A Love Note to My Wife Caring for Our Daughter in a Hospital Room

Last week, at age 7, our daughter Pearl was hospitalized for the 11th time. And, just like the 10 times before, you were by her side all the while.

Together, we have overcome what feels like challenge after challenge ever since our Pearl had a hypoxic stroke that resulted in brain injury at just 6 weeks old. We have learned how to be her best parents, how to coordinate her care, how to make her life happy and healthy.

And yet, when it comes to hospitalizations, you are the one who takes it on.

So when you called to tell me you were bringing Pearl to the area’s Level 1 Pediatric Trauma Center 90 minutes away — as Pearl was sick in the backseat of our minivan — my heart ached for both of you.

Because while I cannot overstate my concern for our daughter, I also know you, Natalia.

During a hospitalization, you will go days without sleeping, eating or thinking of yourself in any way. You will steadfastly sit and sleep by Pearl’s side for as long as her stay lasts. You will survive on stale bagels and a million cups of sour coffee from the 24-hour shop in the hospital lobby. You will refuse to leave or let me stand in your place.

(Except for the one time when Pearl’s physician looked at you, red-eyed and dehydrated, and insisted I be allowed to take over, just for one night).

Only once Pearl is safely back at home, will you allow yourself to collapse with exhaustion. For weeks after such an episode, you will stumble through life seeking sleep whenever you can get it. But first, always first, everyone else has to be OK.

As Pearl’s father, your husband, and the default parent assigned to reassuring and caring for our neurotypical son during his sister’s hospitalizations, I often feel at a loss for how to best support you through these times.

Just like when — during this last hospitalization — I realized you had left for the trauma center without any food or water or change of clothing. I could not bring you supplies until noon the next day, after I delivered our son safely to school. And when I finally did see you, you said you were fine.

But I could see the exhaustion. Mental. Physical. Emotional.

As parents of a child with a disability, these episodes are frequent aspects of our family life and we continue to adjust. When hospitalizations go on for days and weeks, the cumulative effect of the sleeplessness, the worry, the loneliness, the dehydration and the poor nutrition can be devastating. It’s hard, but feels necessary to keep our family together and safe.

So, Natalia, I want you to know I see what you do and I appreciate it. And that when I show up with a change of clothing, or a thermos of herbal tea, or brown-bag sandwiches, I wish instead I was delivering you solace, and relief, and that oh-so-precious sleep. But instead, I will continue to support you, and our family, and our children, in the ways I can, and be forever grateful for your unwavering strength.

Editor’s note: This story has been published with permission from the author’s wife.

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