13 December 2011


**I wrote this on November 19th.  I wasn't going to publish it.  I've decided that I should.  I am leaving all the typos and spelling mistakes because I was in a fragile state of mind when I wrote it.  I think it should remain just as it is.  I am sure some think I whine too much, but I think it's important to know that tragedy to one person isn't necessarily tragedy to another.  My world has been forever changed, and I'm not sure I will ever get over it.  I try everyday.  It gets easier and easier everyday, but it is always there.  A little black spot on my heart.  The spot where I have laid to rest my idea of what I thought all of my childrens' lives would be like.  Every hope and dream I initially had for Betsy has been buried there, and in it's spot I have planted new hopes and dreams.  Different ones.  It is a learning process.  One step forward, two steps back.  Certain things trigger my mourning to surface all over again, and I quietly push those feeling back into their grave and dust myself off, and carry on.  Yes, I am selfish in that sadness.  I can admit that.  In those moments, I have to remind myself my sadness is pity for myself and the way I thought things would be, or should be.  I definitely have other worries and sadness when I think of what Betsy's future will hold.  Jake and I cannot be there for her forever, but my darkest times are when I let the evil of self-pity grip my broken heart.  Pray for me.  Pray for sweet, sweet Betsy.  And always remember...EVERYONE has a cross to bear.  No one is immune from that.**

So, I've been watching 'American Horror Story'.

Not much to report. I guess I'm still waiting for it to get as scary as everyone says it is.

But, that's not really what this post is about.

There is a character in the show named, Addi. She is an awesome person living with Down's Syndrome.

Jessica Lange plays her kind-of-psychotic-but-has-good-intentions mother. And she plays the role well.

In one of the episodes, she's upset with Addi. She asks her if she knows what people think when they see the two of them walk down the street together. She goes on to tell her that they think two things:

1. That they feel lucky they're not either of them.
2. That she {Jessica Lange} must be a hero.

I watched this episode in one of those rare, rare, rare instances that I was home alone, and I cried.

Like a baby.

I wondered if that's what people think when they see my Betsy and me.

Grateful, and full of pity.

I am no hero.

Jessica Lange's character goes onto to say, "As if I had a choice.".

I didn't. Most mothers's do not.

Oh, well, I'm sure some think there is a choice.

But to the ones that are in it, really in it...they don't.

I had a choice in making her, but not how she turned out. Not how God thought she would be most perfect.

My, how long it's taken me to realize that she is just as she should be. Perfect in every way.

My perfect little girl.

We speak a perfect language only we understand.

She walks a perfect way that only I know when she'll fall.

She loves me so perfectly, sometimes I think I might burst from it.

One day, even she'll want to leave. She'll want to spread her wings in her perfect Betsy way. And, I will have to let her go.

And it will hurt.

More than with the other 3.

And the thing is, they'll understand why it will be harder.

Those other 3 are my hero. They know so much more than the average kid their age. And they didn't have a choice either. But I'm thankful. Thankful they know that kind of love, tolerance, empathy.

They let me love her the way I need to, and they get it. Even at their tender age. They know without being told why. Sure, they will resent me, or Betsy one day, for something, at some point for having to be so patient, and lenient. But it will be fleeting.

After 7 long years, I think I'm starting to get it. Why Betsy is all mine.

And the answere is simple...because she is supposed to be.

That's it.

Whatever I learn from it, no matter what I decide to so with those lessons, it's just 'to be'.

It's exactly what I needed exactly right now.

Maybe that doesn't make sense to anyone but me.

And that's okay.

Maybe it shouldn't make sense to anyone but me.

And her perfection is what I will always need right at that very moment


  1. i am really glad you decided to publish this. while i am not dealing with anything similar, we all do have crosses to bear. i am certain that in writing a blog, there are advantages- bringing things to light.... sharing your best and your worst and just sharing yourself because in doing so, you will undoubtedly reach out to at least one person who is struggling, faltering, feeling guilty for how they feel... and if you can reach that one person and let them know- it's ok, you are not alone- then that is worth it. maybe you are not a "hero" but you are a great woman, learning along the way to be the best mom you can be. good for you.

  2. My son has Asperger's Syndrome, a form of high-functioning autism. I feel everything you were saying. I had to grieve my son since I used to have one child, and then he became someone totally different. I had to learn that he is who he is, and no one can change that. I had to stop trying to fix him because he wasn't broken.

  3. it all makes sense to me: i am your "other kids." my younger sister was normal until she was 5, and then she went through a rare pediatric alzheimer's-like regressive neurological disease. that was 25 years ago. it changed me, forever. she and i are still close, and always will be. as i grew up, she never did grow up. as the years went by, i grieved our loss. i still do. i remember when i was college age, getting ready to go out with friends. i passed by her room, as she watched Barney, and I broke down in tears, realizing that she'd never be "going out with friends." she was still doing the same thing we'd done together decades earlier. she and i are both in our 30s now, and even as i write this, the tears are there. you never get over the loss of what we don't have on this side of heaven. but this side is NOT the only side......I'm so glad i have my sister. it's a gift: always has been, always will be. always grief, but always gift.

  4. This was lovely. I came to see your kitchen, but I'll stay to see your heart :) Your family and home are beautiful! xoxo

  5. I am not a cryer by nature, but I teared up in my office reading this. And I want to thank you from the bottom of my heart for writing it. I have always wondered how I would cope if this was the situation I was handed. And reading your post makes me realize that "cope" is not appropriate at all....at least no more than it applies to "normal" children. Thank you, thank you, thank you. You DO have a perfect little girl, and she deserves a mom like you as much as you deserve to have a wonderful soul touch your life. God bless and Merry Christmas.

  6. I'm so glad that you're able to think of Betsy as "perfect". You have a beautiful heart.

  7. have come to realise that as parents of both special and extra special children we are the ones that are the best for and with and because of them

  8. I was the other kid: My brother is severely autistic, born at a time when very little was known about autism. (He wasn't even correctly diagnosed until we were in our 20s.)

    And I am you: I have joined my life with a man whose daughter was recently diagnosed with Asperger's. A different name, but the same grieving and worry and wonder. Perhaps I had more choice--but it doesn't feel that way. We love who we love, and we must take them as the complete packages that they are.

    Some days, when I look at my early life and my life today, I feel twice cursed. Other days, I feel twice blessed. Most days are other days. Both my brother and the child I'm now helping raise are a gift. I thought I'd learned all I needed to know about a great many things from Joe, but Ella is helping me see all I have still to learn.

    I'm glad you chose to post. It's important for others to know how it is. It's wonderful and terrible and amazing. It brings out the best and worst in those of us who get to make this journey. In other words, it's a lot like parenting a child without disabilities. And completely different, too.

    I've often said that I'd rather have an interesting life than a boring one. I still say it. I hope you do, too--even on those "whiny" days. Wishing you peace--

  9. I have two boys diagnosed on the autism spectrum (5 kiddos in all) and your post is so honest and true - thank you. Any mom going through similar has been in this place and the realization that we can embrace the situation is freeing. There is a vey real grieving process that takes place though, and I think you will appreciate this article: http://www.cammiemcgovern.com/articles_happyending.html It is about autism, but really it is about a mother's love for her child. Thanks for sharing.

  10. A friend told me about your blog. And what a perfect post for my first visit. Emmaus our first baby girl was born in July with a disease called Tuberous sclerosis. Your journey with Betsy sounds somewhat similar to the road we are walking. This line is so true for me
    "The spot where I have laid to rest my idea of what I thought all of my childrens' lives would be like. Every hope and dream I initially had for Betsy has been buried there, and in it's spot I have planted new hopes and dreams. Different ones." Thank you for your honesty. I blog as well. Come visit!
    Merry Christmas!!

  11. My sweet Betsy, known as Lori to us has been the joy of my life for 39 years now. My beset advice is to enjoy every minute and marvel over every little deed and milestone. I thank God every day for her, for the fact that I didn't waste too much time wondering why, and His strength and wisdom to carry on with His most precious gift. My love and prayers to you.

  12. Thank you for posting this.
    Thank you for being honest and completely transparent within your situation. God has blessed your life with Betsy and you have blessed hers.

  13. Beautiful expression of what so many of us moms feel. Thanks for the glimpse of your struggles and joys. Definitely more joys, though, once we get beyond the ititial shock.

  14. I have had a horribly busy week...i have been away from my little peoples waay too much.so after a get outta bed 986 times tucking in kinda night..i plopped my exhausted self down and on some strange cyber whirlwind ended up here. i love this post it is refreshing to hear someone reflecting on life in a way that is genuine...dealing with hard blows with grace and honesty.


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