It’s been exactly thirteen months since we’ve welcomed “Susan” into our home, our family life. Who is “Susan”? She’s Eloise’s apnea/bradycardia monitor, the “cable box” and “umbilical cord” Eloise has been attached to for over the past year. Yes, I named her monitor Susan. Naming her medical equipment has lightened the mood with Eloise and her condition, and it’s made me laugh instead of cry when I scream at the monitor, “Will you SHUT UP, SUSAN?!” when it’s acting up. We even celebrated Susan’s anniversary last month with a Disney button just to continue our silliness, because why not? It gives us something to laugh about when Peter and I have enough to get upset over.
This post has been a long time coming, and I’ve heard just about every comment possible about Eloise. Some comments are very kind and others, well, not so much. Yesterday I was at Target and had received an odd response to a question about Eloise’s cords. The employee asked about her leads coming from her outfit, and when I told her what they were, she responded, “Oh neat!” and walked off. I know that Eloise’s cords and medical equipment can be intimidating to some people (we have two monitors and sometimes carry an oxygen concentrator), and this has reminded me that some people do not know what to say, or how to say it when presented.
We’ve heard a lot of off-the-wall questions, funny comments, and plenty of hurtful ones in the past thirteen months about our daughter, and I’ve rounded up the more uncomfortable questions and comments that we commonly hear… and how to make it more appropriate and welcoming (for us).
What Not to Say to a Parent of a Child Who is Medically Complex (How to Not Sound like an A**hole)
“What’s wrong with your baby?” I’m sorry, what’s wrong with your face?! If I needed a reason to clench my teeth and want to throat punch someone, it’s this. Nothing is wrong with my child, just like nothing is wrong with your child. The word “wrong” is so damaging to both parents and to siblings. Within the first eight days of Eloise being born, we were back in the hospital and unsure if we would find out what condition she has and if she’d survive. It was a really tough part of my life and it made me grow some really thick skin. Walter never saw anything different about Eloise, about being in and out of the hospital, and all of her medical equipment; he knew nothing else, it was his baseline for her. And then when Eloise was six months old, a woman passed by the stroller as we sat outside at our favorite café and asked me, in front of Walter, “What’s wrong with your baby?“, and I was caught off guard and muttered something (I don’t even remember what). And as she walked down the street, Walter asked me the gut-wrenching question, “Mommy, what’s wrong with Eloise? Is my baby sister broken? Do we need to take her back?” At that moment I saw my son’s innocence about his sister disappear; he knew his sister is different, and I wanted to hunt down the woman and shake her for the damage she caused. Please please please, don’t ask any parent or caregiver this question. There are so many other (and better) ways to ask about a condition, and one could be, “I see she has cords, is she being monitored for something?”
“Is she going to grow out of it?” This question usually is the follow-up to the question above. This is the million-dollar question for us, and we have our specialists stumped; the short answer is that we don’t have a clue if/when she’ll grow out of this. While this question doesn’t bother me, it can to other medically complex parents, and the more well-received question would be, “How is she doing now?”.
“But she looks so normal!” What is normal? This question implies comparison and it just makes me feel yucky. The better response would be, “Wow, I didn’t know she had this condition.”
“My sister-in-law’s cousin’s best friend’s kid had this same kind of thing, and they had the same equipment for a week; I know exactly what you’re going through.” This makes me laugh because the people that say they know exactly what I’m going through are usually the least educated on central apnea and bradycardia. Unless someone has been on an Apnea/Bradycardia monitor for thirteen months and on oxygen for ten months, along with hospitalizations and a c.Diff diagnosis, they know nothing. It chaps me when people say they were on the monitor for a week, or two weeks, or even three weeks and tell me that they know exactly how it is. Nope. Sorry. I’ve saved my child’s life over a hundred times with rescue stimulation, and unless you’ve had your very own “Susan” for an extended period of time, like us, you don’t know what it’s like to be in the trenches. This is the perfect time to compliment the parents or caregiver of the child; a simple compliment could change their day, and I can tell you it’d be well-received on my end! The better comment for this could be, “A friend had similar equipment, and while I personally don’t know how you are feeling, you look like you’re doing a great job.”
“God only gives you what you can handle!” So did God say, “Here Faison, you’ve dealt with five miscarriages and some other tough stuff, here’s a medically fragile kiddo because you can handle it!”? Or in a more pessimistic manner, was I just a crap human and needed a slice of humble pie? This question makes me really uncomfortable because it implies that I deserved this, and that I could handle this situation; I wasn’t given a choice when we were given Eloise’s diagnoses and we adapted. Being honest here, there are days when I feel like I have things under control, and there are times where I feel like I can’t handle any of it. Again, this is another great time to compliment the parent or caregiver with encouragment and compassion. “You are doing a great job, she looks great!” can make my day so much better hearing this. I might’ve just gotten off the phone with our insurance companies that’s playing ping-pong with a $40,000 claim, and hearing something like this could turn my day around instantly.
“It must be so nice being home in your pajamas and just watching trash TV all day, since you don’t work.” (insert side-eye here) Girrrrrrrl please. I stopped working because I had to, not because I wanted to. We have at least one doctor’s appointment per week, and I’m on the phone with a doctor, a nurse, a social worker, or an insurance company at least ten hours per week. That doesn’t include the time that I’m taking Walter to school (2o mins away), picking him up, taking him to his after-school activities, taking Eloise to her appointments, seeing our social workers, etc. It’s a miracle if I’m on the sofa for more than two hours! #BESTDAYEVER. The title “Mom” has a lot more to it with our daughter, and being her caregiver and advocate are just two of many hats that I wear. Also, this brings up judging my parenting, and those who do comment negatively, or say they could do better (I’ve had those comments too) get written off. There isn’t any alternative to this comment, because this comment shouldn’t be said, period.
“So you’re done having kids, right?” Unless you’re my OB/GYN, you shouldn’t ask this. Our daughter’s condition shouldn’t impact whether we have more or not, and this is a very personal question that can hurt feelings. For awhile I felt that Eloise’s condition was my fault and I carried a lot of guilt on my shoulders; I was in a really dark place, and have since gotten better. But for those that really want the answer, we are content where we are in life right now as a Weiss party of four. We have two beautiful little ones that we love so much and we’re so grateful to have. But again, this is such a personal question that shouldn’t be asked.
… and what if I do want another little one? I mean, look how cute she is! If you’re reading this, thank you for making it through the uncomfortable questions and comments. It can sometimes feel awkward asking about a child who has special needs, but being more compassionate with your words and sensitive to the parent or caregiver can go a long, long way. We really appreciate it, and I know many other families will too.
You are such an incredible mother and I am in awe of you every day. I am so grateful and proud to be your friend.
You are an amazing mom to two perfectly NORMAL (🙄) children . Keep kicking butt, mama 💪🏻. Hope to see y’all at WDW soon .
It works a lot the same with caregivers of any type. I was a caregiver for my elderly mother and overwhelmed. The inappropriate, thoughtless, and often downright rude tbings people said to me were appalling. The fact that the person you are helping is thriving, clean, fed, responding in any way to the outside world is a credit to the one(s) caring for them. I’m amazed you had the time and ability to thoughtfully write these down. It is helpful to the uninitiated.
On a different note, meant to be “funny” only to those who have experienced inappropriate comments, another couple are:
“Have you ever thought about….”;
and the ubiquitous
“Take care of yourself.”
But, do find self-care when you can. Listening to music you enjoy, ice in your water, a quiet hobby if you can, a friend who will listen, an online caregiver’s organization if possible. Ordering necessary things from Amazon Prime was new when I was caregiving, but helped tremendously. Reading and learning what you can. Most importantly, sleep, which I found next to impossible, so good luck. Find what makes you happy and is possible to do.
I both do and don’t understand, but six years of being homebound with a late-diagnosed Alzheimer’s/dementia patient who was my parent entitles me to a glimmer of what you are experiencing. Oh, and my granddaughter is caregiver for her precious medical toddler now.
YES. I absolutely hate when someone says “Take care of yourself.” Is that an offer to babysit while I take a power nap? Are you suggesting all the time and effort I spend on my medically fragile child is due to an oversight on my part? Like I just forgot that I’m constantly spreading myself too thin? Unless you have a practical, helpful, specific suggestion, MOVE ALONG with your “self care” platitudes.
Eloise is precious and for the record…you are doing an amazing job! She’s lucky to have you for her mommy. ❤️
Dear Faison,
As the mom of a medically complex child, who happens to have an “invisible” illness, but could easily end up with various different kinds of Susans I’m sending you love, hugs, & strength. This is a beautifully written piece which I will be sharing with my medical mommas. My biggest piece of advice I give the families of my medical momma friends is to SEE THEM. Often times family & friends have good intentions but they don’t know what to do. I tell them-SEE HER, really see her. And LOVE HER. Because sometimes that simple, free gesture is worth more then anything. I wish you, your daughter, & family love, joy, & happiness. Your little girl is a beautiful, precious gem 💖
My response to “God will never give you more than you can handle” has lately been that if that’s the case, I want a god with less faith in me. People shouldn’t say it, and that reply generally makes them think twice before saying it again.
Also, she’s adorable.
Eloise is precious, amazing, and a rock star just like her mama 🎉❤️
I get similar questions regarding my oldest great-grandson. He has high end Autism & the number of filthy looks I get from people (mainly females) when I take him to town, giving my grandson & his partner some quality time with their younger daughter. Apart from the looks, I get “tut tuts*if he’s having a meltdown or throwing greetings cards over the market floor. I just feel like shouting “he’s got Autism, learn to live with it & be thankful yours haven’t got it” Don’t get me wrong, I would not have him any other way, he can be so loving & funny, his memory for words to songs is brilliant, even in Chinese, Spanish or French. So, at the end of the day I love him so very much & wouldn’t swap him for the world. Hope this helps a little xxxx
When I found out my child would born with Down syndrome, I started to hate the word “normal”. ALL kids are gifts, they are special, and unique! Done kids are just extra special! I’ve been following you since you were pregnant and you are an incredible mom!
Thank you and hugs. Our apnea monitor is George.. And has been apart of our family 3 years in Nov. All of those questions and comments. Hating to answer some. Our princess has a cleft palate found at birth. 4 weeks later she was found to have prs sticklers syndrome. Due to her lower Jaw it caused obstruction apnea the docs were sure that was it. Til her 1st sleep study yep central apnea and a heart rate of 30 🙁 I kept telling all these big specialists. I’m a nurse. Nov slept on my chest or dh. We did not sleep we took shifts with her. Then when George moved in. We are trying to wean off daytime o2. And we started prek. I had a open meeting with all the parents. So I could explain to them. What my child has their child can not catch. Yes she is ok, we dont know when she will have surgeries. She has glasses and a hearing aid. Some days her eye will be patched. She will have her oxygen on when sleeping and through the day. Why why why. Why must my 10 year old son have to explain about his sister’s medical conditions. Explain why she has xyz. Ugh and he is not explaining this to his peers.. but to stupid adults who question him. This is my biggest petpeeve
You have one beautiful baby ❤️ I think fear of the unknown make people say some stupid stuff which they don’t mean, but hurts nevertheless. I have two friends who have special needs children and my sons were born prematurely with learning delays…they are six years now (bradycardia, yup….in fact I was hitting my sons back one day even after he was okay cause I was freaked out when he was having an episode that the nurse came by and said, “You can stop now, he’s okay.”). You are an awesome mama and you rock, even on the extremely crazy days.
I don’t know you, but I came across your blog. You are amazing and Eloise is beautiful.
You are awesome! I’ve been following you around for a little while now on Instagram and you are a wonderful person and a great mom!
I love your constant strength and advocacy with all that you have going on. It’s great to see something like this so that other people out there in similar situations know they aren’t alone. I can tell, even on the rough days, that you are a wonderful mom and person in general!
What a beautiful baby!!! She’s like a doll. OMG.
Thank you for being vulnerable and helping the rest of us be better humans.
You rock!! I so needed this post today!!!!!! Thank you for honest no hold bar words that others truly need to hear and follow!!
Thank you for writing this. My son has a neuro muscular disorder and because of this disorder he is Trached and eats via G tube. I have developed some pretty thick skin over the last 21 months since he was born and boy have I learned a lot. These questions and comments you talk about are so frequent for us and it sometimes really gets under my skin. But sometimes I also just laugh. We try to make sure our son lives a wonderful life in between the millions of doctors visits and meetings. So many people say “aww poor kid” or “I’m so sorry” when they find out about his condition and I want to shake them all. He is by no means broken and in fact he is a thriving little toddler with a whole lot of sass! It’s always nice to feel a little less alone in all of this, thank you! And I do think you’re doing a GREAT job!