The Beach And A Picture

For many weeks now I’ve tried to articulate some of the feelings and experiences that have accompanied our grief.  But while words once served such therapeutic purposes, they seem to have gone away and left me no map, no trail of crumbs to seek them out.  As much as I’ve longed for their return to aid me in my desire to process everything, I’ve had to learn to simply wait patiently.  I cannot force their return, they must come back in their own time.  Everything is still so raw and fresh – after all, it has only been a few months since we spoke through the tears our final earthly “I love you” to our precious boy. Perhaps part of the reason I must continue to wait is that while writing has always helped me to process, there is simply too much yet to try and work through.  It’s simply too soon.

One of the hard (and ongoing) lessons we’ve experienced in this life is the idea of waiting on the Lord.  And while there are lots of simplified phrases on this topic (often taken from out-of-context Bible verses and put onto a piece of wall art or on a picture accompanying a beautiful landscape), there is a very real and important concept of acknowledging the sovereign designs and actions of God and allowing Him to direct us, and not try to push things along to fit our timeline.  Moses wanted to move things along and that ended in disaster before God led him in the wilderness for forty years until His time had come.  So in the meantime we’ve been learning to sit in our grief (sit, not wallow) and trust that God is currently working as well as preparing us for whatever He will do in His time, and not try to rush things along ourselves.  Much easier said than done.  So quickly written, and yet so much depth behind a few simple sentences.

It is in the midst of the waiting we found ourselves on a much-needed getaway for us to spend time with each other and our other boys.  Our boys who have waited patiently for the past couple of years for us to give them the attention they need.  It was during this time that the memory of a picture brought back a flood of emotions, and with them a few of the words that have of late been so elusive.

In the fall of 2017 we had the opportunity to spend Thanksgiving on the Gulf Coast – along the 30A corridor in the Florida panhandle, which has quickly become one of our favorite destinations.  During this trip we went as a family for a daily excursion walking around the different areas of Panama City Beach, including the shops along the pier.  It was at a moment during this trip that we took a picture of all three of the boys together – one that ended up on a canvas print hanging in our bedroom.  A snapshot in time of three brothers spending time together.  A memory of a family enjoying a day together.  A memory of a cherished time captured in a photograph.

Fast forward to present day when, on our current getaway, we found ourselves once more at the shops by the pier in Panama City.  As we walked, we came upon the very spot where we had taken the photo.  It seemed like only a short time ago when we had all been together in that same spot.  Now, walking by, it was if an arrow of emotions shot from the bow of that past memory pierced our hearts.

Don’t get me wrong, it’s not as if the emotions aren’t always present.  They are always there, lurking in the dark corners of our hearts and minds waiting for their chance to jump out and overcome us for a time before retreating to the background where the stay, waiting for their next opportunity.  During those in-between moments we are able to more or less function through daily life, always aware of but not completely hindered by their presence.  But when they decide to come out they are relentless and unstoppable.  We can exhaust ourselves trying to fight them back for a moment, but have learned to let them have their way.

Now, our memories having been stirred, those emotions started creeping out again.  Each one it’s own animal with origins rooted somewhere in our own personal past, the happiness we had, and the loss we now experience.  Each emotion simultaneously fighting for our primary attention and working in harmony with the others to form a symphony of grief within us.  Deep sadness at the absence of our dearly loved boy who should be with us, splashing through the surf and building sand castles.  Anger that someone so precious and innocent should be ripped from our arms and robbed of these family moments.  Guilt that we could even bring ourselves to have a vacation, let alone enjoy ourselves, when Finn is not with us.  Regret of not throwing practicality to the wind and having more of these moments together as a family while we still could do so.

These are some of the more prominent feelings that are ever present, coming and going like the waves that crash upon the sandy beach we are on, then slowly recede back out to the ocean depths before coming back for more.  It is in the midst of these waves we sit on the beach, knowing that the tides will come in and go out, the waves and the currents will sometimes be rough and sometimes be calm.  At some point we will get up and walk along the surf, but for now we sit.  Sit and wait for the Lord.  Sit and remember a photograph.  Sit on the beach.

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Merry Christmas

A simple tradition of hanging the family stockings. As with so many other moments and traditions this Christmas, it is a vivid reminder. A hot iron shoved into an already raw and painful wound. Christmas used to hold such joy and wonderment, and while those feelings are still here, so is something else. Sorrow. Intense, bitter sorrow. We wish we could say that the magical Christmas spirit has eclipsed our mourning and has brought such joy to our lives, but that isn’t reality. The reality is that the loss of our beloved Finn hurts, and hurts deeply. And that hurt exists simultaneously with the joy of the season. Two contradictory emotions not at war with each other, but coexisting in our hearts and minds.

We honestly don’t know yet how to deal with it all. Everything is so fresh and we still feel as if we are in a fog of shock and disbelief. We know that the pain of Finn’s loss will never go away in this life, but we know that with time we will learn to adapt and live with the pain. And so with that in mind this year we are made more intimately aware of the tremendous meaning of the Christmas season. The hope that we have to one day see Finn again, and to have our pain and sorrow finally taken away is only made possible through the Nativity. One moment in our time, planned from eternity past by the Father, Son, and Spirit and foretold for centuries prior, to start an earthly work to reconcile us back to God. In this we rejoice in the midst of our sorrow, for in this we have hope that Finn’s suffering is no more and one day we will be reunited. One day the tears that we now shed so bitterly will be wiped away.

But for now we still shed tears. And though we mourn, it’s through our tears that we earnestly wish you all a very Merry Christmas.

🥑💛

Celebration Of Life (NY)

Friends, we want to share with you the finalized service details for NY.

Please join us on Saturday, January 12, at 11:00am (ET) for a celebration of Finn’s life at Eastern Hills Bible Church (8277 Cazenovia Rd, Manlius, NY 13104).

In keeping with the spirit of celebrating the remarkable life of our avocado-loving superhero, please join us in not wearing black and keeping a more casual atmosphere. Finn Fan shirts, superhero shirts, and avocado attire are all welcome. In as much as we are heartbroken and will be sharing our tears with you all, we also mourn as those with much hope and want the joy that Finn brought to our lives to eclipse our sadness.

A reception will follow after the service.

In recognition of the care given to Finn, we request donations be made in lieu of flowers to one of these organizations:

Mayo Clinic, Pediatric Rhabdomyosarcoma Research Fund, Department of Development
200 First St. SW, Rochester, MN 55905

Shepherd Therapeutics, 1212 Laurel St, Nashville, TN 37203
http://shepherd.bio

Celebration Of Life (TN)

Dearest Finn Fans, please join us this Saturday, December 8, at 11:00am for a celebration of Finn’s life at Thompson Station Church (Thompson Station, TN).

In keeping with the spirit of celebrating the remarkable life of our avocado-loving superhero, please join us in not wearing black and keeping a more casual atmosphere. Finn Fan shirts, superhero gear, and avocado attire are all welcome. In as much as we are heartbroken and will be sharing our tears with you all, we also mourn as those with much hope and want the joy that Finn brought to our lives to eclipse our sadness.

A reception will follow at the Franklin Elks Lodge in Franklin, TN. A private burial service will be held at a later date. A celebration of Finn’s life will be held in Syracuse, NY in January. There will be no calling hours.

In recognition of the care given to Finn, we request donations be made in lieu of flowers to one of these organizations:

Mayo Clinic, Pediatric Rhabdomyosarcoma Research Fund, Department of Development, 200 First St. SW, Rochester, MN 55905

Shepherd Therapeutics, 1212 Laurel St, Nashville, TN 37203
http://shepherd.bio

Angel Heart Farm, PO Box 330274, Nashville, TN 37203

Finn Sawyer Schafran

Finn Sawyer Schafran

Friends, this morning Finn finished his race and went home to be with Jesus. He ran the race that was set before him, and he ran it with all his might. He fought the good fight and finished the race. The impact that such a small boy had on such a big world is astounding.

Words cannot express the sorrow and pain we feel at his loss. We long for eternity when we will once again hug and kiss our beloved son. We cling to the promises of the Gospel, even when we struggle to believe in the moment and we feel grieved even unto death.

Thank you for your ever present prayers and support. We ask for continued prayers and for patience while we grieve and care for our family during this time.

“Whom have I in heaven but you? And there is nothing on earth that I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” – Ps 73:25-26

Update

Hi, Finns Fans – It’s been a couple days and we wanted to update you on our little guy. After a good start to the week and things looking like they were heading in the right direction, things took a step backwards, plateaued, and now have gotten worse. Finn’s abdomen has swollen again, causing him much pain and discomfort. His breathing has become more labored and the complications from an evil cancer seem to be stacking up as he also has developed a fever.

We don’t know how much time we have left, but we still fight – we will fight and never stop fighting and praying for a miracle until the end, whatever and whenever that may be.

It is beyond heartbreaking as parents doing all we can for our sweet child and being helpless to accomplish the results we want. How quickly the tears come when we see pictures of Finn from just a few short months ago; pictures of a vibrant, healthy, joyful boy who lies now in bed wasting away as cancer continues to ravage his precious body.

We want to continue to share Finn’s story with you, no matter how hard it is to see. This is the reality of life with pediatric cancer. It is utterly devastating and is breaking our hearts more than we ever thought possible.

Update – New Meds

Hey Fans – After several weeks of waiting and doing all we could for Finn while watching him slowly but surely decline, late last week we FINALLY got some preliminary pathology information back. Unfortunately both St Jude and CCTDI were unable to offer any new information or suggested treatment options for Finn. The Mayo Clinic path lab, however, was able to obtain some helpful info, and while we start to act on the preliminary results they continue to dive deeper and search for more answers. We are eternally grateful for the hard work of so many brilliant minds who have spent so much time trying to save our Finn!

Today we were able to get two oral chemotherapy drugs that each target a different gene mutation pathway, but work synergistically with each other . In the midst of the massive amounts of genetic crap that make up Finn’s cancer, the lab suggested that these two drugs in tandem may be the most effective treatment of everything that is available. We started these drugs today, praying fervently for their effectiveness.

We are under no delusions as to how bad of shape Finn is in and that this treatment is a long shot, but as we have the ability to try and there is scientific data supporting us, we must give it a try. There is still a fight to be had and so fight we will. We continue to desperately cry out to God for a miracle and for our son’s life. Please continue to hold Finn and our family in your prayers.