Friday, April 18, 2014

somewhat real life.


we are big fans of lifestyle photography, which just means that we like pictures that show us in a little more day to day type setting over posed, everyone smiling type pictures.  the picture at the tops should be a pretty good indicator of that.
anyway, we hadn't had pictures of our family, like this, taken since shilo was two months old.  but, as shilo has gotten healthier and healthier, I have really wanted some fun photos to document our family.
so, for our Christmas present to each other (ourselves) Jason and I held off buying each other anything, and instead invested in family photos.  I can't post them all, because there are just too many, but they turned out amazing.  they were taken buy kira childer's photogoraphy.  there are some sneak previews she posted on her facebook page, if you want to look through those as well, and i'll share some of our favorites.
a few fun facts about these pictures: 1) they are all taken at our home.  2)  the bugle that appears came from my grandfather's home, who had passed away a few weeks before these were taken.  3) Abigail lost her first tooth the day before pictures which made it even more awesome. 

*these are all copyrighted.  you may not take them from my blog.*
 

















Tuesday, March 18, 2014

broken.

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. 

Friday, February 28, 2014

ebenezer.

my girls have a flare for the dramatic.  some kids break bones or get stitches, mine eat glass, and go into seizures after bumping her head.  it was a crazy chain of events that ended with shilo scaring me more than i have ever been scared.
the brief of it is that shilo fell, hit her head, and went into seizures.  we made a trip to the e.r., and all ended well.  scans were clear.  she did need the emergency med, diastat, used to stop seizures, but it worked so we'll call it a win.
i, on the other hand was left with my mind circling the same question over and over again.  'will hitting her head always trigger seizures?'  she isn't mobile in a way where she injures herself very often, right now.  and, i know that when she becomes that type of mobile, head injuries will abound.

so this afternoon, i was reading in first samuel.  in the seventh chapter, samuel takes a stone and sets it up, naming a 'Ebenezer,' which means 'stone of help,' because, 'thus far the Lord has helped me.'  i love the simplicity of it.  it doesn't feel like this profound faithful statement causing me to put samuel up on a pedestal as someone who is way better at this whole loving God thing than i am.  it was just simply that up until this point in his life, he could see that God had helped him.
and i sat and reflected. i remembered the incredible in pouring of donations so abigail could have a tumor removed.  from friends.  from strangers.  the home that was opened to us while we spent those ten days in chicago.  and the grace of the tumor not being malignant.
i remembered the friends who took abigail when shilo was born, the house that was extended to us in kentucky while we waited on the icpc paperwork so i could leave the state with shilo.
the long hospital stay where friends very willingly watched abigail, came to visit, made decorations for shilo, mowed our yard, fixed our mailbox after it was hit by a snow plow, and loved us more than we could ever know.
and in the past almost two years, since we've been home, i thought of all the times someone has showed up with a mcdonald's coke (my very unhealthy vice) when i've admitted to having a bad day.  i've thought of the kind messages, the friends who have stepped up last minute to help during smaller hospital stays, and the outpouring of love we receive quite often.
and i narrowed it down to today.  the gift of both children sleeping in.  the kind note from my husband, reminding me that i am a great mama, and that the guilt i felt over shilo falling was not necessary.  the drink on my porch to start my day off right, and remind me that i'm loved.  and the people who have called or sent messages to tell us they were praying, thinking of us, and loved us.
i reflected on the fact that for us, often times, the outpouring of God's love comes through people.
right after i read about samuel raising his Ebenezer, the neurologist office called, and confirmed my fear. some kids with epilepsy, go into seizures when they hit their heads.  this could be something we see again and again.
but, all i could think was, 'thus far the Lord has helped me.'

Friday, February 21, 2014

an open apology.

dear papa,

   we are so thankful for you, and all the hard work you do to provide for our family.  we are especially reminded of how hard you work on nights like tonight, when you are working late.  to show our appreciation we made sure there was enough dinner that you could just warm things up quickly when you got home.
  however, there was a problem tonight.  you see, someone, we don't want to single anyone out, ate all of your brussel sprouts.  we are so sorry that you didn't get any.  please forgive us.

love,
your girls.




loving brussel sprouts.

feeling a little ashamed.

Saturday, February 8, 2014

on guarantees.

someone, somewhere, dreams of becoming a parent.  for the first time, for the fifth time.  they picture the beautiful baby that will expand their family.  +1  that day comes.  announcements are made.  cute pictures on facebook, an e-mail.  a phone call.  someone figures out a way to let friends and family know that there is going to be a child.
dreams are had. he will sleep peacefully during newborn photos with his little naked buns up in the air, and that cute hat on his head that was purchased on etsy.  all will be right in the world as his parents blissfully smell his head, rock him to sleep, and spend each day staring at him.
once baby is here, reality may shift a little.  new parents realize that their little just peed on mom's last clean outfit during the newborn shoot.  he doesn't sleep at night time, like a normal person.  he cries.  for no reason.  but, still, parents are in love.  baby is well cared for, and plans are made for another little.

so when people hear our stories, adoption, special needs, doctors, hospital stays, and the potential of a lifetime of parenting, they sigh.  'i could never....'   the list is endless.  and it's not worth hashing out all the reasons this phrase isn't true.  here's what i want to know.
where did you get your guarantee at?  did you purchase it somewhere?  did the ob office sell them, and i missed out on that because we adopted our kids? because from my own personal experiences, i would venture to say that just because your children are healthy now, doesn't mean that you won't someday be dealing with some of the same things i am.
i have multiple friends who were 'i could never-ing' only to find out that their child had a brain tumor, or cancer, or a genetic disorder that doesn't become apparent until slightly later in life.  and suddenly they were parenting a kid with special needs, doing long hospital stays, and facing the possibility of parenting their child for the rest of their lives.
somehow, we believe we have control over these sort of things.  the only people who those things happen to are those who didn't eat right in pregnancy, or exposed their children to something they shouldn't have, and on and on and on.  we judge our way out of anything bad ever happening to us.  we will not be faced with the possibility of a lifetime of parenting.  our children will grow up, go to college, get married, have children of their own, and we will travel and see the world after retirement.
but, here's the deal.  control is an illusion. you can hold as tight as you would like, but it's like trying to hold air.  there's nothing there to hold onto.  all you can do is take the world, one day at a time, and pray for the grace you need to face whatever lies ahead.  because husbands get cancer, and children get brain tumors, and there is a list of a million more things that could go wrong.
so please, stop telling me, and a million other people like me, that you couldn't do what i am.  stop making me a patron saint.  for today, our family is healthy.  we're doing well. and for that we are thankful.  because tomorrow holds no guarantees.  not for you.  not for us.  and the only thing different from my family and yours is that i am painfully aware of this truth.