This article titled “My 2lb baby: ‘lonely’ is the only way to describe raising an ill or disabled child” was written by Jessica Valenti, for theguardian.com on Wednesday 28th February 2018 17.30 Asia/Kolkata
In a framed picture of my daughter’s first Christmas, she is wearing a violet tulle dress – propped up on my arm with my husband looking lovingly down at her. If a stranger were to see this picture today, they would think Layla was a perfectly cute newborn with adoring parents.
The truth, though, is that Layla wasn’t a newborn in that shot – she was nearly five months old, tiny from being born three months early. And though my husband and I were certainly adoring, what you couldn’t see in the picture was our overwhelming exhaustion and fear.
We had just spent the first months of our daughter’s life watching her in the hospital, wondering if she would have lifelong health problems, or if she would live at all. We’d spend the following two years waiting to see if her early birth and medical difficulties would mean developmental delays or disabilities.
Layla was fortunate: at seven years old she has caught up with her peers and is completely healthy. For a once 2lb baby, there is no better outcome. But for those years when Layla needed extra help – when she was being rushed to the hospital because her underdeveloped lungs meant frequent pneumonia bouts, when we were adding ice cream to every meal so she would gain much-needed weight – parenthood meant something very different for my family.
For Americans with ill or disabled children, parenthood is all-encompassing in a way you never thought possible. Your life becomes dedicated to their health and comfort. Their care is a full-time job: making calls to specialists, spending hours arguing with insurance companies, keeping meticulous health records, and working for hours with your child individually to make sure they’re being stimulated and cared for in a way to best help them thrive. And that’s just the mental work.
The financial cost of caring for a child with an illness or disability ruins families; with the Republican war on healthcare that’s only getting worse. If we had had a lifetime cap on Layla’s insurance coverage, for example, she would have blown through it in her first weeks of life. It’s not uncommon for families of preemies to be left bankrupt, depending on a healthcare system that says it protects the most vulnerable while making it impossible for you to care for your child while still paying the bills.
And the emotional toll is indescribable. For me, the best word to use would be “lonely”. I watched other parents post pictures of their children’s milestones on Facebook while I booked a second opinion with a pediatric cardiologist. The NICU was on the same floor as labor and delivery, so when we went to visit Layla – covered in tubes and wires – we had to watch beaming parents being wheeled out with their chubby, healthy babies. I hated them.
There were no mommy-groups for kids like mine, no friends who could tell me they went through the same thing and that everything would be okay. Most of all, though, I felt guilt – guilt for wanting an easier kind of parenthood. The kind that everyone else seemed to have.
The truth, of course, is that for the most part you have no idea what struggles other parents are dealing with. Sometimes an illness is hidden, a struggle not immediately visible to those outside of immediate family. Sometimes a healthy child becomes a sick child, and vice-versa.
It is all hard, but for the parents who give every ounce of their lives and selves to their child’s health and well-being … it is something else. Something beyond difficult. Yet it’s also special in a way others don’t understand – you know your child in a more intimate way. You love them with a different kind of fierceness.
That’s why we need a healthcare system that adequately protects families and children from the complex and tragic hurdles life puts in our way. We need family leave policies that make special considerations for parents of ill children. And most of all, we need to recognize that none of this can be a one size fits all solution.
I don’t look at people’s family photos the same way anymore; I don’t assume that everything is picture-perfect. I encourage everyone to consider the parents you don’t hear from as often. Maybe reach out to them with an offer to help or just an invitation for coffee. I can tell you from experience, they’ll appreciate it.
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