Wednesday, June 22, 2011

What's it like? (Part 2)

You can find the beginning of this post here.
No one can truly appreciate another's life experience. Who should decide whose life is valuable?

The Angelina Jolies of the world - with their excessive wealth, nanny for every child, globe trotting lifestyle, etc - might consider my life to have less value than theirs. 

We work hard for every dime we bring in (and by "we", I mean Shawn because he certainly works harder than me. And brings in more dimes.:) We have a small, starter home...that we've lived in for 13 years and have squeezed seven children into. We are raising these kids without outside help, nor do we have a housekeeper, a driver, or a chef. We drive vehicles that are over 10 years old. If the fuel pump goes out in the mini-van, we just don't drive it until we can afford to get another. Our vacations consist of camping in nearby parks in our tiny little camper...that leaks. 

But our reality is so much MORE! We have love and laughter (daily). We have great friends and actually enjoy the work or our hands. Our children are a blessing (all of them) and we delight in them! While I prefer 5-star resorts, gourmet coffee, and theatre performances, I've learn to LOVE camping, McDonald's ice cream cones, and the $1 movie. :) My life is full and rich, even though, at times, suffering has been a part of it. (Who has never suffered?)

Wouldn't have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because Eon will never father a child, might not marry, go to college, hold a job, etc., does not mean that he will suffer. Just because his life will not be like mine, doesn't mean he shouldn't have one.

How did we come to this - where we can project our hopes for our own lives onto our children to the point that, if they can't meet them, we decide that they must die?!?

We give women, in their darkest hour, a list of all the possible health issues their child might face and ask them to make a heart wrenching choice. They are supposed to take a gamble on what kind of life their baby might have based on a list
It breaks my heart.

The list never told me that my child with Down syndrome would:

* make me laugh every single day
* eat with gusto everything his momma cooks
* learn to use sign language
* wrestle with his brothers
* be everybody's favorite sibling
* be such a great problem solver
* introduce us to so many wonderful people
* love music, Blue's Clues, and pizza
* have a smile that lights up the room
* be so active (and fast!)
* have so few health issues
* charm everyone he meets

No list of diagnoses and potential problems could EVER accurately describe the life of a person! I don't know what the answer is. I do know that education and advocacy help. So does prayer.  I'll continue to do both. I hope you will, too.


  1. I seriously love this! And can so relate (almost... "only" 5 kids)... in our "starter" house of 13 years, too. LOL! Was supposed to be the 5 year house... "somehow" we've squeezed these kids in and the love and laughter continue to grow. "How do you do it? I couldn't do it" are common phrases we hear. I'm sure you do, too. Sounds like John Michael and Eon would be best buds and our gaggle or brood (whatever others call it) would have lots in common :-)

  2. I have often thought about how we put value on our lives...and how if you are rich and famous your life is somehow more important the next persons...but you are so right we can find joy and happiness in the "finer" things! and to know I have not missed one moment of my children lives is so worth the money and fame...I also am pondering how a doctor can tell us that our children are enhanced and in the next breath ask us to terminate...and then when you decide not to...they said but these are the risks...i get the risks...and Maddie is worth it...and more then I could have expected...great posts...smiles

  3. I love the list! We should have a compilation of lists written by parents of kids with Down syndrome.

    And let me put in a plug for college: Eon would love the REACH Program at CofC! I've had such fun teaching. Students with intellectual disabilities are in classes with typical students--challenging lecture classes, seminars, etc. It's really exciting.

  4. Loved this! I sure wish that list above was given to me when I got Russell's diagnoses, instead of that huge list of all the things that may or may not be wrong with him. Really I just wish some one would have told me he was just going to be a regular boy, and that even though he may lead a simpler life than others it in no way means his life will be less than...We don't all need to walk down the same path, have the same goals or dreams, or live the same way to have a meaningful life.

  5. Hi from francines warrior! just had to say I love what you are doing for the reeces rainbow angels who also have my own heart captured! i am trying to contact all warriors to let you know about a weekly friday linkup/bloghop i am running at my blog, flight platform living over at Its a linkup to profile all the waiting kiddies and find families for them, every week i will add a gallery of faces for anybody please stop by and get that beautiful angels face out there for their mummy to find them! you will find details on how to take part on my post 'rethink, rulechange and really excited' thanks so much. jane xxx if you could spread the word to other warriors you know that would be fab as well xxxx

  6. Love the list, Tara! Great post!