Lots o’ favorites to report on up in these chilly parts and I really planned to write a normal Five Favorites post to share them all. But then I got this post in my Feedly last night, and it’s all I can think about. So be sure to read it and then, I’ll thank you to tolerate my soapbox preaching. 

Why It Matters When We Rub Our Bellies And Say ‘So Long As It’s Healthy’

I don’t think becoming a mom of  handicapped children has made me über sensitive to most phrases people throw around, but Jeanette is right on the money with this one. Yes, we all want “healthy” children but let’s try to see the value in every child shall we? If God sends you with a child who has Down Syndrome, autism, or a neuromuscular disorder you’re still blessed! Your life may not be as you imagined but it’s not over. You, your spouse and your child can still be happy!

Pre-natal testing means tons of children are not being born because their parents are afraid of the possibility of raising a special needs child. (And shame on the doctors who promote this.) To these parents I want to say, you are denying yourself the opportunity to raise a wonderful child! You can indeed love a child who doesn’t have ten fingers and ten toes. People like me, and Jeanette and all the other parents of special needs children I’ve met are not super heroes or saints. We’re just like you. We love our children, regardless of whether or not they meet society’s definition of healthy or normal. I pray everyday that Fulton and Teddy are miraculously healed but I’d rather have Fulton and Teddy as they are, then a family of only three healthy children. None of us regret having our children. None of us would have it any other way.

Yes, it’s hard. But most people are capable of doing hard things for their kids. Of all my friends and family members, I can’t think of any who couldn’t do what I do day in and day out. It might not be a cross they’d ask to receive but it’s not impossible. And if you think you’re not capable of making such sacrifices for your child, then I question your ability to make sacrifices for your spouse or a healthy child. I don’t believe you’re really that selfish, do you?

I’ve also met older people with SMA and they have such a wonderful outlook on life! They’re not miserable. When people argue it’s better or “unselfish” to not bring another child with special needs into the world, because the poor children suffer so, they obviously live in a bubble. Go out and meet people with special needs! Meet my boys! Will you find some unhappy people? Sure. But I know lots of unhappy people with nothing wrong with them except a piss poor attitude. Should we create a prenatal test so we can weed out grumpy people? Cause they’re pretty difficult to handle to you know.

So let’s be honest, people don’t just want healthy kids, they want easy parenting. They want no surprises. They want first day of school pictures, and little league games, proms, graduations, weddings and healthy grandchildren. But there’s no test that can guarantee that. If you open yourself to parenthood, you are open to all it has to offer, the good, the bad and the unexpected. No one is guaranteed a healthy child. And yes, that means parenthood can be scary, painful, heart-breaking and downright anguishing. But I promise you, regardless of the health of your child, parenthood is wonderful, joyful, exciting, and better than anything you can imagine. That child is worth it. Always. Be not afraid!

Be Not Afraid!

27 thoughts on “Be Not Afraid!

  • 01/08/2014 at 7:48 am
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    Beautiful. Thank you for writing this. My daughter has Digeorge Syndrome and we’ve been through a lot; yet she’s my little sweetheart, and I’d never trade her 🙂

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  • 01/08/2014 at 8:15 am
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    Very well said. My daughter (due in April) has been diagnosed with Trisomy 18. The odds that she will be born stillborn are high so right now we are just praying that she is born alive and that we get some time (any amount of time) with her.

    Even though she hasn’t even been born yet, I am already so blessed to just to have the privilege to carry her. The prayers for her and for our family have been tremendous and this little one (although not healthy) is already very well loved!

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    • 01/08/2014 at 8:38 am
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      I’m including a link to your post because, you’re right, even in utero, these children are enriching. I’ve met other moms in your position and I think they all valued the time they carried their children in pregnancy and however long they had with their children immediately after birth, whether it was minutes, days or hours. None wished in hindsight that they had aborted the child, regardless of how difficult the situation was for them.
      http://www.beth-amomslife.blogspot.com/2013/12/enriched.html
      I’ll continue to pray for you, your unborn daughter and your whole family.

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  • 01/08/2014 at 8:35 am
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    could not have said it better myself. my courtney is the heart of our home and we had no idea she would be a special needs child.

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    • 01/08/2014 at 8:41 am
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      Thought of you as I was writing this Mary. What a wonderful example you give through your blog, Instagram feed, Facebook, etc.! Even when it’s tough you exhibit such faith. Your blog title “Passionate Perseverance” really does say it all!

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  • 01/08/2014 at 8:45 am
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    Awesome. Just…awesome. I don’t have any special needs kids, but this is something everyone should read. Just plain true.

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  • 01/08/2014 at 8:47 am
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    So glad someone(s) out there is talking about this. It’s always bothered me, even though both my kids are healthy.

    I worked with cancer patients for a while, and had a young woman who was pregnant and needed a chemo regime that had never been used on a pregnant patient in the country I live in. There was a lot of doubt about whether or not she should abort. No guarantees. And the baby would need to be born prematurely. I was ready to kiss the high needs obstetrician (maybe perinatologist?) who said – there are no guarantees no matter what, you’ll always wonder what if regardless of what you decide, and people don’t regret the kids they have, they regret the kids they don’t have. (Baby was born fine at 33 weeks and mom had complete remission.)

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  • 01/08/2014 at 8:49 am
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    Beautiful post. So needed in today’s society.

    I have been a “geriatric pregnancy” with all of my children and my youngest (so far) was born last year when I was 44. After my initial blood test the chances of Downs went to 1:13. I was all but escorted to Planned Parenthood and strongly recommended for further testing so I “would know”. Not knowing that my second child would be colicky or my fourth child would have temper issues etc., etc., were crosses for me at the time and yet, it was never suggested that I “prepare” for that. Each child comes with his own crosses and blessings.

    In the end, my son was born without Downs but his entire pregnancy changed me and my whole family. We had many discussions, prayed a lot for God’s will and the grace to carry it out. We became even more staunchly pro-life. Even my 3 year old knows a baby’s a baby from the very beginning and every child, no matter what package they come in, is a blessing from God.

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  • 01/08/2014 at 9:00 am
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    I love this post. I wish I had more words, but I don’t. Thank you for having the courage to write this. Every life is a gift and I wish more people would speak up like you.

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  • 01/08/2014 at 9:26 am
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    Thank you for writing this. I don’t have any special needs children but that phrase has always bothered me. The implications are ugly. If it’s not healthy, then…what? I don’t know how I’d handle comments like those…I get bothered enough when people would say “it better be a girl” or other such nonsense when they see that we have all boys and I was pregnant again. Your children and every child, healthy or not, are a blessing. I hope this phrase disappears, at the very least in Catholic circles…

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  • 01/08/2014 at 10:31 am
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    Thank you! Well said and something that needs to be said. I think often people make this comment without thinking about what they are really saying,.

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  • 01/08/2014 at 10:34 am
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    I just love your heart, Kelly. Awesome.

    It does bring up a question for me though, as I have been known to utter this phrase in response to everyone and their mother who tells me they “hope it’s a girl!”. What I want to say in response is that we’ll love this baby, no matter what gender, but that phrase is ingrained in my head and I need to relearn some dialogue. I do hope the baby is healthy, after all, isn’t that what we all pray for? But I don’t want to imply that we won’t love and be happy with whatever God chooses to send our way. What should I say?

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    • 01/08/2014 at 10:48 am
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      I totally understand, and honestly, if I was out in public and I heard someone use the phrase “so long as it’s healthy” I don’t know if I’d step in and unleash the contents of this post on them. Because, for most people it is an ingrained phrase and yes, we all do want healthy kids. Like I said, I still pray my boys are miraculously healed. The desire for them to be free of SMA never goes away, even once we accepted our situation.
      I don’t know what to say instead; maybe “We’ll be happy with whomever God blesses our family with, so long as he or she doesn’t resemble the UPS man.”

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      • 01/08/2014 at 12:17 pm
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        Oh Kelly. You are so good at making me laugh while making me cry.

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        • 01/08/2014 at 3:00 pm
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          I try to say something along the lines of “we’ll take any blessing God wants to give us” with a genuine smile. Or if you’re feeling like it fits and is appropriate, perhaps a slightly surprised “Oh, we LOVE our boys and would be so blessed with another!” Maybe something like that?

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  • 01/08/2014 at 11:52 am
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    Beautiful! I’m reading a book about the science/research behind miscarriage and it has some stories of individuals who have experienced many miscarriages. One couple had 7 early miscarriages and then a pregnancy that was progressing well…until they found out the baby had Down Syndrome. And they aborted. They would go through any medical treatment, any painful procedure to have a child…but only a “perfect” child. It breaks my heart – that couple had a child that they (most like) would have brought to term after SEVEN miscarriages, but still she was not what they wanted. I just…don’t have words for that. And the book is full of tons of similar stories.

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  • 01/08/2014 at 12:53 pm
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    This is a beautiful post Kelly. We’ve made parenthood so consumer-based that we’ve forgotten that parenthood is essentially something you will never have control over no matter the situation or child or age. Life isn’t perfect but love changes everything.

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  • 01/08/2014 at 1:25 pm
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    Amen! I’d be appalled if such pre-natal tests were offered to me; knowing if my child has or does not have an illness or condition won’t change who that child is in the least, or my joy of him!

    It’s something my husband and I discussed in depth before we were married. We knew that there was a chance that one or all of our children could have schizophrenia, and that that might amount to terrible suffering. But we asked ourselves, does that mean that those children’s lives won’t be precious, good, and beautiful? No!

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  • 01/08/2014 at 4:00 pm
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    Wow, Kelly. This is beautiful. I love how encouraging you are because I DO think a lot of people don’t believe that they could do it. I’ve honestly never thought about that phrase, but I can see how it is not actually a good representation of how I feel. Yes, we all want health for our kids. But “so long as it’s healthy” implies that if it *isn’t* healthy… some other outcome is to be expected? Something to think about, certainly.

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  • 01/08/2014 at 7:27 pm
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    THIS.

    My life is so incredibly blessed because of Daniel. As hard as it’s been, I wouldn’t trade it for the world, even when the little monster head-butts me so hard I wind up with a concussion. (Not that this happened on Saturday…)

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  • 01/09/2014 at 6:41 pm
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    Great post, Kelly. I could go on and on about how this hits home with me, but suffice it to say, this was a REALLY good post.

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  • 01/09/2014 at 8:24 pm
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    This is a beautiful post, Kelly! I have no kids (um, not even married yet!)… BUT I am a pediatric nurse. I would run into this type of attitude with coworkers when we had patients with special needs. It always frustrates me. Enrages me, sometimes. And makes me really sad.

    I had some more thoughts about it on a post a wrote after one of the patients died.http://jumpinginpuddlesisfun.blogspot.com/2013/07/he-mattered.html

    Anyway! Thank you for this honest and insightful post!

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  • 01/10/2014 at 4:53 pm
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    I worked with special needs students for quite a while (and you know what they say- if you know one child with special needs, well, you know *one* child with special needs!)

    I worked primarily with a little (try, 15-year-old) girl with Downs and some additional developmental delays, including limited speech abilities and some sensory issues.

    She is my favorite person ever. She constantly amazed me, taught me about myself, taught me about life, and became a close friend. I cried when I left that job, because I knew that I would miss her. I do miss her.

    She was adopted as an infant, and when her family arranged everything with her birth mother, they had no idea of the challenges she would face. I am so, so, so glad that this little girl (I mean, young woman- I’m getting old!) is in this world. She makes it a better place.

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  • 01/11/2014 at 1:52 pm
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    We are expecting our 7th, and I have had a lot of people ask “so what are you hoping for?” To which I usually reply “we are happy with whatever,” and for some reason the most common reply to my reply has been “so long as it is healthy, right?” I usually don’t know what to say to that, and am left dumbfounded, and maybe nod and smile. But, thank you for your post, because now I am going to say “no.” And hopefully follow with something intelligent and kind.

    Anyway, I’m usually a naval-gazer/lurker, but love your blog. Thank you for all your honesty. If you’re ever passing through Nashville, TN I want you to come to my house!

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  • 01/16/2014 at 11:27 pm
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    I remember very clearly a day in my first semester of medical school when the topic was somehow related to this – pre-natal testing, risk of amnio compared to “risk” of trisomies, etc. A number of my classmates were quite adamantly in favor of testing – the more the better. My response then, and now, is that I’m more afraid of the things we can’t test. It’s chromosomally-normal, perfectly “healthy” children who grow up become sociopaths, serial killers, or what have you. There are no guarantees, so why are we so scared of a few scrambled chromosomes? Thanks for posting.

    Reply

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