come on in.

daily, my newsfeed is filled with links titled '10 things special need parents wish you knew' and 'how to help your friend who's child is autistic' and so on and so forth. (I will admit to writing a 10 things list here , although not for how to be my friend.)  I often click them just to see how I relate.  most of the time, I don't.  and, I get annoyed at how much they seem to separate parenting from special needs parenting.
I HATE, with a passion, when people refer to me as 'adoptive mom.'  I correct them.  i'm mom.  adoption was something that took place a few years ago, but doesn't define me as a parent.  i'm certain that parenting my children is the same as parenting most children who are 5 and 2.
and, similarly, I get annoyed at being a 'special needs mom.'  it's a little different because my kids do add things into the mix that some others don't deal with.  but, my actual parenting is just parenting.  when I go to story time, I just want to hang out and be one of the moms instead of the 'special mom.'
  today, we went to the local children's museum to escape the rainy grouchiness that was encompassing our house.  outside of the building a road is closed because they are preparing to build a new hotel that will employ people with special needs. (the irony was not lost on me) I parked in a spot for people with disabilities so that I could take shilo's gait trainer in for her.  I got out, put her in the stroller, and pushed it while I pulled the trainer behind me until we got inside.  did I mention it was raining?  pretty hard at this point?  turns out the sidewalk and road are closed.  I can't get to the ramps for anything.  I end up having to walk with my children and gear in the road, trying to stay far enough over to avoid cars.  I hit Abigail with the gait trainer multiple times by accident.  she was pretty frustrated.  I was ready to cuss, and we were all soaked by the time I finally found a ramp to use.
it didn't get much better after that-the door openers didn't work, and when I got inside, I realized that while the building met ada standards, that was about as far as it went.  shilo couldn't even play in the water table (nor could a child in a wheelchair) unless I stood and held her up to it.  it's her favorite thing to do at places like this, and she was frustrated.  I was frustrated beyond belief that trying to do something fun with my kids, and allow shilo freedom, was so much more work for me, and in the end, shilo could do very little.
suddenly, all those readings that had frustrated me went through my head, and I realized that I do have things as a parent that my friends of typical kids can't understand.  they don't think twice about parking, and accessibility.  they have no idea what it's like to need both a stroller and a gait trainer because it's guaranteed that your child will get too tired to continue to walk at some point.  their kids run freely and play with things while I have to take mine in and out, in and out to reach things, and navigate steps.
however, I have some amazing friends.  and while they might not understand those things, if I told them this story, they would be aware.  they would agree with how much that sucks, and they would likely even be willing to help me advocate to change some of those things.  the thing about parenting is that we all have some sort of battles.  there's no use arguing over harder or easier.  it's a journey we're all on together.  find people who will walk it with you, love you, and not judge you, even if their journey is much different.  help them understand the differences, and allow them to walk through the hard things with you.  most of the time, that's what they want to do if you'll just tell them how.  not in list form.  not for the whole world, because my needs, are much different than other parents that have children with special needs.  no, just tell them.  talk to them.  let them in.

first mommies.

on a Thursday morning, I stood next to her in the nicu, looking at her daughter.  our daughter.  I hugged her and thanked her.  but there were no words adequate for what had just happened.

on a Tuesday night, I sat across the table from her, and answered question after question about us, and our family.  I can still see the pain in her eyes as she tried to interview a family to raise her daughter.

birth mothers are often misunderstood.  most of the adoption questions I get asked stem around them.  how old they were.  what sort of 'problems' they had.  how much better off their child is with me.  the comments go on and on.
it's easy to see these women, and villainize them.  we want to be certain to distance ourselves from someone who could 'do something so awful' 'be so selfish' 'give up her kid.'  we want to make certain that we find all their flaws that put them in a place where they were able to 'walk away from their kid.'

and, in all honesty, you are partly right.  you could never do what they did.  but, it's not because you are better than them.  it's because they just made the most selfless choice any woman can ever make.  it's the choice to place their child in another families arms, simply because they want what's best for him.  this is not to say that placing a child is always what's best.  but, for my two daughters, I have no doubt that their mothers love them, and were trying to give them the best that they could.  it spurs me on, on days that parenting drags me down, and I want to give up.

the Saturday before mother's day is birth mother's day.  I want to say happy birth mother's day to my children's first mommies, and to the women everywhere who loved their child enough to carry him for nine months, give him a kiss goodbye, and step back so that he can be with the family you chose. 

your choice is the only reason that I get to celebrate on sunday morning.  thank you.


 

 

from the bottom of my very thankful mama's heart, happy birth mother's day!

happy heart day.

two year ago we got up early and talked to a bright eyed little.  we prayed over her.  we sat anxiously.

we walked with the nurses as they wheeled her from her home of two months to the operation room.  we kissed her goodbye, and sat for nine hours, waiting to see her again.

afterwards there were more tubes and wired than there had been before, and she was on a medicine to paralyze her because her sternum was still open.

but, much to everyone's surprise she did great, and they took her back to surgery and closed her sternum.

a week later, after nine weeks and one day, she came off of the vent.  for the first time in over two months she no longer had a tube in her throat. 

...and it would be really easy to focus on the hardness of that part of our lives.  but, two years later, i'd much rather share who shilo is today.  a two and a half year old, full of life, joy, and orneriness.  she can communicate very well, by signing.  she is strong willed.  she has learned to use the potty all the time.  she is madly in love with her big sister.  Jason and I took some time this year to go back and read all of the messages we got that day, all the people who were praying, and sharing our story so that others could pray.  and instead of feeling sad, all I could feel was the love of a community who surrounded us beautifully during the hardest time in our lives, and continue to do so now.  so today, we celebrate two years with a fixed heart.  and we rejoice at the little God blessed us with.

happy heart day little.  we love you greatly!!

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.*

 

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.

'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.

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.