We were the Ashes


I know what you say to your partner at night – lying side by side in bed, thoughts turning to us, a married couple with a sick child. You say, “I don’t know how they do it,” and “I don’t think I could do it,” and “my heart aches for them.” I know because once, we were like you.

So I will tell you how we do it. The answer is simply that I don’t know, but we do it.

We have been in the PICU (pediatric ICU) for 4 days now. The days tend to blur together. This episode of heart failure/lung collapse could be caused by a myriad of things, and truthfully, we just don’t know. James is complex. He has been doing well, and we hope to go home on Monday.

We get up every day -Jim and I, and we take turns in the ICU. We take turns at home with the girls. We take turns fixing dinner, doing laundry, straightening the house. We call on friends and family to help us. We hug each other when we have the time to remember that it’s been a while since we touched. We try to laugh together when we can or relax and do something mindless when we can. We try to bring the girls to see James and to eat dinner or lunch together in the cafeteria (always an adventure).

We go through the day with a thousand thoughts. Hopeful thoughts – that James is responding well and will be home soon, that he will continue to defy the odds. Tragic thoughts – envisioning how we would like a funeral for him to look, where we would choose to lay his remains, what we would say about our son to the people assembled to say goodbye. I’ve started his eulogy in my head a dozen times. I’ve thought about songs that I might play at his funeral – or god forbid, sing myself.

Before James was born, I remember looking at other trisomy parents and all that they have done and gone through for their kids – the surgeries, the hospital visits, the therapy visits. I wondered how it was possible to survive with that kind of responsibility. Now I know. You survive somehow. You just do. There isn’t really an alternative. And right now, it feels just like that – like surviving. Maybe one day we will get to where it’s more than mere survival – where the days have a rhythm and we’re really living life again. But right now, it’s survival mode and survival mode only.

James is a mystery. Any time I try to look ahead, to predict what he will do, I am wrong. I worried about cardiac surgery, and it turned out to be needless. Every day I need a reminder to live in the present, to love James, to receive his gifts and not ask for that which he cannot give. This has been the hardest lesson for me to learn. I still struggle with it. I look at him at 4 months, and I want him to be smiling at me, to be rolling over, to be able to hold his own head up. I want I want I want I want I want…

And then I remember, it’s not about what I want. It’s never been about what I want. That’s maybe the most important lesson of motherhood. Instead of directing, deciding, controlling – I have to sit back – and receive the gifts of my child. Of all of my children. It’s so hard to do – especially for me, a known Type A control freak. I receive what they have to give without preconceived notions, without wishes for different outcomes. They are who they are – all 3 of them. I can’t change that, can’t change them. So I try to open myself to them, to who they are. And to accept. To accept.

To accept.



3 thoughts on “We were the Ashes

  1. Beautiful and true. Thank you for articulating this. We are parents to 5 children, one with T21 and one with T18 (Eli) who passed away 12/8/15. It’s all difficult and I don’t know how any of us do any of this parenting thing…yet we do. My favorite saying on the fridge:
    “I can’t do this.
    But I am doing it anyway.”
    Also, I fantasize about making a t shirt:
    “Life ain’t for sissys.”
    God bless you all. St. Eli, pray for us!


  2. Thank you for sharing your story. I hope you will continue to write about this journey & remember the blessings you & others are receiving through your precious gift from God. My granddaughter, Aubrey Jane, was diagnosed with Trisomy 18 when my daughter was carrying her. So when I heard about James I knew I wanted to pray for him and your whole family and I do it on a regular basis. May God bless you as you face these challenges and may He continue to give you the strength you need. Draw closer to Him & He will give you a peace that surpasses all understanding. He gave that peace to us & He can give it to you. God bless you all.


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