, was moved out of ICU last night, and if all goes well tonight he will be discharged tomorrow. If there was ever a reason to be thankful on a 4th of July in recent memory, this is most definitely it. Just in time as well for our next big event. Timmy's big eye surgery.

I don't know if you recall but Timmy was born with a rare genetic eye condition called Blepharophimosis, or otherwise known as BPES. The basics are this - he was born with a nonperforming muscle that is used to open his eyes causing his eyes to droop (known as "Ptosis"), his overall eye socket width is significantly smaller than an average person, and the inside lower corners of his eyes contain an extra piece of skin called a "epicanthus inversus". While there is not complete remedy for making his eyes look 100% normal, the goal is to use plastic surgery to manipulate the muscles he does have so that he can have normal eye opening function, as close to regular appearance as possible, and keep his eye sight at 100% (which it is now). If your pupil is covered more than halfway for a significant amount of time, your eye will begin to shut down. When he was 6 months old, we elected to have a silicone sling surgery performed from a renowned pediatric oculoplastic surgeon in the Bay Area. This attached his eyelids to muscles in his forehead allowing him to open his eyes and fully expose his pupils. He has learned to use these muscles extremely well. But we were fully aware the slings were temporary because his entire head and facial tissue was growing rapidly as a young kid. So long as his eye sight was OK (he does wear glasses for a slight astigmatism), we would want to hold off until he is 5 or 6 to do the permanent surgeries which involve epicanthus corrections and a permanent sling using fascia from his own leg. Our most recent trip to the eye doc revealed his eye sight had begun to worsen, unfortunately, as the silicone slings are getting too relaxed. We are now in a tough spot because the surgeries have to happen a about 18 months earlier than we wanted....and of course during a time when Ellie is still on active treatment herself. There was a concern the desired permanent result may not be achieved since his face is still on the young side and thus the worries surfaced this past two weeks all while trying to get a grip on Polly's Dad's status.

Thankfully we were put in touch with another pediatric surgeon who specializes in the epicanthus surgery up at UCSF. At the first call it was going to be two months until we got in. And then Polly does what she does so well on the phone. Kick some ass. Sorry to be blunt, but it's true and if you have seen what we have seen from 2+ years in the cancer world, you would understand that being nice sometimes is just not in the cards if you want something done on certain days. We were seen two days later and surgery (which is only performed on Fridays with this doc) found a cancellation we could take the place of tomorrow morning. So now it is my boy's turn to put on his brave face. Unlike the surgery at 6 months, he knows fear now and we have been trying to prep him for it all week (ice cream for dinner tomorrow night if anyone wants to come over). You know its funny, my biggest worry coming out of the twins birth, long before cancer entered the picture, was that Timmy was (and still may) get some unwanted comments thrown his way about his eyes from other children. We figure this may show up around 2nd or 3rd grade. But the worry is so much less because Ellie is right there beside him. (Quite honestly, no tormentor of Timmy will ever want to mess with Ellie on steroids...Polly and I don't mess with Ellie on steroids) Her own battle has made her stronger than we ever thought possible. Timmy draws strength from her now even though he may fully recognize its value now. Twins will never allow themselves to be very far apart.

It does not matter how routine surgeries get between both our kids. Having the doc come wheel them out of the prep room from us and saying goodbye is a horrible, gut wrenching feeling. If we experienced it 100 times, the emotions would be the same. Neither of them ever did anything to deserve these early life struggles nor the vast amounts of normal childhood they have missed because of it. There again is the call to Surrender. Oh no, not to give up by any means. This is the call to know that following those 3-4 agonizing hours in the waiting room tomorrow and that step we must blindly take from one side of this to the other, there will be the start of a better life for our amazing child. And he'll get to see the world with eyes wide open, the way it was meant to be. We're praying for a successful day tomorrow and patiently waiting for Faith to guide us on what the next step is after that. I'm surrendering to God so that the worry of that next step is minimized and I may freely and more powerfully concentrate on that hug I'm gonna give him when he wakes up tomorrow.

The second night at Camp Okizu during family weekend is always set aside for a dance party. The staff does an awesome job of converting the patio in front of the main dining hall into a large dance floor complete with lights, props for decorations, huge speakers for music, and a DJ. Having a large walking boot on my foot and only losing the crutches a couple days prior at that point precluded me from taking part in the festivities. (BTW, no more boot now. Walking normal again after 12 weeks since my own surgery. Still not running or playing soccer, but all in good time....believe me I am extremely thankful for the ability to just walk). Anyways, during this year's trip I was fortunate to bear witness to a pretty amazing moment in time. One that captures the essence of Okizu perfectly and reaffirms all of us parents of childhood cancer patients that there is a light down this road somewhere. We may not see it, but its there. A couple we had met earlier in the weekend told us of their story which began with them marrying and wanting to have kids soon thereafter. Both were new immigrants to this country, both worked full time out of necessity and both had very little spare time because of demanding work schedules. They tried for several years to have a child and for whatever reason, they could not. The pain and anguish in her representation of how long that part of her journey seemed was evident in how she hung onto the words that described the sheer elation she felt when they finally were told their miracle had happened seemingly months before they were about to give up for good. Nine months later they became official parents only to find out their newborn son had down syndrome. Seven years in the making, they clawed their way through and found a wonderful life with a very dependent young boy. A few months before his 8th birthday, their son was diagnosed with leukemia and underwent the same protocol that Ellie is on now (only for boys). 3 years of chemotherapy came and went, he was in remission and all was well. They were out celebrating one afternoon another month gone by to his new found freedom being off treatment. The whole family had gathered for his birthday. As she got to this point, her voice started to quiver (there is no shortage of kleenex at Camp Okizu). Just after returning home from the party, they received a call from the doc that his latest off treatment blood work came back with signs of relapse. He had to now repeat the three years of chemo all over again. One thing after another after another. It hits all too close to home. But on this dance party night, two counselors scooped him out of his seat on the steps near where I was hanging out and took him down to the floor. Flanked on either side by folks helping him get his dance groove on, a smile larger than life came across his face and stayed there for the duration of about three entire songs. And standing about 10 feet away, capturing it on iPad video, was his mom with a smile of her own and tears of joy streaming down her face. As one of my colleagues said a few days later when I was describing the scene to him, "If that wasn't Jesus smiling with him, I don't know what is."

You have to take these moments and fully immerse yourself in the beauty of their simplicity. There may or may not be more of them ahead. It has to be about Now. Learning from each other on when to let go of fear and compounded stress is an absolute gift. I think pain is inevitable in what we've been through and I know I am at fault for giving into the stress of our day to day on many occasions. Ultimately these battles are going to be won by our kids and if surrendering to a trust of blind faith is what it takes to facilitate victory, then count me in. COUNT ME IN.

Besides, now that my foot is healed, we got a lot of dancing to catch up on! Please say a prayer for Timmy tomorrow, Polly's Dad Randy getting discharged, and always always always a few words for my sweet Ellie Belle.