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
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
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
Beautiful
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.
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.
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.
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