Ashes and Hope

I had the privilege of leading the folks of Hope Chapel in an Ash Wednesday worship service tonight. I wanted to share my opening/welcome words in hopes that you'd be encouraged at this beginning of lent.

Ash Wednesday is about death.

For some, death isn't something we like to think about. It's dark, depressing-- a thought to be avoided. For you, Ash Wednesday can be a beautifully sobor dose of perspective. There is some urgency to God'scall on your life to love him with your whole heart, soul, and mind, and to love your neighbor.

For others, death may seem all to near. Just six hours ago, Hannah and I slid into a pew in a chapel in Winston Salem for the funeral of a 23 month-old toddler named King*, who died of leukemia on Friday. We wept and mourned the inexplicable loss with the people there. This should not be so. Many of you here have had difficult months and years and you feel the reality of death. For you, Ash Wednesday can be a beautifully hopeful reminder that there is MORE. Lent begins with Ashes but ends with Resurrection. Hope prevails. Death has lost its sting.

So wherever you are tonight, welcome. 

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*Hannah also wrote up some thoughts about today....

Today was Baby King's funeral. To say that his funeral was beautiful and honoring would be an understatement. The room was filled with his family, friends, and beloved nurses, and I sat and wept and ached for heaven.

Michael sang the song, Psalm 126, during the service:

Our mouths they were filled, filled with laughter

Our tongues they were loosed, loosed with joy

Restore us, O Lordea

Restore us, O Lord

Although we are weeping

Lord, help us keep sowing

The seeds of Your Kingdom

For the day You will reap them

Your sheaves we will carry

Lord, please do not tarry

All those who sow weeping

Will go out with songs of joy

The nations will say, “He has done great things!”

The nations will sing songs of joy

Restore us, O Lord

Restore us, O Lord

Some words for Watts on his first birthday

With Piper we started the tradition of writing letters to our kids on their birthdays. Here is Watts' one year old letter from his papa.

On bittersweet encounters

We've seen this play out all to often over the past few weeks. An elevator ride, a wait to be "buzzed in" to our wing, a few moments of silence with a stranger who, as we both know, has some major life circumstance in common. We both have (or know) very sick children who we love a great deal, and mostly we don't say it out loud. Sometimes, though, silence is broken and the heavy air of sadness and weariness is pushed into. A connection is made and it always feels bittersweet. There is an understanding that can't be replicated, even by the most sincere, empathetic hearts of friends and family. They are walking, or have walked, the same paths as us. They know the feelings of parenting a sick child, and it feels good to be understood, even if for a 30 second exchange. But then there is the reality that we both have sick children. Really sick children. Some of our children won't be victors over their illnesses, and we all know it.

Tonight I met a sweet family in the lobby of our floor whose son had been treated at Brenner a number of years ago. They shared with me that he is in heaven now. They listened to my story and asked if they could join us in praying for Watts, and encouraged me to have hope because even in this darkness, we can remember that death has lost its sting because of Jesus. Amen. It's comforting to hear from them. And it's hard, because it makes the reality of cancer feel more real.

It's just one example of these small connections (if there is such a thing as a small connection) that seem to be happening all over the place these days (from the hallway to the internet). It's the blessing and burden of connection, and just one more aspect of this new life that we're trying to figure out.

The one about being in the hospital for weeks...

By my count, today was our 16th day at Brenner. We were actually at Moses Cone in Greensboro for an additional day and night, so we've been in hospitals for 17 days. The first 10 were spent in the PICU, and now we've been up on the 9th Floor for a week. In the words of a great song, "this aint no place for the weary kind".

When we first got up to our room on the cancer floor, I was so tired from sleeping in the bright fishbowl of the PICU that I snapped at our nurse when she came in to take vitals after Watts had just fallen asleep. "You know, you have a real knack for timing".  I hardly ever say things like that out loud. Desperate times. "I'm really sorry for saying that", I told her about a minute later. 

Hannah and I have mostly taken turns feeling worn out and discouraged, but sometimes those moments (hours, etc.) overlap and we clash. It's hard to have energy to fight well at home under normal circumstances; but here, with no space and nurses coming in every few minutes and a sick baby in the crib beside us.... this is no place for the weary kind.

So we're trying to lean into this cycle of continual forgiveness and grace up here on the 9th floor. On the one hand offering space to process, and on the other pursuing the one who's walling themselves in or running for the hills. What a gift to remember the Gospel that says God is so eternally patient with us.  We most certainly are the weary kind, and we are learning to love each other better in this season.

A great thought from Henri Nouwen about this subject:

Community is not possible without the willingness to forgive one another "seventy-seven times" (see Matthew 18:22). Forgiveness is the cement of community life. Forgiveness holds us together through good and bad times, and it allows us to grow in mutual love.

May it be so.

Watts laughed today!

The title pretty much says it all. It was pretty great to hear a giggle after almost 3 weeks. Still looking forward to getting back to THIS.

As a father carries his son

Papa & Watts, the day after he was born.

One of the heart-wrenching parts of having a really sick child is the immense feeling of helplessness in watching and waiting. Deep rooted in the heart of parents is this instinct to protect and comfort their children. That feeling is deepened and its weight multiplied when the child is defenseless and sick. I've been thinking about this picture of me and Watts on the day after he was born; how small he was and completely dependent on Hannah and me. I remember it with Piper, too. When she was born, I had this spontaneous and surprisingly clear feeling: I would give my life up for this child, no questions asked. It's more than love at first sight– it's complete dedication at first sight, running deeper than instincts even of self-preservation. The love of a father for his children. It changed my life and softened up these places in my heart that had grown hard. It's what made me write THIS SONG for Piper and THIS ONE for Watts, and it has been changing my perspective about everything ever since.

I remember reading about a father who pushed his disabled son on long races and triathlons, even carrying him for portions. In some ways, I feel like Watts and I are on that path, at least for a few years. Don't get me wrong, Hannah and I are partnered in it, of course. Piper is already seeming to cheer him on. And we've got an incredible community supporting us. But he just has one papa who is going to always be in his corner of the ring; always going to be willing to pick him up and carry him for the last mile of the race. A few days ago I read this beautiful passage in the old testament in the Bible– I may have seen this in the past, but I don't remember– where God describes himself with the same imagery. He's talking to his people, who are afraid, and says this to them:

The Lord your God, who is going before you, will fight for you, as he did for you in Egypt, before your very eyes, and in the wilderness. There you saw how the Lord your God carried you, as a father carries his son, all the way you went until you reached this place.”

So I've been thinking about this a lot. Not in order to make some profound spiritual point, but thinking about Watts and how much I love him and would do anything for him, and how thankful I am to know a God who relates to his people the same way. There are lots of other father/son pictures in the scriptures, of course (and the entire christian gospel is based on the idea that God's own son was given up so that we would be adopted), but for this week, the Father who carries his sons has been a comfort and relief to this papa's soul.

Visiting

We've been overwhelmed (in a good way!) by the love and support that we've been shown over the past couple of weeks. Many of you have asked about visiting us at the hospital and we wanted to let you know that we appreciate that. Things have been, and continue to be, really unpredictable in terms of daily schedule. There are teams of medical staff from at least 5 departments who are checking in on Watts throughout the day, plus the frequent nurse visits for his 10+ meds, antibiotics, etc. and normal hospital stuff. Additionally, Hannah is pumping every couple of hours to keep her breastmilk supply up, and we are trying to spend time with Piper whenever we are able. All of this adds up to hectic and exhausting days. That said, we love and miss you guys. If you want to come by the waiting area and say hello (and bring us coffee?!) please text first and know that we may not be able to visit for more than 5 minutes, or might get suddenly pulled away. We're not having visitors in Watts' room right now because of his compromised immune system. And if you are or have been sick, please wait to come see us. Thanks for being gracious with us in all that.

Friday morning

So thankful for a mostly peaceful night last night. The methadone, ativan, and morphine cocktail made Watts feel better and he slept most of the night. For a couple of hours before he fell asleep, he laid peacefully in his bed as long as one of us was lying beside him, hand wrapped around his back. Even with sedation involved, it was sweet time. Before all of this began, I (Michael) had been reading a book by Jean Vanier called Becoming Human. In the first chapter, on the subject of loneliness, he writes:

"We were all conceived and born in littleness and weakness. We could do nothing by ourselves. We depended totally on our parents for food and for protection; our greatest need was for their enfolding, protective, and stimulating love. Children cannot live and grow without that love. For a human being, love is as vital as food. When children are loved, they live off trust; their bodies and hearts open up to those who respect and love them, who understand and listen to them. They begin to blossom."

I kept telling half-asleep Watts that we LOVE him and that we're not going ANYWHERE. That we are with him in this for the LONG HAUL. Things that go without saying, but we are saying them anyway. I want him to hear those things all the time.

In addition to the "comfort drugs" I mentioned above, Watts' new chemo routine, which began yesterday and will continue for 15 more days:

Daunorubicin (yesterday and today)
Vincristine (every 6 days)
Dexamethasone (daily)
Cytarabine (daily)
L-asparginase (starting in a week)

Out of the PICU, up to the...

Here we are, our home for the next month or so. Today started off encouraging, with our PICU medical crew talking very positively about Watts' progress and recommending that he be moved up to the 9th Floor (which is, if we're speaking plain, the kids cancer floor). Prep went well and Watts seemed relaxed and mostly comfortable breathing on his own and coming off of the heavy sedation and pain killers.

[Let me pause here and say that it was quite sad saying goodbye to the nursing staff in the PICU. They are incredibly skilled, caring, and attentive, and we were constantly amazed by their work ethic and compassion. They tangibly loved Watts above and beyond expectation. We may actually end up being friends with a couple of them!]

We were moved up to Floor 9 around 2pm and shortly after that Watts started becoming more agitated and unable to be comforted. It was strangely similar to the symptoms that actually started all of this. Unable to figure out exactly what was causing the discomfort, the new nurse staff gave him some morphine and began the scheduled blood transfusion (trying to raise his platelets a bit before the new chemo treatment begins tomorrow). Watts continued to get worse with his right eye becoming red and swollen and eyes sort of darting and crossing.  We had been telling our new nurse that this wasn't normal, but at this point we called the main desk and said we needed some help and described what was happening. In about 5 minutes there were 10 or more nurses, med students and residents in the room. They immediately stopped the blood transfusion and morphine, consulted again with our doctors from PICU, and came up with a new plan for getting Watts to feel better. They also determined that a lot of what's happening is basically withdrawal from the sedation and painkillers he's been on. Apparently they weaned him from those medications a little more quickly than they should have. So he's now on methadone to help him transition to be sedation-free.

[Sidebar: one of the scary things about being out of the PICU is that it feels like we're much more "on our own". For the past 9 days we've been in a glass room (literally!) and had all variety of medical staff constantly checking in, with a nurse assigned only to our room. Now, we are making more decisions, watching and determining for ourselves what significant changes are happening with Watts. We are the ones reminding the new staff what's been going on over the past 9 days. Of course there is communication between the departments, but on small matters our responsibility seems to have ramped up a lot.]

Unfortunately, in all the shuffle, his NG tube (which goes in through his nose and down into his stomach) had come untaped and slid partially out. It took 4 excruciating attempts to get a new one in. I think these were some of the hardest moments yet-- having to physically restrain our son while a tube is pushed down his throat and listening to him gag and scream. It's a feeling I wouldn't wish on my worst enemy. It's heart-wrenching to know you'd trade places with your child in an instant, but that it's impossible. It's obscene that a 10 month old should need these sorts of physically and emotionally altering treatments. Watts, our remarkably friendly baby who knows no strangers, is afraid of each new face that approaches. After waking up from 8 days of sedation, his new world is full of people pushing and poking at him, a body that hurts and can't be comforted. It's a cruel brokenness, one that we wish we could take on for him, and we're grieving these losses of innocence. Lord God, have mercy and give us some strength.

Monday evening update

Good day for Watts. His infection had gone more than 48 hours without getting worse (in fact, it's getting much better), so he was able to be rolled down to the Pediatric Surgery floor and have his "hickman line" put into his chest. This will stay on him for a long time– many months– and will be the access point to give chemo treatments. Here's what it looks like:

Watts has been a champ. The nurses all comment that he is remarkably calm when he wakes up from time to time. He seems to have some sense of patience, it's crazy.

While he was sedated for the hickman surgery, an eye-nose-throat doctor checked out his airway for any swelling and determined that he was in good shape to have his breathing tube removed (extubated). Lord willing that will happen tomorrow morning and then....sigh....we will move out of the PICU and onto the 9th floor, Cancer Floor. That sounds scary, of course, but it will be amazing to move to a slower paced area with a more private room. And, more than anything, it means that Watts' infection is on the mend and we should start to see the little boy we've missed so much this week.

support

Today we received a care package from our church family. WOW. I hesitate to even call it a care package because it was so extravagant and thoughtful. Gifts, food, gas cards, gift cards, and lots of beautiful letters and notes. What a blessing to be so held up in this season, and reminded that we are not alone. Thank you, Hope Chapel, we love you.

Songs in Room 623

Watts opened his eyes for a few minutes tonight! He'd done it a few other times, but this was my first time being there. I would never have thought it would be such a thrill to see my son simply open his eyes. He was sleepy, but was following my gaze as I moved around, and he was clear eyed. Beautiful. I brought my guitar up to our room today and so I pulled it out and sang him some old tunes from a really old pocket-sized hymnal. Sweet time.

Perspective

Over the past few days, several of our doctors and nurses and encouraged us to "just think about today".

What needs to be done today?
What are the mountains we are facing today?
What are the small victories today?

We're already realizing the wisdom of this as we go through waves of feeling overwhelmed. For me, especially over the past 24 hours, it seems to take nothing to make me weep. A kind word from a doctor. A new nurse telling us Watts looks handsome in the pictures we have over his bed. Reading Piper a bedtime story with a little boy as the main character. Singing her "Jesus loves the little children" as she falls asleep. Realizing I haven't seen Watts open his eyes in four days. Mustering up some strength in my voice as I walk in the hospital room and say, "Hi buddy, papa's here now". I feel like I've been grieving the losses that are coming our way over the next couple of years and, at the same time, fearing the reality that I don't know what those losses will even be.  

Just think about today.

   Or, put a different way:

Sufficient for the day is its own trouble.

We've felt incredibly loved and supported over the past week, held up and blessed by a community of those near and far. But, Good Lord, how the quiet moments are hard.