This is not the motherhood I pictured. There. I said it. At least, it’s not the motherhood I daydreamed about when I placed my hands on my smooth, round belly and delighted in the movement stirring inside. I knew I was having the little girl I’d always wanted, and I was thrilled. I pictured delicate ballet slippers (not leg braces), a fancy bicycle with colorful streamers (not a wheelchair), and dress-up tea parties complete with pink frosted confections (not a feeding tube). As a general rule, no one hopes or plans for their child to be born with a disability. After all, when you ask an expectant family whether they want a boy or a girl, their answer is nearly always “We don’t care. We just want a healthy baby!”
So, I suppose I should no longer be surprised when I begin to tell a new acquaintance about McLaine, and a familiar scenario unfolds (after all, before I gave birth to her, I myself would have considered our situation a sad one). They ask questions about her, and because I don’t have typical answers for the “tell me about your kids” niceties, I end up spilling out a sort of litany of her various diagnoses. Detail by detail, their face falls a bit more until they look completely crestfallen. They reach out their hand and place it on mine and say, “I’m so sorry!” in a hushed way that makes me feel as if I’ve actually just disclosed to them that someone close to me has died. I answer, “No. We’re not sad, and you don’t need to feel sorry for us.” They scrunch up their face a bit, give me a small nod, and I know they are thinking that I’m just being polite.
Because of this, I generally hold back on giving out too many details about McLaine when meeting new people. Please don’t get me wrong. I am in no way ashamed of my daughter or any of her disabilities. It’s just that people have no idea how to react, and I have a visceral internal reaction to their pity. I HATE IT. I feel anger bubble up from deep within. For a moment I forget that they haven’t lived our life. They haven’t experienced the soul-changing love that accompanies special needs parenting. They haven’t been witness to the beauty possessed by a child who has to work way too hard for the things most of us take for granted. There is no room for pity—only fierce love and admiration.
Here’s what I want you to take away from our story:
My daughter isn’t pitiful. She’s beautiful. These pictures capture her as I see her, and—in my opinion—as she is. The picture on the right is blurry because I couldn’t contain her. She is so thrilled to finally be walking at age five that I can’t get her to be still. She loves motion—as evidenced by the photo of us swinging. Her head is thrown back in laughter because she is fully enjoying life. You can see the pride on my face in that one, I think. In the bottom photo, we are both smiling, but while my smile is for the camera, hers is one of real joy. She is stubborn, funny, loving, smart, determined, strong, resourceful, and has just a bit of a diva attitude. I will not sugarcoat our life and tell you that it’s without its challenges. However, challenging does not equal pitiful. Challenging means we’ve learned to rise above, to grow through adversity, and to seek out the positive in every situation. So, strangers that I have yet to meet—when I tell you about my daughter (who happens to have a particular set of challenges), don’t tell me you’re sorry. Tell me that my daughter sounds amazing—because she is.
Thank you for doing such a wonderful job raising such a kick-ass daughter. I lost my best friend two years ago this week, and she had so much of that attitude. “Don’t look at my chair. ..look at me”, “I talk just fine if you’d just listen” and “No, I’m not just a special Olympics swimmer, I’m a team USASwimmer on the YMCA Marlins swim team” Once you got to know her it was impossible to pity her because she lived her life so fully. Thank you for being the type of parent she needs!
Your friend sounds like she was a heck of a person! I would have liked to meet her. My daughter inspires me to be the kind of parent she needs.
That was really well written, thank you for sharing. My niece also has a genetic syndrome and I know my sister gets so upset when people only look at her with pity. They could never understand how much she has enriched our lives and taught us so much about love and compassion.
I’m so glad you enjoyed it. These kids really do have a way of changing our lives and perspective!
I also began disclose a lot when I talk about my daughter now that she’s almost 3 and some of her disabilities are becoming more obvious. She has a partial deletion of her chromosome 2 so she has hypotonia, speech delays and learning challenges among other things. If I can’t do something or be somewhere, I’ll explain that it’s because we have therapy or one of many doctor appointments and that starts the conversation. I feel like it removes curiosity about why my almost 3 year old doesn’t speak like other kids her age, runs kind of quirky, can’t jump, and isn’t anywhere close to being potty trained. I don’t worry about gossip but I feel better about people knowing the truth, not half truths. I’ve also found 2 other moms, clients of mine, who shared their own kids special needs when I shared mine. It can feel so lonely at times when you’re unable to relate to other moms so when you find someone who understands even a little bit, you unload. No one has ever said ‘I’m sorry’ and if they do I don’t know what my reaction will be but hopefully I’ll have the strength to say what you did.
My daughter has an undiagnosed genetic disorder, so very likely some type of chromosomal abnormality. It just hasn’t been able to be specifically pinpointed despite much testing. I don’t worry about gossip either. If people would gossip about a child, they’re not the kind of friends I’d like to have anyway. I do try to be intentional when the conversation does come up, though. I never want to react in anger because I believe in looking past the words that people use to the see their heart and, therefore, intention. Most people mean well and my aim is to educate, not create more shame! We can create extra allies and advocates for our children by choosing to have the hard conversations in a constructive and positive way. Thanks for reading!
Great blog – thank-you. I have a child with special needs and I learned I needed to focus more on his plethora of gifts and not on his obvious challenges. Not only did I need to do this when describing him to others but also to myself when In the middle of daily life. One thing that always irked me was how others quickly labeled him a “bad boy” (and probably labeled me as a “bad mom.”) What child WANTS to be bad, especially when they are 4 or 5? I want to tell these all-knowing parents to get educated, have some compassion and focus of the beauty of every child.
I feel the exact same way! My daughter was born with a rare genetic disorder called Anophthalmia. She was born without eyes. She is blind. She will never be able to see. And I get people telling me they feel sorry for me all the time. But my little girl is the happiest, most beautiful, and most smart girl I know. I tell them the exact same thing. Keep up the good work!
No pity here! God had a plan and he knew you would be the one to love your daughter no matter what. Your daughter is beautiful and clearly loved to the moon and back. Enjoy everyday you have with her.
I just had to tell you your daughter is very beautiful. I do not see anything wrong with her. So don’t know why people would react like there is. But I see you said she had problems and didn’t start walking till she was 5, didn’t read why. But all I see is a beautiful loving beautiful loving little girl. God bless you and your daughter.
Thank you for this! We have a special needs 14 year old son. He wasn’t diagnosed till around five years old because it was also rare. He was clinically diagnosed then but finally blood tests confirmed in 2007 Cowdens Syndrome, a genetic syndrome. We have all been tested now and are not carriers so it is just the way God wanted our son! I can relate with EVERYTHING you mentioned! I will say it gets easier in some ways as he gets older and yet harder; puberty! Eeek! I’ve only recently found CMBN and live in Columbia (TN), so I hope to engage in as much as I can!
Hi Laurie! Glad you liked the post. McLaine has basically exhausted all the standard (and even non-standard) genetics testing and we are now working with genetics at Vanderbilt. They’re recommending whole exome sequencing and for her to be a part of a rare disease program with the National Institute of Health that has a satellite at Vandy. She’s a rare, rare girl 🙂 So happy to have you following NMB! It’s a great group of talented ladies that I’m honored to be a part of!
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