I want to talk about something today. It’s gonna rub some of you the wrong way. Some of you will think I’m being overly sensitive and silly. Some of you will be annoyed with me.
And that’s okay.
I’m an undying fan of Story.
We all live wildly different lives and walk the paths of completely bizarre Story lines, but at the end of the day, we’re all in this together and the only way we can ever begin to understand one another…and more importantly, support one another, is if we speak aloud the matters of our heart.
And so, I want to flesh out with you something that’s bugged me for years. But mostly, it’s made me cringe and made my heart sting even more so lately.
“I don’t care if it’s a boy or a girl…so long as it’s healthy.”
Those words get tossed around by anyone and everyone even remotely affected by an impending birth.
New moms. Dads. Grandmas. Aunts. Cousins.
If someone you love has a growing belly and a sweet heartbeat (or two!) inside, while you might prefer a certain sex, the end wish is for HEALTHY. You might dream of all things pink and sparkle, but either way, you’re happy if it’s healthy. Or, as often the saying goes, “has ten fingers and ten toes”.
And I get that. Truly. It makes perfect sense. No one wishes for hardships. Particularly those affecting the sweetest, squishiest , most deliciously lovable newborns among us.
Does anyone actually WANT their child to live a life of suffering?
Does any parent or grandparent actually DESIRE for the new littlest to need a host of specialists and medications?
OF COURSE NOT.
And believe you me, if I could wave a magic wand right. this. second. and take away my girl’s cerebral palsy, do a rain dance and whisk away her epilepsy, I would do it in a heart beat.
OF COURSE I WOULD.
To think any differently would be insanity.
Make no bones about it: I am deeply saddened that Jill suffers. My heart wrenches when I see how it affects her siblings. My gut churns when I see a twinkle of defeat in her daddy’s eyes.
I would never wish for my child to walk this path…no matter how darling she looks in her metallic walker, and if I could do ANYTHING…anything at all…and then see her jump and play and run and yes, even fall, without fear of a 911 call and an ambulance ride, you better believe I would do it in a heartbeat. Half a heartbeat. My dream of all dreams would be to see my girl jump rope and then read me a story.
Truth.
So trust me that I get it when people say “…so long as it’s healthy.”
I get it. Deeply. Profoundly. Minute by minute. Every day of my life I get it.
But the cringing comes from a deeper place. A place that worries what it says, on some level, about the worth of my daughter whose seizures last hours and cost thousands. About the worth of my friends’ son who has seven fingers and not the widely hoped for ten. About sweet Brock whose family fought tooth and nail for an exhausting three years to beat cancer.
About the place prescribed, even unintentionally, to all the children that society wouldn’t consider “so long as it’s healthy.”
But mostly, I worry of little ears overhearing these sentiments. This figure of speech we toss around without thought.
How does the preschooler, the one in remission who spent last Christmas in the ICU, feel when he hears his teacher, glowing that first time mom glow, rubbing her belly in the way only pregnant women can, smiling warmly and telling another mom…”Oh, we don’t really care what it is. So long as it’s healthy.”
The little girl in a wheelchair, rolling past a set of strangers in the checkout line, catching up on life and giddy with the announcement. “We’d love a girl…but really, as long as it’s healthy, it really doesn’t matter.”
The teenager scanning her Facebook feed, especially during the November Thankful a day madness, seeing messages of “Today I’m thankful my family is healthy!” “Day 16: thankful for a healthy baby girl in my tummy!” “Day 22: grateful for my happy, healthy kids!”
Because here’s the thing that rips at my mama’s heart: sure, you and I, we know what those people mean. We know that aren’t meaning to be rude. And really, it is a great thing to be thankful for. Of course it is.
But kids are notoriously literal. They are incapable of unpacking intent. Of seeing the bigger picture of what is really being said. Kids can’t peel away the layers of meaning.
Because all that little boy can hear is: “…so long as it doesn’t have cancer. Because I definitely don’t want that. I don’t want him. So long as it’s not him. Then I’ll be happy.”
Because all that teenager sees is “Day 7: grateful that I don’t have her as a daughter.”
Because all that little girl hears is “…so long as it can walk and talk, because I don’t want my baby to be like her.”
Because all Jill will one day hear is “…so long as it doesn’t give me the grief of seizures and equipment to haul around. I can’t imagine having to be her mom. Anything as long as it’s not her.”
Is that what any of us are saying when we rub our overextending belly buttons and shift our weight on swollen feet?
My guess is no. No one is.
But history is riddled with good intentions gone horribly bad. And just because it isn’t what you meant, doesn’t mean it might not still be hurtful. ESPECIALLY when who you speak of is a child.
And to go further, I can’t help but wonder, if maybe subconsciously we ARE saying these things? After all, 90% of fetuses with Down Syndrome are aborted. So are we really being honest, as a society, to say that we don’t mean to suggest all these awful things? If we could test for epilepsy in utero would there also be an associated percentage to report? If we could run biopsies on unborn babes would we see a downshift in childhood cancer rates?
Perhaps we would. And if the answer to that is yes…how can we roll our eyes at the thought that a child, or this grown woman for that matter, might be offended at the seemingly blase “…so long as it’s healthy” figure of speech? Is it really just a figure of speech or is there more under there? Even more than any of us even realize?
And even if none of this is true, could we pause for a moment to consider how our words might impact the most innocent of ears? The ones who have seen the sterile walls of hospitals more times than they should. The ones who have amber bottles lining kitchen counter tops, their names printed boldly along the top of the label. The ones who fight every single day to do what you and I take for granted.
Because as the mama of that little girl, while I would do anything to take away her struggles, I can most assuredly promise you she is still worth it. Our family would be woefully done a disservice to not have her be a part of it. Even if she doesn’t fit the mold of healthy.
So Long As she is here. That’s what I say.
And I wish you could see that too. “…I don’t care what it is. So long as it is here. So long as I get a chance to know it.”
Day 4,432: grateful she is mine. Thankful she is here. Blessed to have a four incredible kids.
Let’s change the dialogue, friends.
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Amen.
Wow. That brought tears to my eyes. You have a way with words that really opens my heart even more.
Very thought-provoking. Thank you for sharing.
This was thought provoking for me. I agree with you. I had never really thought about what it sounded like to children. However, I know when I said it as a mother who had lost four children, I meant it. “Healthy” to me was another term for ALIVE. I just wanted alive.
Angie´s last blog post ..Mother’s Day Tradition 2013
Of course. Alive. And of course healthy. Little ears. That’s my rub.
And you know what else? I didn’t get “healthy” but by God’s grace I got four alive and four in heaven. But the four here, each one of them has a special need. It’s not obvious to others. I think that’s what makes the most sense to me about your comments. My kids struggle with illnesses that can’t be seen with the naked eye. People, strangers, would not look at them and think, they are not healthy and purposefully speak with sensitivity because of their appearance. I’ve never considered what that sounds like to them and I’m wondering if I need to talk to them now as we have several friends who are currently expecting and I know they’ve heard it recently. As I change what I say and speak to others in my life about their words, it’s important to remember to open the line of communication with my children on this subject as age appropriately as I can. Good stuff Jeannett. You always make me think, even when I don’t want too. :)
Angie´s last blog post ..Mother’s Day Tradition 2013
So very true! My 5 year old was diagnosed with Type 1 Diabetes last summer (at 4 years 8 months.) Being only 5, she only knows that she can’t have some of the foods she wants and that she has to have shots, not that those four shots a day keep her alive. So, I’m fairly new to this world where those words and even pictures of kids eating ice cream hurt my heart. But she is here with us!
I love this post! My grand daughter is six months old and has OEIS complex, she has had one major surgery and will have many more. She has spent more time in the hospital then at home. We were told that she wouldn’t make it at birth, we are so thankful to have her and we love her so much! My daughter and I get so sad when we hear people say they don’t care what sex their child is as long as they are healthy! We love our little miracle so much even if she isn’t “healthy”!
I’ve read your blog for awhile, but have never written. I can’t remember if if I’ve ever blogged about this or have just planned to, but I’m right there with you. I’m 34 weeks pregnant with a little girl; but my little guy was born at 28 weeks, too small, too early, too sick…definitely not healthy. I don’t think I ever said this phrase during his pregnancy (because I had an intuition that something was “wrong” all along), but since I’ve entered this new world of prematurity, special needs, medically fragile, etc…I’ve noticed a certain trend in our society…too many are uncomfortable with the “unhealthy” and “non-typical” and that’s what hurts my heart the most for my little guy and his future. And don’t get me started on my absolute least favorite phrase that is tossed around after something tragic happens…
http://jackryansjourney.blogspot.com/2013/03/more-than-you-can-handle.html
And seriously, what are they going to do if there “so long as” gets thrown in the trash, along with all their other expectations about parenting, babies, etc? I can only hope that they do what we did…love our child and readjust!
Heather Lesoine´s last blog post ..Believe
I agree with so much of what you’ve expressed here. I think it is extremely important to let everyone know that they are loved, no matter their abilities. My one question for you: is there a way that people could express their gratitude for health in a different way? So that they could still feel grateful, without making others feel less if they don’t have health?
Hmmm…I really don’t know.
We certainly can’t run around qualifying everything we say and type with disclaimers. And obviously someone’s always going to be offended no matter what.
But that’s precisely why this is so complicated and why I wanted to flesh it out as a community. Because it isn’t cut and dry. And it’s important to see that above all else, I suppose.
I love your thoughts and willingness to have us think about the hard things. I’m left wondering about miscarriages and children that don’t come. Not that this idea should in anyway derail the line of thought, but just another turn for me to think about. It is never too late (or too early) to encourage and support each other right? Moms and kids.
It is also important to remember that our biggest struggles bring us closer to each other and Him, more than we could have ever thought. Jilly is treasured by her family and friends in a way that a struggle free child will never have. How many kids have their own team and logo? The treasured ones, right? She will also likely share a bond with her siblings that many moms would wish for in half a heartbeat.
I don’t have the same gift with words as you. I hope you are able to see my heart when my words fail.
I know. I thought about that too. The babies that are never born.
I really don’t know.
All I know is that Heaven is going to be freaking amazing.
Wow! We had this discussion in my family not that long ago. I was probably guilty of saying this when pregnant with my son–not knowing that he would have Down Syndrome and long term serious medical issues. When we were completing paperwork to adopt our daughter “healthy” took on new meaning. We had to decide what we would and would not “accept” in a child regarding health. Coming from where we had been it was extremely difficult. We decided that like a pregnancy, It was in God’s hands and we would love and cherish any child he sent to us. While I am thick skinned and can hear those comments without too much hurt since I understand they aren’t meant o hurt. However I do worry about my children. What do those comments say to my son about how others value his life and what does it say to my daughter living with a brother who is considered “different?”
I think that’s something that is hard to wrap your mind around until you are living it. It takes people like you who can put it so eloquently to be able to change it. And people who read your words to put them into action and spread them.
For almost four years I *thought* that I had a perfectly typical daughter, and when I began to realize I didn’t, my mantra was “I don’t want her to be anything other than what she was created to be.” Because it felt for a time that people were trying to CHANGE her rather than HELP her. But I am sure I probably said that “healthy” thing plenty of times before that. And even when I was pregnant with Jonah I longed for more typical-ness because I was exhausted from the hard stuff. And now I am at the place where when I hear someone has a child born with Down syndrome, I don’t feel pity or sorrow…I get excited for them. Because I have learned so much about life and love and God from my friends with DS…but there are much harder things that I’d have a hard time feeling joy about, I’m sure.
I truly believe that LIFE is beautiful. It is mamas who have to deliver stillborns and deal with miscarriages that I grieve for the most.
I’m not as eloquent as you are. I hope you get what I’m trying to say. But anyway…I love this post.
Jenny from Mommin’ It Up´s last blog post ..Frozen
It wasn’t until I became pregnant for the first time that I began questioning the “as long as it’s healthy” expression. I had some scares early in my pregnancy and all I wanted was the baby to be born and to be able to meet him and hold him in my arms, no matter how many fingers, toes, or chromosomes he had. And I made sure to make that clear to anyone whom I encountered and asked about my baby, especially if they made the “as long as its healthy” comment. You are right–we need to change the dialogue.
Although our baby was born premature, he was otherwise healthy. And I was very thankful. And I don’t think that there is anything wrong with being thankful for health-whether your or your child’s health–as long as you don’t take it for granted and are grateful. What’s important to remember is that every child–healthy or not–is a blessing and perfect and should be treated as such.
Thank you for posting this blog and starting this discussion. :) God bless!
And for me, who’s son was stillborn at 32 weeks, I still say, Thankful he is mine, even though he wasn’t healthy. Thankful for what he has taught me and still teaches me. Thankful I will see him again. Looking forward to when I get to know him better. I was lucky enough to have an an experience with one of my previous babies that I knew enough to be present for him for the time I had with him. I appreciated the pregnancy aches and enjoyed the hiccups and feet in the ribs because I knew he was my last. I guess, technically, he’s healthier now than any of us, right? Love that you talked about this, Jeannett.
To be honest, I had never considered the kiddos I’m around hearing that and thinking I devalue them because of my comment. It makes me sad that this has to be pointed out (including to myself) but I thank you for speaking up with this issue. Ultimately, holding a baby in my arms will make me happy no matter anything. Thank you for shining a light on a selfish area of my heart and giving me an opportunity to fix my errors. Thank you.
YES!
Day 4,027 here.
He was not supposed to make it to birth.
He just two days ago, for the first time voiced what I have known for a long time- “I just want to be normal”
I told him the story and how awesome I think he is. Then I hugged him and cried.
breaks.my.heart. SO glad he is here.
Thank you for sharing this. I never would have considered the implications of that popular phrase. Kids are so literal. It makes me so sad to think of a child being hurt by those words.
Thank you for this. I am pregnant with our second and I have never thought of this from such a perspective. I love your honesty and your challenge. I have said the “as long as it’s healthy” catchphrase before, but I will not again. I am so thankful to have this child growing inside of me and he has SUCH value–healthy or not.
Liz´s last blog post ..Welcome 2014
Beautifully said. I was blessed with a perfectly healthy baby boy and I’m now on my second pregnancy. I think about this a lot though, this healthy thing. What if my baby isn’t healthy? My love for this baby will still be just as fierce as ever, healthy or not. Of course I hope and pray for a healthy baby. But I agree with you. More than anything, I want this baby here, in whatever condition God chooses. I think the concern over health comes from fear. A fear of the unknown, of what could be. It’s so hard to surrender my hope for health over to God but ultimately I have to trust his plan and how he is forming this baby inside of me (and what he has in store for my firstborn’s future- he’s healthy now, but will he always be?). Otherwise I would live in constant fear. Each baby, healthy or not, is created in love and is deserving of love and acceptance. Thank you for sharing
Yes!! Exactly this!!
My firstborn little girly was born at 34wks due to pre-eclampsia. Ended up with brain damage due to oxygen loss. Not severely, but it’s enough.
Now 3yrs & 9mnths later I am sitting again in the same hospital at 35 weeks with pre-eclampsia again! And while I don’t know how everything is going to playout for our new little boy who is coming soon, I still wouldn’t change a thing.
So long as both my kiddos are here and I get a chance to know them, that is exactly all that matters!
Thank you for sharing!!!
This really made me think, about something we say so flippantly, but you’re right…. it goes so so much deeper.
You write so wonderfully.
Emma @ Outmumbered´s last blog post ..Living Arrows 1/52
Thank you! As a mom of a son with spina bifida, I get it and feel it, and thank you for sharing your heart!
As the mom of three boys, I often get the question, “Are you going to try for a girl?” and it was worse when I was pregnant with my third and everyone asked, “Are you getting your girl??” sometimes in front of my boys, and I had one lady make a frowny face and say, “I’m sorry,” when I told her it was another boy. Maddening!! I want my kids to feel valued for who they are, and not like I’m popping out babies until I get the one that I really want, or that I would somehow be disappointed with the fact that I have three boys.
So that’s why I wanted to hug the lady at church who told me (after I told her, no, I’m not hoping for a girl), “That’s right, and you can’t even ask for healthy either. Unhealthy might be what God has for you and your baby. What God gives is always good.”
On a completely different note, given your love of Story, and what I read on your blog, you really, really need to read N.D. Wilson’s “Notes from the Tilt-a-Whirl” if you have not. I mean REALLY.
Actually, we own it. I haven’t started it though. But I will now!
Those simple words never even crossed my mind in the way you wrote the blog, but it was profound. I’m shouting a hearty AMEN to your words. My mind will remember this at the next appropriate time.
I couldn’t help but to be reminded of an encounter with a doctor a few weeks ago when I read this blog… as I was sitting there with my disabled 12-year-old daughter, we were discussing his grandchild who is due this April. He said thathis daughter-in-law was hoping for a girl, while all he wanted was a healthy grandchild with ten fingers, ten toes. My daughter looked at me bewildered. I actually had to whisper in her ear that all I wanted was for her to be born. It didn’t matter to me whether she had two fingers or ten. I hated that I had to do that and that he didn’t stop to consider his audience. So, your words really resonated with me. I hope your post will help bring so me sensitivity to the subject. I knew my child was going to be faced with lifelong physical challenges, and I couldn’t wait to have her in my arms and love her and care forher as she was meant to be. Thank you for this post.
This is a beautiful post and I completely agree. I just wanted to say you have been on my heart the last few weeks. My son had a febrile seizure a week and a half ago and in that moment that he was seizing in my arms and I realized what was happening I instantly thought of you. My heart goes out to you as a momma and out to your little lady. I know that one night doesn’t equate to what your family lives, but I just wanted to say I am praying for you.
I have to comment because I feel that this is a ridiculously blown out of proportion reaction to an innocuous statement. The meaning behind the statement when asked the question “Do you want a boy or a girl” and answering with “don’t care, as long as they are healthy” is that you aren’t hoping for something as frivolous as gender but you are concerned and hoping for a healthy baby. Because as you said, who hopes for an unhealthy child. It doesn’t mean the child won’t be loved or wanted if they aren’t healthy. And if you have a child who feels this way after hearing that (which by the way I highly doubt a child would react this way), it is your job as a parent to clarify, educate and reassure them. Just as it is your job as a parent to do that with pretty much everything and anything that comes up.
I have to say that I too considered that maybe Jeannette was being overly sensitive about about how the phrase is said and intended, but I don’t think she is. And I don’t think she is because statistics tell us that most parents, given the foreknowledge of their child’s imperfections, choose not to bring those children into the world at all. Because in most cases, children are not loved and wanted when their parents find out they aren’t healthy — they are aborted. It is a sad reality. But you are right, changing that reality starts at home.
I don’t have statistics, just my own personal experience that counters this. When I was pregnant with my first son, he tested positive for spina bifida while in utero. My pregnancy was rocky and at different points I was told by two different doctors that I would likely lose the pregnancy, and even that I was likely to have a stillbirth. Never once did I consider ending my pregnancy because of the probability of spina bifida (or the trivial fact that I had originally hoped for a girl). And it wasn’t out of any kind of religious conviction or political belief–I am pro-choice–but because he was my baby and from the moment I knew he would come, I wanted him, no matter what. I loved him and wanted him and worried horribly over him. And when he was born prematurely, with a bleed on the brain and fluid in his kidneys, and a spot on the base of his spine that no one could explain (but alive, and no spina bifida), I rejoiced in his health and was grateful for the minor hurdles we were given. And every day, as I now watch him as a strong, capable five year old, I remember that and all the what-ifs and I express openly how grateful I am that he (and his younger brother) are healthy. I do not take it for granted. I would have taken whatever God wanted to hand me if it meant having these two wonderful boys. And my heart is wrenched when I see the way that so many children struggle and suffer. But that is precisely why I appreciate and value every day (because life is fragile and nothing is guaranteed) that my children are healthy–I value it when I am looking for perspective over the silly dramas of life. I just cannot see how that makes me, or anyone with similar feelings insensitive, for being grateful. I think it is very presumptuous of other adults to assume that because my children are healthy today, that we haven’t had our struggles or that I say it flippantly. And I agree that the innocent comment that provoked this article, if it hurts the feelings of a child, while that is very sad that it could be interpreted that way, falls into the category of things that a parent explains was simply an innocent comment. We have all certainly been there, and teaching our children to be understanding of intent and to be sensitive without overly sensitive, is an important life lesson for everyone. I just don’t believe that people should have to censor themselves to this extent–I don’t think I should have to keep closeted, how very grateful I am for the obstacles I have overcome, my awareness of the gifts I have today, and my appreciation because it could change at a moment’s notice. Remember, everyone has a history and a story–most of us are not flippant, we are speaking from experience and from a place of love.
I think we’re both really same so much of the same thing, but in different ways…and it’s why I was leery of writing all of this out. Because obviously I don’t go around dwelling on this. But anytime you sit down and choose to write it all out in one big long post, it’s gonna make a girl look so neurotic and hyper sensitive. And truly I also do agree that people can’t go around censoring themselves all the live long day. Life is exhausting enough. My ultimate point was most simply to say “Hey. Here’s a way to re-evaluate the words we choose to use, even if our intentions behind them were such and such.” It’s not about censorship, sensitivity or being flippant…it’s about understanding just a little bit more where each other comes from, you know? Your history and your story colors your own worldview…as does mine. In the end, a 3 hour coffee date later, I’m pretty sure we’d walk away dear friends.
(Related: blog posts are hard. You think you said what you wanted to say and then people comment and you’re all “Wait! That’s not exactly it!” or “hold on! I agree with you!” #bloggerproblems right?)
[Don’t like the question! Have probably asked it myself. What I do find interesting, now as a bystander, how in the early stages of pregnancy, though it is a monumental annoucement, after the congratulations, there is very little to say that is not incredibly personal, yet it feels like it is so important and big a thing, it should predominate the conversation. Shopping around for questions, “boy” or “girl” seems to stick out there.]
Point taken, worth mentioning and discussing, not necessarily worth a campaign (we are still struggling with the “R” word campaign).
And certainly the main thing to think about is how this affects kids who hear. And to get them to understand what it does (hopefully) mean.
[Sometimes it really does mean “I wouldn’t want an unhealthy child”.
Mostly it just means “I wish health for my child”.]
Children should be taught that wishing for health, is not the same as not wanting a child whose health is not perfect. [And yes, define “health”.].
I don’t know if I have ever used this phrase. I don’t think I have ever initiated this response, but as any response is generally followed up with a comment from the asker like “Yeah, so long as it’s healthy, hey?” (to which I would reply something like “Of course,” or “So long as it’s a baby”).
So I may have said it, just because I got tired of agreeing to the obvious, and/or it seemed to be what people expected [Like replying “Fine”, when people ask “How are you?”; which I often have a hard time doing these days, when my grandson is in hospital, or having hundreds of seizures a day].
I was never really great with this phrase though, because quite simply, I didn’t think the thoughts went together. As you yourself, Jeannette, and other responders have stated, no-one wishes for their child to be unhealthy – it doesn’t really need to be said. So to some degree this reply surely is inferring that the asker assumes that male or female is important in the same way as healthy?
So then, a different interpretation is that the asker is implying that the “default” condition is healthy, and that the responder is acknowledging that the possibility of ‘not healthy’, (of disability), exists.
Really, I think the question is wrong – in front of children (“Oh, I have been longing for a girl”, “It is so important to my husband that it is a boy”, in front of your own, or any, children?)*. [yet we probably cannot not take political correctness (sensitivity correctness) so far as to start campaigning against the “boy/girl” question? Stupid as it is we all ask it.]
Given the world as it is, it is probably more important to make sure the child understands that this is only a wish for health.
So many things can, and do, hurt. In haste and hurt I wrote to an Etsy seller who produced Tshirts for little girls and boys, imaged with XY, and XX chromosomes, because it broke my heart, explaining to her “just one little fault in that X chromosome!”). She wrote back, probably correctly, saying she though her shirts were really quite innocuous, just saying “boy” or “girl” (though there are those who are not even simply XX, or XY). Still, probably I might just as well complain about a Tshirt that has an image of a healthy child on it; or perhaps a Tshirt with a dog, if for some reason my grandchildren cannot have a dog.
In response to a post my daughter wrote about the “R” word – she got more than one vehement response from people demanding the right to say what they choose. One stating: “No-one has the right to not be offended.” ?? An interesting topic for a blog – there is some truth in it. But if you had any inkling of the insult and the pain of this word to people who are no different to you, except for what fate had dealt them, why would you use this word, it is not like it is communicating anything worthwhile? Some people only seem capable of understanding if they have walked in the shoes.
I guess what I am looking for here is some discussion on that (a new post?), maybe about people’s right’s not to be offended?? I really want the words to say to the people who refuse to consider the hurt they inflict when they insist on their right to use the word “retard”.
Perhaps I am just saying some things are definitely worth mentioning, and thinking about, and other things are worth a battle. Is it that too much “PC” (or too much trying for sensitivity) may not help that battle; is just fuel for those who don’t want to listen to anything? But perhaps I am wrong – perhaps such people will not listen to anything unless it happens to them.
I guess too, I want to clarify that in a way the problem with the response lies in what it says about the interpretation of the question in the first place (which is what has never sat right with me – that “boy” “girl” and “healthy” are on the same playing field). I am annoyed that when my answer is not “so long as it’s healthy” that the asker then has to say that for me – as if I have let down my baby by not saying I want it to be healthy! (“You asked if I prefered a boy or a girl – not if I wanted a healthy baby!”)
There is no winning with this question!
Sorry for that long rambling mish-mash. I was under time pressure, should have waited.
I have just posted a re-write, at end of discussion, which I hope is better.
And yet I still managed to spell your name wrong (so, twice). I do think spelling is important, and I love the spelling of your name (even though I have trouble remembering it). Only excuse is we had a tough year, and don’t yet feel ready to face another one (I temporarily share care of my grandson, who has 2 younger siblings). Sorry Jeannett.
Look forward to reading more of your posts.
We adopted our boys for this exact reason. When they were born “unhealthy” their parents gave them up for adoption (domestic not international). I am not judging them for this, they did the right choice for them and my boys are in the house God intended them to be. But Jeannette does make a valid point to what the underlining tone of that statement means. The abortion rate in downs goes to shows it as does the adoption of my boys. They were wanted and spared no expense for them until they were born “unhealthy”
Great post.
I just think so many parents believe raising special needs kids is an impossibility, or at least something they are completely incapable of handling. How wrong they are! I want to tell every mom and dad faced with a scary diagnosis for their child, YOU CAN DO IT! Say yes to that baby and know that a bad test result may change your future plans, but it doesn’t mean your life is over. You will never regret raising that child for however long you are blessed to have him or her on this earth.
I know until Spinal Muscular Atrophy (SMA) was dumped on my family, I never would have realized the mother I was capable of becoming. I hope that through meeting me, my family, and even my blog, people realize raising special needs kids isn’t just for saints or people with super human abilities. You don’t need that ideal healthy child to have a happy life, and for your child to have a happy life. Every child is a blessing; every life has worth.
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And I should add, your blog Jeanette! You are a positive face on parenting a child with special needs. You are not some super hero. God didn’t send you a daughter with CP because you can “handle it.” I hope people realize they are just as capable of being in your shoes and having your outlook without special genes.
”…I don’t care what it is. So long as it is here. So long as I get a chance to know it.”
Beautifully written and exactly how I feel about the little being growing inside me after a miscarriage last year. God bless you Jeanette for “going there” and sharing your heart, beacause assurdely, others feel the same way. I know I do. Thank you.
Whitney
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The way you present that comment had never really crossed my mind, but it’s so true. My Great Grandfather would say, “Words are cheap, but you can’t buy them back.” And children do take thing so literally, we as adults really should be more considerate and think before we speak.
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LOVE that!
jeannett´s last blog post ..Why it matters when we rub our bellies and say “so long as it’s healthy”.
So well written. “So long as he is here.” I’ve said, “as long as the baby is healthy”. I’ve lost one of my twin sons. I understand. “So long as you have time to know them.”
I am 34 and have CP that , mobility-wise, looks a lot like your daughter’s. You, mama, are the mom that I wish every kid with a disability had. I want to tell you that she’s going to grow up to have a great life, that she will have most of the experiences that all adults have- those milestones. Maybe they’ll happen a little later or a little differently, but they will come. And she’ll have (and is having) so many other experiences that most never have, opportunities that will make her (and you!) cry, but will also build character, resiliency, and empathy for others. And that being able to run and jump in no way relate to having a fun, enriching, and loving childhood. But I can tell you know all this already, even when the days are hard. So mostly, I just want to give you all a hug.
Beautiful. Thank you.
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Man, this blew me away. How often do we (as society) say things without thinking about them? Throughout each of my pregnancies I remember saying this, but it wasn’t quite what I meant by the time I was pregnant with kiddo number two – all mine have the same rare genetic disorder, autism, epilepsy (and awesomeness .. must sneak that in) …
I remember being asked, multiple times, if I should have aborted (by family, but let’s not go there); if it was “fair” to bring a child into this world to suffer – especially after our youngest’s seizures grew more complex and life-threatening. I always said that my guys were amazing blessings and I couldn’t imagine life without them.
Now, as my boys get older, I am more aware of language than ever before. We’ve always tried to help them see that they are amazing – tried to surround them with people who think the same. But in the back of my mind, I’m always braced for the next person who thinks that their lives aren’t worth living because they are more difficult, because they have had to work harder.
It breaks my heart to think that our society views and acts as if our kids are throw-aways, not worth living, just because they have a given diagnosis. Don’t know that I have words beyond that. Very thought-provoking post!
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I can see where you are coming from… When I was pregnant with our first child we were told he was going to born with clubbed feet something that “could” easily be fixed with doctor visits and adjustments, etc. and the doctors were quick to offer us an abortion because the baby was not “perfect”. My husband who was just my boyfriend at the time both agreed that an abortion was not an option no matter what they said was wrong with the baby even if it meant downs syndrome. Yes we knew our life would be hard with having a baby with a problem but we did not care our thoughts were God would give us the child that he wanted us to have medical problems or none. We now have 4 children and have never done any extra testing while pregnant because it truly did not matter we would be grateful for whatever precious gift God gave us. Many hugs to you and all the other moms who were blessed with God’s special children you were chosen to me their moms for a reason and not everyone is blessed with that gift it truly takes a special person. Remember That
~ God Bless
Your statement “So Long As she is here. That’s what I say.” brought immediate tears to my eyes. How true this should be! I buried my daughter 18 years ago and am crying for her right now. She was born “unhealthy” and died prematurely. Value everyone…
I agree.. and i always said “as long as it’s healthy” I never really thought about it the way you just explained it. ..makes me sad. I would never want a child to hear those words and think they aren’t worthy…. for me i said it not because i wanted a “perfect child” out whatever you want to call it but because i never want my children to hurt our be In pain I wanted a healthy passion free baby but if i got a child with a disability or illness I would love him/her with my whole heart just as my “healthy”children. .
Pain free** not passion
And i have three beautiful daughters. . And i never got the down syndrome Test done with any of my pregnancies.. because to me it didn’t matter abortion was never an option. .and i didn’t need to know because i would love my child regardless
I have to say I understand where you are coming from but as another stated I use healthy as a word for alive. My first was expected to be born and die soon afterwards. I prayed for healthy. Which really just meant alive so I could fight for him. My third child I had an abruption and I remember begging them to get her out of me alive. I would have never thought of not wanting her if she was the quote unhealthy but I wanted her alive. And my daughter is being checked for cp because of her birth and no matter the medical issues or hiccups as I call them I am so proud she is healthy. Healthy to me means not being alive and able to fight. Not something that is going to take that life away. Then again I grew up with a sister that was unhealthy a lot. Meaning she was close to death and died a few times. I understand where you are coming from but just to put it out there I will never stop being happy about being healthy. Because that means life is going on and too me each day is an amazing gift. Please do not get me wrong I loved reading this because I would have never thought that to someone else my speech of healthy could hurt them or other. I do remember my sister coming out of yet another coma and my mom praying to God about how thankful she was her entire family was healthy once again.
Thanks for this. St. Jude has an advertising campaign that says “give thanks for the healthy kids in your life.” Although I’m sure it’s not the intended meaning, I always think the unintended message is that you wouldnt be thankful to have your kids if they kids were sick or had special health needs. The reality is that we can be just as thankful to have those kids in our lives, even as much as we would do anything to take away those struggles they face. I take no issue with St. Jude’s as an organization, but the billboard makes me cringe everything I pass it by. I always wished it said “be thankful that the kids in your life are healthy.” And the unwritten extension is to be generous and caring toward those awesome kiddos who aren’t “healthy.” But after reading your post, I can see how even that rephrase could be hurtful. I’m not a parent (yet), but I am a pediatric nurse. Sometimes I thought I was over sensitive to that advertising campaign, but you’ve validated my thoughts. Thanks for your heartfelt blogging.
It’s not just kids who have a hard time hearing it, but disabled adults too. I’m 28 & have CP & chronic depression. A year ago my older brother called me and told me I was going to be an aunt. My SIL was 35. My brother promptly told me every single person who knew, & that I shouldn’t tell anyone else, they wanted to wait until all the genetic tests we done “& we know it’s healthy.”
I didn’t sleep that night. What if the baby wasn’t healthy? What if it had Downs or autism, or likely (runs in the fam) ADHD? What if it was missing half an arm? Would they abort? What if it turns out later that the baby is trans? Would they love their baby less?
Irrationally I wondered if that meant my brother loved ME less. & I wondered if my 30yo college educated brother was an idiot because he should damn well know there are plenty of things you can’t test for — like CP. These thoughts constantly circled my head for days.
Then the damn tests came back & my mom sent everyone emails in all caps that they were having a HEALTHY BABY BOY. She sent those emails to me. And I wondered if she loved me less. And how she of all people didn’t know that tests are meaningless.
Ryden is 5.5mos old. He has all 10 fingers & all 10 toes, but he might still have ADHD (probably) or autism or be deathly allergic to peanuts or decide one day that he’s really Rebecca. It’s not like they’ll give him away. So why waste energy hoping for healthy?
Well, I don’t think it’s wasted energy hoping for healthy…hope is necessary. Hope is lifeblood, really.
But no matter what all worthy of the same.
Life.
Hugs to you today. Thanks for commenting.
I’d completely put the whole thing out of my mind until this came across my newsfeed tonight. And then I posted it to my wall and my mom read it and agrees with you. When months ago I tried explaining to her how upset I was (to my core) and why she told me I was being too sensitive. At least now I know if they have another, no one will say that around me. To me “I hope it’s healthy” just makes me wonder, will they love the baby less? Do they love me less?
I don’t know, maybe I’m the only one…I’ve always wanted healthy pregnancies, especially after having a miscarriage. I was blessed with two children before, and two more after, my miscarriage. And I mean it, when I say I want a healthy pregnancy. I know that’s not specifically what you are referring to, but it’s what I mean. The baby will be whatever the baby will be, and my husband and I do very little prenatal testing, because frankly we will love our child(ren). Also, as was alluded to, unless we all go around paranthetically notating our comments, anyone could be offended. I do get what you are saying about little ears not understanding, or thinking something else, but like you wanting to take away your daughter’s illness in a heartbeat, if I have my choice I’d choose healthy…it doesn’t mean I will love my child any less if they have one ailment or another…it means that I wish, hope and pray for the best for my child. And like health, what’s best or ideal is relative, as well. Again, maybe I’m the only one.
Very good articles with lost of great points of view. I have 2 other views. One; our son born ‘healthy’ only to discover at 15 months a life threatening food allergy that will effect the rest of his life. Then at age 5 dx with ADHD and SPD almost back to back.
Secondly; my last pregnancy resulted in triplets. Shock of my life and I will forever be affected by the 3 human beans God entrusted me with.
I so get this. And the ugly Down syndrome statistic indeed belies some downright frightening attitudes towards disabilities, syndromes, and disorders. People are people, and life isn’t perfect, and we must learn to embrace our children because they are our children. Regardless their chromosome count or medical condition.
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when i was pregnant with my daughter (after having a son with down syndrome) people would ask if we knew the sex, when i said “no” they would say “it doesn’t matter as long as its healthy” most of the time id reply “i don’t mind as long as its a baby!!” people thought i was odd they didn’t know how insulting their as long as its healthy remark was. its a throw away line people say automatically but i know “as long as its healthy” doesn’t include my son. i lost count saying id love my baby however they came to me. i wish instead of excluding babies with medical challenges people just said as long as its loved and wanted. sex and health can be screened for but shouldn’t determine a baby’s right to life and love!!!
Hi Dear
This is the first time I visited your page and trust me the time was well worth it. I too have a 6 year old with down syndrome and I perfectly understand or relate to your emotions. Even now when I am meeting a friend or a relative who is pregnant, this phrase makes me want to go invisible, ofcourse with my daughter. you have beautifully written this thought provoking article and have given voice to many.
thanks
Deepa
http://aarshiandmama.blogspot.in/
LOVE THIS!
My son came from a culture that thinks if they are not healthy, they are less than human. No kidding. They toss those born with disability into an orphanage FROM BIRTH. My son did not know the love of a mother until 3 months ago… he is 4.5 years old. He was born with spina bifida in Ukraine. We sought him out, chose him *because* of the spina bifida, paid $22K to bring him home and love him, left our “pretty, pink, perfect” kids home with grandparents for 2 months to go halfway across the world and yank him out of a culture that takes “So long as it’s healthy” WAY too literally.
That “So long as it’s healthy” reaches into the adoption community, too. People pay $50K + for a “pretty, pink, perfect” white healthy baby in the US. We almost adopted a baby girl with SB from the US. The teenager carrying her had chosen a family for her and that family rejected the baby when they found out she had SB. She decided to find a family through her local SBA chapter, so that’s why we stopped pursuing her. God had other plans, to send us to Ukraine instead.
“So long as she’s here.” is MUCH better. Because all babies have value. All babies deserve to know they are loved, just as they are. :)
Our 8-year-old daughter has OEIS, which includes spina bifida and a host of other conditions. We let her know that she has been wanted since before conception and that she is worth more than the world to her friends and family. I just asked her what she would think if someone we knew was pregnant and said, “As long as the baby’s healthy.” I explained that she was not born “healthy” but we had no intention of giving her away or worse. She still didn’t understand. (She’s of above-average intelligence for her age.) I don’t know if the younger children would understand the implications of the phrase mentioned above. E said she would be happy if the child was healthy and then she said she would try to help the baby if it was sick. I think this post is more for the adults and teenagers who can understand the phrase and apply it to their unique situation. Personally, I’m not offended by it.
I had the privilege of being Mommy to the most precious child. Samuel had special needs. He is now in heaven after being with us for almost 8 years, but he taught me so much and though I would have never chosen for him to suffer and never walk or talk or enjoy so many things, he was truly a gift! He taught us to have thankfulness and joy in everything. He touched more lives than any other little boy I have ever known! Of course, we desire good health, but God’s plans are rich and in the end we will all see the beauty of His Plans. Thankful he was mine <3
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I get where you are coming from and don’t totally disagree… However, I have suffered from arthritis my entire life. I was diagnosed with JRA at the age of 2. Doctors expected me to be wheelchair bound by the end of kindergarten so it was a very severe case of RA. I never ever grew up believing I wasn’t healthy. If someone had asked if I was healthy I would have told them all about how I never took a sick day from school. I was a nerdy kid and so proud of my perfect attendance record! Unhealthy kids get sick and miss school, not me! My disease was part of who I was and my parents raised me to feel no different than any other child, I never would have associated myself with the word unhealthy and I still wouldn’t! Sure I have had both of my hips replaced but that has helped me to continue my healthy lifestyle and keeping up with an exercise routine. I think children live what they are taught. I was never taught that my disease made me “unhealthy”.
Such an awesome post!! I had never thought about that saying until one weekend my kids and I stayed with the Hull family (Sarah & Katie, you know them right?) and while Sarah and I were talking this came up. Ever since then, it rings it my hear every single time that I see a pregnant woman. Thank you for sharing your mama view of it. Definitely a post I’m sharing with friends!
And, your little lady is so lucky to have an awesome mama like you!
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I loved your wonderful analysis. Your daughter is lucky. I am a woman who was born with a disability and I am a mother. How many people look at us and pity us, saying ” there for the grace of a God go I?”. Too many! I believe. There are too many people who assume that to have a disability is a problem. Well it isn’t. I’m not a problem. What do all of us have in equal measure? Feelings. We all feel love, joy, excitement, fear, sadness, anger etc. So when it gets down to it we are all healthy!
Oh Ann Marie, it only that were true for all.
Sorry, but some of your wording brought this topic/rant to mind.
I am afraid I have significant problem with people with vastly varying disabilities, who assume they have some special right to speak authoritatively on behalf of all “disabled” persons (or speak on behalf of those with extreme disabilities, more so than such people’s own their families!).
A person who has disabilities which enable them to raise a family and/or go out to work, has no more experience to talk about (or “for”) people who cannot even understand language&communication, than any other concerned human being has. (like a footballer speaking behalf of a croquet player? because they are both ball sports played on grass – more in common than many “disabilities” !).
Though any thoughtful person who is not part of the immediate family may indeed be able to step away and give a different and worthwhile perspective. There is nothing wrong with what you wrote, except that it is only part of a picture (or one of many stories).
I am sure you understand many of the complexities of life. But there are numbers of people out there, with intelligent blogs, or who write letters, who somehow think their disability makes them more able to speak on behalf of people like my grandson, than their own families.
I wanted to address your “not a problem” but realised I could not do that respectfully to you [Ann Marie], without showing a different picture. It needs a separate reply.
Since the birth of my grandson, consideration of the complexities, and contradictions (!!), of life (and the complexities and limitations of words and communication) can put my brain into a tailspin.
… … …
My daughter was severely criticized by a mother in a support group for one of my grandson’s syndromes, for saying he was “damaged” (“Our children are not damaged!”). Really? If they are not damaged – what are you all praying so hard for a cure for? [Within 12 months this same woman (in break-down mode) was ranting, on the net, against the syndrome, and God, in far worse terms than my daughter (in realistic mode) has ever used.]
Where is the line between denying reality, and sensitivity?
If only it were so easy.
Ann Marie, with respect, another part of the picture (another story):
Not a problem?
My grandson will die (most likely in his teens, but possibly much earlier; or later) without ever having experienced life as most of us understand it.
He is nearly seven, and does not even understand the word (or sign, or concept of) “no” or “stop”. He learnt to smile at around two and half (maybe, it was hard to be sure if it really was a smile, until he was three, and gave tiny little chuckles) but he doesn’t smile all that often. His overall mood, since birth, is distressed and cranky/grumpy.
He did not have enough emotions (?, or did not understand that people could do/or not do things for him?) to have a visible temper tantrum until he was three (a temper tantrum was one of his biggest milestones. Hard perhaps to understand how happy it made us. But sad too, that he experiences so much frustration.)
He does not understand the world.
He cannot walk (bunny-hops around); cannot use a wheel chair. He wants to be held, almost constantly, but is still, often, not happy in our arms.
Now (from about three years old) he is happy to recognise us, but really does not understand who we are. He will reach up for any stranger to pick him up.
The doctors & therapists tell us we must constantly put him through therapy he hates, and cannot understand; to keep his legs straight, and so that he might stand.
In vastly simplified terms one year of development for him, is a bit like a month for a typical child/baby.
At five/six years, to our joy, he seemed to begin being more aware of – the world, life; understanding a little more; interacting!!!
e.g: understanding that when we make those odd sounds we are interacting! (so he makes noises back sometimes.)
Remember the joy when your five to six month old starts realising they are alive? – We were there.
In the last 12months he has started having dozens of seizures a day.
Not a problem???
Definitely a problem for him, and sad to say, but truthfully, a problem for his entire family, particular his small siblings – for whom it is difficult to get the attention they deserve from their Mummy.
You can call it a “difficulty”; you can call it “a challenge”; (original meaning of “problem”: a puzzle or a difficulty to solve; we do our best to overcome these difficulties, but many of them are unsolvable ) – it really makes no difference – it is what it is.
I hope that it is not necessary to say how much we love him. However we are not even prepared to say “look, how much we (and others) have learned/gained from this”. We love him because he is him, our child who deserves love. He is not an object lesson, or a chance to meet interesting, caring people. He is who he is. He doesn’t have to teach anybody anything. It is a joy to love him, but heartbreaking daily to watch his curtailed life.
See, Jeannett – anything can hurt. Ann Marie, with completely commendably pride in herself, saying “Not a problem” hurts.
People saying “but look what we (our other children/friends) have gained” – can hurt! that is not the point of a child (what? – at the expense of our child’s health!? – his innocent pain?).
I know your main point is little ears,
I would suggest that most who can understand the word “health” can probably understand that it is a good thing to wish for?
But then, I don’t think little ears should even have to hear the question!
Not saying we can’t all try to do better, and think about the audience – just saying this one (like most) is complicated.
To be as objectively honest as possible, Jo, it seems like you sat down to reply with an ax to grind. While your case sounds absolutely trying and painful, it certainly does not have much to do with the topic of the blog, which is the idea that children internalize that they are not the “healthy” babies that parents hope for. Ann Marie’s circumstance is much more applicable in the sense that we should be mindful of people’s feelings. Again, I absolutely feel for you and your family, and I hope for brighter days for you all. However I do not like to see people responding to others’ posts by competing for who has it the hardest. Whether that was your intention, it very much read that way.
As adults, we have the capability and the responsibility to protect our own feelings and identify with our own reasoning for why life has turned out the way it has for us. Children in their earthly sense (as opposed to spiritual) do not typically have the development to define their own subjectivity, which is why they are the center of this discussion.