Why it matters when we rub our bellies and say “so long as it’s healthy”.

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.

so long as its healthy

 

“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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jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett

Comments

  1. 137
    Renee-Ann says:

    My first pregnancy went without a hitch, no morning sickness, not even weight gain until in my 5th month. Strong healthy baby boy, born 17 days late – they had to induce me. So when I became pregnant the second time, I had no idea what to expect. But when I spotted at 4 -1/2 months! , I knew something was wrong. He came 2 weeks early and it took them some time for them to put him in my arms. I asked the doctor is all was alright but he replied something I didn’t understand – he had a thick accent plus English is my second language so I had no idea what it meant. I asked “What does that mean”. He has a little hole in his mouth, he said, but it can be fixed. My son had bilateral cleft lip (one complete cleft and the other side partial) and the palate cleft from front to back. When they put him in my arms, I saw way beyond the clefts. He was my baby boy whom I loved with all my heart and it was as though the clefts weren’t even there. We had no idea what lay ahead:
    - the ‘every two hours feeding” routine because he swallowed so much air, he regurgitated most of what he drank. I had to feed him less but more often;
    - his surgeries (13 by the time he was in his teens),
    - the infections, Cleft palate babies are more prone to ear infections and he required tubes in his ears on several occasions.
    If I had to do it all over again, would I? In a heartbeat. I’m guilty of using the expression As long as he/she’s healthy, but I’ve loved that boy just as much as the other. And today, at 32, he has a child of his own, but he’ll always be my baby! :)
    Renee-Ann´s last blog post ..Small Blessings – Things That Make Me Smile

  2. 138

    Thank you, Jeannett, for this post. It really does matter. Words have power. We should be careful how we use them.
    I direct an organization called Women of Hope International. We work exclusively with women affected by disability in West Africa. While the stigmas here might be significant, they pale compared to what people face in the developing world. The power of learning that they have value and were made by God, in His image, for a good purpose, is transforming these women’s lives so that they become someone completely different! It’s incredible! We love story too! You can read some on our blog, which you can get to from our website – http://www.WomenofHopeInternational.org.

    Thank you for calling everyone out! It is important!

  3. 139

    Great story! Definitely one that others need to hear! I have a nephew with autism, another nephew with Down Syndrome, and one of my own children has Type 1 Diabetes (the autoimmune disorder, this is different from Type 2, which is what most people have). I wouldn’t trade my daughter with Type 1 for anything! She is just as much a joy to me as all of my other children. And my nephews are precious and adorable as well.
    Another way people need to be careful is by “going on” about it once they find out. I can’t tell you how many, “Oh, I’m sorry. My so and so had Type 1 and died at 35″ or, “my so and so had Type 1 and lost both her legs” – in FRONT of my child WITH Type 1!
    Thanks for a making a well- needed point!

  4. 140

    Just because a child has a disability does not mean that they are unhealthy. I have a brother that is disabled and I am a teacher of children with developmental disabilities. An unhealthy child is born ill at birth, some do not live much past that. A child (or any person) can have epilepsy or any other of a host of disabilities and be healthy. As a mother, I know that I am happy that my children do not have a disability, having grown up with it in our family and seeing it every day at school, but it would not mean they were valued or loved any less by family and friends if they did. We all have the hopes that our children are healthy, happy, and do well in their lives. Some of our dreams come true for our children and some do not. Many parents of children with disabilities go through the grieving process when they realize that some of the dreams they have for their children will never come true, but that is to be expected.

  5. 141
    Shirley from VA says:

    Thank you for this !! I can vividly remember as a 12 -14 year old riding in a car with my very pregnant cousin when she said the same thing. At that age I was becoming very well aware of my possible limited life span as well as my own disability. When she said that I all but panicked. I asked her ” and if it isn’t ?” Her response was “oh but it will be” She never answered my question( and I kept pushing for one) and I was left to wonder ” so thats how she feels about me?” At the same time I was aware of my mother’s chronic illness that if it worsened might lead to her hospilization and possible death which would lead to my being placed in foster care. so I immediately connected the two. If she felt that way then where would I go ? If I couldnt trust my own relatives to take me in then who would? If my cousin’s comment had only been hers I would not have thought a second time. But I had heard it over and over and each time I heard the message ” WE DON”T WANT YOU _ YOU AREN”T PERFECT” and it stung. It left me with an ongoing insecurity complex because after all as you said – if a woman couldnt even bear the thought of having an imperfect child then why should I believe that they would want me as a friend or coworker? I hope that your post will make people aware that those comments can and do hurt. Ironically when my cousin’s child was born she had cerebral palsy – I never dared bring up the conversation after that ! But you know the comment of “as long as its healthy wasn’t said much after that among the relatives !”

  6. 142
    Dawn Johnson says:

    I found this post when a friend of mine shared it on Facebook. As the mother of a medically fragile little boy with both CP and ‘marathon’ seizures, on top of a host of other issues, I so connected with this! It was very personal to me and I shed a tear…(ok maybe a few). My son is adopted and I would give my life or limb for him to be healthy, however, in my eyes he is perfect. When I was bringing him home on the airplane I actually had a flight attendant ask me if his bio mom knew he would turn out like this! I said “pardon me” and she very nonchalantly said well she could have chosen different options. I was speechless! As if to say his life is not worth it because in HER eyes he is not perfect. I was very hurt by that for the longest time and then I realized she will never be as Blessed as I am knowing this or any other special child! They are very much worth every sleepless night, every life flight, every appointment, surgery, hospitalization, every single worry and hope. The truth of the matter is that they are more worth it then half of the adults out there that are so close minded. Thank you for speaking from the bottom of MY heart! God Bless you

  7. 143
    Shari Gentry Cate says:

    This is a great post and has certainly generated deeply felt commentary.
    I am a special education teacher and am dedicated to equal opportunities for all- especially those with disabilities. I am also deeply rooted in my faith and just as a word of encouragement, Jesus said in John 9 that disabilities “happen so that the works of God might be displayed”

  8. 144

    I read this, and honestly didn’t give it TOO much thought. As someone who chooses not to have children, it’s not something I have to deal with, and I can see both sides of the issue. But, it did give me pause when I saw a commercial on TV yesterday. I don’t remember what it was for, but those exact words came out of the parents’ mouths, “I don’t care if it’s a boy or girl, as long as it’s healthy.” If I had a child, would I say that same thing? Yes. But not out of a heart that believes that being healthy is the only option. It would be out of a heart that, as a parent, we only want what’s best for our children. Jeanette even says that, given the option, she would prefer her daughter did not have these issues. But, would she trade these issues for her daughter? Of course not, many times over. And I’m grateful for that, because I love reading the stories of this little family.
    Dawn´s last blog post ..Going,going, gone….

  9. 145

    meh…reading into what people say. If she truly knows what people mean by saying this, then she shouldn’t feel the need to write a blog about it. Why is it that everyone feels the need to complain and feel hurt by everything. Get a thick skin and move on…..

    • 146

      Thank you. I’m thinking the same thing. Some are so offended by what others say. I think everyone is entitled to their opinion. If I don’t agree, ok.

  10. 147

    such an interesting take on this phrase. i had never thought of it that way. i too have a daughter with CP and have lost one too soon and she is in heaven now. i totally can understand what you are saying and while probably all moms aren’t taking it literal, it sure makes me wonder about how my daughter would hear that?! especially since she is now asking why she can’t be in ballet and that she wants to be like other kids… sigh. i can’t wait until heaven :) thank you for sharing your thoughts.
    Trish´s last blog post ..Crochet

  11. 148

    Thank you for teaching us what to better say. I say that usual phrase, but then I don’t know better and never thought about who might be offended by that phrase. When you’re taught better, you do better. I will say “as long as she’s/he’s here”. That sounds like I’m woman and mother enough to accept any challenges that may certainly come our way.

  12. 149

    The bottom line is we really DO want healthy babies and children. It hurts US when our children can’t do X because of a limitation, especially if they want to do it. No one wants their child born with a birth defect or extra challenges. You would never ever pray for your child to have cerebral palsy, seizures, cancer, birth defects, etc. It makes sense to pray for the opposite. Now what happens is that we as parents deal with whatever came our way. For me that was a month long hospital stay in the NICU with our first. With our second it meant two surgeries and endless hours at therapy (beginning at 2 with no end in sight 7 years later.) I certainly DID pray for a healthy baby the third time (and at the time, we had no idea about our second other than he was delayed.) I honestly did NOT enjoy my last pregnancy at all. Some of which was because what I had gone through/was going through with her siblings. The fear of something even more difficult for HER played in my mind. What if she died? What more could I endure? Then she was born healthy and without any challenges. I was so relieved.

    BTW, there are people that are disappointed by gender. I know that may be hard for you to grasp, but it does happen.

  13. 150

    Just came over from Revive our Hearts. I have to say that this post really opened my eyes to something I never thought of. Thank you so much for writing this. I will be much more aware in the future. With sincerity, Beth

  14. 151
    Amy Smith says:

    I almost wrote a blog JUST LIKE THIS a few weeks ago. A very dear friend of mine–someone who loves my family dearly and would never intentionally do or say anything to hurt us–posted an update on Facebook that made me cringe. You see, she is about 33 weeks pregnant, and just before Christmas, doctors found a heart abnormality on her baby’s ultrasound. Of course, their first thought was that the child may have Down Syndrome. So my friend reached out to me for advice because I am the mother of a precious baby boy who has Down Syndrome. Actually, he’s 3 now, so he’s not really a baby anymore. She asked me my opinion about having an amniocentesis, and I gave it to her (based on my personal experiences). We talked on the phone briefly, then I didn’t hear from her for several weeks…..until her post on FB just after Christmas which read, “Good news! Tests show that the baby is completely healthy! Praise the Lord!” I was so angry. Regardless of what her heart was saying, this is what I heard: “THANK GOD MY CHILD DOES NOT HAVE DOWN SYNDROME.” I was hurt and offended and angry, and I wanted to tell her (via blog–you know, the passive-aggressive way of chewing someone out!), but I refrained. THANK YOU for sharing my heart in this blog.

  15. 152

    As a mother of 2 beautiful girls one healthy and one having passed after living an amazing 9 months, 9 months longer than the drs said she would and 5 miscarriages, I whole heartedly agree with this. It doesn’t matter so much if they are healthy, it matters that they are here. I wish I could hold all of my 7 babies in my arms no matter if they were healthy or not and not only one. As hard as carrying around Katie’s equiptment was, it was more than worth it to hold her and love her every second. Thank you for your beautiful words, from one special needs mom to another, we have been truly blessed with angels!

  16. 153

    What a wonderful, wonderful reminder . . . thank you

  17. 154

    I love what you wrote. I have six beautiful healthy kids. I had a scare with number six that he could have down syndrome. That was the longest month of my life waiting to hear the news. I cried tears of joy for an hour after the phone call came with good news. I’m not real sure why I was concerned with it so much. All our worry came from an ultra sound. We did no extra testing to find out because it was our baby and we were going to have him no matter what the results said.

    With that being said, I don’t know that there is anything that can be said without possibly hurting someone. Because so long as she’s here could seem a little insensitive to those who have had miscarriages or have delivered a stillborn baby. I say this as I have had two miscarriages. One was a set of twins between number 4 and 5. The other was the twin of my 2 year old. I would give anything to have them here with me. I also say this knowing a friend who recently delivered her first child stillborn. And another friend who delivered her beautiful baby girl on Valentine’s Day years ago.

    I get what you said. As long as she’s here is a beautiful sentiment. So is saying as long as he/she is healthy. Everyone will always hear what they want. And I do believe as adults you always have to be careful of the little ears around us. Thank you for sharing as it brought tears to my eyes. I just wanted to share my thoughts with you.

  18. 155

    Thank you for your honesty.. I think weighing our words is so important..So many battles and so much suffering- any of our words can trigger one to the place you speak of.. I guess as I was reading it, I wished you had kept it to your personal story, because the truth is– many children, while they are literall, may not be as effected by a pregnant woman’s response, as long as it’s healthy, as you are implying- what jolts a parents heart is real, and the layers of grief are also real when you walk through loss, suffering, or something unexpected. Your view has been shaped by your circumstances, which is obvious- how could they not.. I just think at some point the grief runs deeper than a mom wishing for her baby to be “healthy” – that mom doesn’t know what you do, and you don’t know if she ever will- but, i just truly believe we can only live on the grace of what we know for today, and that while women really should be sensitive to those around them, they also should be able to genuinely say, we don’t care what the gender is, as long as she/he is healthy. Circumstances may lead them back to that stratememt & they may even wrestle with it, or, they may not- but it’s their story & journey.

  19. 156

    I am 24 and childless so far. I cannot discount anything said here, nor would I try. But I tend to look at things from a different angle, so here it is, and hopefully it’s worth something in this conversation.
    I feel like there are other ways to go about this so that a child does not mishear “As long as it’s healthy.” Any child, with any sickness, is in some way healthy as long as she’s alive. I think it’s important not to focus on the disease any more than to focus on the strengths. I’m of the belief that people are born into certain conditions and circumstances for a true, higher purpose; whatever it be, it’s beyond us to understand, much less quantify.
    One way I might address this with my child, if she were struggling with this: “A child who is alive, who can hear, feel, and think, is healthy. If you know who you are, it means that God is within you, and you are perfectly healthy as you are. Any mommy and daddy would be so excited to have you. Being healthy means you are alive and you are loved.”
    Or, if I want to invest in my child’s sense of strength and purpose: “Some mommies and daddies worry that if they have a sick baby, their baby won’t be strong enough to live through it. They’re scared that she won’t grow big and strong like you have, and she won’t be able to talk to me like you are right now. We worried too, because we love you so much, and we were scared to see you hurt. But when you were born, we took one look at you and knew you were strong and perfect, and that you could make it through anything. And look how strong you are! It takes a very special baby, and a very healthy baby, to be this strong, and all mommies and daddies would be grateful to have a strong and brave daughter just like you.”

    If my daughter were overhearing this, and internalizing it, I would hope that she would go on to understand that she IS healthy, and that she IS the strong baby that any parents would want and love. Whatever I would do, I would fight society’s typical response that would feed my daughter the feelings that her situation is “unfair.” I would want her to view herself as strong, capable, and in control of her life, rather than the victim of disease roulette. Really, I think if she can grow to identify with that concept, virtually nothing she could overhear could wound her. That, again, would be a product of her continual strength, something so extremely admirable and rare for a child to envelop.

  20. 157

    Great article! I am now 47, but I am that child. And words stick with you.
    Stacy McDonald´s last blog post ..Spinach Seafood Bisque

  21. 158

    I have Garrett who was born 2 months premie, fighting for his life and got a new heart at 3 months old, has hypotonia and can’t run, jump, do stairs or steps and needs full on assistance still at 5 years old. And I did stay “as long as she’s healthy” about my now 2.5 month old Madison and I meant it. I meant it in the way that I wouldn’t want Any baby to suffer what Garrett has and what he goes through day in and day out. It’s not a slight or put down in any way to Garrett, I couldn’t be more proud of him and I’ll defend and fight for him to the end, it’s just that Yes I wish everyone had a healthy baby b/c being sick and fighting to live everyday is awful for a child. I don’t know I guess it’s just my thoughts on it.

  22. 159

    Thank you, thank you, thank you! You speak my thoughts!

  23. 160

    My older sister was born prematurely & due to lack of 02, she has cerebral palsy. I’ve never looked at my sister any differently than my sister. There isn’t anything “wrong” with her. Sure she faces more challenges than most, but she faces them with the biggest smile I’ve ever seen. She is strong, funny, intelligent, & the most loving & caring person I know. Maybe she’s not society’s idea of perfection, but she’s mine. She’s my sister. We steal each others clothes, eat each others food & drive each other bonkers. & I’m blessed to have such an amazing sister. I couldn’t have asked for better!

  24. 161

    Now that I’ve read THIS post, I hope you don’t mind if I chime in again, even being new here.

    I love this post.

    But mostly, I worry of little ears overhearing these sentiments.

    Yes. Yes. Yes.

    When I was pregnant with my third — and with my two daughters sitting in my cart — an elderly woman approached me in the Home Depot in Boca Raton and screeched, “How dare you? You only have the right to replace yourselves!”

    Now, you know, go ahead and take me on adult to adult if you want. But how dare you make my CHILDREN feel unwanted? You would have my children feel they had no place here?

    When I was pregnant with my fourth daughter (we have six kids, if this is making anyone dizzy) we were told she probably had Down’s syndrome. We did a high level ultra sound which seemed to confirm this, but the only way to know for sure was to have amnio. Given that my pregnancies were high risk and that I miscarried about 50%, I declined the amnio. Yes, I wanted to know, but I knew it wouldn’t make any difference in whether or not she was wanted and loved.

    Long before she was born, we knew gender wasn’t the most important. We had three girls already and EVERYONE in Florida seemed to assume we were only “trying for the boy.” They couldn’t understand that gender had nothing at all to do with it.

    When the doctors told us she was probably NOT the perfect, healthy child, we knew that “healthy” wasn’t most important either. We loved her already and would love her no matter what.

    As it turned out, she was healthy. In fact, she is the most lovely 16-year-old on earth now. She’s bright and talented and even on a magazine cover this month. :) (I’m not sure if you can see this link, but here it is if you’re interested. February 2014 New Era) But none of that really matters. She’s our daughter and we love her and we love all of our children, imperfections, problems, and unhealthiness included. (And we’ve had our share of all those things.)

    Thanks for a thoughtful post.
    Alison Moore Smith´s last blog post ..I Hope She’s Pretty – Boys Will Be Boys

  25. 162

    This is such an amazing way of wording how I often feel. So, thank you for that. Our third baby was “not going to make it”, we were told at 7 weeks. “Go home and wait it (miscarriage) out”. We waited and well, he is here with us today! Beautiful, smart and I am thankful everyday for him, just the way he is, perfect, made in God’s image. The doctors asked repeatedly if we would have testing done, to check for “problems”. We had none done. We wanted him, no matter what. We live in a cruel world, one where it’s ok to say appearingly “nice” things. I had one woman, who said she didn’t want to have the children, that her only concern was that she would change her mind too late and she didn’t want a child with a problem or be retarded. I can’t change the world, I can only be thankful that I want and love my son, because he is perfect in my eyes.

  26. 163

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    Roulette Strategy´s last blog post ..Roulette Strategy

  27. 164
    Ann Marie says:

    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!

  28. 165

    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.

  29. 166

    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.

  30. 167

    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.

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