Tuesday, March 18, 2014


most of you who read this blog probably know, or have figured out that i'm a Christian.  with that being said, there are still things that some Christians practice that are far beyond my comprehension, and that leave my heart breaking.  some of them I have experienced myself, others I just know of.
one thing in particular is the tendency, of often well meaning Christians, to pray for people with special needs.  i'm talking walking up to someone in a mall that uses a wheelchair, proclaiming complete healing, and then, if it doesn't work, telling that person it is a sin in their life, or their lack of faith that prevents their healing.
thus far, nothing like this has happened to us with our little.  and big's disabilities are far less obvious.  however, I wanted to share a story.  I do so having no idea what this man's intentions were, and not at all saying they were that of the stories like I told above.

a few weeks ago I was at church.  shilo had been in her gait trainer during music dancing a little, and I had just taken her out.  when I stood up, my husband (who runs sound in the back) got my attention and signed to me that the man between him, and me, walking towards us wanted to pray for shilo.  I had never talked to this man before, but knew a little bit of who he was.  I immediately tensed up as he walked towards us, fearing he would pray for her Down syndrome to be cured. (you can read here my thoughts on this, and why I disagree with the idea).
I began silently praying to myself that God would give him the words to pray, and that he would see Shilo for the beautiful little girl she was created to be, Ds and all.  the whole thing lasted only a few moments, and I don't even remember what he specifically prayed.  I do know that it wasn't for her to be healed.  and I do know that when he got to us, he immediately teared up and said, 'oh my goodness, she is just beautiful.'
he talked to my husband afterwards, and said that when he got to us that he was really sort of overtaken by her beauty, and had a hard time talking.  I felt like God showed him, in that moment, that she was just a little girl, fearfully and wonderfully created, in His image.

I've realized having two kiddos with genetic disorders that there are things about the silent and hidden disorders that are hard.  but, there are also hard things about the disorders that are obvious.  many people tell me they are so sorry when they see that shilo has Ds.  they see her as broken.  as less than.
what people fail to realize is that in our family of four, there is not one of us who is more broken than the next.  I bet if you picked apart our genes, Jason and I would have some crazy stuff going on too.  but even more than that, the only thing that differs between shilo, and her extra chromosome, and the rest of the world, is that she wears her differences on an easy to see level.  her almond shaped eyes give her away.
my eyes, on the other hand, hide the hundreds and thousands of things about me that are broken.  the anger I struggle with.  the fact that I often don't sleep well.  my anxiety.  oh my word the anxiety.    there are so many things about me that aren't up to par with most of the rest of the world.  but, when people see me, they think of me as average.
my goal in raising shilo is not to make her blend in.  my goal, is for the world to see her as whole.  complete.  no more broken than any of the rest of us.  most days, my experience is that she's less broken.  she is content.  she is joyful.  she works hard.  she is determined.  she is not easily swayed by others reactions.  she is forgiving.  she loves big.

Saturday, March 15, 2014

'i would've taken him'

there's a news story that's being shared over and over in my facebook news feed right now.  it's the story of a little boy with Down syndrome.  he had a g-tube.  his mom tried, once unsuccessfully, and the second time, successfully, to kill him by putting something in his g-tube.  the first time it was some sort of perfume, when he was a few months old, right before he had heart surgery.  the second time (and the one that killed him) was hand sanitizer.  he was 17 months old.  she told police that she wanted to 'end his suffering.'
the story is heart breaking for about a million reasons.  but, the perplexing part is the comments I see, on the news pages, and on my friend's pages who shared the story.  person, after person, after person writes something along the lines of, 'that's so sad.  I would've taken him.'
if that's really how you feel, then let me share some children, with Down syndrome, that need a home. meet raymear.  he could use a forever family. so could,  noah, and david.

none of those kiddos are tugging at your heart strings?  then feel free to check out reece's rainbow.  they have children from all over the world, in orphanages, who have Down syndrome.  lots of these children will age out of orphanages at some point, and be put in mental institutions where they will likely die within a year. 
we don't have to sit around sad that we didn't show up in time for this little guy.  there are still chances.  there are still children whom you can save from their inevitable deaths, due simply to the fact that they have Down syndrome.  if you have said you would've taken him, then start today, and find another 'him.'  find another child who, for whatever reason, had a first family who said i'm unable to care for this child with Down syndrome. become that child's forever family.  unfortunately, for the first little guy, it's too late.  but for thousands of other children, in the United States, and around the world, there's still hope.

Thursday, March 13, 2014

teaching fear.

little has been getting better and better at walking in her gait trainer.  as a result, we have been taking it everywhere with us.  library.  church.  any time that she could play with peers, I try to drag it along.  I ended up getting a placard for the car so that I could easily maneuver a five year old, carry a toddler, and push the trainer across a parking lot (usually covered in snow and ice right now).
as a result, I want to share something with you.  this isn't because i'm angry.  it's not because I think that everyone should know this already.  it's because, I want others to know this.

your child, can touch my daughter's gait trainer.  they can touch her while she's in it.  i can't speak for all parents, but i imagine if you see a child with some sort of device, all you need to do is say, 'is it okay for my child to touch that?' or even, 'can you explain that to my daughter and i?' 

when you freak out, and pull your child away, or tell him not to touch the gait trainer (or my child), you are teaching fear.  you aren't meaning to, i know.  but, you just told your child that people who are different, and who use different devices, are scary, stay away!  and when you tell them not to look, or stare, you are saying the same thing.  children are curious.  to be quite honest, so are adults (just remember that i expect adults to be able to phrase questions in tactful manners).  and while there are, without doubt, days that i don't really want to answer and advocate, i'll still do it.  i have a whole host of kids who are in love with shilo because we haven't made her off limits.  she's just another kid.
if you let your child look, ask questions, explore, and learn, he will learn that my child is, just another child.  he will learn that she just needs extra help learning to walk.  he might even learn things like why some kids eat through a tube in their stomach instead of their mouths, or about a million other medical devices that children have.  and, without even meaning to, you will have empowered your child.
because one day, your child will be out in the world, and there will be other people who look different, act different, or have different things they use to help them throughout their day.  and it's likely, if you've started very young explaining things, and allowing them to ask questions, that they will step up and be a friend while others are afraid and unsure.

please don't teach fear.