You Can’t Know

We’re in that period of time where most of our friends are still in that “how big will our family be” mode.

There are lots of babies being born which is great for me.  I get to hug and snuggle to my hearts content and then give them back when they start to stink.  icon biggrin You Cant Know

But as we watch our friends through their pregnancies, we sometimes struggle to understand.

Especially when it comes to the screening tests.

We’ve known several people who have gone through the Down’s ‘scare’, and had to have that discussion around whether to abort.

First off let me say I have nothing against abortion.  I believe every woman should have the right to control their reproduction.

Where I struggle is when the decision is made because they don’t want to bring a baby into this world who will have a ‘poor’ quality of life.

I want to scream at them “YOU DON’T KNOW!  A TEST ISN’T GOING TO TELL YOU THAT!”  *sob*

I’ve known children with Downs that is fairly mild and they are otherwise perfectly healthy.  The grow into wonderful people with a unique perspective on life and those of us who have had the pleasure of meeting them are so much richer for it.

Had we done those screens when I was pregnant with Vista, everything would have come back completely normal.  None of Vista’s issues would have shown up on those tests.  And yet we live a life filled with doctors and specialists and hospital visits and therapists and aides.

You don’t know.  You cannot predict if a child will be born healthy.  Of all the mom’s in my special needs group, exactly zero of them knew they were having a special needs child before they were born.

And had we known, ahead of time, about Vista’s brain malformation we still would have had her.

Yes, it’s sometimes hard having a special needs kid.  But?  There are the rewards.

I have learned a patience and understanding I never had before.

I have learned never to tell my child what she cannot do, because she will always prove me wrong. The only limits in her world are those placed on her by those who don’t understand that she is amazing and doesn’t know that she’s not supposed to be walking and talking, never mind running and reading.

I have learned not to judge people with disabilities.  They are people… with feelings.  And disabled does not mean mentally incompetent or unaware.  Quite frankly I’ve met more people with disabilities who have more capacity for caring and compassion than those so called ‘normal’ people in my life.

I’ve learned more about the medical world than I ever thought I would.  I don’t rush my child to the doctor for every sniffle like a lot of parents do.  We’ve learned to discern what’s a cold, what’s a flu, what’s croup, what’s asthma, and when medical care is really necessary.  A lot of parents could do with that training.

I have learned what it means to be a friend.  I’ll be the first one to admit that I used to be a complete flake.  Now, I forge friendships not a slew of passing acquaintances.   Want to know if you have real friends?  Face a medical emergency and see who’s still standing at the end.  I guarantee it won’t be the people you expect.

Having a special needs child has expanded our world in ways we never imagined.  I am so glad I didn’t throw away this opportunity to grow as a person when the universe handed it to me.

 

 

 

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12 Responses to You Can’t Know

  • Bil Simser says:

    Totally agree and it’s been a great eye-opener. True, sometimes I want to scream at the top of my lungs when she frustrates the Hell out of me, but that’s all part of the adventure. I hope from this experience I’m becoming a better human being. We’ll see.

  • Lisa says:

    Amen. We opted out of the testing during both my pregnancies. It wouldn’t have made a difference because I wouldn’t have ended the pregnancy and it just seemed like a lot of extra worry and stress for something that would still pretty much be an unknown until birth. I get that some people want to know everything they can, want all the tests, etc. But, that’s not me.

  • Michelle says:

    We chose not to do screening for our pregnancies, as we determined that it wouldn’t really make a difference to us. However for our adoption, when we got to be more selective about what special needs we could handle, we took that opportunity. Yes, we realized that if we had had a child with special needs via birth, we would have dealt with it. But given the choice, there are some needs that we knew we weren’t well equipped to handle.

    Michelle Reply:

    Or special needs that didn’t fit that dream that we had for our child. Does that make sense?

  • punkinmama says:

    xoxo

    So glad you wrote this.

  • Chibi Jeebs says:

    *standing ovation*

    Damn, I love you, woman. Vista couldn’t have better parents. <3

  • toywithme says:

    You’re an incredible woman, mother & friend!! I’m standing with Chibi & applauding you.

    Oh. And this, btw ….

    “Quite frankly I’ve met more people with disabilities who have more capacity for caring and compassion than those so called ‘normal’ people in my life.”

    WORD.

  • oh mama, i love the wisdom with which you speak.

  • PsychMamma says:

    Yes, yes, YES!

    I love you.

    FANTASTIC post. We knew, but we didn’t KNOW, with J. We knew she would have an intestinal defect that required surgery. In our naïveté, we thought she would have the surgery and we would go home in a week. We didn’t know that she would be born not breathing, that she would spend three months in the NICU, would have chronic lung disease later diagnosed as something very severe, would have a heart murmur, cerebral palsy, sensory processing disorder, and problems with eating and growth for probably her entire life. We knew, but we didn’t KNOW. We still don’t know, and we’ve learned to accept that. Every day is truly an adventure.

    Everything you wrote I this post is so, so true. I think about this when I hear parent say they don’t want to adopt with a line something like this: “When you adopt, you just never know what you’re getting into.” I want to shake them and tell them all the things you mention here. With your own, biological child you don’t know what you’re “getting into,” but whatever it is, it can be an amazing adventure that opens your heart to more love, patience, compassion, and understanding than you ever dreamed. Easy? No. But few things of worth ever are.

    Thanks for writing this. You are amazing and I love you big time.

    Michelle Reply:

    @PsychMamma, When we adopted we knew exactly what we were getting into (granted he was 9)! What we didn’t know was how we would react to what we were dealing with. In some ways that was easier, in some ways our births were easier. Nothing is certain in this life.

  • Beth says:

    Katie was “perfect” when she was born, though I admit I have little memory of the first several weeks of her life (let’s call it PTSD and be done with it). At 11 weeks her pediatrician was looking at me oddly and asking strange (to me) questions about my family and asking for pictures of our grandparents. By four months, he was talking skull size, brain development, and options. Katie had surgery at 11 months and our world has never been the same. Our happy, sunny adventurous baby is gone. No way to predict what’s going to happen next. She falls into a weird in-between category; she doesn’t quite qualify for a special needs label, but she’s not normal either. Sigh.

  • laura m says:

    Oh Jen, so wonderfully written. We had the testing done with all three of the kids, but that’s because I wanted to be prepared just in case. The sad thing is that most Drs don’t tell patients when they have the tests that there is a high chance of false positives on them, and that if they are positive for something more testing will have to be done when the baby is born. Here is the US they are trying to make it mandatory for people to have the genetic testing, but I don’t think thats fair at all.
    Hugs to you and Bill as you are both wonderful parents. :)

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