While we’ve been here up north for a therapy that will hopefully help you in the long run, there have been things happening in the world that are horrific and terrible. You will soon learn two things: 1) we live in a world that is both stunningly beautiful and devastatingly awful and 2) your mom and dad, like many parents, are working hard to stand between you and the particular ugly things that exist.

But at some point you will know it and see it and hear about it and read it. At some point you will find your stomach turned more than once at the news. At some point it will hit you- the fear and horror that happens. Maybe it will start small- when you encounter a bully at school who punches because he can’t handle his own pain, or when you listen to a lady from church who is verbally violent about others and hides behind false piety. Maybe it will start big- when you learn of government backed nations that shoot bullets into preteen boys playing on a beach, or when you discover the terrible events of other countries which the world mostly ignores since nothing can be gained from those countries’ land. Read the rest of this entry »

– Lots of sleepless nights. Or sleeping so heavy it feels like you haven’t slept at all.

– Marvel at how time both speeds up and slows down- amazed it has been 9 months, or 24 weeks, or 10 years when it feels like yesterday and wonder if and when this season will ever end.

– Touching your loved one a lot. When there’s pain: when they need comfort, when you need comfort, or just because you have to feel that they are still breathing, still with you.

– Become a warrior in the health care system that often is neither about “health” or “care,” but it totally “system.”

– Be grateful that you have health care at all.

– Push away the “what if” fears that crowd in and instead grab for any sliver of hope you can.

– Cry in the shower.

– Wonder if this is what your life will look like forever.

– Wonder what life will be like when it is not defined by illness and needs.

– Clean your house to stay busy one week, and let your house get trashed the next because you are too busy.

– Search the Scriptures for hope.

– Realize you are aren’t breathing at the doctor’s office, and try to remind yourself to use your diaphragm when taking a breath.

– Meet a new medical professional or therapist and try to withhold judgement about whether you like him or her.

– Turn every moment into a quest for recovery, fall into your bed wondering if you did enough to rescue your child from this situation that day.

– Find moments of peace that don’t make sense and attempt to make that moment as fat and big and long as possible.

– Research every possibility, and refuse to be dissuaded from all opportunities.

– Watch for signs of healing, and signs of more illness.

– Wonder what your friends are doing and hope to see them again soon.

– Lay hands on your little one and pray, every moment, every chance, every opportunity.

– Prepare for the worst, celebrate the better, and resist the temptation to despair.

– Keep moving one step in front of the other because as much as you want to quit, you know the only way through this is through.

– Be swept away by the depths of love that wash over you as you gaze at your child, and know that you can do this one more day with the vision of his or her health in mind.

– Sing and then be quiet.

– Pray for those who are struggling with far worse things.

– Realize that when you walk in the dark, it is important to discover what the darkness has to teach you.

– Listen for the voice of God and crave it to find strength for whatever is next.

I have been on a writing hiatus, not of my own choosing. We have been working so hard in the marathon of my son’s recovery. It has required more from us than we thought it would. And we have fallen into bed exhausted just to wake up the next morning unsure if we slept at all. I don’t always understand things that happen. In fact, I rarely do. I don’t know why my 3-year-old has had to bear this heavy calling for his young life and I hope it is a transient calling, one that will leave us and soon. And I don’t know why as parents we are needing to carry the weight of his struggle, but we gladly do and would gladly take it from him in a second if we could. I hope to be able to start posting again soon, once my brain de-fogs from these experiences.


Dear Son,

Last night as we slept, your feet found my back. You kick again, unaware of what you are doing and then you hum a slight note as you settle. I am reminded in the dark of how you used to kick me awake before you born and I smile.

In the pale street light coming through the shade, I can make out your face. Sometimes I catch a glimpse of that newborn in your sleeping face and I marvel at you. Your hand stretched out, your fingers loosely curled, I can’t believe sometimes how much you have grown in the time since I met you, since I got the chance to share my life and home and living with a person like you.

I know that morning is just around the corner and we will wake to sunlight and the demands of another hard day. We sleep on this airbed at a relative’s home for you, you know. We’re here at this place away from what we know all for you. For you to heal, for you to recover, for the special therapy that is filled with promises we hope will be true, for you to get back what was once all yours. Sometimes I worry that it’s too late, that at 3 and a half we have lost some of your capabilities never to be seen again. I know that’s silly. Three years old is hardly a lived life. But this sickness has taken so much. Even as you recover, we know the toll is has created on your body and mind and on our hearts.

Read the rest of this entry »