Dear Josiah,
On this, your 15th anniversary of life in our world, I have things to say to you. I’m pretty sure that doesn’t surprise you, since you’ve been with me this long, so I’m going to launch right in.
Thing #1: Your life is not normal. It was very normal for awhile. Maybe even boringly normal. But at year 11, your life took a turn and you have lived every day since inside a fishbowl with sad faces looking in and sad voices asking, “So, how is your dad?” You have handled it brilliantly. Valiantly. Without complaint and nearly without a hitch. You’ve learned to respond to those questions with kindness, and without saying too much. You’ve learned to be in charge of things like mowing the lawn and hauling the garbage and scraping car windshields on frigid days. You’ve learned to use a feeding tube and a suction machine and you’ve faithfully learned to care for the dad who used to care for you (and still does – but in other ways.) This is big and impressive, but it is not normal. And in the midst of all the absolutely-not-normal circumstances, come absurdly normal things like Spanish tests and field trips and the way your mom forgets to give you lunch money for so many days in a row. Sometimes the normal and the abnormal intersect at the strangest points and everything feels incongruent and upside down to me…but not to you. You’ve learned to weather the waves as they roll in, you’ve learned to shift your weight and stay standing through it all. It is a great skill, but it is not normal.
Thing #2: Your life is not small. It is giant. You are an overwhelmingly abundant gift to me, to our family, to your dad. You are important to us in ways I can’t package into words well enough. I don’t know what I would do without you. Your smile is real and ready. Your heart is tender as the day is long. You’ve learned compassion in the crucible of suffering and you will be an enormous gift to a grieving world. Enormous.
Thing #3: You are only just beginning. You live in a home that is currently focused on endings. But you are at the very start of all you will become and experience and dream and create and achieve. The future stretches out wide in front of you, as big as the mountains that surround our city. You will launch and love just that big, because you are just beginning.
Thing #4: This is the big one. The most important one. You are not a victim. Your days have been planned with purpose by the God who loves you more than life. Our pain does not take Him by surprise and our struggles do not sideline His strategy. In fact, if we’ll let Him, I believe He will use the game-changing circumstances of life to work beyond our dreams. The pain in your life has made you strong and sensitive. It has made you one who will fight for justice and for the dream of His kingdom coming to our right-now, right-here world. You are not a victim.
Thing #5: Near to my heart is this last Thing. You are not fatherless. Sometimes throughout our journey, I’ve cried over the things you have not been able to experience with your dad, because I know how badly he’s wanted to be everything you need. Sometimes, I’ve tried to step in and be that or to send in a substitute, but then I realize: you don’t need us to be your substitute dad because you have a real dad who loves you beyond reason. He can’t take you golfing, but he can (and does) spend long hours praying for your destiny and not very many sons can say that. And you also have a Dad – the eternal One who shepherds your heart and directs your steps. You are not alone and will never be. Not ever. Because you are not fatherless.
So, on this big and beautiful day, I celebrate your life – the fifteen years that you’ve packed away and the decades that are to come. May His presence be your reward as you pursue Him with a vengeance.
I love you more than words and bacon,
Mom
I have started and stopped and deleted posts about a million times in the past few weeks. I meant to write about our Christmas and how I spent my month off of work, about Steve and his journey, about my shiny, new in-development GRANDBABY (eek!)…so many things. But words felt slippery and pale. Any attempt to rope them together and form complete, cogent sentences was – and I do not overstate this – absolutely dismal. Not just in terms of the writing (though the writing was bad, bad, bad), but also in terms of how I felt as I trudged through the tunnel of emotions and angst that seems to lead from where I am right now to anywhere I want to go. Want to remember something good from the past? Gotta go through the tunnel. Attempting to dream about the future? Tunnel. Figuring out how to manage life in the here-and-now? Well, I think that part actually is the tunnel.
I’m not apologizing for not writing and I know nobody is wringing their hands, wondering what in the world is happening in my life. But I sometimes wish I was able to record this season more consistently. Not for you, but for me. For my family. For a day when it won’t be as painful to look at. But the fact remains, I didn’t. Not in journals. Not on napkins. Not on this blog. There was virtually no writing in December.
Quick recap: Christmas was good. My time off has been…hard. New Year’s was…especially hard. I’ve always loved the newness of New Year’s. I love setting goals and dreaming dreams and making new, fresh systems which I probably won’t sustain, but it’s fun to create them. I’m a dreamer/planner by nature and I LOVE fresh starts. Mondays and New Year’s were made for girls like me.
But this year it was sort of awful because this year, it’s just been really hard to dream. Reasons abound. You can probably figure them out even better than I can, but I’ve felt very stuck in a land with no dreaming. Right now, my family feels wedged in a narrow passageway between earth and heaven, unable to move forward or go back. People – countless people – encourage me to absorb every moment, to savor this time and I appreciate the sentiment, but I’m telling you: it’s harder than it seems. It’s like labor. You know it’s leading to something so beautiful – fresh, new life – and you even know somewhere in your pain-addled mind that the process itself is beautiful, but had someone told me to relish every moment of those contractions I would have punched them in the eye. Watching my beloved suffer as he is right now is…um, wow, I have no words. Watching his body betray him as he desperately tries to hold onto the things that make him real and alive and Steve is more painful than I have ever imagined anything could be. That’s not to minimize the grace that God has given us to endure this – it’s there and I can feel it – but I would be lying if I told you there were no moments when I feared the grace would run out before the day was done. Many days, I fear it will run out before the day has begun. Every night, we are exhausted and thankful that we made it through another day. Every morning, I beg for strength for the hours ahead. No drama here, I promise, just real talk from our real life.
All that to say: I felt fairly stumped as I attempted to establish some New Year’s goals or resolutions. I read several blog posts from people I respect, some convincing me I should achieve more in 2015, and others telling me to do less and be more. Some inspired new fitness goals. Some laughed calorie and carb counting off the to-do list. None of them were wrong, but none of them were me. What did happen in reading other people’s resolutions, though, is a determination inside of me to flat-out refuse to live a life with no dreams. Without vision, we die. We fall asleep with our eyes wide open.
So, I guess my first resolution of 2015 is simply the decision to dream again. To look through the tunnel and into the future, understanding it is murky and muddled, but it is still mine and I am still alive and life is for living. I’ve opened the door to vision that seems small (watching all of Friday Night Lights with Steve) and vision that seems big and impossible (spending some extended writing time in Italy). I’m dreaming through prayer and my pinterest boards. I’m dreaming with trusted friends who hold my heart and secrets safe. And I’m dreaming with Steve, who knows me better than anyone and understands my need to toss some lifelines out beyond our stormy seas and onto the unnamed, unknown shoreline. He more than anyone is able to help me weed out the flimsy, flighty stuff that sparkles on the surface but produces little and get through to the meaty and meaningful stuff that he knows will produce something eternal and deeply satisfying. I am soaking in his wisdom and so thankful that I have it while I look out into the great unknown.
That’s my update. It’s not pretty, but it’s real.
With hope,
Bo
The hardest question I’m asked right now – the very hardest question – is “How are you?”
It’s not hard because my life is bad. It’s hard because I’m just feeling...so many things. The range of emotions I feel on any given day swings wildly from calm and grateful to confused and frustrated. My family is blessed to be together on this road, but we are weary. Steve is weary. His body is used up and his spirit is struggling to stay comfortable in such ill-fitting skin. It’s almost like the inner Steve is growing as rapidly as the outer man is failing and like a baby outgrows the womb, the real Steve is ready to breathe the fresh air of real life. The process is the most beautiful and brutal thing I’ve ever witnessed.
 This photo will always be precious to me because I know when it was taken. I know those smiles are as real as the tears that fell just moments earlier. I know that dancing happened immediately after. This picture is for me, a little preview of heaven.
We talk often and openly of heaven. In fact, we talk about it in ways that might make other people uncomfortable, but heaven is not a cheap consolation prize to us – it’s the best case scenario. We talk about the people he can’t wait to see (his dad, my grandpa, Wendell Smith). I talk about what the libraries must be like and how it must look right now, all decorated for Christmas, and he talks about the golf courses. Yesterday, as I was pouring yet another carton of vanilla formula through his feeding tube and realizing it’s been nearly 10 months since he’s tasted any food, we talked about how fun it will be to get breakfast in heaven. We are not afraid of heaven.
Our home is almost constantly filled with people. Hospice nurses, health aides, social workers. The caregivers who work for us and take such amazing care of Steve so that I have some breaks. Friends and family coming to say deep words. People dropping off dinners and groceries and flowers. I look forward to the day when my house is quiet and private again and I can be the one taking the casseroles and flowers to people I love, but until then I know for certain that we would be lost without this unbroken stream of support and sympathy. Just so lost.
Our kids are exactly as you might imagine. Tired. Heartbroken. Hopeful. Strong. They surround their dad like sentinels, marching as far and as long with him on this road through the Shadowlands as they can, knowing the path will eventually narrow and there will only be room for one. Until then, we march. And we write. And take photos. And say the words we need to say to honor the life of the man we love the most.
If you’ve read this far, you might be thinking, “She’s processing all of this so well.” False. I have never felt more weak, more inadequate or more overwhelmed. Steve’s needs are immense. The more care he needs, the fewer people there are who are able to give it. And though we are surrounded by such a brilliant army on this battlefield, I realize that everyone can opt in and out of the fight except for me. I don’t want to opt out, but there are moments when I am certain I will break beneath the weight of responsibility and the sorrow always bubbling like a pot of stew on the back burner. I am learning both how strong and how weak I am. I am learning to receive help from those who can give it and make no apologies for the fact that I need it. I am learning to listen to the voices of those who have gone before me on this road without being defined or confined by them. I am learning, now more than ever, to lean hard on the grace of Jesus.
So, that’s a little update from our world. I hope it breathes hope, because we really do feel that so much of the time. And the fact that we feel it any of the time during this fierce fight is nothing less than a Christmas miracle. Jesus, Emmanuel, came to our sad and broken world to bring endless, eternal hope. This is why our weary world rejoices. This is why we’re still able to dance in the kitchen. His love brings comfort and joy, and we are drinking it in this season and always.
Oh, how we love you,
Bo for Team Stern
We are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. 2 Corinthians 4:9
Life is funny, you know? It’s funny in ways that make me laugh and cry and hope and hurt. It’s just funny. For several Christmases we have navigated the murky waters of this ALS storm. We have been treading water as we try to absorb the beautiful moments while anticipating a difficult future.
This year is different. This year, the difficult future has invaded our present. Steve’s condition has rapidly declined over the past couple of weeks and he will be placed on hospice this week. We are grateful for the resources and support hospice provides. We are grateful for our kids and our friends and our home (which currently feels more hospital than house.) We really are grateful, but we are also weary and heartbroken. And while I’ve sometimes been able to wrap those emotions into hopeful words, right now I feel surrounded by a sacred sort of silence. It’s not bad. It’s just quiet here in my heart, where so many memories and dreams are swirling.
I am taking a leave of absence from my job for the month of December, so I can focus on Steve and my family during this important holiday season. I will write when I feel it and I won’t when I don’t. Today, I don’t. But I do have something wonderful for you and it is this update from my friend, Michaela. Remember her baby, Florence, who is Steve’s comrade on the neuromuscular disease battlefield? Well, Michaela’s baby, Teddy (Theodore Brave!), is here and you should read this for a beautiful start to advent.
I hope your season is unfolding with grace and I am thankful for so many of the notes I’ve received to let me know you haven’t forgotten us and are still praying. We do not sorrow as those without hope. Especially at Christmas.
Because of Jesus,
Bo
Stephenie is my amazing assistant and friend. Today she’s getting married to her very own Steven.
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Dear Stephenie,
This is the day that youth pastors live for. We live for those rare moments when we watch God’s purpose stretch beyond the realm of potential and actually become reality. This day is possible because you said yes to His purposes before you could see them or feel them. I’ve seen you wait and pray and plan and build. I’ve seen you frustrated and lonely and faithful. You’ve walked this season well and today? We celebrate!
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I know you, more than most, understand the truth about what a wedding is and isn’t. We’re not celebrating because this is the first day of a perfect life or because marriage somehow makes a person more worthy. We celebrate because love – strong, sturdy love – is the stuff of God. Real love defies the gravity of humanity’s sin and self-focus; it will be pressed by those things, but it doesn’t sink with them. In a culture of flash-in-the-pan success and one-night-stand romance, real love hunkers down for the long haul. It understands that the wedding is pretty but the lifetime is where all the power lies. Real love multiplies our ability to care and give and serve. And when wispy, human love digs deep roots into the limitless love of God, that’s when we become both bigger and smaller than we ever dreamed we could be. That’s when we discover that better and worse and richer and poorer and sickness and health are two sides of the same coin – a coin God can use to make us rich, no matter which face is showing. We find that our hearts are expanded beyond the breaking point and into the breakthrough point. It doesn’t take long to realize that marriage is the laboratory where God does His best work on us, in us and through us…and also that sleeping together is just way better than sleeping alone.
Steve and I love you and Steven more than we could ever say and we wish you both the most amazing day and remarkable life. May the beauty that brought you to this moment lead you every step forward.
Because of the One Who Loves and Loves and Loves,
Bo
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Stacey Novak - Bo,
Thank you for being so transparent and loving. I long to meet you one day and hug you and thank you for the blogs you’ve shared that have hit home for our family, but also show us that we are not alone in our struggle ALS and teenagers.
Happy birthday, Josiah!! You have incredible parents!
May God bless you all mightily, above and beyond what you can ever think or imagine!
Stacey Novak
harriet hetzel (hh) - Happy Birthday Josiah! Your moms words are so true. I am truly touched by what she said. Our children mean more to us than anything on this earth. Our son and 2 daughters are in that fish bowl with you- trying to live a ‘normal’ life. Our ALS battle is entering the sixth year and our son is now 18. His name is Douglas. At times- I feel the hurt and pain for you and him the most. Being the ‘only boy’ I am sure you can relate. I know Douglas’ dad wanted to teach him the greatest game on earth and play golf with him, too. He wanted to hug him when he got his drivers license and stand up for him when he marries, but we know now that our lives have taken a different path. Your mom said- you aren’t fatherless- and neither is Douglas. You both have a wonderful, loving man in that fishbowl with you. I hope you have a great year full of exciting and happy events. Hang in there Josiah. May God bless you all. Harriet Hetzel
Susan - Beautiful
jacquelyn strayer - I am privileged to live in your town, go to your church,to read your books,to send your books to my friends who are struggling, to see you here and there. To hear you say “Hello” to me, to be inspired by your courage. I am privileged.
terri - Happy 15th Birthday Josiah!
Thank you Bo for sharing your heart with us. What a wonderful letter to your son, it really touched my heart. Words can’t express how this changed me today.
God Bless you all.
Jewl - Hi, Josiah, birthday guy. I love your name. It’s weird to get a birthday greeting from a stranger, and not only that, but one as far away as TN, and with the kicker being that I’m an old mom, but your mom already told you you’re not living a normal life, so this fits after all ; ). Interestingly enough, my daughter turns 16 on the 16th of this month, and since it’s so big and so golden, we’re thinking lots about birthdays around here. She’s sad to leave 15. For bigger reasons, you’re probably sad to leave 14. I just wanted to say that you’re going to make it through this. That’s all. And to your classmates, I’ve been where Josiah is. I recommend you give your bud a place to talk about his dad and death and dying and sad … or to not talk and just be do and be as always.
Joni Thurber - Dear Bo,
I love that you pointed out to not only Josiah, but to everyone reading, that Josiah is not fatherless. We know he is loved by his heavenly father. But on earth, the foundation that Steve has laid for Josiah is stronger than many foundations of Josiah’s peers. Boys and girls, young men and young women who yearn for their fathers fully capable with strong bodies and minds, but have not built the foundation that will sustain their children. These children have a heavenly father who intervenes. But for many, an earthly father of strength is a wish on a star. Josiah is fortunate for the gift of your husband, a father, who the minute Josiah was born, began building a foundation, and with his prayers, he continues to give Josiah something that will not crumble. Your loss is beyond words. The gift Steve gave your children is also beyond words. Blessings,
Joni