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How My Daughter's Complex Medical Needs Affected My Marriage

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In 2010 my husband and I exchanged traditional marriage vows. We promised to stand by each other for better or worse and in sickness or in health. As we were placing rings on one another’s fingers though, neither of us imagined that it would be through a child of ours we’d live these words; 2017 was a year that tested everything.

Overnight, we went from fighting over what to have for dinner to fighting for our girl’s life.

And stress like that — it changes things.

At first we pulled together. We built a wall around her. We held each other’s hands through her procedures, took turns holding her while she cried, and met with every doctor as a couple to discuss their ideas and evaluate her options, together. We were a family and nothing would break us.

But life stops for no one. And with two younger boys, two dogs, two jobs and one education waiting in the wings, we had to venture out of our fortress and back into reality.

And reality hit us hard, because the setting for it had changed. We were now in the world of disability and chronic illness, with no new tools to navigate them.

Family of 5. Parents and two boys all looking down at little girl in the middle who seems to be sleeping and has a disability

The shift was gradual. My husband returned to work and with our parents support continued on with life, as it was, for our boys. I don’t know the details of those early days, but they got to and from school, their sports and to the hospital to see their sister and I almost daily. Sometimes we’d switch places in the evenings and I’d leave to have dinner with the boys. I’d take them for picnics to maximize our time together or restaurants with play places. Other nights, a grandparent would stay and we’d go home together. But the focus was still on our boys, not one another.

If I’m being honest, I was full of snide remarks through this time, too. I couldn’t understand why since he was home, things weren’t being done as they usually were. Why they weren’t done my way. I wish I could say I did, but the truth is I neglected to appreciate they were done at all. I’d always return to the hospital bitter and confined to its walls. My husband’s burden and the load he was carrying as super dad did not cross my mind.

Separation wears on you, even when you’re too tired to know it.

Gracie didn’t stay in the hospital forever. But the child we brought home needed constant care. She was up and down all night. Her PICC line needed flushed. Meds needed to be run. She needed refueled, which is what we’d call filling up the backpack her feeding tube ran from, and there were constant therapy sessions and appointments someone had to take her to. And to top it off, her personality had changed, drastically. Nothing was as we left it. But neither of us could say that. We fell into a routine; working and caring for the kids. But we were just going through the motions. We were each so focused on what we had to do, we couldn’t see what the other was doing. And there was blame in this. We both wanted the other to do more. As if the key to bringing our girl back, or finding the right doctor actually rested with us.

I wish there was an epiphany. A pivotal moment when we realized we were losing ourselves to this overwhelming feeling, but if there was one, I couldn’t place it.

By 2018 we were strangers. Bound by wedding bands and resentment. It took a blow up fight and the idea of separation for us to realize how much we’d both given up. The weight of illness was crushing and it was easy to fall into a survival mode. And as you meet the immediate needs of your family, you forget those of yourself, and each other.

But you can’t. Because apart you’re only half as strong.

We’re in a better place today. Gracie’s journey isn’t over, but we appreciate the role of one another in getting her this far. Good health is easy to appreciate, but sickness challenges you. I’m thankful for a husband who stood beside me through the “worse,” believing “good” is ahead.

Originally published: June 3, 2018
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