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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Halle-fucking-lujahhhhh! JUST what I needed to see & read today. I hear this SO MUCH & cannot help but think of our two daughters, both of whom have profound special needs, and how derailed these unsuspecting moms would be should they have given birth to either of our daughters.
Likewise, I hear the, “Oh, I’m sooooo glad you have your son (who is typical)!!!” comment also. And just as with the “as long as he/she is healthy!” comment, this sucks the big one. Almost as if he “makes up for” the fact that our daughters are so affected — that we are able to experience “normal,” thanks to him. I can tell you that he is far from “normal” & normal is just so friggin’ BORING at times! LOL
Don’t get me wrong — like you, I’d gladly take away my girls’ struggles if i could, but honestly, without them AS THEY ARE, they wouldn’t have changed me as they have. They wouldn’t have made me love more, feel more, grow more, understand more. THEY are who has changed me the most. Seeing how our son has adapted to life as the big brother of 2 profoundly affected sisters (microcephaly, spastic quad CP, epilepsy, dwarfism, blah blah blah) makes me love him even more & I am continually in awe of how much he treats them like any other kid might treat his/her sibling. They “fight” & he gets on their nerves just as they get on his at times. Cracks me up & ENRICHES MY LIFE in a way I might not have known had the girls been typical.
SO. FUCKING. GRATEFUL.
Love this & love all that you are in this post. And most of all, ALL THAT YOUR DAUGHTER IS & ALWAYS WILL BE. Cannot wait to follow you guys more. HUGS from KS!
xo Gwen
Gwen Hartley´s last blog post ..The Dream That Brought Me Full Circle
I’ve felt this same way ever since I had my Bella girl. And when I was pregnant with Rhett and people asked me what his sex was and we replied that we didn’t know, EVERYONE would say, “Boy or girl, as long as it’s healthy, right?” And I would ALWAYS say, “Even if it’s not healthy, I still want him!! The baby inside of me, I want him!”
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love you friend.
I get the sentiment, I really do but let me tell you a little about our story.
We, too, have 4 children who are, by a string of miracles, all alive and “healthy” today. That, however, was not always the case.
Our oldest was born at 34 weeks. A little early, I’m sure you’ll agree.
Our second was born at 26 weeks. He weighed just under 3 pounds when born. He didn’t breath by himself for the first 20 minutes of his life. He had brain bleeds, and all kinds of issues. We were told, on multiple occasions, that it was time to say our goodbyes because he wasn’t going to make it. He was in the NICU for the first two months of his life during which time he had two collapsed lungs too. After he came out of hospital he had several surgeries for a multitude of reasons. He is now 6 years old and a tall, healthy child who participates in any sports he can.
Our third was also a miracle. My wife’s waters broke at 18 weeks. She was put on strict bed rest. Even so we were told that the chance of the baby making it to a deliverable gestation was highly unlikely. The chances were that we would give birth to her by 23 weeks and spend a few minutes with her before she died. She was born at 32 weeks. Once again, she was in the hospital for the first month of her life. When my wife’s waters broke the doctors gave her no chance of survival and yet she’s a beautiful 3 year old now.
Our fourth (yes we had another one after all of this) arrived at 37 weeks. No problems at all. During the course of the pregnancy we were asked what we were having and we responded, “We don’t care as long as it is healthy.” We didn’t mean we were rejecting her if she was born in the same or worse state than the others, neither did anyone we know believe, for a minute, that is what was intended. It was simpler than saying “I really don’t know if we can take all of this again. We hope she’s healthy for our own sanity.”
Going about your daily life when you have a newborn fighting for his/her life is draining. During our third pregnancy we both lay awake at night for well over a month just waiting for that one big contraction that would signal us going to watch our daughter die.
I understand your dislike of the phrase, but there will be times when people say that because it is, seriously, the hope that they don’t have to go through the same things that they have previously. That doesn’t mean that we don’t love our kids any less if they are not born healthy, its just that you can only handle so many life and death situations and the hope to have a healthy child is also a hope that these instances can be avoided in the future.
I agree with you Lee – I am pregnant now and no matter what, will love this baby. But what I mean or hear when that phrase comes up is that a living (and hopefully healthy) baby is more important than whether it is a boy or a girl. Being pregnant or a parent makes you realize how fragile this life is you are about to take care of, and you want more than anything to protect them from as much hurt as possible. I DO hope my baby is healthy because I don’t want them to hurt, but I love them just the same. At some point, they will hurt, whether that is due to an illness, relational situation, etc, and at that point you walk with them through it. It doesn’t change the love you have for them.
First, thank you both for taking the time to comment so honestly.
We all have a story and everyone’s is so different and colors their view of everything. In the same way that my experiences have colored how I feel when a common figure of speech is used. I think that it’s so true that for the people commenting in this post that they would love the baby regardless.
But I think what I was REALLY trying to say in all of this…that seems to somehow be getting lost in the message is that little ears are sensitive. And yes, it is my job as the parent to talk them through things, but a little sensitivity might help the heart of the youngest among us. Hurtful words are still hurtful even if they weren’t meant to be and even if a mommy can do her best to explain them after the fact.
I for one totally understand what you are trying to say with this message. My second son was born at 36 weeks after a difficult pregnancy. My first son was a few days shy of 2 and a half years. All through my pregnancy I always said, when asked what I was having, ” a baby “. With all the troubles I had during the pregnancy, and my son seeing mommy hurting or having to inject insulin 4 times a day, it didn’t seem right to say “as long as it’s healthy”! In all truth we didn’t care if he was healthy as long as he didn’t pass on before we met him! I never wanted my son to hear those words and think that his little brother was any less loved if he had problems. After my second son was born he spent what seemed like years in the NICU needing a tube to feed him and I.V’s for medications. All my first son knew was that his little brother was sick and thankfully never would of thought he was loved any less! Today both of my kids are doing great and I still would never say as long as they are healthy simply because I don’t know what the future holds. I would never want them thinking I would stop loving simply because they are unwell! It would kill me to see either of them hurt in any way but healthy or not they know they will always be loved!
You know what Lee, maybe for a mother — it doesn’t matter, maybe for someone who has four children and has struggles as you have, so long as it’s healthy is a well wish for you — but I think what Jeanett was trying to capture here was the fact that people DO interpret “as long as it’s healthy” as “I’ll get rid of it if it’s not” — I have 5 children — 3 were preemies – not micros like some of yours were — but let me tell you part of my story (because really there’s not time or space for the whole story)
As long as this baby has a soul — what’s interesting is that when my husband was a boy/teenager he used to tell God, “I won’t have a child with disabilities, it won’t be me” as if he could will it to never happen. Our first born developed autism in his second year of life, by his third year we were seeing many specialists for him and my husband struggled, deeply. I heard him say once, “I told you I didn’t WANT a child with disabilities” — I said, What you’re saying is that you don’t want our first born son, the son you were promised by God when you were a teenager.” He argued with me, “of course that’s not what I’m saying!”
“But it is,” I said, ” because this is our son and he has disabilities, whether you want them or not. Are you saying that you don’t want our son?”
“I don’t know” he said, breaking down and crying, “I just never thought it would be me, it’s like I knew it would and I was telling God, “no”.” As he continued sobbing, he said it, that phrase, “Everyone says, as long as it’s healthy, that’s all I wanted. I don’t want him to struggle. I don’t want to try to have to figure it out, figure him out.”
Acceptance finally started to come after this, but I wonder, I wonder if he had a healthier respect for all life instead of just “healthy” life, if he might have had an easier time with accepting where is son was and who his son is.
I don’t think that IS the sentiment of most parents when they say those words. I would like to imagine that all of the parents I know would love and care for any child with which they are blessed. Whenever I hear someone say “as long as it is healthy” my first thought isn’t “so, what are you going to do if it isn’t?” It is monstrous to assume that is their intent and absolutely abhorrent for anyone to think so of such a person. Yes, there are exceptions and some people struggle more than others, but to assume that this is what people mean when they utter those words is truly shameful, you are judging that person based on your own perception of what they mean. Why don’t you ask them what they mean instead of making assumptions?
My close friend has twins. One of them is perfectly healthy, the other likely won’t be able to move by himself for as long as he lives. When he was born he wasn’t “healthy”. He was fighting for his life. “As long as they’re healthy” was said by them on more than one occasion. When he was born and there were obvious problems did they turn around and say “No, thanks. We don’t want him”? Of course not, and who are you to say that is what anyone means by the comment?
This may come off a little heartless, but if you take offense at such a statement then maybe it isn’t the people you should be blaming, it is you. One of my favorite quotes is:
“He who takes offense when no offense is intended is a fool, and he who takes offense when offense is intended is a greater fool.”
My intent is not to anger you or anyone else, but I really think those words have been blown out of proportion, sorry.
erm, I wasn’t offended at all actually and I know that most have no ill intent and most have value for life no matter the disability — you were pretty clear that you do! and I totally understand and do not take other’s well wishes and blow them out of proportion as being negative or offensive — I think we do our children a disservice by not clarifying what that means though, not talking about life having value beyond the healthy and that’s not something can be said just once, it is a lifelong example we give our children and prayerfully others. But I think maybe as a hurting parent it’s ok to say in response to those genuine well-wishers – thank you, yes, we will love this little one no matter their gender (if gender is the even the reference) or condition.
Actually, my experience HAS been that many people who say “as long as it’s healthy actually do mean it…” They would not be willing to accept a child with a disability or an “unhealthy” baby. My daughter has Down Syndrome, and was born with a heart defect requiring open heart surgery at 3 moths old. (all diagnosed prenatally, 1st and 2nd trimester). I had friends say “You’re a better person than me, I would have an abortion.” I also had somebody say “I hope my kids are healthy. I don’t want to go through what you have gone through”. (in other words “I don’t want a child like yours.”) The truth is, this is more than just a catchphrase, and unfortunately many of us who do have kids with disabilities have experienced the harsh reality of this. So yes, when people says this, the first thing that comes to my mind “AND WHAT WILL YOU DO IF “IT” ISN’T????)
Beautiful. Just precious and beautiful story about your husband and autistic son. Thank you.
We didn’t get to meet or child number one and we also didn’t get to meet our child number 4. I still grieve… But I am so thankful for the middle two. They are such a blessing! And I’m so grateful for God’s grace in our loss.
I agree with you fully. Though I will say that anytime I talk of having children with my spouse, I do say, “I’d prefer a boy as long as it’s healthy.” But then I follow up with, “I fully understand that sounds horrible to say but I personally don’t believe I have the strength to raise a child with a disease or a disorder I can’t handle. But then again I suppose God won’t give me anything I can’t handle.” So, I do recognize what I am saying; I am not blind to what it means. Wanting a healthy baby means wanting a baby free of diseases and disorders as selfish as that is. Though in some ways I don’t think it is selfish. They are very trying things to go through in life (I personally know of some parents that struggle day to day). I also have medical issues that I have overcome, but, that really made my life and my family’s life a living hell sometimes growing up and I would never want that for my child or my family. But I do know that if I have a child with a disease or a disorder, that I will love them and care for them just as much as if they didn’t have it, no matter what.
Food for thought as far as I am concerned. I enjoyed reading your thoughts and think you articulate your sentiments well and I for one agree that no one would ask for the struggles that a child with a disability and their family endures but quite frankly as you say and I think what people truly mean is : ”…I don’t care what it is. So long as it is here. So long as I get a chance to know it.” I know when I was being rushed to hospital at 27weeks pregnant and told they have to deliver my baby NOW, I know I wasn’t thinking “I hope the baby is healthy”, I was screaming with all my being that my baby would “make it”………..and through all the months and ups and downs of NICU, our thoughts each and every day weren’t “please be healthy” they were simply “we love you and are here for you” of course we hoped we could take her home, and that she would avoid the myriad of possible “problems” that could occur. We didn’t avoid everything. She does have Cerebral Palsy. Her life and ours is what it is, but every ounce of my being is as you say: grateful she is mine and thankful she is here and that we are blessed to have our two incredible children.
yes. yes. yes.
i feel this so much.
of course alive. but of course healthy too.
and mama, give her an extra squeeze in the grocery store when she hears the “so long as”. it will sting.
Beautifully put. My daughter is Autistic and after having travelled this journey with her for her 15 years, I, too struggle with how something as simple as health (or in my case, mental health) can be taken for granted.
We all love our children and I am probably guilty of having said that “…as long as it’s healthy.” statement (or one similar) when I was pregnant. Somehow “healthy” takes on a whole new meaning when there is something fundamentally different about your child.
I think you’ve captured the idea that just being slightly more sensitive (not the dreaded “PC”) about how we share our views dead on. Thanks for sharing your story!
This really is a great post, but I have to also tell the other side. My daughter was born with Leigh’s Syndrome, a terminal mitochondrial disease. We watched her suffer for almost 2 years before watching her take her last breath in our arms at 23 months old. She could never hold her head up, sit up, roll over, or even hold a toy. She was fed through a tube. She had seizures. It broke my heart to know that she suffered so much and was never able to live any sort of a normal, fun life. If I were to have another child, and I was told that the baby would suffer from the same disease, I’m not sure that I would continue the pregnancy. Not because of how hard it was on me (although I truly don’t think I would make it through the death of another child), but because I would feel like I was making a very selfish decision to bring a child into the world that I knew for sure was going to suffer incredibly it’s entire life. I’m so glad that I got to meet her and that I was her mother, but I just couldn’t do that to another child. But, your post was a wonderful perspective on a phrase that is so commonly said. You are right. If a sick child heard those words, it could devastate them.
I totally understand you. I have 4 kids. 2 are preemies. 3 have health problems, 1 of which is medically complex. I never cared for that statement. I want to ask, “But what if it’s not?” I have seen people give my kids looks and treat them differently. I hate the thought, though of people not wanting their children simply because they weren’t what society deems to be perfect. Unfortunately, that does happen. Children are given up for adoption or neglected. I see babies and kids at the hospitals, while we are inpatient, sitting all alone, all day every day, because their families couldn’t be bothered. Not to mention, since when did it become taboo to say you’d desire a specific sex? Everyone leans one way or the other. Just say it.
I really like this article and think you make great points. As background before a little nitpicking, I want to admit that our challenges are extremely minor as far as parents of “kids with troubles” go. My second daughter was born with a diaphragmatic hernia and spent 58 days and two major surgeries in the NICU when she was born. She is likely to continue to struggle with oral feeding for years to come and currently (at 7 months) takes all nutrition through a g-tube. She will also have diminished lung function/greater susceptibility to respiratory illness for a very long time, possibly forever. My first daughter is completely healthy.
Whenever anybody asked me what we wanted when we were pregnant, I always deadpanned “a baby”. I still like this answer, especially after the awkward, “aren’t you excited” conversations with acquaintances after a diagnoses that included a 60% mortality rate. I totally agree with you that the “as long as its healthy” platitude is said by people who have never had the honor of experiencing or witnessing a different, equally enriching type of parenting or pregnancy.
I think I understand what you’re trying to get at when pointing out other places where people mention that they are grateful for health in their families. That said, experiencing lack of health has made me even more desirous of expressing gratitude for whatever we have and I’m trying to pass that on to the girls. An aunt who we thought was in breast cancer remission just found that it has metastasized to her brain. Expressing gratitude for every moment of health, every small victory and reminding others to take a minute to do the same seems wonderful.
I hope that a sick child could be brought up to hear gratitude as a positive thing in any context, partially by constantly hearing their family members express it. I am grateful for our experience with Clarity. We have met amazing people and seen acts of incredible strength and kindness that we would not have witnessed otherwise. My daughter’s presence is made more precious by the fight she had to give to be here. I try to have “Aren’t we lucky that…” be a frequent sentiment in my toddler’s life. If Clarity still has a feeding tube in coming years, I hope that if she hears someone be grateful for health, she’ll be grateful with them and also think to herself, “and I’m grateful I’m just like I am because I don’t have to taste yucky medicines when I need to take them”. :)
I honestly never thought about it until a longtime friend had a daughter who is special needs Now it would seem an odd statement. Because they very obviously and without a doubt love and cherish their daughter despite being anything but “healthy”. Regardless, parents of these “snowflakes” are the most amazing people I ever have known. I can’t fathom it. I just can’t. My husband and I haven’t been blessed yet with a baby and as we grow older (advanced maternal age…ha!) with all the risks-I worry but it isn’t as much anymore. I don’t know, maybe it is the age and perspective. Witnessing what my friend has gone through has really made me aware, no, it’s not first hand. But I see it. Regardless the anomaly, the challenge, the “handicap”, whatever you call it, living day to day and know that each day is a gift is amazing.
Thank you for this post! I am pregnant with my first and am hearing the sex question all the time. My husband’s go-to response has been the cliche, but I have considered your ideas before. Even if this child is not healthy, that is okay too. I teach and my 7th graders asked me just yesterday, “What will you do if you child comes out with 6 fingers or crippled or mentally retartded?” My response was simple, “We’ll deal with that.” That seemed to blow their minds, like they expected me to be disappointed or withdrawn from my own child because of a difference in that child. When I’ve answered the “What do you want?” question so far, I’ve simply said, “It doesn’t matter,” but now I am going to add your “as long as it’s here” to the end of it.
Thanks again!
I remember the first time someone said this to me after my son was born with spina bifida. I was shocked by how much pain it brought me. I knew full well that this person was not at all thinking of or referencing my son and I also remember thinking “Why am I feeling hurt? OF COURSE she wants a healthy baby.” Still, there was a place in my heart that thought “My baby is perfect and wonderful too– even if he isn’t healthy. Isn’t he worth being wanted?” In my head what I heard was “I don’t care if it’s a boy or a girl– I just don’t want it to have spina bifida.” It felt very personal– even if it wasn’t meant to be. Thinking of how comments like this will affect my son and how he views himself in the future concern me. Sometimes I think our innocent comments can reveal the deep-seated bias our society has for those who are able-bodied.
I think intentions are more important than words (and I have yet to meet someone who does not have good intentions when saying as-long-as-it’s-healthy) but it’s still helpful to think about what our words imply. (I feel the same way when people tell me it “takes a special person” to raise a child like mine. I wrote about that here: http://beth2285.wordpress.com/2013/06/28/it-takes-a-special-person-guest-post-by-mary-evelyn-smith/)
Thank you for writing about this.
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I guess I have a different idea of healthy. I have a 14 year old with autism, an 8 year old with ODD and bipolar disorder, and a 7 and 2 year old. I also have a 4 year old in heaven who passed away minutes after birth due to a fatal birth defect called anencephaly. I consider all my living children healthy. When I say I hope it’s healthy what I am saying is I hope when you walk out of the hospital with a living baby in your arms, not one you left in the morgue for the funeral home to pick up.
A friend had a similar experience. She lost her first son due to sepsis from an infection he contracted at birth and left the hospital two days later without her son. As with most conversation, this seems to be all about context. There is a place for talking about wanting children with various medical issues (and I do understand the gravity, having froend with children with all sorts of experiences), but man, I will never fault my friend for saying she wants a healthy child. As with most things, we have to translate our world for our kids, reinterpret what they’re hearing so they start to understand nuance. I understand how this would be heartbreaking to a parent of a child with special needs, but can we not publicly thank God for our blessings? Health being one of them.
I agree. I think you have to know someone’s story a bit and the context of their situation. When I say, “As long as its healthy”, what I’m really meaning, is I hope my baby is born alive and I get to take him/her home from the hospital. As a stillbirth mama, that’s my main hope for the rainbow baby growing inside of me.
I’m going to be the contrarian here. I have never understood the “as long as it’s healthy” to have anything to do with the idea that somehow we will reject the child or dismiss it as inferior or deficient if it is not healthy. It is merely a response of unconditional love regardless of the child’s sex. I am not diminishing your feelings, and I admit yours is a new perspective for me, but for some people a baby of the “wrong” sex is not to be desired or preferred, and this response it only intended to remove the focus from the sex of the baby and reinforce the unconditional love the parents have for their child. The sex doesn’t matter, and neither will any physical, mental or future social infirmity either.
I think Lloyd is exactly right. People are just saying it doesn’t matter what the sex of the baby is.
I understand how you feel. But when people asked me I always said as long as it’s healthy.
But truth be told I didn’t care healthy or not I’d just say that to people because I didn’t want to say my worst fear as long as there delivered alive if you understand what I mean. I couldn’t care less if my kids aren’t perfect because there mine I’m going to be looking after them no one else.
We also said we didn’t care if we had a boy or a girl but we were hoping for healthy. That is all you can really do, hope. With my second we watched as every ultrasound showed an enlarged kidney. At 4 months of age he had surgery to disconnect the tube running from his kidney to his bladder and placed it so the kidney drains directly through a hole in his belly. Every diaper change is a challenge, he leaks through onto his clothes several times a day. He’s on a daily antibiotic. There will be another surgery when he’s 18 months. Is he healthy? Not exactly. Would I give him up for all the world? NEVER! I do wish he was ‘healthy’ every day. I stick with the thought I don’t care about gender but I always hope for healthy.
During our pregnancy we also were of the group that just wanted a healthy baby. And each time I said that, my heart twisted just a little imagining the sweet one inside me having to suffer. We said it out of love and protection.
My baby is healthy…kind of. She is chunky and developing well and delightful. But she has a rare bleeding disorder. She is covered in bruises as a 7 mo old, from playing with her toys and her own hands. We don’t know if one day, she’ll hemorrhage internally from a normal childhood fall. And watching her go through blood draws and contemplating the future brings that same ache to my heart as when I wished for a healthy baby.
Sometimes, we say those words out of a fierce love and a desire to protect that little one at all costs. And we know, at the same time, how helpless we are.
Well said. I would give anything to have my two babies who are not with me on Earth here to love. I lost my daughter to stillbirth in 2007 and my son to miscarriage in 2009. And it might be shocking to some that on my worst days, I wonder why I was so undeserving of a special child that she died prior to birth. On my best days I think perhaps she would have suffered too much on this Earth. But on every.single.day I wish she was here for me to love and I miss her so much and her brother as well. (And I even have EIGHT living kids!)
I always tell a momma I am praying for a living, breathing baby for them. Those of us that had our children die would love to have any living child.
And hugs to you momma! You are doing amazing work here!
I totally understand wanting to protect your child from hearing things that can make them analyze something like that, we hear it all the time with food allergies – my son has 3 MAJOR ones. They’re so far reaching, that he can’t use hand soap at the store, he can’t eat anything made by someone else if they’re not taught to cook for him, it affects every aspect of our life. But, because allergies are much more commonplace these days, and its not an appearance altering health issue or something that is terminal, people feel they can make comments in front of my son like, “I’m so glad our kids don’t have food allergies, I could never handle that.” and I fear that my son is hearing that he’s a burden. I always counter with a positive, how its made us healthier because we can’t eat fast food anymore, how its made us sit down as a family for dinner every night because I ALWAYS cook. But, it really upsets me because I know they wouldn’t say that in front of my child if it were something that seemed more serious to them.
I loved this post. You said exactly what I have said before, only more eloquently and tactfully than I managed to do. (My post on the subject is here, if you’d care to look. http://cradlerockingmama.com/a-healthy-baby/)
My children don’t have the health concerns some of your children do, but their food allergies are severe, rare, and life threatening and every single day our lives are completely altered by the changes and concessions we must make because of the food dangers and limitations. It’s relentless, and isolating. Being slapped in the face with a well-meaning “as long as it’s healthy” stings my heart…are my boys worth less because, strictly speaking, they aren’t?
And I know that isn’t the intention, consciously speaking. But your point of the abortion rate for Down’s children proves, to me, that when pushed into that corner…people would make decisions that would reveal less than gracious thoughts about these unhealthy children. That’s just sad and heartbreaking.
Thank you for sharing these thoughts! It’s nice to know I’m not the only person who feels a little sting at this comment, and worries what my children will feel when they’re old enough to understand.
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I have a son that is Autistic and I’ve never thought of him as not healthy. Once we got past the ear infections when he was a toddler , he’s probably been the “healthiest” of the three kids. We have been blessed that he is at the higher functioning end of the Spectrum, but I’ve never really thought of him as “mentally” unhealthy either. That’s not to say that I wouldn’t take the opportunity to wave a magic wand and take away his Autism, I’d feel like a horrid Mom if I din’t take advantage of that opportunity. But since that is never going to happen, I prefer to look at all the positives of his Autism.
Than again I have been accused of having a Pollyannish outlook on life.
I just don’t see saying “as long as it’s healthy” as a slam against those children that have been born with disadvantages. Every one hopes for a baby that is healthy. Thats just human nature. It doesn’t mean that we love the children that aren’t born “healthy” any less.
How about “My greatest hope for this baby is the gift of health”?
I wanted to give you my spin on that phrase. I had 3 pregnancies that all ended in healthy babies. Then in just a matter of 15 months I lost 3 babies…14 weeks, 8 weeks and 16 weeks. This was incredibly difficult. Then we found ourselves pregnant again and I knew I didn’t want to find out the sex because all that mattered was that it would be born alive (healthy). Well, there were 2 heartbeats and I still didn’t want to know. It drove everyone crazy that we were having twins and didn’t know the sex. I delivered 2 beautiful baby girls. Then we found out we were pregnant again and I didn’t want to know the sex….just as long as it survived. I now have baby #6 who is a boy. So, to me, “just as long as it’s healthy” really only meant that I could hold a living baby at the end of this pregnancy. Just my 2 cents. :) Enjoyed your story. Thanks for sharing.
I appreciate this post so much! Thank you for writing it. This same repeated comment has bothered me for years as well. Both of my parents had cerebral palsy. They were amazing people! I’ve written several essays about their story and my childhood on my blog. One recent one about my dad is at: http://thisoddhouse.org/2013/11/26/on-dad-and-dating/
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I’ve read your whole article and think you make some great points. Of course I have to share my own story and struggles. Our third baby was diagnosed with anencephaly when I was 20 wks pregnant. We knew he wasn’t going to make it and we might not even get the chance to hold him alive. That’s exactly how it went. He passed away at 30 wks and was thus stilborn. He isn’t here. We still love him and cherish is existence, but he’s not here. Honestly… I would do it all over again. I loved being pregnant with him and I believe he had a special purpose in our lives. As crazy as it sounds, I wouldn’t have it any other way. I don’t care what it is… because I know it’s a blessing from God.
You can read our story here:
http://www.blurb.com/b/2621131-willow-s-story
People say dumb things… (you don’t know how many times I got asked if I was getting an abortion) but most of the time… they say it out of love and concern.
While reading this, the radio was playing the song Glad You Came: “my universe will never be the same, I’m glad you came”
Great article! I can think of so many close friends who are on your side. I’ve seen so many “un-healthy” babies born in the worldly sense, that are LOVED so stinking much my their families and bring so much joy into the world! When my time comes I will say “Whatever is God’s will”.
No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he’ll never let you be pushed past your limit; he’ll always be there to help you come through it. – 1 Corinthians 10:13 (MSG)
THANK YOU from the bottom of my heart for sharing this. As a proud Mom of a special needs child I had lots of tears coming down as I read this piece (and that is not a bad thing). It was as f you took the words right out of my heart. I appreciate your honesty. While our family would never change our situation for anything, we still have sad days. Not easy to watch our son struggle or worry about what his future. He is our blessing and we have gotten so much more than we could ever imagine with the way things are. Thanks you so much for sharing
Thank you for your beautifully written article. I have always cringed too, but couldn’t express why quite as you have done. I have even said the words when I couldn’t think of anything else to say.
But my first husband had Cystic Fibrosis, and he always said that quality of life is not the same as quality of health. Life is worth living, even if it isn’t what the world thinks is perfect.
I love this! I was once very guilty of this saying, and many prayers for a “healthy” child. Then I had my middle son. Opened my eyes to a whole new world. Now I am very saddened how “the world” don’t see the true beauty in everyone. Thanks for sharing your story :)
Let me preface this by saying that we don’t have any living children. This has been a long hard journey for us. I’m currently in the first trimester of my 7th pregnancy. What I say when I rub my belly is “As long as it’s living.” Sure, I’ve love healthy – I think any parent would – but more than that, I want to HOLD this child and get a chance to kiss it’s hands, feet, face. We can deal with the rest as long as we get a living child.
I’ll say too that the statement (not made by the author, but made by a responder) of “God doesn’t give us anything we can’t handle” is patently untrue. I have a deep faith, and this journey through loss, frustration, tears, brokenness, has brought me closer to Him. He’s given me much more than I can handle and I’ve crumbled and broken so many times on this journey – I don’t have the strength on my own. HE gives me the strength I need. HE picks me up and puts me back together. HE gives me the hope that I need to carry on, try again, fight again. I trust in Him that no matter what this pregnancy has in store for us, He will carry us whenever needed and He will provide.
Amen. We must really examine the casual platitudes we say in society. I appreciate so much what you’ve said about what God gives us and have been drawn closer to Him because some things in life were beyond me. Our strength only extends so far and when we reach the end of our ‘rope’, where else will we turn but to the Lord?
My sentiments exactly. Beautifully said.
Wow! This is deep. Thank you for sharing… I’ll definitely be saying something different in the future perhaps… What ever God has for us… works better.
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This really hits home with me. We were expecting last fall and all of my husband’s family kept saying how much they hoped for a boy for us. Everyone asked, “so are you wanting a boy?” assuming that since we already have two girls that must have been our only reason for having a third child….. We lost our baby at 11 wks. Neither of us cared whether it was a boy or a girl. We just wanted to have our baby and to share our love for each other with another child in our family. Ideally we’d love to have a healthy baby, but just seeing our baby and holding him or her would be better than nothing at all.
You thought this might rub some people the wrong way. I might rub you right back.
There’s always a different perspective. People don’t generally mean to offend. And yet we live in this society where everyone is so easily offended. We aren’t teaching our kids that it doesn’t matter what people say, especially when we make a big deal and read into or relabel what they are saying. We need to teach our kids that what God thinks about them is the only thing that matters.
I speak from experience on two levels. Let me offer my perspective…
I am the younger “healthy” sibling of the unhealthy older sibling that almost died at birth. I wouldn’t wish my brother away for anything. And when my mom had me, after all she’d been through with my brother, she didn’t care if I was a boy or girl, just prayed that I would be healthy… that God would spare me and her what had transpired 2 1/2 years before. Is that wrong?
But all I heard growing up was that he was the miracle. There were no great stories about how my life had been spared on several occasions, or how I could do things that defied the doctors predictions. I didn’t hear how God must have had some great purpose and plan for my life, like I had heard concerning my brother. I didn’t grow up feeling special – I was JUST the healthy baby girl that came after the miracle baby. But you know what? I had to learn that that didn’t mean I was any less loved or important. I had to learn (and am still learning) that what mattered was that I learned the truth, and let go of what I INTERPRETED the things people said to mean.
On the other level I was speaking of, I was a bigger girl than most of the kids around me. And when people would say I was a “big girl” they generally weren’t saying they thought I was fat, but in my mom’s effort to keep me from feeling like the fat kid, she would tell them, “Please say ‘tall.'” Her efforts backfired because she was making such a big deal about it. I started to believe that she was shielding me from the truth… was I really a big fat kid?
So all this to say, I think you might be taking something personally that you shouldn’t be, and to instead teach your daughter not to take it personally. Focus on the truth of God’s love and purpose for her and instill that in her heart, because that is what is going to tune out the voice of the world. Teach her how to have a thick skin but a tender spirit. I don’t know how severe your daughter’s condition is, but if your daughter ever hears you tell someone the things you wrote above, it just may be YOU that is injuring her and making her heart fragile when it doesn’t have to be. She’s learning from you how to respond to the lot she’s been given in life and the world around her. And from what you wrote above, it seems to me, you may end up teaching her to compare and be offended instead of to just be grateful and see God in the tapestry of her life.
May God will lead you in His Spirit concerning your daughter.
Oh wow. What a great post. Thank you for being so eloquent in sharing your perspective- one that I don’t think I would even have considered before reading this! Thank you, thank you!
As I was reading, I thought of something I heard somewhere (how’s that for vague, huh?) that’s stuck with me (but apparently not enough to remember the context!). It was a dramatic reading or something personifying God. A mother asked, “God, why did you make my child this way? I love him so much. I just wish his body was whole! I want him to be free!” God responded, “His soul- his soul is perfect, whole, and free.”
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I really like the way you put this. I’ve been guilty of that phrase this pregnancy especially since we lost our son at 20 weeks last time. Just because I say as long as the baby is healthy doesn’t mean I didn’t love my son more than anything in the world. I think all children disabled or not are beautiful and perfect.
Having a broud spectrum of learning disabilities, I can definetly understand this.
Thank you for sharing. I recently read a similar article/blog post where the author focused mostly on how the “as long as it’s healthy” message affects the parents/family of a child born with extra physical/mental/emotional challenges. I appreciate that you went further to include how children themselves may feel, as well as pointing out: “…if maybe subconsciously we ARE saying these things?”
The issue of what we subconsciously believe brought to mind an example that seems to support that theory. I have a friend who worked 35+ years as the Section Chief of the Special Education Division in his state’s Department of Public Instruction. He and his wife also have (in addition to 2 biological children) an adopted son with special needs: a teenager (at the time of his adoption) who had spent the majority of his life “in the system” and without a family. I’ve heard my friend tell of the time one of his friends called to tell him that the day (or 2) before, his wife had given birth to their son—who had ________________ (Down’s syndrome??? Sorry—I don’t remember the diagnosis. Also, this apparently happened prior today’s common practice of in utero diagnosis).
My friend’s response of “Congratulations!” was met with silence… and then tears. The new father said that of all the many calls to family and friends he had made over the past day or so, NO-ONE—when they learned of the baby’s “condition”—had congratulated him and his wife on the birth of their first child. Because of that reaction from friends and family—as well as, to a degree, his own grief—the father had not allowed himself to experience the joy of a new life and becoming a dad. He was immeasurably grateful to the friend who congratulated him… and gave him “permission” to also feel and express his happiness.
I first heard my friend tell that story more than 15 years ago and I still tear up when I think of it. My husband and I do not have children (I’m in my late 40’s–not gonna happen!), so I have never used the “as long as it’s healthy” phrase. Perhaps I/we would have–I don’t know. But, I agree that we, as a society, may have conditioned ourselves to unintentionally reprioritize the value of life itself—regardless of “condition.”
I posted a reply to a reply earlier in this discussion. On re-reading it, it sounds like a terrible mish-mash. I hope this rewrite is somewhat better:-
Perhaps the problem is as much with the question as the response.
I found that giving a different response, was generally followed up with a comment from the asker like “Yeah, so long as it’s healthy, hey?”
So I may have used this response, just because I got tired of agreeing to the obvious, and/or it seemed to be what people expected [a bit like replying “Good”, when asked “How are you?”].
I don’t think I was ever really comfortable with the concept that perhaps “boy” “girl” and “healthy” were somehow on the same playing field.
Is the actual question “Would you prefer a boy, or a girl?” any better in front of any child, than the “so long as …” response? [not to mention an answer along the lines of “I am desperate for a girl” or “My husband really wants a boy”?].
It doesn’t take much for a child to work out (or believe) that they ‘should have been’ a different gender. (Words can get so difficult.)
Mostly it just means “I wish health for my child”. [Sadly, sometimes it really does mean “I wouldn’t want an unhealthy child”].
I think it should not be too hard to help a child understand that a wish for health, is not a rejection of a child in less than perfect health. (?)
Lots of things hurt. We can’t eliminate everything that elicits a hurt response because of problems in our individual lives. It broke my heart to see a range of infant Tshirts, imaged with XY and XX chromosomes to indicate “boy” or “girl”. Such a little, random, irregularity with that X chromosome, such consequences! such unfairness! (& less rationally, the thought: “please don’t boast your child’s perfect chromosomes!’). We can certainly try to think about what we say, and care about other people.
I agree this problem is along similar lines as “You are such a hero”, or “Special children are only sent to special parents”, or “I couldn’t do it” (& you have to allow for intent*). It is worth mentioning, discussing and thinking about [e.g. “I couldn’t do it”: do you maybe mean “I don’t think a child like yours is worth the effort”?].
I would say this is a discussion for people who are interested in being sensitive. [The greatest concern being it’s effect on children, trying to find their place? Surely most adults & older children (who understand the words) understand the wish for health? in spite of getting tired of hearing it.]
Jeanette, I am also asking for a discussion about this quote: “No-one has the right to not be offended”. I am not disagreeing with your post, but the question of degree is part of what connects both topics (yours and the one I am about to insert). The statement was written in response to a post my daughter wrote about the “R” word. At first the statement [and the number of vehement responses about the right to use to use this word] took me aback; actually took me a bit to analyse. It is interesting, because there is some truth in the statement (reference perhaps my offence at the Tshirts), but if one 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? 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”. I want to be able to say it clearly; and distinctly from what you have just written about; to rebuff the statement at the beginning of this paragraph, in relation to this word, without it falling back to “but you don’t want us to be allowed to say anything you don’t like.”
………..
*On a vaguely related note (to allowing for intent, & discussion) – for those who care – I love it when people comment about how (physically) beautiful my developmentally impaired grandson is. I hate it when they go on about it [most do] – what if he wasn’t? Yes, we know he has long eyelashes and beautiful eyes. Please don’t say it more than once! [Do continue to understand how excited we are when at three he laughed (and threw his first temper tantrum!), and at six, we believe he chooses a shirt to indicate what he wants to do.]
I remember a TV drama called “Life Goes On.” One of the children, Corky (a boy), had Down Syndrome. In one episode, the mom was pregnant again and apparently had prenatal testing done. She was waiting for the telephone to ring to hear the results of whether the baby had Down Syndrome or not. It rang, she answered the call and gave a big sigh of relief. I think she said something like, “Thank God.” Corky was in the background and you could see his expression and knew what he must have felt when he heard his mother’s words…
I’m not one to usually post on something like this and my story doesn’t compare to many of these shared but for some reason I feel compelled to post something. I understand what is being said here… with little ones that take things literal but at the sametime am one guilty of using the the phrase “doesn’t matter so long as their healthy” and the intent was of gratitude.
We struggled getting pregnant with our first, so when we finally conceived it really didn’t matter if it was a boy or girl but just that we were grateful to be pregnant.
Our second was a miss carriage at 11wks, we hadn’t even had our first dr appointment… This happened on a Sunday and I was to go in on a Wednesday. It was a hard thing as it for anyone who has has a lose. I remember going in to have the ultra sound and there lye a lifeless little bean and no sound of a heart beat. The following day I was to go back in to make sure my hcg levels were going down and to see if a dnc needed to be preformed. Again rembering back I was at work when i bleed out (graffic and gross, but my real feelings). I didn’t care if it was a boy or girl but I sobbed as I set in the tolliet and bleed out and then I flushed and cried even harder because the only thought I had go through my mind was “I just flushed my baby down the tolliet, I just flushed my little girl down the tolliet” (had no idea what we were having but felt like it was my little girl)
As I spoke with the nurse about what had just happened I then explained what a horrible mom I am… I was one of those moms that delivers her baby and tries to flush it because she didn’t want (obviously not the case but the thoughts and feelings that ran through my mind). I wanted that baby and I flushed it way… Not that there was much else to do.
My third when asked “boy or girl”
You better believe “so long as it’s healthy came into play” I was told whatever you’ve got to have a preference (this came from my hubby and others). And I would respond with really u don’t care after struggling to get pregnant and miss caring one you don’t care “so long as they’re healthy” or in other words “so long as they’re alive”, “so long as I don’t gave to go through a miss carriage again” or heaven forbid something worse like the still born my grandma had.
These words “so long as they are health has a different meaning to everyone and if I had a child struggling with this phrase I would simply explain it to them as… They just want there baby to be hear to meet just like I couldn’t imagine not having you here they can’t imagine not having their baby not getting here.
I think it’s taken a little out of context here. When people say “As long as it’s healthy” they’re referring to gender preference, for their child overall. Of course you hope and pray for a healthy child, nobody wants their child to face hardships like that, and I believe that’s really what this saying means. “We don’t care about gender, it’s more important to us to hope our baby is healthy.” Not to say an unhealthy baby wouldn’t be just as loved, but again- of course people don’t HOPE for health hardships for their kids.
I have enjoyed reading these posts and can feel the passion of love parents have for their children through the words expressed here, regardless of each persons view point. Just some thoughts I have while reading: first, I would guess for those that are contemplating or requesting the usage of “as long as it’s healthy” to be reconsidered in conversations, you most likely would also encourage people to NEVER respond truthfully with…. Oh, we are hoping for a girl…. Or we are hoping for a boy. What would this do to the opposite gender of the “preferred” sex? My take is this: I love the “chance” involved in the sex determination of a growing family. My grandparents had 6 girls and no boys…. I always laughed and often said…. I wonder how many it would have taken to get a boy! It’s fun to help my friends “root” for the sex of there choice and I was never one to hide what I had my fingers crossed for because really, does anyone ever go…. Oh, I wanted a girl…. Send this boy back? When this baby comes into the world it is love at first sight and you cannot imagine it being anything other than what it is. I don’t think people who were helping cheer for your preference start whispering…. Ohhh no! That’s not what they wanted, on the news of baby’s arrival. You’re only pregnant for a season of your life….time goes by so fast….so I say make the most of it. Enjoy the unknown…. Boy, girl ; hair/ no hair; 10 pounder or 7 pounder? You get it. It’s YOUR time, savor the experience and make the most it. I always shared what I was hoping for…. And depending on the day…. It might be different than the previous! But I also had 4 miscarriages during my full term pregnancies and in the end of course my prayers were to have a bundle of joy in my arms that I could love and raise and who would join my family with it’s unique personality. Secondly, to me, “healthy” is much like the word “normal”. What is normal, what is healthy? Children experience healthy/not healthy in lots of different forms. We see people go through sickness of colds,flues, sore throats , elderly people go downhill and even diagnosis on other scales and we have time of good health/bad health. So, I’m thinking children may hear -we want a healthy one and they would agree! We want healthy parents, we want our school friends to be healthy when they are sick and haven’t been to school and we want our grandparents ro feel better when they are sick. I think we as a society can encourage unhealthy sensitivity to others when there is no I’ll intent. No one wishes for complications with a pregnancy and no one can prepare you for the ride that goes along with a baby born with serious complications. But you take it day by day, together with those you love and you get through it with hurdles and breakthroughs . It’s called life and we can’t protect little ears from experiencing the difficulties that are in the cards. Now , I also think we do have to be sensitive to a child sitting right in the presence of a conversation about healthy/unhealthy but aren’t we sensitive to our discussions around all children? What about overweight children hearing about health, diet and exercise all the time and even the name calling? It happens….ouch! But you embrace your child and get them through it and in the end the message is sent that in this big world there are ups and downs and when you need a safe place to go, a place to be accepted or someone to love you and accept you, your family is that place, that person ect…. Forever and ever. What a great lesson!
As an adult born, and still coping everyday, with Spina Bifida I can tell you this post rocks. There is so much truth in what you’ve shared. When I was born there was no test for SB. There is now, of course, and I’ve often wondered how many SB babies are aborted. That’s what such tests are for in my opinion. To give the parents the option. And what you said about kids taking things liberally and not knowing how to unpack things properly I can speak to as well. When I was 3 years old my dad did something that was perfectly innocent, but I didn’t know how to interpret it and the way I did has framed everything in my life in an upside down fashion. I go to counseling on a weekly basis trying to deal with the fall out from one little innocuous thing he did. Something that if he could understand it’s impact and go back in time he’d never have done in a million years.
This is such a thoughtful post, and I loved how you shared your thoughts so kindly. I was just pregnant for a hot minute and I probably said that exact phrase at some point (hopefully not in front of any children). At 13 weeks I had a miscarriage, and we later found out the baby had Trisomy 18, and that was why it had died. In doing my google research I found out that some babes with Trisomy 18 can go full term and die shortly after birth or even live up to a year with a plethora of medical issues. And I thought to myself “it could have been so much worse” having to carry a baby full term only to watch it die. But then I thought, “at least I would have been able to meet her/him and know it’s little face”. And I know and trust that God knows His plan for us and for our children–His children–but it was such a reminder that any child is a gift from God and that being healthy isn’t an end all, be all. It’s great and all, but being loving and loved is where it’s at.
Thank you so much for your thoughts on this. I have a 9 year old girl with spina bifida and there is not a day that goes by that she tells me she wished she could walk like everyone else. When we adopted her we knew that the hardest part would be that day when she realized that she would never walk like everyone else. Our church is full of pregnant ladies and babies being born. And this statement that you talked about is said OFTEN in front of me and my daughter. I feel very uneasy and guilty for the way I feel whenever I hear that statement. I didn’t know what to say or to think about my feelings. Your article has been good medicine for my soul. “As long as he or she is here” is incredibly spot on. Thank you so much for your words.
Thank you so much for this. 5 months ago, my daughter was born with a severe, congenital heart defect (she also has Down syndrome). We have spent a high percentage of her life’s weeks in the hospital, once for open heart surgery. My thinking is constantly shifting as I am being humbled and changed by this experience. My daughter is a beautiful, precious gift, and I am so grateful for people like you to go before me and help me parent her better by thinking through issues like this. Thank you!