Finding joy in the new normal

I still remember how suddenly – and violently – the tears fell as soon as I heard the words: “your baby has a heart defect.”

I was 22 weeks into what had been a normal, healthy pregnancy. I was at the appointment alone, because I didn’t think we were getting any results that day. 

We were moving halfway across the country in just two weeks. 

After a day of painful grieving, I was able to do what I do best when facing pain: focus on the logistics. I learned what I needed to about this foreign diagnosis – tetralogy of fallot – and I did the work to transfer care from Washington to Iowa. 

It is amazing how quickly difficult news becomes your new normal.  It is amazing how quickly you learn the language of heart defects. It is amazing how you become used to the idea of living in the hospital…

It is amazing how normal it becomes to face the reality that you could lose your child. 

I realize it can happen to anyone – the loss of a child – but I would imagine most new moms don’t look at their healthy babies and think about such things. 

It is what my husband and I talked about, just after midnight, in the first moments of 2016. How this would be the year of at least one open heart surgery for our little man. How difficult it would be, to hand him over to the surgical team, to say goodbye not knowing if it might be the last time. 

I can’t imagine what that will look like. But then, I couldn’t imagine what any of this would look like until we faced it. 

I know people get nervous when I say things like this. It makes them uncomfortable – even my husband and I take turns doing it to one another – coming forth with the pat optimistic responses. 

I know he’s strong. I know he has an amazing will to live and a fighting spirit. I know we have a great medical team and a surgeon we trust – well – with our son’s life. 

But that doesn’t change our reality. Open heart surgery is a big deal, and he has a pretty complicated case of a pretty complicated defect. 

This life has no guarantees. 

It is all the more reason to do what I set out to do: Find and focus on the joy. That is my one goal for 2016. It encompasses everything I hope to accomplish. 

My joy this morning?  Laying in bed, cat and dog next to me, my beautiful son laying on my chest. He is currently practicing head control, which means he is head banging me. He throws in a few punches to the neck every so often. And then he snuggles in and falls asleep. 

He is my greatest joy, and I am lucky to have him for as many moments as I get him. 


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