Wednesday, June 08, 2016

Fear to Love: A Reader Response Post



So excited and honored to be featured in my first print magazine interview with Lunch Lady. Lunch Lady is a publication out of Australia but you can get your copy at (deep breath) Anthropologie here in the states (from what I can tell, it's only available online). I have to admit I was a bit nervous to share our story in an actual print magazine, but the feature turned out lovely. Also, if you get your hands on a copy you'll finally know my kids' real names. Ha! So if that's any incentive... (wink!) In this interview I talk a lot about some of the main messages I try to spread through This Little Miggy, about love, fear and disability so today I'd like to share a special post that sort of sums up a lot of these thoughts in a specific response to a message I received from one reader. I've been writing this post in my mind for weeks now and while it still feels significantly imperfect, the gist of it is right.

Now add a copy of Lunch Lady to your next Anthro order, then sit back and read the following post. It was a difficult one to write. I hope it is meaningful and significant and for you specifically Anonymous, I hope you feel my love and compassion.

***** 

A while ago I received a direct message on instagram. It said the following:

Hi, I came across your blog and I wish I could be as brave as you. My husband and I found out our baby had limb reduction defects during our 21 weeks ultrasound, just as you described, we never thought it would ever happen to our life. It was devastating. Our baby was a boy, he had almost the same condition with your girl, Lamp. But we couldn't keep him. I wish I was as strong as you. I don't know if I will ever be able to forgive myself. I can only pray that he will come back to us.


This is my letter in response to the woman who wrote me, who I will refer to as Anonymous.

Dear Anonymous,

First let me acknowledge that I'm not even sure I should be writing this. It was a short and somewhat vague message and one that I'm not sure you actually want a response for. Second, based on what you said I'm assuming that you aborted your baby and I'm also assuming that you believe in God, and when you say you hope he will come back to you that you mean God will send you another little baby in the future.

Up front I want you to know I don't think you're a terrible person and everything I'm about to say, I say with loving kindness. My heart aches for your heartache, even as my heart aches for the child you terminated. It's not either/or, it's both. We often have a hard time with the "both" thing when it seems they represent contradictory points of view, but the older I get the more I see the need to be able to comfortably hold a place for "both" in our viewpoints.

In general, I consider myself to be pro-life and terminating my pregnancy was never on the table. It wasn't a decision I had to make because it was the culmination of thousands of little decisions over the course of my life. I was raised a in a dysfunctional but still Mormon household. I absorbed and eventually accepted for myself teachings that centered on family, motherhood and yes the sanctity of life. And it's likely that your decision to abort your baby was also the sum total of a thousand decisions and influences in your life that led up to that decision. And while I have no idea what you were taught or how you were raised, again I want you to reiterate that I don't think you are a bad person who was raised in a bad home. That's not what I'm saying. I'm simply pointing out that from the get go we stood on two different mountains with two different points of view. I never made a conscious decision not to terminate, because that decision was so deeply ingrained in me throughout my life that I can hardly take credit for it at all. That being said, I am deeply grateful for those teachings and beliefs. I hold them sacred.

And while termination was never on the table for me, the fear I felt was very, very real. Therefore while our differences in our choices were very, very different we are linked by that fear. I know that terrible fear that comes with hearing the baby you are carrying is not OK.

And like you, I wanted the fear, and initially the baby that embodied that fear, to go away.

While this is hard for me to say out loud, I tell you this so that you understand I wasn't some angelic saint who valiantly rose to the challenge without a second thought. In that sense I think we are more alike than you know.

However, those feelings didn't stay. I quickly felt a bond with this baby, my sweet Lamp, that transcended that fear and all I can say is that it was divinely inspired and not of my doing. 6 years later I stand so far away from those terrible memories I'm not sure they're real. Didn't I always embrace her as my own? Didn't I always see her the way I see her now--as my little love, who is a whole person and who is not defined by any one trait?

No. Of course not. I was AFRAID.

So here's the point of all of this preamble. I don't want to shame and I don't want to preach but I feel an obligation to the world to share what the other side of this coin looks like. The coin of course is having a child with a disability. One side of the coin is fear. The heart of our apprehension when it comes to disability is FEAR. I know that fear. 

And the other side of that coin is love.

The great alchemy of my life was witnessing that blinding fear of having a "disabled" child turn into all encompassing love.

And to feel that love lift me, propel me and support me to do more than I thought possible. Another word for that love is grace. Grace, or love, is a divine power that doesn't heal us or change our circumstances, but rather it enables us to do more than we could have done on our own. Further I have been fortunate enough to feature interview after interview of mothers who have experienced that same alchemy: blinding fear to all encompassing love. We're not special. That whole "special kids go to special families" thing is crap. There are plenty of disabled kids who are abused and neglected. And those of us who strive to be good parents are just as fallible as the next mom. So really, it's not us.

It's that everything we've ever thought or understood about disability is wrong. Primarily, that disability is a burden, that disability is synonymous with a "lower quality of life," and that people with disabilities are lucky to have all of us smart, able-bodied people here to take care of them.

Timothy Shriver, CEO of The Special Olympics, sums it up well:

"People say that well intentioned to me all the time, 'There but for the grace of God go I' And I always want to say to them, that pity, that fear that embodies that 'I'm healthy and they're not,' I think there's a strength in vulnerability that only vulnerability knows. You know, I think in some ways the whole Special Olympics gamble is, is there power in vulnerability and trust? And I think the answer of our athletes is: There is only power in vulnerability and trust. I always think it’s that sense of respect and dignity that comes from saying, no matter what you have, you’re OK. Special Olympics is about saying your child is OK just as he or she is."

Did you catch that?

WE ARE ALL OK JUST THE WAY WE ARE!

I feel like all of us--the human family--should stand in a circle, holding hands and chant that refrain over and over again.

That is what it means to have strength in vulnerability. But we don't believe it. Any of us. We don't believe it about our healthy, able-bodied selves, so we sure as hell don't believe it about a person who has disabilities.

So while the doctors and the scientists measure the things they can measure--heart rates, bones, brain waves, cognitive abilities, vocabulary, number of steps, IQ, etc--so they can calculate something as intangible as "quality of life" I wonder when are they going to realize their most valuable data is completely unmeasurable? How do you measure love, joy, contentment, kindness, happiness, fulfillment, dignity, wholeness?

And the rest of us with our able bodies and our sharp minds convince ourselves that a "high quality of life" is found in success, acceptance, beauty, wealth, degrees, fun, travel, sex, food, etc. We hide our deficiencies and our disabilities (because we all have them) and try to convince the world that we're fine. We're strong. We can handle it. We'd be so much better off if we could accept that there is only strength in vulnerability and trust and that we really are OK with whatever God gave us.

Anonymous, I do hope that one day God brings your baby back to you. I hope you move past your pain and guilt and that you go on to have another child. And when you're getting that fateful ultrasound, I would urge you, with loving kindness, to keep the following in mind:

Every single human being is a gamble. 

Ultrasound machines, while helpful, are not future-predicting machines. Yes we were told about our daughter's limb differences, but no machine could have ever told us about her naturally joyful disposition or her infectious laugh. No machine told us about how patient she is and that her first words would be "thank you" or all the hilarious things that she says on a near daily basis. I'm very grateful for that ultrasound appointment and for the information it gave us, but what is most clear to me now is that the ultrasound scan provided us with a small sliver of information in the whole of who our daughter is. If ultrasound machines were really helpful, they would tell us who the future murderers, rapists, and bad drivers of the world were going to be. That would be helpful information. Also, consider that there are many, many syndromes and conditions that aren't detectable on an ultrasound machine anyway. See? Gamble. 

Millions of parents the world over have had an ultrasound appointment where everything came back positive and normal, and they went on to have these healthy children who grew up to be drug dealers, belligerent teenagers, rapists, liars, cheaters or just incredibly, terribly average people. And guess what? They love them anyway. If not disability, then it will be something else. Because with us humans there is always something else. When you think about the time you spent dating and choosing your mate it seems almost insane that we then go on to invite tiny humans into our lives where we get absolutely no say in who these little people are. We get no say in their personality, likes, dislikes, abilities, disabilities. And we love them anyway. Every single human is a gamble and we love them anyway. People with disabilities are no different. I promise that you will love them anyway.

And the doctors and experts that advise people to terminate, they're not the ones who know because they're measuring only the things that can be measured. Consider the words of the mothers who know, like this mom and this mom and all the moms who love a child with a disability and you will see that same pattern over and over again. Fear to love. Because all the best things in life that can't be measured like happiness, love, kindness and wholeness are not based on circumstance, they come from somewhere else.

We have so many fears about disability, because these are the very things we're afraid of--sickness, not being smart, not being pretty, not being successful, physical disability! We don't wish these things on anyone. And yet...

I invite you, and anyone else reading this, to look at disability in a new light. I'm not suggesting that we'll never feel fear if we discover that one of our children is "not OK." It is hard. It is difficult and uncertain. You will most likely need help and support from many sources. In your message you called me brave. I too once thought that special needs moms were just made up of different stuff entirely--like they were half human, half angel. I was wrong. It's not about strength, it's about love. Love that uplifts and expands at the same time. Love that says, WE ARE ALL OK JUST THE WAY WE ARE. Please consider my blog as a testament of love and honor and respect to the disability community and the almost 160 stories I've shared over the years of special needs families. 

On a final note, I want to leave you with another story that Timothy Shriver shared in an interview with Oprah:

"You know one mother told me, she had 3 sons, two work at big investment banks and the other has a severe intellectual disability. She told me, 'overtime people ask me about my sons and I tell them about my oldest who's in New York and I tell them about the second one who's in Chicago and then I tell them about Christoff who's at home. Who I have to get out of bed every morning and they always say to me, 'I'm sorry.' And she said to me, 'Tim your life's work is to tell them to stop saying that about my son. That boy is the light of my life and everyone thinks I should be afraid, that I should be sorry that I had this boy. And he is magic.’"

The alchemy. Fear to love.

That is MAGIC.

XO,
Miggy

12 comments:

  1. Really beautifully said.

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  2. Just lovely, lovely and more beautiful.

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  3. Wow. This is so beautiful and powerful. Thanks for sharing.

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  4. Beautiful. Perfectly written. Fear to love; I hadn't thought about it that way, but it is so true. I recently wrote a blog post about the fact that I love my life--medically fragile child and all, and that sometimes my special boy is my EASY child. I would have never believed that at the beginning of this journey. Fear to love--and joy.

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  5. I've been reading your blog for years, and this is the best thing (of many really awesome things!) you've ever written. Fear to love. That's magic.

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  6. This is so, so beautiful, Ms. Miggy. Tears and love and hugs to you all rolled into one. I want to share this with everyone I know.

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  7. Brilliant and so eloquently said. Miggy, you need your own TED talk. Luckily I work right next to an Anthropology so I will attempt to get a copy tomorrow.

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  8. Anonymous12:22 PM

    Thank you so much for posting this. I just found out at an ultrasound this week my unborn baby is at an elevated risk for Down Syndrome. I just never envisioned this even being something we would have in front of us when having another baby. It's been a shock for both my husband and I, and I've struggled with such fear and anxiety (am I a good enough mother for a special needs baby? Can I really do this? I feel like I struggle on a daily basis with my other child to be a good mom!) since we got the news. But I've also been filled with an overwhelming love for this little baby! We are still waiting on some more tests to confirm that that baby is at an elevated risk for T. 21, but I came here to reread some of the amazing stories to comfort and inspire myself. If this is what God wills for my family, I am not alone! So thank you for this blog, the interviews and this post in particular.

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  9. Absolutely beautiful.

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  10. So beautiful, miggy! I've read this numerous times over the last few months, and it always speaks to me.

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  11. Anonymous2:03 PM

    This is so beautiful. Thank you so much.

    I have to add that I came across your blog while pregnant with our fourth baby. At the time, I didn't know that he would be diagnosed with Down syndrome a few days after birth. I was racked with fear. I sometimes still am (and to be clear, I've had just as much fear and anxiety about my "typical" kids, because honestly, anything can happen to anyone at any time. Like you said "gamble."). He is 6 months old and there are a lot of challenges, a lot of adjustments, a lot of hard things. BUT I wouldn't change a single thing about him or our life. I love him so much.

    Thank you so much for so beautifully and clearly articulating just a glimmer of what this journey is like.

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  12. Now you have me crying at work... Amazing message. When I was pregnant friends/family and doctors asked if I was going to have the extra tests done to find out about issues the baby might have. I always said no. Why find out about something I can't change that will make me worry more and stress more. I told them that I was going to have a baby to love no matter how it came to me, I didn't need the tests.

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