Having a medically fragile child, particularly with a diagnosis like Hypoplastic Left Heart Syndrome, involving multiple open heart surgeries, can put an unbelievable amount of stress on a marriage. Before your diagnosis, it’s like your life is a nice tiny little ball of neatness (for the most part). Then, you get your diagnosis and the ball gets thrown in the air and completely explodes. Then, until your baby is born and for the first 6 months to a year of your child’s life (sometimes longer, depending on your child’s complications), you’re trying like mad to keep the pieces in the air as much as you can. You’re trying to keep things from hitting the ground. And you’re so busy trying to keep the important pieces (you know, keeping your kid alive) up in the air, you’re pretty much ignoring the unimportant ones. You’re making spur of the moment decisions on what’s unimportant enough to hit the ground.
Then, once things settle down, and you’re far enough past the Glenn that the surgical experience starts to fade and the Fontan seems light years away, you finally have some time to look around and examine all of the pieces of your formerly tidy little ball of a life. Some pieces are bent, some are broken, some are just flat out missing. Where’d they go? God only knows – you were too busy juggling the other pieces to notice. And you try to scoop everything up into that tidy little ball again, desperate for order amidst the chaos. This is what I lovingly refer to as “post-Glenn Fallout” period.
You have to spend time getting to know this new life, this new “normal.” Maybe you allow yourself to process the grief – maybe you don’t. After all, your child is thriving, so what right do you have to feel any sense of grief? In so many ways, this life is SO MUCH better than the life you had expected. But it’s still different. And you can’t ignore the ways it’s different. And, as tempting as it is, you can’t ignore its effect on your marriage or relationship.
When we were first diagnosed, we met another family whose little boy was gearing up for his Fontan. They were such a loving family – the mom and dad were both so supportive of their sweet little boy. But my mom told me later that the dad pulled her aside and said his biggest advice was NOT to ignore our marriage during that first year of our baby’s life, that it could have devastating consequences, that that was his one big regret. His son survived the Fontan with flying colors. Their marriage did not. And they are just one story. So many, many families have similar stories to tell.
So, when we realized that we were allowing ourselves to drift complacently through this “Post-Glenn Fallout” period, and we were pulling apart instead of together, remembering that family, and so many others like them, we sought out a pastoral counselor, a trusted and loving confidant who knew us, and our family. Someone who could help us navigate through this next stage in life, and pull back together into a cohesive unit.
It has been amazing. One of the best decisions we’ve made. We’re already making such good progress – toward one another, for the first time in years, instead of away. What a wonderful relief.
One of the first “assignments” from him was to write Bodie’s story. We looked at one another and said “sure, we have his medical history already written up.” He stopped us and said “No, I don’t want BODIE’S story. I want to hear how Bodie’s story has affected AMY. And how Bodie’s story has affected DUSK.” Interesting. He also asked us to write about what we’ve learned and about our celebrations and accomplishments. We talked a lot about celebrating milestones. And I realized that although we have been very good at celebrating how far BODIE has come in this journey, we have NOT been very good at celebrating how far the REST OF US have come – Dusk, me, Sierra, our marriage, and our family.
We protested a bit – it feels weird to celebrate how far we’ve come when we still have so far to go. Wouldn’t we be somehow jinxing things? But he gently reminded me that, much like soldiers at war, just because we know we have another tour of duty coming up does NOT mean we don’t celebrate each homecoming from a tour. So, in the next few blogposts, I will be sharing both Dusk and my writings of celebration, and our trip this last weekend, our first weekend away together since before Sierra was born!