Motherhood

My Relationship With My Daughter Is Full of Love and Loss

motherhood illustration by abbey lossing

My daughter Izzy…

…who turns three in a few weeks, has thick bangs like Audrey Hepburn, and her skin smells like peanut butter. Unlike most babies — Izzy’s developmental age is six months, so I still think of her as a baby — she is not frightened by sudden movements or loud noises. When a gust of wind smacks the front door shut, Izzy giggles. When her seven year-old brother hurls himself onto the couch, and bodyslams his life-size teddy bear yelling “CRAAAASH!” at the top of his lungs, my husband and I cringe. But not Izzy, who snorts and shudders with delight.

I could share endless anecdotes like these, as token celebrations of Izzy’s uniqueness — as proof that I see and love my disabled daughter for the full human being she is.

I know that’s the story you want to hear. The truth is, since Izzy was diagnosed two years ago with a genetic syndrome causing severe intellectual and physical disabilities, I’ve been sad — so sad that, at times, I gasped for air — while mourning the loss of the daughter I thought I would have.

I’ve also been questioning how I understood so little about parenthood until now, while also trying to forgive myself for not knowing the unknowable. Strangely, my mental “warm up” for parenthood included catastrophizing about the possible death of my children, but not the prospect of having a kid who may never walk or talk, or who I’m not sure knows I’m her mother.

I can only imagine actually losing a child, yearning for the warm body to which a mother gave so much of her own self, but can no longer see or hold or smell — I am undeniably fortunate to be able to say that.

The shape of my loss — of ideas, not a body — is more ambiguous. Yet, I’ve learned that it is no less real in its immensity and power to destabilize.

Parents like me are not supposed to talk about their disabled children and death in the same sentence, as I just did. It can be dangerous to the cause. For several decades, disability rights advocates have advanced a platform for equality on the basis that a person with a disability is as fully “human” as anyone else. Their gains have been astounding, all the more so considering how terrible things were before. For most of the twentieth century, disabled people were labeled “idiots,” “imbeciles” and “feeble-minded” by the same professionals who sought to “cure” them. Eugenicists (certainly Hitler) believed that the mere presence of these people weakened the human race. One remedy was to remove them altogether — that’s a polite way of saying that tens of thousands of disabled people were cordoned off in prison-like institutions, where some were involuntarily sterilized, or killed.

To compensate for the crimes of previous generations, modern narratives tend to celebrate the full humanity of disabled lives, as if to say, “Do not mistake disabled for dead.” You know the stories I’m talking about — people with disabilities who are defying the odds by competing in the Paralympics, founding nonprofits or testifying in a wheelchair on Capitol Hill.

The problem is, for many parents of children with disabilities, these narratives of triumph are misrepresentative. At best, they depict an untouchable fantasy. At worst, they narrow the channels of perceived social value by sending the message, “we only care about heroes,” while reinforcing an ideal that few parents can live up to.

I’m intimidated by how thorough my shedding of ideals about Izzy’s potential needs to be. Like air, hope is everywhere; for parents, it can be a drug. To make room for the presence our children require of us, we need to depend less on hope — which for me, is a sort of death. It may be painful to relinquish the visions we had for our children, but it’s even more painful to cling to expectations that we discover, over and over again, are unlikely to pan out.

Allow me a story of how high I once was on hope. While I was pregnant with Izzy, my husband and I went back and forth on the spelling of her full name — should it be Isabel, Isabelle, Isabella, Isobel? I lobbied for Isobel because of a really fun “underground” party I went to as a teenager; it was the first time I heard the song by the same name (and spelling) by Björk, the iconic Icelandic performance artist. Björk’s trippy beats and haunting lyrics temporarily transported me from my suburban malaise, and the memory shimmers in my mind.

After my husband and I settled on the spelling, I imagined — in vivid detail — my future conversations with teen-aged Isobel about why I’d “burdened” her by choosing the “difficult” spelling for a common name. That’s how Björk spelled it, I’d say, before playing the song and reveling in my memory of being 17 years old. I’d roll the video on YouTube. Again?! Izzy would exclaim, rolling her eyes, but secretly captivated by the haunting black-and-white imagery of Björk as a forest nymph among skyscrapers rising from a bed of leaves. Oh, Mom, she’d say, her eyes transfixed on the screen. On the surface, Izzy would act embarrassed by my hopeless old-personness, but deep down, she would love me for it.

Izzy and I will likely never have this conversation, though her name is a relentless reminder of my silly reasoning for choosing it. But Izzy has also woken me up to a more authentic and meaningful way to be a parent. And I’m finding that this new approach — parenting with realism, eyes wide open and, borrowing the title of one of my favorite podcasts, an attitude that “everything happens” — well, it’s a lot less squishy, and more reliable, than hope alone.

Hope discolors even the most neutral standards — age, for instance. A child’s age is a number, a measure of the time she’s been alive. Too often, achievement-oriented milestones are attached to a child’s age, and all sorts of ableist presumptions start to explode like fireworks around it. Grace is six months and already crawling! Billy turned three and has his first 250 words! Zora is seven, can count by tens, and is well on her way to Harvard!

Parents of disabled children understand first-hand how kids develop at their own pace. In the safety of our homes, we tell ourselves, “Every kid is on their own timeline… age is just a number.” But maintaining this belief system gets challenging as soon as we go outside — and start interacting with the medical, educational and social norms that depend on biological age as the predominant measure of child development.

I remember the weeks after Izzy’s diagnosis, marching her to evaluations with the geneticist, neurologist, nephrologist, ophthalmologist, audiologist, immunologist, physical therapist and occupational therapist. In their waiting rooms, I completed the same age-based questionnaire: “Does your baby show interest in interacting with others? (such as peek a boo)” No. “Does your baby pass objects from one hand to the other?” No. “Does your baby pick up her head and push through elbows during tummy time?” No.

“But happy and healthy!” I squished into the side margin more than once, wondering if anyone ever reads these things.

All those times at playgrounds, in swim class, on the curb outside my son’s school, when other moms asked me Izzy’s age, the most innocuous way for any parent to break the ice, I answered plainly — while flexing every muscle at my disposal to conceal the toxic car fire of shame and guilt burning within. They would reply: “Ella is exactly one month older!” or “A Leo! Lucky girl.” The but remained stuck in the back of my throat. I rarely shared Izzy’s developmental age which, for most of her first and second years of life, remained fixed at three or four months old. It was simpler to let the conversation peter out.

When Izzy’s disabilities became more visible, once, I lied. “About seven months,” I said, when the answer was really fifteen. Never one to judge an occasional white lie, I was taken aback by how terrible it felt. I was trying to protect myself from the uncertainty of others’ reactions — to save myself the chore of answering their questions, being the receptacle for their pity, or feeling judged by their silence. But in the act of lying, I felt worse — ashamed at myself for acting as if I were ashamed of my daughter. Lying felt cowardly, like a betrayal of Izzy, and a step backward on my path toward acceptance. I never did it again.

I wake up some mornings convinced that I’m living a parent’s worst nightmare — one that modern medicine is designed to prevent. While pregnant with Izzy, I’d taken the tests designed to stamp people like her out of existence. After her diagnosis, I was both furious at the system for not catching her syndrome and wracked with guilt for my complicity in the ‘progress’ to prevent her. Somehow, Izzy slipped through the cracks and into existence, a reality I view with equal awe and rage. She is both miracle and mistake.

But most days, I relish the solidity of the ground beneath my feet. It’s a footing that hope alone, by its very nature, can’t provide. Standing here feels like freedom, which I’d always imagined would be more like floating. Rather, it’s more of a re-anchoring in realism, a readiness for the expected, unexpected and everything in between.

I think I’ve come a long way — Izzy’s upcoming birthday will be a good test. When her brother blows out her candles, will I feel stung by the loss of her not being able to do it herself? Might there be joy in what is?

We find out in three weeks.


Julie Kim worked in tech, design and publishing for many years before becoming a full-time writer in 2018, following her daughter’s diagnosis with 1p36 deletion syndrome. She lives in Oakland, California, and is currently working on a memoir about raising a disabled child.

P.S. How to navigate a special needs encounter, and parenting twins: one has Down syndrome, the other doesn’t.

(Illustration by Abbey Lossing for Cup of Jo.)

  1. Anon says...

    Reading this brought too many emotions into me. Reading the comments did the same. I’m the sister of someone with autism/aspergers. I spent a lot of my time growing up feeling like it was hard to have a sibling with autism and yet no one was talking to me about that. I often talked about how siblings were ignored and not focused on enough, that too much attention was on the child with the disability. I even wrote a blog post very similar to this one, articulating why it was hard to grow up with a sibling with autism.

    My sibling called me the day I published the blog post, extremely upset. They cried out to me: “did I ruin your childhood? Was I such a burden?” It was the most heartbreaking call of my life. I had cruelly not truly thought through the consequences of posting this blog. Maybe I had hoped that he wouldn’t find it. I hadn’t imagined him reading it. But I hurt him that day, deeply. Even as I reassured him that that’s not what I meant and that there were all these great things about growing up with him, I realized also in that moment of publication that I had cemented the ableist ideas in our society about people with autism when I wrote that blog post: that they are burdens, difficult, etc.

    I’ve spent a lot of time talking to other siblings. Many of us feel a range of emotions. But what I’ve realized now is that that does not excuse our ableism. We should be fighting for a world in which our siblings do not feel like burdens, by society but ALSO by their own family members.

    I echo V’s calls for more disabled representation. I also think there needs to be an explicit reckoning with this piece by Cup of Jo. It’s not enough to just increase the disabled representation while not acknowledging the ableist context and content of this essay.

    • Erin says...

      Completely agree, Anon, well said: “…there needs to be an explicit reckoning with this piece by Cup of Jo. It’s not enough to just increase the disabled representation while not acknowledging the ableist context and content of this essay.” I tried to continue reading Cup of Jo since this essay posted, but I’m too frustrated by the defense of the essay by other readers, esp parents, in light of ppl with dis hurt and pain, and Cup of Jo’s silence. I’m a long time reader who will be saying goodbye, because, I, too, want to see us all grapple and repent of our ableism rather than side stepping difficult conversations, and I don’t see an effort to do this.

  2. J says...

    Thank you for this honest piece. You can love your child intensely and be willing to kill for her, but at the same time be deeply sad for the loss of the life you’d envisioned (even though those plans were illusory, mere air!). I see photos of myself when I was pregnant and I think, how naive. That person is gone. How can a parent not be scared and upset with diagnoses like these, when disability is so invisible, when all you have ever heard is how hard it is and how parents must be tireless saints to survive and to advocate? As a parent of a rare and medically complex child, I am tired, usually. I’m angry, often. But we’re also happy and grateful (more so pre-SIP). I’m constantly shocked by how many healthy kids are just walking around seemingly everywhere I go. These are not unnatural feelings to have, and much healthier that I sit with them than to try to force myself into the few acceptable “mother of a child with special needs” molds that popular society offers.

  3. Allyson says...

    Thank you. Izzy, Isobel, sounds amazing. You’re a very good mom.

  4. Emily says...

    I also really appreciated this topic being included on your blog and that it was given in such a honest vulnerable way. Thank you for being bold in branching out from easy surface level topics.

  5. Julia Park says...

    As a mother of a 20 year old autistic daughter, I want to add to the conversation by pointing out that Izzy is only 3 and Julie’s emotions and thoughts will evolve as Izzy grows older. Julie is trying to articulate her thoughts and feelings as she goes through this experience in real time. Raising a disabled child is not an easy idea to wrap your head around, even just inside your head, much less in writing. I think that is what writers are for – to articulate the universal and/or singular circumstances of being human. Let’s please be kinder.

  6. This is everything. You spoke for so many, you gave us a voice as parents. Thank you.

  7. Jodi says...

    Yeah, what they said. This is so, so beautiful, and raw, and everything.

  8. Amber says...

    I truly appreciate you posting this article. I have a disabled daughter and as a parent you are not allowed to have these thoughts or feelings because people immediately deem this insensitive or weak but these are validated feelings that exists. Thank you for publishing it and giving outlet for them.

  9. Ann says...

    Raw and gut-wrenching and beautiful in its honesty. What a feat to write one’s truth.

  10. Leah says...

    Wow—Julie’s essay and then all the thoughtful comments—thank you for this space, CoJ team.

  11. Mel Tully says...

    I admire the raw honesty and authenticity it took both to write and to publish this piece. Thanks for being real about an unimaginable and life-long situation that many of us have no experience with. All voices matter, and getting to hear the voice of the real-embodied, real-lived experience is invaluable in a societal time when we tend to sanitize our words and experiences. We must find a middle ground between compassion and authenticity.

  12. MarieP says...

    I’m a speech-language pathologist and I want all parents of kids with special needs to know that we read what’s in the margins. We care about what’s in the margins. The information you write in the margins is a far more accurate and real depiction of your child than our meager checklists could ever garner. Please write in the margins.

  13. Sunny says...

    As a former „kid with special needs“ (and still having them, of course) I can tell you from my side of the table that I cried reading this.
    I felt loss, anger and grief, too: for the childhood I never had with a supporting, accepting and encouraging mother who would help me compensate my weaknesses. My mother was disappointed, like the author above, about not having the daughter she had wanted and imagined- and the guilt of disappointing her was on top of my very own shame of being regarded as a low performer.

    Did it ever occur to mothers who are disappointed by their children that they might be a disappointment for their children as well?

    I see her pain and hope she can heal herself, let go her inner instagram, and set her focus on her sweet girl cracking up over some noise..

  14. MP says...

    This is best piece of writing ever published on Cup of Jo. Thank you for your authenticity and honesty.

  15. M says...

    Thank you, Julie, for the incredible emotional labor it must have taken to write this piece. Your perspective is so valuable. A family members young child was recently diagnosed with a genetic developmental condition and finding the language to navigate the greif over the loss of dreams for a child is so difficult. The vulnerability you’ve shown here is such a gift as we move forward in this different life.

    Is there any advice you can offer for family members of parents with a disabled child? We have been giving them freedom to express their greif without judgement but otherwise feel lost with how to help. We are also far away.

    • Julie Kim says...

      Hi M, I would highly recommend Andrew Solomon’s book Far From the Tree. I found it at a crucial time and it gave me a North Star — acceptance. It’s a long book full of accounts from all sorts of parents at different points on their journey toward acceptance. The introduction alone changed my attitude toward parenting (both Izzy and her typical brother). Solomon also has a wonderful short talk online titled “Love, No Matter What” that is lovely and profound.

  16. Charlie says...

    I see both sides:

    @Jo and Julie:
    THANK YOU for a post that was honest, open, and raw. I recognize that there’s fear of criticism, shaming, or even brand deflation when you post things that are controversial; I’m glad that you have chosen thought provoking and honest content, over what’s comfortable and low risk. I’ve seen CupofJo take more of stance over the past couple years and I like it.

    NEXT TIME, I think its important that you more carefully question whether a post or opinion could deeply hurt someone, exclude / discriminate, or paint other humans as “mistakes”, as this post did. Describing a child as a “mistake” or that you’re living “a parent’s worst nightmare” because of your child’s disability is very hurtful to some readers, like V, who you’re talking about. No human is a mistake. Was there a way you could have shared your feelings, while being less hurtful to disabled readers?

    A parent’s #1 goal should be teaching their child self-love and self-worth, showing a child they are loved. I think it’s close to impossible to feel loved if a parent is unable to fully accept us as we are. Being loved and accepted is a basic human need, and I feel deeply for any child who cannot get this from their parents.

    There’s no question life with a disabled family member is challenging. Then again, I know other families who have nureotypical children who have addictions, violent behavior, etc. that impact their families much more negatively than any disability. Similarly, I wonder if it’s HARDER to be the person with the disability. While a parent still has control over her choices, life, etc. a child never does. Like your daughter, disabled folks may forever be unable to communicate their basic needs, be fully self reliant, or like V, live a financially independent life where they feel appreciated and loved as they are.

    Every family is different. Every human is different. I’d encourage thinking about this issue from more perspectives.

    Perhaps V can do a post?

    • anon says...

      Charlie,
      I think we are living in a time when anything said or written could deeply hurt someone or make them feel excluded and it’s interesting to think about how the arts respond to this shift in our time when anyone who says or does the wrong thing risks being “cancelled”. That said, I think there is a huge difference between purposefully setting out to hurt and exclude with hate as your motivation vs voicing your own experience in a deeply honest manner with love as your motivation. I think every mother who has posted a comment would agree that their biggest nightmare is finding out that something is “wrong” with their child — whether it’s a neurological, physical or mental prognosis — we live in fear of our children getting cancer, getting hurt, being picked on, not reaching milestones etc etc. And then there are the diagnoses we didn’t know we should fear…. I suppose that could be hurtful for a child with disabilities but the nightmare scenario is not based on our own fear of being able to love our children – we can and we do — it’s knowing that their lives are going to be more difficult that we would had imagined, in ways that are too heartbreaking to think about. It’s also an honest acknowledgment of how deeply changed parents’s lives will be — marriages will be tested, school systems sued, homes remortgaged, careers stopped. I wasn’t surprised or upset when my son got his autism diagnosis — the moment of deep sadness came when a therapist said that we had to work on building his confidence bc by the time middle school came, it would be increasingly evident he was different and that’s usually when the bullying really starts. The thought of my baby being picked on for the very things that make him so amazing is heartbreaking – but having gone through middle school, in no way surprising.

      I can appreciate the folks asking for perspectives from people with disabilities who have the ability to communicate their stories. But to ask Julie or Cup of Jo to not post this deeply moving story bc *you* think she’s calling her child a mistake (not the context many of us understood this as btw) or to write it differently to be less offensive seems at odds with the intent of the piece — to share a deeply honest portrayal of what parents go through (the good, the bad, the ugly) when dealing with the whole world of parenting, taking care of, advocating for and loving a child with severe disabilities.

    • Christina says...

      I think that almost any subject might be hurtful, excluding or be perceived as discriminating by someone (just look at recent posts, there is always someone feeling hurt no matter the subject). I also think that it is important to talk about hard subjects, such as feelings that aren’t always pretty, instead of hiding them inside you, pretending that everything is rosy and that everyone has only correct thoughts. How can we grow, learn and heal if we aren’t allowed to talk about things?

    • Amy says...

      Thank you Anon and Christina for your replies to this comment. As the mother of a child with special needs, I found this post to be heartbreaking and yet also refreshing. Reading Charlie’s comment was like a punch in the gut, and seemed to come from someone with no perspective on the devastating and life altering experience of parenting a child with challenges beyond the “expected.” Thank you for putting into words my thoughts and heart-feelings.

  17. Charlie says...

    NO, K, of course it’s not selfish. I think we all dream of laughing and conversing with our future children, seeing them grow and progress, and become independent. Wanting these ‘typical’ joys of parenting are not selfish at all.

    Just like we hope that the world can recognize the beauty and honesty in our special needs family members, I believe it’s critical to treat ourselves with the same flexibility, humanity, and self-love.

  18. Allison says...

    This is a wonderful resource for parents of children with disabilities, from the fantastic disability organization Rooted in Rights:

    https://rootedinrights.org/our-stories/parents/

    “Parenting Without Pity is a storytelling project where disabled parents draw from our own experiences of disability to help parents be better allies for their disabled children.”

    • Julie Kim says...

      Thank you for sharing this, Allison. I am learning of so many amazing resources from you and other commenters on this thread. I hope (there’s that word again, old habits die hard!) that Izzy is able to someday share the kind of experiences and wisdom communicated by disabled parents on this site.

      But given the severity of Izzy’s disabilities — she has a large genetic deletion and is missing 10 million base pairs of DNA — I don’t expect she’ll be able to do so. I say that *also fully believing* that she is an essential contribution to my and others’ lives, though she makes (and will continue to make) her contribution in a very different way than those with a higher degree of independence.

      Similar to any other identity trait, “disabled” spans a huge spectrum, and it is my simple wish for society to be more understanding toward the variety and value in these experiences.

  19. Thao says...

    Such important and powerful writing. Thank you for sharing your story — I’m looking forward to reading more in your memoir.

  20. Rose says...

    I commented once, but wanted to come back and add a thought after reading some of the responses. I cannot speak to what my disabled daughter experiences in her life. She is her own person, and, due to her many disabilities, we are still working on finding her a way to communicate and we are only able to guess her thoughts. What I can speak to is my experience as her mother. There is no shame in having a wide range of emotions around caring for a disabled child, an elderly parent, a sick spouse, anyone. We, parents, caregivers, are human beings also, and we seldom are allowed to speak truthfully about our feelings. It is not self victimization. It is our truth. Cup of Jo should feature more voices from disabled people of all abilities. I truly appreciate your team for making space for those of us fighting on behalf of, and working so hard to care for the children we adore.

  21. Daniela says...

    Wow. One of the most captivating pieces of writing I’ve read in awhile.

  22. Kelly says...

    Thanks to Julie and CoJ for sharing this piece. There are so many people with special needs, and so many families who grapple with experiences like these, but rarely do those experiences show up on mainstream platforms. More of this please!

  23. K says...

    what is the point of being a parent? what are our expectations supposed to be for our children? is it irredeemably selfish to hope that they are “typical?”

    • Kate says...

      Yes. Never once when I was pregnant did I wish for a typical child. Did I assume it? Yes. And that was my failure. The point of being a parent is to guide a human through their life and marvel that you get to be the one to do so. Even if it’s hard.

    • Charlie says...

      NO, K, of course it’s not selfish. I think we all dream of laughing and conversing with our future children, seeing them grow and progress, and become independent. Wanting these ‘typical’ joys of parenting are not selfish at all.

      Just like we hope that the world can recognize the beauty and honesty in our special needs family members, I believe it’s critical to treat ourselves with the same flexibility, humanity, and self-love.

  24. K says...

    i am appreciative of your honesty. at parts, this was really difficult and heartbreaking to read, but i think that lends the piece to further discussion points. i still can’t figure out which thoughts we are “allowed” to have in regards to children. are we allowed to resent them, hate them, etc, as long as we try not to, and still try our best anyways to raise these innocent souls with love and care?

  25. isavoyage says...

    What a beautiful essay and STUNNING illustration!

  26. MK says...

    This really spoke to me. My brother is severely disabled, and I agree that all the media representations of the heroes overshadow the day-to-day realities of most cases. Most aren’t piano prodigies, or math whizzes, but people experiencing a lot difficulty and really hard days. Thank you for sharing your story so honestly.

  27. Lesley says...

    This was a beautiful essay. I feel comforted by your honesty and love.

  28. Julie Kim says...

    Hi, CoJ readers! Julie here. I am floored by the outpouring of support here and just want to say thank you, especially to those who took the leap to share stories about their own children, parents, siblings, students, and patients. It means a lot to me that you can see parts of your experiences in my story–this is what motivates me to keep writing. I am buoyed today by your empathy and tolerance for complexity. (And to all the parents out there who are reading this, but too tired or busy or sad to comment, I see you! You are not alone!) <3 <3 <3

    • Agnès says...

      I don’t know about parenting and can’t judge that, but you’re e really good writer. Love your work.

  29. Kelly says...

    Beautiful and raw essay… and as a special needs mom myself, it struck uncomfortably close to home. My initial thought was, “those are things we should never talk about.” those conflicting feelings that so often skew towards the despair end of the hope spectrum. But those on the outside see only what I allow them to see — either my (sometimes feigned) joy or whatever description/explanation I’m going to give today for who my son is. Most of the world will never know what that full range of emotion is — every day — for a SN parent. Thank you for writing this.

  30. Jill says...

    This is such a beautiful essay. Thank you for sharing it and for being so open and unflinching in parsing your feelings about parenting Izzy. I really admire your approach and your writing.

  31. V says...

    Okay. As an autistic (now former) reader of this site and what neurotypicals would call extremely low-functioning (we don’t use those terms for obvious reasons) you could have thought more about this. These comments were extremely disturbing and triggering for me (and I’m sure other disabled people- because yeah we use the internet) to read. I grew up with parents that hated me for daring to be alive, that used the self-victimising language I see in the comments here. I have never had a paid job, have had few friends/relationships in my life and have PTSD due to the abuse I’ve suffered for being disabled. I continue to live with my abusers due to my inability to work. As lonely as my life can be and as burdensome and worthless as you all see us, I guarantee my life is no less important than yours. I am not disabled because I was “born different”, I am disabled because I was born into a society that absolutely refuses to accommodate for us and shames and abuses us when we fail to meet standards you set for us.
    In retrospect I’m not sure this site has ever featured a disabled or neurodivergent person’s voice (perhaps one every 5 years) but you are inflicting serious trauma onto your children that they may not recover from. Children do not exist to fulfil your fantasies of parenthood. If you cannot love a disabled child – you cannot love a child.
    Having a conversation like this in a space where you are not validating disabled voices, allowing us to speak for ourselves (including when you don’t agree with what we’re saying), allowing us to be CENTRAL in any conversation about disability is irresponsible and cruel. Having a disabled child is not “brave”. “Brave” is those of us that are alive today in spite of being told every day of our lives that no one wants us to be. Your child being disabled is not for or about you. This is not a part of a story wherein you are the protagonist. Your disabled child is not a divine punishment or challenge. We are HUMAN BEINGS.

    • Joanna Goddard says...

      thank you so much for your feedback, V. i really appreciate it. i hear you that we haven’t featured many neurodivergent voices, and we will absolutely change that. thank you so much, i really appreciate your taking the time to write. joannaxo

    • Kay says...

      Ugh, yes!!! I know I cannot possibly relate to being disabled but having an autistic son, this is exactly why I hated this article. Thinking of children as a burden or raising them as “brave” is so icky to me. Thank you V! You articulated it perfectly.

    • Ray says...

      Thank you V! Love this perspective, agree with everything you say. You are a light in these comments.

    • Allison says...

      Amen, V. Thanks for speaking up, and I am sorry for the pain this caused you. The featuring of this article — and the comments below, many of which, yes, do use self-victimizing language — lets me know how much work we still have to do in the disability community to center our own voices. As someone with a physical disability I was dismayed to read this article. I scrolled down to read the comments, and felt even worse. It perpetuates ableism when we continue to center the voices of the parents of disabled children but not the people with the disabilities. It also infantilizes people with disabilities because we are only hearing their parents speaking FOR them and not hearing from them in adulthood. Children with disabilities grow up to be adults, and many of them have vibrant, interesting and, yes, enviable lives. They are human beings that do not solely exist for the purpose of disappointing their parents expectations for a “normal” child or being some sort of “inspiration.”

      Newsflash: nobody knows what sort of child they will have. And many parents are disappointed. Why would you pin this all on a disability? She could have disappointed you in a thousand ways even if able bodied. Have you tried to play Bjork for your child? She might love it.

      Cup of Jo, I was so happy when you featured Rebekah Taussig and we need more of those voices to counteract these harmful narratives.

    • Jill says...

      That’s right, V! Preach!

    • Jill says...

      CofJo presents as inclusive but this essay was decidedly not; it is one person’s chillingly narrow-minded view of personhood, worthiness, ability, and human dignity.

    • Anne Elliot says...

      In fairness to the author, she did not describe herself as “brave,” and to the extent other comments did, I read them as finding bravery in her admission that sometimes parenting a profoundly disabled child is really hard, not that they thought she was brave to even be a parent. The implication that every communication involving her disabled daughter must focus exclusively on her daughter, denying her own experience (as you do by saying “this is not a part of a story wherein you are the protagonist”) — that sort of response is exactly why other people are saying she’s been brave to write what she did. There is definitely a need for more conversation centered on the voices of the disabled, but we do not need to invalidate someone else’s experience in order to ask for space for our own.

    • Annie says...

      I hear you, but this is Julie’s story, not your story. This is how she feels. Your experience does not make it impossible for her to express her complicated emotions over having a child who is severely disabled. I’d be shocked if she didn’t have complicated emotions.

      And in her case, the disabilities her daughter was born with are extremely life-limiting, not just to the child but to her own life — her child may never talk or walk or function above an infant level. That’s another level of disability than what you are describing , simply by being able to make a comment on a blog. So I think it’s OK for her to talk about this from a parent’s perspective, especially when she is so obviously not alone in having conflicted feelings about the wildly divergent path her parenting has taken. Nothing at all in this reads as abusive.

    • Roxana says...

      Anne Elliot and Anne, thank you for your wise and measured words! As the mother of a child who has disabilities, I greatly appreciate your comments.

    • anon says...

      V, thank you for your first hand perspective, it has helped me gain more insight. I don’t know who would have ever call you “low functioning” as your comment is so thoughtful and personal. From what you have shared, it is a travesty that your parents hurt you so much with their words and actions.

      And…

      I think it’s important to recognize that as you’re calling CoJ, and many commenters out for their insensitive remarks, saying comments posted are diminishing of your value and worth, that your comment pretty much is doing the same for the commenters own experiences and feelings, it does go both ways (recognizing that we need more non-neurotypical voices to be heard). Nowhere in these comments have I read that the moms loved their child any less because of their disabilities, or their children’s are any less important. Nor did I read that they didn’t believe their child could accomplish things. Rather what I read were accounts of expectations that they realized they had to change and adapt, depths of love and yes, strength, because any parenting requires a deep amount of strength, they didn’t realize they had, beautiful and hard lessons learned from their children, and raw conflicted feelings at times of vulnerability. Lastly, I read nowhere, accounts of diminishing their child’s human-ness. Most parents I know (including myself) are trying to help fight the fight for what should be broader and more acceptable social standards, and are advocates and allies towards changing attitudes towards disabilities.

      Isn’t it better for a parent to be honest as they grapple with their (oftentimes) complex and (sometimes) dichotomous feelings? I believe doing so will actually help us be better parents, these do not make us all loveless parents. It pains me to read that your parents weren’t able to work through their own biases, and that you have been subjected to their shortcomings. I don’t ever claim to be the best or all knowing parent. But I know that by being honest with my feelings and working through them, knowing that I can’t possibly know what joyful is without knowing what sorrowful is, I am able to see and accept my daughter as the unique, beautiful, singular individual that she is, whatever it is I may feel I might have lost when she was first diagnosed as a toddler, I have gained back tenfold in the light, love, and joy she brings with her.

    • Allison says...

      @Jill, thank you for your important comment as well. You said it all. And you said what I was trying to say (much less eloquently) above. For a site that attempts to be inclusive — and many times succeeds — this was not inclusion.

    • Bea says...

      I agree with you wholeheartedly, V.

      Joanna, I’m not sure your comment really even begins to address what this commenter is saying.

    • Holly says...

      It’s really great to hear from you V and hear your perspective. I am a mother of two young children on the autism spectrum, and I agree that this “high functioning / low functioning” nomenclature that people use marginalizes and categorizes people who cannot be categorized. Everyone has strengths and challenges. I absolutely agree that it would be wonderful to hear more neurodivergent perspectives on this site, but I also loved this post for providing a space for another voice that doesn’t get heard much. Most parenting posts are interesting to me, but don’t really resonate because my life as a parent of a child who cannot communicate with me is so different. He is a happy and healthy boy and I love him so much, but it’s definitely a different experience parenting him than a neurotypical child. My daughter also has a diagnosis, but she’s only 2, so time will tell. My point in all this is that isn’t it possible that both your perspective and the poster’s perspective are useful, worthy, and valid? I want to hear from both of you – both for insight into what my children can become (if I’m lucky!), and to hear from other parents who struggle with their own challenges, internally pushing back against any instinct making them feel ashamed or sad about their beautiful child. I hope you keep posting and participating – we need to hear from you.

    • Amy says...

      Anne Elliott, Annie and Anon – thank you for your eloquent response to this comment.

    • Coleen says...

      V, I appreciated your courage to share a difficult experience and situation. It is more painful for people with hidden or invisible disabilities such as mental health / psychiatric. There are parents and family members who care and support indefatigably. On the other side, there are those who inflict abuse, alienation, discrimination, rejection and shame. This article triggered painful, negative and toxic emotions within me. I am fortunate that I am able to hold a job, earn a living but exerting so much effort and grit to survive everyday without family support. To hear that you are difficult, faulty, crazy and unworthy is horrible. And parents favor children who are ‘well’ and more successful in their terms….To think, the disabilty runs in the family. Yet, I acknowledge the side of parents who face extreme challenges on raising and taking care of children with disabilities. Their expectations were unmet.

    • K says...

      Thank you so much for posting this comment, V. The ableism in the article and in many of these comments, including those to you (which are patronizing), are dispiriting.

    • Erin says...

      Thank you, V for your words. As another long time reader of Cup of Jo, a parent of a child with a dis and a dis scholar, I found this to be an untimely, ableist, and inappropriate perspective to highlight, esp. in light of the fundamental assault on disabled lives that rages in this political moment. There is an incredible opportunity here for Cup of Jo to reach out to disabled persons such as V and disabled activists, to cover disability with the same humility and representation with which you have been covering race and racism. But this was decidedly not it. I’m deeply disappointed, not to mention offended, by this perspective. It is certainly true that parents have a whole range of emotions when they are raising children with disabilities. It’s also the case that when they assume a platform, they bear responsibility for the words they write. Although I see the resonance with many parents of children with disabilities, that, coupled with the absence of disabled voices not just in the comments but on this blog, and the few critical comments here demonstrate that able bodied folks, parents included, have much more listening to do. Please feature disabled activists and perspectives on this blog so we can all grow further out of rather than entrenched into our ableism.

    • Meredith says...

      Thank you, V, and others, for voicing this. I’m disabled due to a rare genetic disorder (not nearly as rare as Izzy’s, though). At the age of 30 I am still unlearning every day the profound ableism I grew up with and face it every day in myself, in others, and in the world around me. I know my life would be tremendously different if I had been raised with acceptance of my disorder, my body’s limitations, and also, therefore, the care I need to flourish as much as I can.

      If I can speak directly to Joanna for a moment, in response to the comments along the lines of “Well, this is Julie’s truth”: What I would like to see on this site is not JUST the representation of more disabled voices, though that is, of course, necessary. I would ALSO like to see essays like this contextualize their own truths through the lens of, in this case, ableism (in other cases, other kinds of privilege/context). I don’t want to speak for Julie at all or to say that her experience should have been any different than it was. In many ways I found her essay moving and enlightening, especially in her powerful honesty about her experience. However, that experience of hers was shaped by our culture’s profound ableism. She gestures at that (and my sense is that she does seem to really get this), but I feel a fuller exploration of that dimension would have been helpful and would, for this disabled reader at least, have felt more generous and inclusive.

      The tl;dr version, for all the “yes, but” commenters on this thread, is that it’s not enough just to claim something as someone’s truth. It’s also important to contextualize where that truth comes from.

  32. Rusty says...

    I am in awe of this essay.
    Thank you.
    So fraught with gut wrenching realities that no-one even dares whisper, let alone acknowledge.
    It really, really, made me think, so very deeply. About things I’ve never dared to think about before.
    I’m so moved, I know I will never be who I was before I read this.
    😌

  33. Sarah says...

    Thank you for sharing this honest, powerful essay. Have you thought of having more stories featuring people with disabilities? I worked for many summers at a camp for kids with physical disabilities. With a one-on-one counselor to camper ratio, we got very close with the campers, who spoke candidly about their lives. Many struggled socially at school to connect with their peers. Older campers confided that they were worried about life after schooling and that companies wouldn’t hire them because they may need adaptive software. As staff, we often found ourselves having the same conversation wondering how we could help. One small way may be getting disability stories out there, exposure. As the essay author mentions, people with disabilities are often told how inspiring they are, or that they’re “heroes.” Most people just want friends and a happy, fulfilling life, not to be responsible for inspiring someone. Clearly I could go on and on. I think it would be wonderful if Cup of Jo created a series of stories around disability. There are so many disabilities (visible and invisible), with varying severity, and many people have never known someone who has one. I’d love to hear from women who may be willing to share about their lives, as a person with a disability or mother of a person with a disability, so we can all listen and learn.

  34. Andrea Wilson says...

    Brave, beautiful, honest writing. Thank you for sharing.

  35. I can’t wait to read your memoir, wonderful article and beautiful illustration cup of jo!

  36. Anne says...

    Thank you for sharing. My son is 6 and has cerebral palsy. It’s refreshing to read a relatable experience.

  37. Jeannie says...

    Thank you so much for posting this. This seemed so honest to me. I am 13 weeks pregnant and just got my NIPT and NTS results, all normal, so it also brought back some anxiety. It took 3.5 years to get pregnant and lots of infertility treatments, and during that time I came to truly dislike “the odds.” We occupy 100% of the experience we have, and there is always someone in that small percentage of cases that’s experiencing what it’s like to be the odd one out. I wish you joy with your daughter, and I hope I’m able to be as strong of a mother to my daughter when she’s born, however she is. Thank you for sharing your story.

  38. MB says...

    What an incredible piece of writing – honest, thought-provoking, brave, and such a good account of parenthood in general. Thank you for this, the timing is perfect and is a comfort to read today.

  39. Kelly Simmons says...

    “she is both miracle and mistake” — what a sentence, what honesty, what beauty. Thank you for this essay.

  40. Emma says...

    Thank you so much for this. My little cousin turns twenty next year. Developmentally, he is about eight months old. His parents have tried everything they could think of to help and I can’t even begin to imagine how they feel about it, but he is loved. There are moments of grace, and joy, and lots of hardship, and I’m sending you and Izzy love.

  41. Olivia Spalletta says...

    I have a son with autism and two typical kids. I feel sometimes like I’m part of a secret society. Most other people, even the well-meaning ones, get SO uncomfortable around my son. I think some of them are trying, but it’s like their barometer for what’s normal is stuck. Parents with other different kids, the ones who know how to interact with my child, or at least try, who don’t skip a beat when he starts flapping his hands and making sounds–thank goodness for those people. That’s what it’s like to feel “fully human,” to be in the presence of people who act like we are.

    We’re friends with lots of other families, some with typical kids and some with diagnosed kids. The parents with typical-only kids, sometimes I feel like they’ve been eating chocolate ice cream their whole lives, and when they encounter my strawberry flavored kid, they have no idea what to do. I used to long for a chocolate-only world, too. But when I see those parents founder to expand their reality, to be comfortable in the presence of difference, I understand that my world is bigger.

    I don’t know, honestly, if I would change my son (maybe, since it would make his life easier). But I know for sure I do not wish to be the person or mother I was before I had him. And I love being part of an extraordinary community of parents who know what it’s like to be brought daily to their knees with sadness and joy and hope and rage, parents who have access to a deeper, truer, harder, and fuller way of being in the world. I know (I know!) parenting typical kids entails all of these emotions on a daily basis as well. But parenting a kid who is not “normal” shatters so much of the ground you stand on–it just brings you to a different level.

    • Kate says...

      Yes!!! I feel the same way about my son, his flapping makes us laugh but others are unsure of how to react. My son is so happy and the thought of anyone treating him differently is the only thing that causes me some sadness.

    • cg says...

      love your last paragraph. I commented earlier, but failed to mention that I can’t imagine my life without my daughter, despite the various, and sometimes, dichotomous feelings I’ve experienced. I am curious, what area do you reside in?

    • Roxana says...

      “I love being part of an extraordinary community of parents who know what it’s like to be brought daily to their knees with sadness and joy and hope and rage, parents who have access to a deeper, truer, harder, and fuller way of being in the world.” YES! 1000%.

      I have one son who has Down syndrome and two typical kids. I wouldn’t change my son who has DS for anything. I am profoundly and unspeakably grateful for him, and for how his beauty has changed me and my view of the world.

  42. Lu says...

    As both a mom of a very young child and a young doctor on a path of becoming a pediatrician, I cannot begin to explain what a profound impact this essay has had on me. The sentiment, vulnerability, raw honesty and an absolute outpour of love you have for your daughter is beautiful. This forever changed the vision of motherhood and life you envisioned for yourself, but you’re here, day after day, bravely embodying the vision of motherhood and life -she- has envisioned for you.

    *I’m sorry if there are language errors in my comment, as I am not a native speaker.

  43. Charlotte says...

    Thank-you for sharing your story Julie. The lives of disabled people who are not ‘heroes’ and that of their parents are so rarely talked about but it is so important.
    Thanks for discussing Cup of Jo.

  44. Melinda says...

    Just want to leave a note that there is a wonderful Aussie podcast called Too Peas in a Podcast, featuring two mums who each have twins with physical and intellectual disabilities. It has taught me SO MUCH about the additional challenges these families face and how much BS they receive from (often well meaning) outside sources. It has helped me to be a more empathetic aunt, friend, advocate and soon-to-be-mama. I really recommend it to anyone who wants to learn more (or anyone who is a fan of those transcendent female friendship podcasts!).

    • Heather says...

      Yes! I learned about Too Peas in the comment section of Cup of Jo and LOVE it! Was coming here to recommend it too!

  45. This is an absolutely gorgeous piece of writing. Please invite Julie back again!

  46. Aliki says...

    As the lucky mom of an amazing autistic daughter, I realize that our journey as parents is as unique as our children’s developmental timelines. We each need our time to process and move on and each of us does it through a different path. I completely understand why disabled people dismiss the idea of grieving children that are happy and very much alive, however it seems that for most parents this is an inevitable stage towards acceptance. Acknowledging it and eventually working through it allows us to enjoy our children like they (and we) deserve. Parenthood is a wonderful experience, no matter how hard. We shouldn’t allow grief to rob us of it.

  47. Christel says...

    This was so incredibly touching. Thank you for sharing your strength, your wisdom and the incredible reminder of what really matters — from the margins of those intake papers, “happy and healthy.” Much love to you and Izzy. Xoxo

  48. Sarah says...

    gut-wrenchingly vulnerable, eloquent, powerful, and beautiful. I thought of the japanese art form kintsugi, the instilling of gold to highlight the beauty in cracked pottery. the atlantic article is also a must-read. thank you for expanding my heart.

  49. Nina says...

    Thank you. In 20+ years of special needs parenting, I’ve read many books and essays, but I’ve never read anything that captured the emotionally complexity the way this piece does.

    My son is now in his 20s and although he has done far better than expected, the drug of hope did quite a bit of damage.

    I am forever grateful for his progress and his existence and yet when I see his peers moving forward to grad school, getting married, doing exciting things, there’s a little piece of me that is so sad I could die.

    • Jennifer S. says...

      “The drug of hope.” You put it so perfectly.

  50. SN says...

    Beautiful essay that resonated so much with me… thank you for your honesty and sharing your story. This is the kind of writing that will provide comfort to future mommas who have to google, search, desperately seek information and try to understand what ‘xyz diagnosis’ means for them, their child and their family — those mothers who are simply looking for a truth amongst endless questions and unknowns. I’ve been there… and it can be a dark place. But in truth there is light. Thanks for this light.

  51. Mona says...

    Thank you for a beautiful essay. Many of us have been where you are right now, and we understand the process of grieving which never ends., but rather morphs and stings anew with each fresh loss. It gets better, I promise. Savor the small joys each day.

  52. jeannie says...

    What you said about grieving the loss of an “Idea” reminds me of the mourning one goes through when facing a terminal diagnosis — grieving the loss of the life one was looking forward to and the future might have have been. That grief is legitimate and real. My heart goes out to you. Thank you for this post.

  53. Rose says...

    Oh my heart. Reading your essay was like walking down a well-worn path. My daughter is nine with severe physical and cognitive disabilities. Being her mother has been a tempest of emotions, especially during her first three years. The grief for the imagined child I lost. The overwhelming love mixed with overwhelming guilt. Feeling flattened by endless need, but feeling like I was never giving enough. Loving every inch of her, accepting every inch of her, but feeling the weight of everyone else’s expectations, misperceptions and pity. Feeling so alone and isolated, but unable to truly connect with others because they could understand the complexity of emotions I was feeling. I see you, Julie. I feel it all. I would give you this one thought, it is this. You will find an even deeper well of strength and resilience in yourself than you could have imagined. I have become a better person, a better woman, a better mother for having my daughter. I can’t even recognize who I was before I had her. I would wish you the same transformation. Sending you bottomless love through it all.

  54. Christa says...

    Thank you for your honesty, this is beautiful. <3

  55. jeannie says...

    I am completely blown away by your brave and beautiful post. There are so many taboos about speaking the truth about our true feelings and I appreciate your honesty, which reflects what many mothers feel and opens the door for all of us for to express what we are dealing with and what is in our hearts. Life can be hard and motherhood complex. Speaking honestly allows us all to connect and comfort one another. Thank you.

  56. Kat says...

    This was such a brave and beautiful essay. Thank you for sharing and for the book you’re writing. You bring up such important truths and your feelings are so normal and important. I loved how you speak to your inner experience but also connected it to wider cultural and social norms we have about parenting, disability and grief.

    Something I’ve noticed recently is how much more acceptable conversations on grief, trauma, loss and the messiness of life are becoming. Not so much in the mainstream news but definitely in spaces like Cup of Jo and other blogs, podcasts, friend circles, etc. It gives me so much hope and joy. I think for such a long time, powerful societies have dominated in creating cultures of shame around the range of human emotions that are all normal parts of our biology and experiences.

    It’s like there’s this collective sigh of unbuttoning our pants and just letting our full selves all hang out. I’m so here for it all! The real, the uncomfortable, the growth and the fear.

  57. Rosemarie says...

    Visceral in its honesty and thoughtfulness. Thank you for this piece.

  58. justine says...

    Wow, what an essay. Powerful and beautiful.

  59. Amy says...

    Thank you for putting these feelings into such true and good words. Reading this brought back to the days over twenty years ago of coming to terms with the unexpected lifelong challenges one of my children turned out to be facing. For me, hearing from others who could be honest, as you are here, was crucial in learning to be the parent he needs. I still need to hear those voices and talk to those who have been there—I always will. I look forward to reading more of your writing.

  60. Ritu Gupta says...

    Julie, thank you for sharing your story. It was honest, vulnerable and beautiful. I wish I knew you so you could lighten the load on your heart with me. Sending you strength and love.

  61. Grace says...

    Thank you for this powerful essay. I’m a speech pathologist and work with preschoolers whose parents are navigating this uncertain and stressful terrain. I try to connect parents to form relationships when I can. I am going to share this with colleagues. Empathy is so critical in our field.

  62. Lizzie says...

    Such honesty! So needed. So beautiful. Thank you.

    • Lottie says...

      Thanks for sharing your experiences and thoughts xxx

  63. Laura says...

    Thank you so much for sharing this. As a teacher for students with severe autism, I hear a lot about how parents whose children have very severe autism feel uncomfortable with the neurodiversity movement. To them, autism isn’t just another, equally valid way of being in the world. It impacts their child and family’s ability to be in the world in a very real negative way. That doesn’t mean they don’t have wonderfully deep relationships with their children, just that it can be hard to think of their child’s autism as another positive facet of him or herself. Also, there is an excellent book of short essays by parents whose children have disabilities called My Baby Rides the Short Bus.

  64. Lora says...

    This essay is gorgeous, visceral, and thought provoking. Thank you for writing it. Please remind us when your book comes out! I look forward to reading it.

  65. Michelle says...

    Oh gosh. Thank you for sharing this story. My daughter is almost six and looks pretty “normal” now, after a complex medical diagnosis that stretched through her first year of life and required lots of surgeries and therapies to get here. I get to celebrate with extra joy when she does something I wasn’t sure she’d be able to do, but I still mourn. I’ve never been a mother without trauma, and that’s a grief in itself. I’ll never know what it’s like to be a “regular” mom with average sized worries. Every time I call the doctor about a fever or ache, I get “well with her history, we’d better…” I have calibrated, mostly, but it’s still a process.

    • Hollie says...

      Oh, man. That sounds hard. It’s clear how much you appreciate what you have, and that doesn’t make it less hard. Sending you hugs.

    • Kate says...

      Thanks for this comment. I feel so seen, I’m fortunate in that my second baby was the medically complex one, but I know what it’s like to mother with trauma. It never goes away. The fear of losing her.

  66. Katherine says...

    Damn. This is one of the best written pieces I’ve ever read on COJ. Sending love to you, Julie.

  67. Amor says...

    thank you sharing. i needed this. my daughter. diagnosed with ASD, turned 4 a week ago but she’s around 2 in developmental age. I wonder too of all the things I couldn’t do with her. the sadness overwhelms me sometimes too. xoxo

  68. Jess says...

    Thank you, Julie. I am grateful to have met Izzy in your words.

    • Carolynn says...

      Wow, I so appreciate this essay. I’m 36, confident, sassy and love life. I want a child but I am too nervous that my expectations might not be met (via 1 of a million imperfections) and I wonder if that inherently would make me a poor parent, only wanting a perfectly healthy child with no issues. Seems unfair or wrong of me to only want a baby if it can be guaranteed perfect.

  69. Fernanda Novais says...

    Beautiful assay. I have an Isobel of my own (middle name). As a Bjork fan, I couldn’t help giving my daughter this name that represents so well children — tiny sparks that bursts into a flame :)

  70. Abby says...

    This essay made me cry. So much realness and relatable experiences. I felt the same loss and love. Those contradictory feelings at first and guilt for having to explain why my child was developmentally behind. Big hugs to everyone else who has gone through these feelings and can’t explain this eloquently as she has.

  71. Julee says...

    Thanks for being so honest about your daughter and your life.
    Thank you for loving your daughter as she is. Your love is powerful and pretty amazing.
    Her bangs sound really cute, btw.

  72. Yunah kim says...

    Thank you. Sending you love.

  73. Roxana says...

    Oh, my heart. Thank you so much for this! Thank you for your openness and for your realism. This all resonated so much with me, and was so beautifully written.

    We learned at birth that our youngest son, Ezra, (who is now 3 1/2) has Down syndrome. We chose to forgo genetic testing (despite my “advanced maternal age”) because we did not want to participate in a “system” that is, in large part, designed to give us the choice to end his life. He is who he is. He is who God created him to be. However, I would be lying if I said that I did not grieve the “loss” of the person I thought or expected him to be. I’d also be lying if I said that I didn’t still go through seasons of grief over unmet expectations and hopes for him. At the same time, as any parent, I grieve when my typically developing children don’t meet my expectations or hopes. That’s true for all of us, right? We grieve when anyone we love isn’t who we thought they’d be, or isn’t who we think they should be?

    I greatly appreciate you pointing out the problem of the modern narrative of what those with disabilities “could” do or “might” do or “can” do. “Attend college! Become a para-Olympian!” The list is as endless as we are all unique. Every time someone tried to encourage me by saying that he “might speak three languages!” or “be the first. . . !” I found myself asking inside the quiet of my broken heart “But what if he doesn’t?”

    I find joy and (dare I say it?) hope when I accept the brokenness. The truth is that we are all “broken” in some way shape or form, but it makes us no less beautiful, no less worthy, no less human, no less lovable. When I reconcile myself to that truth, I find that our life is just life in all it’s everyday mundane drama and mess. And I love it. Oh, how I love it! There is joy there, in the reality of what is immediately before me, in the moment that I can handle (or not handle), not in the tomorrow that I don’t yet have or know. I find hope in that moment, which propels me into tomorrow. Even if I still don’t hear him call me “mama” tomorrow, he will hopefully be healthy and happy, and if nothing else, he will definitely be deeply loved.

    • Julee says...

      I am blown away by your courage.
      From the bottom of my heart, I applaud you for loving your perfect son, and for being honest about your feelings of loss as well.

    • Jaspreet says...

      Thank you for sharing your wise words. I really needed these. Sending lots of love and hugs your way. Your liitle ones are blessed and lucky to have you as their mom.

  74. Fran says...

    I clicked on your name at the bottom of the article, which linked to your twitter account. There I read “They say don’t read the comments, so I am reading all the comments.” You are beautiful, your writing is beautiful, and this is one of the most powerful essays on parenting and grief that I have ever read. While you read all the comments, I am going to read everything on your twitter page now.

    • Alissa M says...

      If ever there were a place you definitely want to read the comments, it’s Cup of Jo!

    • M says...

      This is so raw and honest, it touched me deeply. I struggled with this myself when i was expecting my two children, would i be able to handle it, would i cave under the grief of that lost imagined future. I think many parents of children with mental or physical disabilities struggle with this notion that disability is just another way to be and fighting through that while also trying to be a loving parent must be ao difficult. I think the narrative around disability needs to consider the parent as well, it needs to reflect the full and complex spectrum of life that isnt always positive and easy. Thank you so much for giving words to this feeling, sending you love and light

  75. Courtney says...

    Thank you for giving voice to parents of children with disabilities on your platform, CoJ. I too have a non typical daughter and reading this was very validating. ♥️

  76. Em says...

    What an honest, powerful essay that I will be thinking about for a while. Hearing from other mothers’ journeys is so moving.

    I also wanted to say that the illustration for this essay is also so well done and really captures the story in such a beautiful way.

    • Josephine says...

      Beautiful and true. I am forever caught in a tug-o-war with acceptance of my daughter’s profound challenges and guilt for wishing it just wasn’t so.

  77. Aurelia says...

    You should know that this essay is also helpful for those who are attempting to be part of the support structure (and cheering section!) for families faced with similar challenges. Through your words I’ve gained additional insight on how to usefully love my friend and her disabled baby boy. Thank you.

    • Seona says...

      Yes, I totally agree and was about to comment saying the same thing. I’m part of a cheering squad for my best friend and her little boy (now 7), this article was so insightful and helpful for me in understanding just a fraction of what she must be feeling.

  78. Liz says...

    Julie, I honestly took the entire day (while taking care of my 14 month old son with NCBRS, a very rare genetic condition causing severe universal delays and intellectual disability) trying to express what this article means to me. My son was only diagnosed last November, and while grieving the losses has become less intense, I do not think it will ever go away. This has been the most challenging, isolating, purposeful, heart-breaking, beautiful, lonely, and uncertain period of my life. Thank you for articulating some of the many, many conflicting feelings special needs parents experience over and over again, often without a listening ear who understands. Thank you for making me feel just a little bit less alone today.

    • Julee says...

      I pray you do not always feel so lonely in this.

    • Josephine says...

      I understand. I have felt this way too, still do sometimes, even after 20 years. ❤️

  79. Trish says...

    THE most honest account I’ve ever read! Thank you thank you thank you, from the mother of a severely disabled child who is now an angel. May you have the strength you need.

  80. Alison says...

    This was incredibly beautiful and humbling to read. Thank you so much for your vulnerability.

  81. Alex says...

    Such a necessary Brave piece. I have forwarded to my pediatric palliaitive friends so it can be shared in that community. Thank you and Izzy.

  82. Ashley says...

    This was a beautiful, brave essay. Thank you for honoring us all by sharing your experience and heart.

  83. Rachel Fall says...

    Beautifully and profoundly written. Thank you for sharing this part of yourself with us.

  84. Fay says...

    Thank you for this beautiful essay, Julie. Your writing is incredible, and your love for your daughter is beautiful to read. Personally, this has been a year of intense grief, and I’ve struggled to find essays that articulate what navigating ambiguous loss feels like. Thank you for using your words to help others feel less alone.

  85. Rebecca says...

    This was a really powerful essay, thank you for sharing your story and perspective.

  86. Elise says...

    Wow this is a stunningly beautiful piece of writing.

    I still maintain that my favourite parenting book of all time isn’t your typical parenting book about sleep schedules and baby led weaning, but a hauntingly, achingly, resoundingly beautiful memoir by Emily Rapp “The Still Point of the Turning World”. About how she learnt to parent her baby (who at a very young age was diagnosed with a terminal illness that would kill him by 3 years old) for the absolute moment and not for the person he would become.

    It changed my whole life and I am a different parent because of it.

    Thank you to these brave parents who share these difficult stories with us so we can be more present parents and also more present for those struggling around us.

    • Amy says...

      I am going to pick up this book. Thank you for recommending it.

    • Darcy says...

      Julie, what a beautiful piece. Thank you for sharing Izzy and your relationship. I echo what Elise says about “The Still Point of the Turning World” – it is haunting in the best way possible.

  87. Kathy says...

    Thank you so much for writing this. I can’t express how grateful I am for your words.

  88. cg says...

    Thank you for this. Thank you from the bottom of my heart, from the deepest, darkest part of my soul, you have capture everything I have felt and done and thought having a daughter with an intellectual disability as well (autism). She is 15, but at times is more like a 7 year old. Other times she is like the teen she is supposed to be. I mourned three children: the one I miscarried, the one that would’ve been assigned to us at the adoption agency in China had they not messed up on some part of our paperwork, and the daughter that I love so much but didn’t imagine ever having.

    Like you, when we were in our paperchase (as they called it) I imagined various scenarios and conversations I’d have with my daughter. I had saved old love letters and journals so that I could share with her when she experienced her first heart break, now not ever likely. When she was first diagnosed with autism (before she turned 3) I researched, read, considered all sorts of solutions to help her get better. I swallowed back hot tears many times and still do, when she didn’t reach milestones, let alone exceed them. Slowly I’ve learned to celebrate any milestone, although at times it’s still difficult. No one ever told me that in some ways, it is harder now than when she was younger. When she was younger, she was still “cute”. She’s a teen now. She has a sight issue (one quarter of her sight, literally from 12-3) is gone. While all her peers are doing driver instruction, she can’t even walk without “looking funny”. She doesn’t have any friends, but she loves people. It will always be hard, but in between those difficult moments, whether it’s my brain or my heart, there are so many wonderful, pure moments too. I just want you to know that your essay has truly touched me deeply, and that you are not alone, and have also reminded me that neither am I.
    Thank you.
    -Fellow Bay Area resident

  89. Megan says...

    Thank you, thank you for this essay. You said some brave things. I am the daughter of two disabled parents- neither of whom had a real “success” or “overcoming” story. Their struggles were moment by moment. I grew up with so many conflicting emotions: love, embarrassment, admiration, shame, defense, resentment. I remember thinking they shouldn’t have been “allowed” to marry or have kids as a teen. I resented taking care of them in their final years while my kids were still so tiny. But the truth is I loved them and love them still. Just reading another woman admit all those conflicting emotions and telling the truth is powerful. Thank you.

  90. AJ says...

    Julie, thank you. Gosh. Honesty is truly the greatest thing a writer can give. This felt like a piece of your soul. Sending so much love and peace to you and beautiful Izzy. X

  91. Kimberly says...

    This is unquestionably the most amazing piece of writing that I have ever read. I have never before encountered an article that was so candid and honest with no prevaricating or compromises.
    If this article is a reflection of you as a person (and I truly believe that it is) your children, husband, family and friends are lucky to have you in their lives.
    Thank you for sharing your unvarnished truth.

    • Ari says...

      Ditto. Ditto. Ditto. Writing and sharing this is tremendous.

  92. mb says...

    There is such heartbreak in the human experience. This essay is compassionate and brave. I deeply appreciate how it asks empathy from the reader and do not discount the courage it takes to give such testimony. Thank you for sharing your story and Izzy’s.

  93. Neka says...

    The wonder of being both miracle and mistake…my kind of grace.

  94. Beth says...

    Beautiful, raw writing.

    Can I recommend Penny Wincer’s book Tender? It is all about the complexities of caring – parent, partner, whatever role – and it is astonishingly brave and reassuring to those of us dealing with lives we hadn’t imagined. She is on Instagram too (@pennywincer).

    • Gem says...

      Thank you so much for this I’m about to order Tender. Having my mother become disabled when I turned 18 has turned my whole perception of what my adult life might be and I’m still grappling with that over 10 years later xxxxx

  95. Tess says...

    Wow. Just so, so beautiful

  96. Hazle says...

    “It may be painful to relinquish the visions we had for our children, but it’s even more painful to cling to expectations that we discover, over and over again, are unlikely to pan out.”

    Swap the word “children” for “selves” and this sentence perfectly captures what I’ve just spent an hour talking to my therapist about, regarding my experience of living with a chronic illness.

    Thank you for such an honest essay.

  97. Cynthia says...

    This is so beautifully written!

  98. Nicole says...

    Thank you, Julie, and CoJ for sharing this beautifully written piece. Life is so complicated- heartbreaking and beautiful, and this essay illustrates this so well. Izzy is lucky to have you as her Mom.

  99. MJ says...

    Thank you for sharing this. My child was born differently than we expected and the roller coaster is very real. Still learning over here but so so appreciate you writing about it.

    • Michelle says...

      What a beautiful way to say that. My daughter was too. It’s never a straight line. Hang in there.

  100. Shona says...

    This is breathtakingly beautiful. Thank you.

  101. Julienne says...

    Thank you for a profound, beautiful and honest essay.

    • Anon says...

      Yes, thank you! Incredible.

  102. Thank you, Julie. Your essay truly moved me, and was so thought provoking. Your love for your daughter shines through, as does your loss. I love the story of her name.

    What you wrote on hope reminded me of Pema Chodron, who, in her book “When Things Fall Apart” recommends abandoning hope. Thought you might appreciate that book if you haven’t read it already. xo.

  103. Ramya says...

    This is one of the most searingly beautiful essays I’ve read in a long time. Thank you for sharing your inner world and your daughter’s life with us.

  104. Sarah says...

    I don’t know about parenting a disabled child, but in my career, I’ve witnessed the complexity of emotion that comes with being a caregiver. It can be equally dark and beautiful. All at once, the situation can spark joy and resentment. People who don’t understand may want simple answers and silver linings. Maybe those people don’t really want to understand after all. It seems you are doing an incredible job.

  105. Justine says...

    What powerful article. Thank you for writing so openly and clearly about this.

  106. Anna says...

    Thank you for sharing this, and for Cup Of Jo for creating space for Julie.

    My older sister has a rare genetic condition, too. She is 38, nonverbal and will require full-time care her entire life. I grew up loving my sister, embarrassed by my sister, laughing with my sister and guilty for needing or wanting anything from my parents, because I saw how much my sister needed from them.

    You are right, Julie, the hero stories are the “allowable” stories, so I typically only share publicly the parts where I grew up loving and laughing with my sister.

    You are such a good mom. I hope you have a strong support network, access to respite care and live in a state with good benefits.

    • Jessica says...

      “You are such a good mom.” Anna, I love this. Thank you for your kind and profoundly human comment.

    • Ritu Gupta says...

      Anna, you sound like a wonderful sister and human being. Sending love.

  107. Annie says...

    Julie, I am blown away by your courage in acknowledging your layers of complex feelings and being able to write about them and share them with the worl. There are so many people out there who need to read this. I don’t have any situation like this in my own life, but am secretly terrified to see a therapist for these very reasons…because I might unearth feelings I’m not courageous enough to face. Thank you for your bravery and lots of love to you and your family.

  108. T Paul says...

    I appreciate your candor. Thank you for this. Some people will judge you harshly for your honesty. It does not matter. They do not share your experience. And some cannot accept their own grief.

  109. cl says...

    moving and well written. am hopeful that there is a pediatric palliative care team involved in your lives. will make all the difference in the work as you navigate this world.
    god speed to all your family

  110. Paige says...

    How heart-achingly beautiful your story and Izzy’s is, Julie. Thank you for trusting us with your vulnerability. I will be thinking about you and looking forward to reading your upcoming book!

  111. Steph says...

    As a mother of a unicorn (FOXP1 genetic mutation) myself, I weeped as I read an experience that sounded so similar to my own. What no one mentions about having a child with a disability…you go through a grieving period. You grieve the future you had imagined while STILL loving and being so grateful for the one you’re going to have instead.

    The thing is, it is all okay. All of the feelings are okay. So many people are so ready to remind you to be thankful things aren’t worse while they carry on with their “normal” children with “normal” problems and you try to schedule 4 appointments with 4 different specialists in 1 week.
    Some days I don’t think about how my daughter has a disability at all, since this is our normal. I walk a fine line of trying to not hold her back based on her diagnosis while also keeping my expectations in the realm of reality.

    There are days of sadness. There are days of anger. But there are so many days of joy. Most importantly: I have my strong-willed, fierce, loving, caring, hilarious, unicorn named Willow, and I get to be her Mama.

    • CandiceZ says...

      I love this. Three FoxC3 unicorns here.
      This was a beautiful and powerful story. Thank you.

    • m says...

      Yes. This puts into words exactly how I feel as the mom of a special needs son. xo

  112. Marlena says...

    Ow wow. Thank you.

  113. Hilary says...

    Thank you for being so vulnerable and sharing this deep and difficult pain (and beautiful love). Our society teaches us that pain, sadness, heartbreak, anger, etc. are all emotions to be avoided or ashamed of. But, through difficult life experience, I think of pain as inextricably linked to love. I wish we weren’t all so desperate to have the people around us hide their pain, which is just as much a part of life as love and joy are. Thank you for sharing your story and helping us better understand what so many parents go through. Much love to you and Izzy.

  114. Kiki says...

    Thank you, Julie. I’m humbled and awed by your courage in sharing such candid and vulnerable thoughts with the world. Parent-child relationships are complex, and you have so beautifully and honestly captured some of the more layered aspects of motherhood.

  115. S says...

    Thank you for your vulnerability. I am a speech therapist who works with children with various developmental concerns, and your piece reminds me that each child and his/her parent has a story. Much love to you and Izzy.

  116. fgb says...

    What a beautiful, honest essay. Thank you Julie for sharing it with us, and thank you Cup of Jo for continuing to bring us such thoughtful, lovely stories and people.

  117. Holly says...

    Thank you for writing this.

  118. Elizabeth says...

    Thank you for sharing some of your and Izzy’s story. I’m so sorry for the hard times you’ve experienced. I appreciate you being so open with us.

  119. Katharine says...

    I would love to hear Izzy’s perspective, and I know in her situation we will not. But I encourage Cup of Jo and readers to seek out writers with disabilities who tell their own stories, which is really important to fight ableism.
    Parental grief is complex and valid but it doesn’t help fight the oppression we all create when we maintain the false idea of “normal”.
    Some suggestions: Madeleine Ryan in NYT Parenting this week, Keah Brown, Imani Barbarin, Andrew Pulrang, Rebekah Taussig.

    • Hannah says...

      I second this. I thought this was a really poignant, honest essay. I also think disabled folks own voices are an important component of this conversation. One of the most paradigm shifting things I have learned working with the disability community is learning to reframe disability as a spectrum of which we are all a part. We all have varying abilities (both mental and physical), there is just a range we consider normal. Even though the built world (and our expectations) caters to that range, it is arbitrary. For example: if all doors weighed 100 lbs, stairs were all 36″, and you had to do a calculus problem to pick which floor to go to on an elevator, most of us would need assistive devices to navigate the world. That is not to diminish the very real challenges to living with or parenting a child with a disability. It is just to reframe and say that there’s absolutely nothing wrong with the person, it is the world’s inability to provide easy access that is in fact disabling. For anyone who is interested, Alice Wong, Mia Mingus, Stella Young and Lawrence Carter-Long are other great voices to check out in the Disability Rights community!

    • Roberta Williams says...

      Thank you so much for your comment.

  120. Emily says...

    JZP, I’m so, so sorry.

    • Suma Kinhal says...

      I’m a sister to a brother with Down’s syndrome and I’m raising a daughter with severe ADHD and anxiety. While your comment was meant to be kind, please don’t say sorry. When my older brother was born to my immigrant parents in the 1970s, who were both physicians, people kept saying “I’m sorry” to them. Don’t be sorry. Julie, you got this, it is hard, it is isolating, and but I can tell you it is love. Love of a and from child and between a children are like nothing else. My dad finally told people “please don’t be sorry, he is what God gave us.” Religious or not, we cannot look at disabilities as something to be sorry for, but we can offer support in so many ways.

    • Christina says...

      I believe the comment was meant for JZP who commented earlier on. And for what JZP wrote, the comment is appropriate.

  121. Christina says...

    Thank you for this, Julie.

  122. Caitlin says...

    Julie, thank you. It’s so intensely lonely to parent a severely disabled child, as I do too. I can’t tell you how many times I’ve needed to be able to say out loud how scared and disappointed I feel, but also how filled with desperate love. That acknowledging the pain is not giving up on the kid. And yes, we too kind of lose our minds when it’s time for her birthday. It was so powerful to see those thoughts in print, I’m both shaken and deeply grateful.

  123. Kay says...

    Sorry, although I felt this piece was well written and brutal in its honesty, I found the word “mistake” to describe her daughter, just so painful. My son is autistic and simply because he is years behind in his developmental, I would never describe his existence as a mistake. I suppose I applaud her honesty but parts of this were hard to read and made me cry because this is exactly what ableism is, seeing deficits instead of differences. I hope she finds peace and a support system and wish their family all the best, it is clear ya home filled with love.

    • Beth says...

      I couldn’t agree with you more. I felt the same way when I read the word “mistake.” That’s heart-breaking…

    • Steph says...

      I think the “mistake” she was referring to in that paragraph was that the genetic tests she underwent in pregnancy did not reveal her daughter’s condition. I read that paragraph as Julie acknowledging the conflicting feelings she experiences when she follows the idea of prenatal testing to its natural conclusion: find “errors” before they turn into actual people.

    • Agnès says...

      The word is chosen to be as shoking as the word “miracle”; I understand she means that her daughter is neither a miracle nor a mistake, she just is. I have read several of her essays and I think she writes about parenting in a very realistic, responsible, lucid way. Her child is not a gift, or the meaning of life, she just is, and I feel her whole text is full of respect for her daughter.

    • Kate says...

      Kay, I take your point that this word was difficult to read (and appreciate that it must be all the more so for someone in your shoes). But I think that the author’s decision to use that word (in addition to breaking a taboo and opening up a conversation flowing from that) was rooted in the fact that she had elected for genetic testing designed to catch genetic abnormalities. My reading was that, had that testing indicated that her daughter had the disabilities that she does, she would have terminated (or would have considered doing so). The fact that the testing didn’t catch those conditions means that in a very literal way, her daughter came into the world because of that test’s mistake. I don’t think that the overall tone of the piece was to indicate regret – quite the opposite. But the fact of her daughter’s birth given the circumstances was a mistake.

      I don’t know if I’m making myself clear but I wanted to weigh in because that word pulled at my heart, too – but I understand the author’s decision to use it and appreciate her use of a difficult word that reflects her situation and truth. I really appreciate your perspective as well as hers.

    • Lauren says...

      That’s too bad; I see where you’re coming from–maybe it’s a matter of personal preference or temperament?

      For me personally, insisting on calling everyone smart, or beautiful, or not a mistake, is saying that there’s something about being, say, an ugly unplanned child who does poorly in school that makes them less worthy of love or respect or something. But what might be disrespectful coddling to me could be gentle lovingkindness to you! And I think that’s ok too lol.

    • Kay says...

      Listen, I completely can relate to aspects of this essay and have read hundreds of others reflect on the disabilities of their children on various sites and forums that discuss this disappointment. There’s even a forum simply called “worried about autism” where mothers just list things their children can’t do yet and ask others if they think it might be autism as if it would just be the worst thing in the world. I cannot wrap my head around that. I just have a different perspective, I see my son’s differences as unique and “him.” Now I have no experience with physical disabilities but can only offer my own perspective. And please I saw someone say “sorry” above and I reiterate that that is just not something a mother of a child with disabilities wants to hear. Maybe we’ll intentioned but incredibly tone deaf.

    • Diane says...

      I agree with what Agnes said below. You can think of any human being as both miracle and mistake. We are all just simply people no matter what the circumstances of our abilities/disabilities. Also, in light of all the “lovebombing” that has been going on with respect to BLM from every blogger and commercial enterprise, I commend Joanna and team for offering balanced points of view for all types of people long before the bandwagon started. This was another thought provoking and heartfelt piece of writing.

    • Kay says...

      Yes every human is miracle and mistake but only those with disabilities have been treated as “less than” in a lot of circumstances and the word mistake in describing someone’s existence strikes me as not the best word. I know for certain I was “a surprise” and most likely a “mistake” but my mother never worded it that way to save my feelings. I know I am too sensitive so that’s probably part of it too, haha. I do think I have misinterpreted the meaning of that word in this essay but it’s important to have these different perspectives especially from other moms of children with disabilities.

    • Jen says...

      Kay, I completely agree. To everyone replying advocating for the use of the word: you’re a mistake…

      Now I don’t actually know any of you, so I can’t actually make that judgement (I do think some of you are being horrible and ableist, so maybe work on unlearning some of that?), but if you are reading this just take a second to reflect on how that statement made you feel.

      Now imagine it’s your own mother saying it about you. And before you go off spouting about how it’s fine to call others a “mistake” again (or any other horrible term) maybe think twice and respond to situations like this with empathy rather than whatever it is you’re currently displaying in the comments

  124. Jessica Pugliese says...

    Thank you for sharing your experience! You sound like a really wonderful mom!

  125. Pat Cook says...

    Dear Julie, I’m so sorry for the loss that you feel. I can’t even imagine what your going through. I have a niece who is autistic. I sometimes lay awake at night wondering about her future. Will she ever be able to work, will she ever be self sufficient. Also, i worry for my sister, who has to provide life long care for my niece. I wish there was something i could say or do for you, that would make you feel better. I am a person of faith. Im a Christian. I put all my faith and hope in God. I believe in Him with all my heart and soul. He is Good and He is Big. I pray that you feel God comforting you today. I will pray for you and your family.

  126. Greta says...

    Thank you so much for your vulnerability in writing this. I cannot wait to read your full memoir. I am a pediatric physical therapist, often guilty of focusing on milestones, and at the same time, my husband has a neurological disability. This is so helpful to read to better understand the difficult grief that some parents of my students may be facing. I plan to share your article with many of them. And yes, we do read everything you write in the margins. When Izzy is in school and has her first IEP, you’ll find out that every IEP begins with Student Strengths. That should be the most important focus…looking at what a child is good at, regardless of biological or developmental age. And, then needs are secondary to strengths.

    • Greta says...

      One more thing I wanted to add is that my husband would not exist with the modern medical techniques we have today. His embryo would have been tossed out because he has a genetic abnormality and a healthy embryo could be chosen instead. We often talk about this as a couple because it seems crazy to me that his whole life would have been snuffed out by medical progress. I’m so relieved he slipped through the cracks! Such an interesting thing to consider.

  127. Lucy says...

    You make me think about hope in new ways. Love your honesty and what you say about the freedom that comes from changing your relationship to hope. As a doctor, I’ve seen some people feel that when they choose to go on hospice. Wow. Thank you. Much love to you and Izzy.

  128. Katie says...

    Thanks for this writing Julie. This is so beautifully said and a perspective I wish would be shared more (thank you Cup of Jo.)

    “Celebrating the personhood” sometimes feels like a gloss, covering instead a lack of community and resources for people who have the most severe disabilities. To me, it feels like it gets exercised at face value a lot within social agencies and by those who are high-functioning and not as affected as many on the more severe end (ie autism spectrum debates about research). Those who really do that recognizing and celebrating everyday are the child’s loved ones and direct caregivers – and to them it comes innately, as it clearly does to you.

  129. mariah says...

    Beautiful essay. It brought tears to my eyes. Your honesty but also love shine through. You are such a good Mom.

  130. Sarah says...

    The older I get the more and more in awe I am of the complexity of life. Nothing really seems to be what it looks like from the outside and the realities seem infinitely more complicated—something that’s so easy to miss in the polarized dialogue so prevalent today. Thank you for sharing your reality with us; so beautiful and sincere.

  131. Lynn says...

    Hello from Oakland, Julie! You really got me with the oh-so-familiar daydreaming of future conversations with your daughter. I had “Izzy”, not short for anything, on the list of potential names for my same-aged daughter. Hope to see you and Izzy at a playground in the non-Covid future!

  132. Jackie says...

    What to say… I am living my own nightmare of sorts and preparing for a child that doesn’t fulfill some of my dreams. Trying to let go of those expectations, preparing for pity from others, and knowing that I need to be strong and figure this out. It feels like too much to bare. Thank you for your honesty. It gives me a glimmer of hope that I can do this.

    • Lauren H says...

      Sending love to you, Jackie.

    • Michelle says...

      Oh Jackie. I’m so sorry for what you’re going through. You can do it. Not necessarily because you are strong or special but because time marches on, and you keep breathing. There will be times where it feels impossible, but you will keep going and one day you will think “today wasn’t so bad.”
      People will say stupid things. But mostly they mean well. You will become an expert on whatever tiny slice of medical knowledge you’ve been sucked in to and you will find your (virtual, probably) village. It is going to be okay. You are going to be okay.

    • SN says...

      Jackie — you can do this. I promise.

      I was pregnant just a year ago with my daughter who I found out via genetic testing was likely to experience physical disability at some point in her life. It was a gut punch for me and my husband and put our whole world in a tailspin. At some points, I no longer wanted to be pregnant, but I just couldn’t imagine not being pregnant with her either. So time marched on. And she was born. And it was devastating and wonderful at the same time when I realized her life and her future, full of all the unknowns, were ours — and hers — to figure out. There still are days when I feel extreme guilt, and days when I feel extreme sadness, But lots of days of pure joys and happiness, just like any parent. And realizing the simple truth that nothing is really guaranteed, but we’re all just doing our best. It’s fragile, and scary, and it will test you. But you CAN do this. You will do this.

      Good luck; and whatever nightmare you are experiencing is so, so real. But the part of you, deep inside, that will get you through this will be your secret weapon, too. And this kiddo is lucky to have you as its momma, Congratulations. <3

  133. This is so beautifully written. I have been fortunate enough to work with many families with children who have serious disability. The media paints things far more black and white then the reality for so many parents, so it’s nice to hear about the experience in your own words as Izzy’s mother. Thank you for sharing your story, wishing you all the best.

  134. This is so moving and honest. My heart goes out to you and I also celebrate you. You are a special parent of a special child. Love and hugs.

  135. Megan Brewster says...

    This is kind of writing and realness and rawness and loveliness and pain all in one is why I come to Cup of Jo.

    • Wendela says...

      This is a beautiful piece. Ambiguous loss is very hard and confusing—I have experienced it in my own family. It is also very isolating. I love the image of your daughter smiling calmly on the couch through all the hectic activity of your older son. May she bring you and your family joy amid the sorrow.

  136. JZP says...

    Oh. This piece took my breath away. Thank you.

    I buried my 3.5 month old son yesterday.

    He was born 6 weeks early, and I spent much of his early life feeling a similar pain each time someone asked his age. “8 weeks, but developmentally only 2 weeks,” I’d respond, sure they were wondering why he was so small.

    Then, at 3 months, he was diagnosed with a rare progressive seizure disorder. The prognosis was poor: 50% of children die within a year, and those that live do so with severe neurologic impairment. Our son was having hundreds of seizures a day. My husband and I made the impossible decision to focus on keeping him comfortable until he passed away.

    “Somehow, Izzy slipped through the cracks and into existence, a reality I view with equal awe and rage. She is both miracle and mistake.”

    • mariah says...

      @JZP sending you the biggest hug! <3

    • Andrea says...

      My condolences. How heart wrenching.

    • Susie says...

      JZP- how impossibly hard. I’m so sorry for your loss.

    • Dana says...

      I am so sorry for your loss. My heart is with you.

    • Sarah says...

      I am so sorry for your loss. Wishing peace and love to you and your husband.

    • Maryann says...

      I’m so sorry for your loss, JZP.

    • AK says...

      JZP, sending you love.

    • fgb says...

      JZP, I am so sorry for your loss. Sending you love and light.

    • Cathy says...

      I can’t imagine how you must be feeling. I just want to send you so much love right now.

    • Katie says...

      I am so sorry for the loss of your sweet baby boy. “I buried my son yesterday” are words no parents should have to say. Sending you so much love through the internet xo

    • Wendela says...

      @jzp, I’m deeply sorry for your loss. What a profoundly sad story. I want to wrap you with blankets and bring you warm beverages and give you room to cry for months. I hope you are getting lots of support at this time. If you haven’t found one yet, your medical provider should be able to direct you to a loss support group for parents who have faced similar losses. Please take care.

    • R says...

      Thinking of you JZP. I am so sorry for your loss. I hope there’s food on your doorstep and maybe even a copy of Cheryl Strayed’s Tiny Beautiful Things.

    • Justine says...

      @JZP – all my love to you and your husband. (((hugs)))

    • Mona says...

      I’m so sorry for your loss sister <3

    • Liz says...

      Sending hugs to you and thinking of you and your son

    • Emily says...

      Sending you love and prayers for strength. I cannot even fathom your pain.

    • Maryn says...

      Sending love to you, JZP. <3

    • Denise says...

      @JZP What you did was everything. Keeping him comfortable. It was a short life your son had, but one full of love and parents who did everything for him. I’m so sorry for your loss.

    • nadine says...

      Your comment took my breath away JZP. I’m so so sorry for your loss, it is so unfair..
      How loving parents you have been to go through this. Wishing peace and love to you and your husband <3

    • Alison says...

      sending you so much love JZP – I am so sorry for your heartbreaking loss
      xo

    • B says...

      From one preemie mother to another, my god, my heart breaks for you. I ache for the loss of your son.

    • SN says...

      Sending you love & strength.

  137. Leah says...

    oh my goodness, what a gorgeous + honest essay. I really loved the part about choosing how to spell Izzy’s full name. I can clearly picture those conversations and perfectly picturing the trajectory of my unborn children’s lives. Sending you and your family lots of love, julie. And a very happy birthday to Izzy.

  138. Grace says...

    Thank you for being so vulnerable and sharing your story. I have a daughter who has severe ADHD, and although this is not the same, I feel like I have lost so many experiences with her that I had planned to have. Because of her ADHD she is friendless, always has been, and that has made me stand on the sidelines while all my mom friends participate in the things that mark a typical childhood and teenage existence. I have mourned the loss for many years and now finally feel ok with our situation.

    I also have a sister with severe intellectual disabilities. She has the IQ of a 3 year old. I often reflect on the complete devastation my parents must have felt when she begun missing important growth milestones at 6 months. What a horrible bait and switch. Your baby is born, completely physically healthy to only later reveal they will never be normal.

    I agree with you, it is unfair to hold in comparison anyone with a child (or family member etc… ) with a disability against the disabled few that are outliers and achieve great things. It’s an un-soothing comparison, it actually makes one double down in anger. However, where I do disagree with you is your statement that implies a person with a disability isn’t fully human. My sister, although mentally impaired, is fully human. She is not the sum of what she did not achieve, or what could’ve been, she is the sum of humanity amplified in one person. Where I get sidelined caring about what people think of me or racing to keep up, she simply lives. She lives to love and be loved. Her simplicity is constant reminder that the goal of life is simply to know, love, and serve God.

    • Suma says...

      Grace- I just responded to a comment above. We have similar stories. Sending you a hug.

    • Eliza says...

      Hi Grace! I read it slightly differently and I may have interpreted it incorrectly, but in my reading I felt like she was applauding the advances that have helped other people see that people with disabilities ARE fully human, but that the overt celebration of the “exceptional hero” is a hard swing in the other direction that might make people who are not heroes (or their parents) feel less-than even though they are just as much human as everyone else, and just as you said so beautifully about your sister – she is the sum of humanity regardless of what she did or did not achieve. (I encounter this same problem with feeling like I’m not doing enough to be good enough, and my therapist constantly tells me that I don’t have to DO anything other than have existed to be a human worthy of love.)

    • Christina says...

      I read it as you did, Eliza.
      And Grace and Suma, I too have a daughter with ADHD and anxiety. It was less obvious when she was little, but now that she is a teenager it is painfully clear how different she is and what a challenge life is for her. The hardest is that she sees it herself.

  139. Natasha says...

    This was beautiful to read. Thank you for sharing your story.

  140. Lynn says...

    Thanks for this. I’m currently trying to get pregnant and right now we’re in the fun stage of coming up with potential baby names, deciding how we’ll teach them to be anti-racist all the while aware that our fertility journey is at the beginning.

    It can/might get really hard, and if we are successful there are lot of ‘landmines’ of things you don’t expect. A good reminder to think as big picture as possible in deciding if parenthood is right for us.

  141. Gem says...

    Absolutely beautiful essay – devastating and thought-provoking and so full of love. Thank you for sharing. xxx

  142. Elizabeth says...

    This is a truly beautiful essay – I thank the author and Cup of Jo for sharing it.

    I’d like to ask a question that isn’t directly related to the essay so I apologize if this is the wrong place to do it – the title caught my eye because it made me think of something I’m going through as an adult woman (no kids yet) with my own mother. Would Cup of Jo consider featuring essays about the adult daughter/mother relationship and challenges within? I feel like there are so many positive stories out there, it can feel alienating for those of us for whom this dynamic is extremely fraught and complex, but I imagine I’m not alone in this struggle. I’d love to see CoJ be a place for this discussion.

    • Rachel Thomas says...

      I second this . With regards to difficult mother-daughter relationships, what I would love to see you cover is a “no-contact” mother/daughter relationship, which we seldom hear about but which exists more than you think. Having dealt with my mother’s narcisstic, abusive behavior towards me my whole life, I have gone no-contact/low-contact to maintain my mental-health/self-esteem. I am much happier for it, and I have no regrets.
      However, I find people are shocked when I reveal this, as everyone expects mother/daughter relationships to be close.

    • Lea says...

      Elizabeth, I could have written this comment myself.

      I’ve found myself going back to the post Jo posted because it provided some comfort; knowing that I’m not alone in this struggle. Would appreciate, so much, seeing similar posts.

    • Lauren says...

      Rachel I might steal your ‘low contact’ term! I don’t get total no-contact meaning missing weddings, funerals, reunions etc., as long as you can keep your distance and it doesnt totally upset you (and as long as the person isn’t dangerous).

      Of course either way it just really sucks. And so few people can understand; I think I kept seeing her partly because I worried what people who didn’t know her would think of me. Yes I can pull out some short shocking episodes for ‘proof’ if someone really gets asking, but it doesn’t feel good because it’s oversimplifying things, plus I wish people just (magically?) understood or believed me. For anyone reading this, it doesn’t always take two to fight. My mom could say or scream awful things with me just sitting there–every silence or um or uh or tear meant something horrible to her, and my fear insulted and disgusted her–and if you’re not sure please dont make relationship suggestions or say that all parents mean well, etc., unless you know for sure!

    • PAB says...

      Agreed… I find myself really struggling even more in my so called relationship with my mother now that I am a mother.

  143. Abbey says...

    Thank you for this thoughtful and honest essay!

  144. Melissa says...

    If you’re looking for resources please consider my sisters podcast Adventures in Autism. She talks to a lot of parents and professionals about children with developmental and physical disabilities. Love to you and Izzy.

  145. Julia says...

    Just beautiful. Thank you for being vulnerable and for sharing your story.

  146. George says...

    I am humbled by your honesty in writing this piece. You are honouring your daughter in the best way possible which is showing the world her (and your) unvarnished reality rather than an idealised future and ‘against all odds’ achievements.

    Wishing all your family the best.

    • Alison says...

      I am humbled as well. This honesty is very valuable. Would that all parents of every kind of child could be so open. Parenthood, as incredibly wonderful as it is, also involves letting go of all kinds of dreams and expectations. We all love our children and get excited when they seem to have a special talent or land the lead in the musical or excel at academics or sports. But amidst the laughter and the family joy there are minefields – your child doesn’t make the basketball team, or develops a horrible slouch or inexpliably gains a ton of weight or is ditched by their best friend or needs massive extra help with algebra. And those carefully constructed expectations of perfection then have to be managed because we are sometimes lost as to how to help and we also don’t want our children to see our disappointment. Your situation is that times a million. Acceptance is a hard road but you are leading the way. Thank you for this.

    • NH observer says...

      I completely agree. All the people castigating the author for using “mistake” or some other word they find dismaying or offensive are utterly missing the point of respecting this type of honesty and courage.

    • Kay says...

      Please read V’s comment from the perspective of an autistic person. It is completely ok for me to feel a type of way that someone’s existence is ever described as a mistake no matter if it applies to a specific genetic testing reference and then read an entire essay that made my stomach hurt with it’s language. It is ok for people to have different opinions. It is especially ok to err on the side of being empathetic with the one who has the disability not the parent.