One year ago today our lives changed forever. We arrived by ambulance to the ER where we witnessed the most traumatic, chaotic, and shocking experience of our lives. We cannot even begin to explain what it is like to watch your own child lay there completely helpless, while 20 plus people in an ER room yell orders to save his life, when minutes prior our pediatrician was reassuring us that everything was going to be okay. There was no time to process, feel, or think, simply react to each hour's update. For weeks we were told Daniel was the sickest child in the hospital as he was monitored 24/7 in the Cardiac ICU. 

While I could write a book about all the hard things we have experienced, the anger, confusion, despair, loneliness, resentment, guilt, bitterness, hurt, loss, numbing, escaping, marriage conflict, and more, we have also experienced God’s nearness and peace that surpasses understanding.

I’ll never forget the day we couldn’t stop crying thinking this was the end. As we parked at the hospital we saw a group of people (to our surprise) there praying for us.  As we joined them, I prayed “God this might be as close as we get to parent child dedication, we give Daniel to you God, if you decide to take him home, he is yours.” There were many other days we would walk out the hospital and there would be people out there in the cold praying for us. People showed up at our house to help. They hosted prayer gatherings. They cried with us. Held us. Brought meals. And have given so generously.

We praise God that he is alive and doing well (all things considered). His heart is still only functioning at 36%. One third of babies with his conditions get better, one third stay the same, and one third get worse. And there is no timeline to know.  We also found out from his swallow study that he is still aspirating so he will continue to take a majority of feeds through the tube until he can learn to swallow safely. 

 There are plenty of days when our hope was/is in good news from doctors, wishing this was a dream, or our life was easier. But God has grown us and stretched us so much this last year. He has been patient and kind, and forgives us in our sin and even at times our destructive ways of processing everything.

 Today, we lament the pain of the last year and unknowns of the future, while holding on to the hope we have in Christ. Thank you for all your love, support, and encouragement this last year and moving forward.

This is an excerpt from the book Every Moment Holy. A Liturgy for embracing both Joy and Sorrow that we feel expresses our hearts’ desire. 

Do not be distant, O Lord, lest I become so mired in yesterday’s hurts, that I miss entirely the living gifts this day might hold. 

Let me neither ignore my pain, pretending all is okay when it isn’t, nor coddle and magnify my pain, so that I dull my capacity to experience all that remains food in this life. 

So give me strength, o God, to feel this grief deeply, never to hide my heart from it. And give me also hope enough to remain open to surprising encounters with joy, as one on a woodland path might stumble suddenly into dapplings of golden lift. 

Amidst the pain that lades these days, give me courage, O Lord; courage to live them fully, to love and allow myself to be loved, to remember, grieve, and honor what was, to live with thanksgiving in what is, and to invest in the hope of what will be.