worth and value.

a friend sent me a link to this article the other day.  the story is of a surrogate mother who found out the baby she was carrying was going to have multiple medical needs, and the family she was carrying for wanted her to have an abortion.  she chose not to.  you'll have to read the whole thing to understand all of it.

for whatever reason, i made the huge mistake of reading some of the comments after the article.  if you chose not to do that, please DO NOT go back and read them now.  i'm pretty sure part of my heart got ripped from my chest.  the gist of most of the comments were that this surrogate mother was selfish and this child will spend her life suffering because of her.
i know that i stand on one side of a fence when it comes to life.  i believe in it.  all of it.  i believe it has value.  i believe every person has worth.  i'm also aware that there are people who believe that it should be an individuals choice.  and i think that was where a lot of the people who commented were.  however, i can't quite follow how they got from, 'it's an individuals choice' to 'she made the wrong choice.'  that seems more like you are still trying to make someone else make the same choice you would have-the very thing they are against.
and just to clear some things up, my belief in life came about before i became a christian.  my best friend had an abortion.  thirteen years later her heart still aches for that baby, and the choice she made.  this was the reason i chose to believe in life.  i have had too many conversations with her to believe that the idea of choice is one made without lifelong ramifications.
i also will put out there that my belief in life does not have me standing outside of abortion clinics picketing.  i'm not going to pro-life rallies.  i'm not condemning women who have made the heart wrenching choice to have an abortion.  i am adopting children, attempting to walk alongside single parents who made the choice of life, attempting to love and speak truth over women who hurt from their past choice, and trying to work on the social justice side.  because i think a belief in life having value, stands not just for the unborn, but also for the children who's parents need helping buying groceries,  the parents who need help paying rent to raise their child(ren), the person who is struggling with mental illness and does not have health insurance, or the means or access to the care needed to help them.  i believe all of life has value.
here in america we have a very small list of things we value.  intelligence.  beauty.  strength.  being the best.  making a lot of money/owning nice things.  if you are anything other than this, your assessment will come in as anywhere from less worthy to completely worthless.
i had a conversation with a mom the other day who's son had an assessment at school.  she was not surprised by what she found out; academics are not his greatest strength.  but she wanted to come to his defense immediately because all of the things he is great at were left out of that assessment.  sure, he may not be the next ceo of a company.  he may not be a doctor or lawyer.  but this boy lives life passionately.  his heart and compassion are unrivaled by other children his age.  he has been praying for shilo regularly for over a year now.  on his own.  but that doesn't fit into the list of things that are what gives a person worth.
i have great fear for my oldest daughter and what her future holds.  she is intelligent.  she is beautiful.  she gets told these things often.  and we try to make certain that is not what her identity is wrapped up in.  because she could end up with a brain tumor that takes away that intelligence.  and she could end up in dermal tumors, that while it doesn't take away her beauty, will make others redefine her, because she will no longer fit into the box of what we consider beauty.  even being adopted often makes others respond as if her worth is less.  this girl, she is super funny.  she has more energy than any other four year old i've ever met.  she loves to help take care of her sister.  her worth is more than any list i will ever be able to make.

and my little.  well, 92% of people who find out their carrying a child like her choose to abort.  most of the time they say things about the suffering the child would experience, and how hard their lives are.  as shilo's mama i can tell you that she has been through a lot medically.  but suffering is not a word i would use to describe her.  easy going, strong willed, funny, loving, and intelligent (even if it doesn't fit in the intelligent box that others would use) are the words that come to mind for her.  as she was lying in the hospital a year ago, with a tube down her throat, and multiple wires hooked to her, i still wouldn't have used the word suffering.  i would've said that she was a fighter.  multiple kids who have had less than her didn't make it.  and somehow, she is not only alive, but a thriving little girl who likes to drop her toys off of her high chair to see what you're going to do about it.

so what makes a person worthy of life?  who get to make that choice?  and, when, did we as a society, get to start deciding that another person is suffering? i know a lot of people who's lives don't make the list of 'valuable' above.  i have yet to meet a person who does not have worth.

buddy walk.

raise your hand if you know what the buddy walk is.  i'm betting the only people raising their hand know someone with Down syndrome.
the buddy walk, in indiana, takes place in indianapolis every year.  all the proceeds benefit Down syndrome indiana.  this is the statewide organization that does outreach to people who have Down syndrome, families who have little one's, and people who find themselves getting the news prenatally.
although the national Down syndrome adoption network (the organization that connected shilo's birth mother to us) isn't part of the indiana chapter, it is because of each state's chapter that woman with prenatal diagnoses are able to get more accurate and up to date information that what is often told to them at diagnoses.  they also are able to connect to other families who are already walking the path of raising a little with Ds.
the other thing they are able to do, is encourage parents who say, we don't want to have an abortion, but we really are certain that we are unable to raise a child with special needs.  and voila, they are able to be connected (because all of the chapters across the u.s. can connect with each other) the the ndsan, and talk through the options and choices that are available for placing a little one with a family prepared to raise a little one with Ds.

so as you can probably imagine, we are raising money for Down syndrome indiana, and participating in the walk.  we actually went last year, with some families we had met and been talking to about Down syndrome, and how it had affected their lives.  but this year we get to go with our awesome little in tow.  and she'll be surrounded by so many other people with that third copy of the twenty first chromosome, just like she has.
i set my goal low because i wasn't certain what to set it as honestly, and quickly surpassed the goal (and increased it as a result) and would love for people to give more.  again, none of this money is for us.  it all goes directly to Ds indiana.  feel free to share this blog post, the link to shilo's page, or add her giving button to your blog (if i can figure out how to add it to mine).

without further ado:  shilo's buddy walk giving page (she is part of a team called, 'buddy's beauties' with ten other girlies that also have Ds.  you should check out their pages as well.  lots of those families are the ones that have answered questions, visited, and encouraged through our ups and downs with shilo.)

i'm excited to see how much we bring in for a great organization!  if you are near indianapolis on october 13th, you should come to white river state park, and walk along the canal with us (and a billion other people).  you could meet my two cute kids and, as abigail likes to say, you could watch shilo, 'making nuts.'  (abigail's version when shilo gets wild and crazy with a toy.  i would saying she's going nuts, abigail would say she's making nuts.)

A new test for Down syndrome.

What if there was a test during pregnancy that let you know that your child would later be in a terrible car accident and become completely incapacitated?  That's unrealistic right.  Well, would you want to know if your child was going to struggle with depression and suicidal issues in the future?  What would your choice be if you could know that down the road your little one will have MS, ALS, Alzheimer's, cancer or the other host of disorders and diseases that abound?  Would you choose to continue the pregnancy?  Would you end the life growing inside of you because that child was going to 'suffer' in 30, 40, or 50 years with one of these disorders?

My daughter has a genetic disorder.  NF1 is a genetic mutation of the 17th chromosome.  While it can mean some hardships in her life, it is also her genetic make-up, and effects who she is, and what she looks like.  I am extremely thankful that this wasn't known about before birth, nor is it common to test for it (a parent who already has it can request the testing).  I like my daughter.  I like her genetic make-up.  I DO NOT believe that her 17th chromosome being different than mine is something that needs to be 'fixed.'  I hope and pray that some of the things that can come along with NF can be treated or cured.  I don't want to change my little girl.

Recently a study came out talking about how parents, sibling, and people with Down syndrome perceived their lives as a result of Down syndrome.  You can read through the numbers on the links I provided, but I will sum it up for you:  these families are happy.  Divorce rates are lower.  Siblings, overwhelmingly, said they were better people as a result of having a sibling with Ds.  The study showed a great picture of joy that often surrounds the families of children who have Ds.

On the heels of the release of this study, comes a new test.  In general when a woman is pregnant there is some basic measurements and such done at an ultrasound that can look for markers of Ds.  There is a blood test they offer as well that assesses your risk through some hormone levels and factors in your maternal age and the like.  If you come back as higher risk in this category, or have some soft markers in the ultra-sound, but nothing definitive, you can, from there, choose to have an amniocentesis.  There is a risk of miscarriage with amnio though so it is often a hard decision.  However, as I've mentioned before, the abortion rate for people who find out they are pregnant with a child with Ds is 90-94%.  That means that for the 6-10 people you might meet that have Ds, 90-96 of their peers are not here.
But because amnio is risky, Sequenom developed a new, more accurate, blood test for Down syndrome.  This testing will increase the amount of woman who have genetic testing done for Ds, increase the amount of Ds diagnoses inutero, and therefore increase the amount of these precious little ones who are being aborted.  The test is supposed to help prevent people from having to have a 'risky' amnio on a 'healthy' child. 
Instead it exacerbates an already large problem to greater proportions.  We have an epidemic on our hands; a genocide that is taking the lives of children, who, if they were allowed to live, would most likely be happy in life, and cause their parents and sibling to feel similarly.  We fight to protect an endangered species of animal.  We fight against the killings and maiming of people in Tanzania that have albinism.  Both of those things are great things to stand up against, but  right here, in our front yard, we do all that we can fight for the 'right' to wipe out a whole people group because of their genetic make-up.

Doctors are known to lean towards the abortion route for expecting parents.  They give this grim diagnoses of what life is like with a child with Down syndrome, DESPITE the fact that studies clearly show that it is not the doom and gloom that most people are lead to believe.  People with Ds are active, wonderful parts or our society.  They grow up to have jobs, some go to college, and some get married.  JUST. LIKE. YOU.  People with Down syndrome have hopes and dreams, they have feelings, they have likes and dislikes.  Yes, they also have an extra chromosome, something many of their parents refer to as being 'chromosomally enhanced', not chromosomally challenged.
Matthew 25:40 states, 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.'  We are taking a vulnerable population, unborn children, with Down syndrome, and trying to prevent them from ever experiencing life outside of the womb.  That's what we are doing for Christ.  We are killing, because we see what we perceive as a weakness; a weakness that the families who experience it have shared does not cause the breakdown of their family.  A weakness, that some families, after experiencing it, go on to adopt another child with Down Syndrome.

'My grace is sufficient for you, for my power is made perfect in weakness.' (2 Corinthians 12:9)  What if we are wiping out a whole group of people who show us Christ in a new and different way; a group of people who are made perfect in their imperfections?
What if we are so excited to see a new and better genetic test that we forget to see these beautiful children?

Emmie.  You can read about her here.

Liddy.  You can read about her here.



Verity, and




Katerina (Katie) are sisters.  You can read about them here.



Jackson.

These children are loved greatly by their families.  Their families are happy, active, and 'typical' families.