One.

I remember that morning.  Walking downstairs, pulling out the last pregnancy test, and for my own peace of mind, peeing on it.  The results read positive immediately as the liquid soaked across the strip.  I had never gotten a positive.  In our almost ten years of marriage, and countless test, there had never even been a possible hint of a second line.
My whole pregnancy, I resisted the urge to take more test. Just to see it again. I wondered if I'd ever have another positive test, or if we'd go back to 'unable to get pregnant.'  It didn't end up mattering because we made the permanent decision after things went horribly, to prevent any future pregnancies.  The risks for my life and our sons were too much for us to take again.

That test. That one and only positive pregnancy test, it resides in my underwear drawer. I still look at it occasionally.  I try to figure out how I feel about our whole journey.  It's such a mixed up thing that I can't think on it too long. Most of the time.
But, even with the aforementioned permanent procedure, I know there's still a small possibility.  Occasionally, things will play out and I'll get anxious enough to take another test.  And, every time, despite logical me wanting it to be negative, I whisper, 'Be positive, be positive.'

For a long time I refused to call myself infertile.  And, I certainly didn't struggle with my infertility.  It just was. We were content with our children being adopted.  I had long since stopped wondering what it might be like to have biological children.  It didn't matter to me.
The whole and honest truth is that in the parenting, the day in and day out stuff, it doesn't matter. They're all amazing, and silly. Maddening, hard, and wonderful.  They each come with their very own set of incredible gifts and challenges for us as parents.

So my longing is separate.  My longing is for that of feeling like I finally belonged as a woman.  I didn't feel excluded before so my words may be hard to completely understand.  But, it's the best I can do with the words I have available.
If I'm completely honest, it's the longing to redeem the things I feel like I still missed out on.  Asher never had hiccups in utero that I felt.  He never woke me up moving or kicking.  The further along I got, the less I felt him move (likely from his small size, my ample fluid, and his low muscle tone).  The birth. Even if I could just be awake and have my husband in the room, that would be enough for me.  To hear his first cries.  To see him still connected to me through his umbilical cord.

So I keep that test.  I moved it to our new house.  Jason asked about it.  He thought it seemed weird.  And, a little gross.  It is.  I know this.  I hope that someday I'll be able to just take a picture of it, and throw the actual plastic test away.  But, for right now, I need it.  I need it tucked in that drawer, reminding me, that even if it was only that one time, I didn't carry the label of 'infertile.'  And, when my heart longs to do it again, as it occasionally does, I can look at it, hold it, and grieve the way things went. I can wonder for a bit if things hadn't gone so wrong, if we might have gotten to experience it again.  Then, I can tuck it away safely, with all of my other hopes for what I wanted things to turn out like, wipe the tears, and move on with my new set of hopes and dreams.

Three for three.

When you've spent much time around the world of special needs, you learn a few things.  One of them is, people don't tend to have lots of random things going on, and none of them be connected.  There's usually an overarching diagnoses.  A genetic disorder.  Something.
So with each new thing that has come up with tiny, I have known, the day was coming when we would get our third diagnoses.  A couple of months ago, after tons of hours of researching, and reading medical journals, I came to the conclusion of what I thought it was. 
I mentioned it at our ortho appointment, and he sort of agreed he fit the criteria, but wasn't interested in diagnosing him.  It was frustrating for me because I want answers at this point.  It helps to know which way to go.  It alleviates fears of bigger things.  It makes state insurance for kids with special needs easier. 

Yesterday morning we made our second trip to the developmental pediatrician.  I made the appointment for stupid early in the morning so we could see the actual doctor.  Then, I showed up, and somehow they had made the appointment with a nurse practitioner.  I'm not a great person when sleep deprived, and I nearly fell apart.
It really turned out to be the best thing.  The n.p. we saw had seen Abigail five or so years ago.  She remembered us.  I listed our 'things we have noticed' and she immediately said, 'sounds like we should see a geneticist.'  I asked at our first appointment six months ago.  I didn't even have to ask this time.

There was lots more to it.  But, I won't wade you through all of that.  We have a diagnosis.  It will be confirmed with a geneticist.  It is what I thought it was going to be.  And, it was nice to put all of the pieces together.

So Asher's list of medical junk:  single umbilical artery, vertebrae anomalies causing congenital scoliosis, lipoma at the base of the spinal cord, genitourinary defect, hydronephrosis (this has already resolved for him, but is still included), congenital heart defect (it is very small and doesn't cause any issues), shoulder girdle weakness, clinodactyly in a couple of fingers and toes, and thumbs that tuck under.  It's possible that after a little more upcoming testing there may be more added to the list, but these are the knowns for now.

Asher has what is called VACTERL association.  It is not a genetic disorder.  It is a group of congenital defects that often occur together.  You only have to have three letters for diagnoses.  There are some other defects that can happen with it, but aren't part of the diagnostic criteria.
V-vertebrae anomalies
A-anal atresia
C-cardiac
TE-trachea-esophageal fistula
R-renal
L-limb deformities

Asher has V,C,R, and L.  Sometimes there is an S on the end, that isn't part of the diagnoses, but stands for single umbilical artery.  The genitourinary defects are sometimes linked with the A, but also not part of the actual diagnoses criteria.  And, the lipoma also isn't uncommon with all of it, but not part of the diagnostic criteria.
We will see a geneticist because sometimes there are genetic disorders with lots of these things, and they'll want to make sure nothing is being missed.  It's possible that the diagnoses could change, but it's unlikely at this point. 

Even with all of that, he is doing great.  He's a very active almost fourteen month old. He's trying to stand on his own, and has taken a few steps.  He love blueberries and oranges, black beans, and olives.  He has started to give lots of hugs and kisses voluntarily.  He smiles at everyone.  Our lives are so much better with him in them. 

myself, when i am real.

a year ago I was starting to feel it.  the wounds were scarring over nicely, and the pain had diminished.  I could look at pictures of our past few years without crying.  I could pray.  that was a big one for me. the feeling that God had abandoned me in a hospital room for three months was fading.
but, everything backed up again with the birth of my son.  I've spent the months asking why, and knowing i'll likely never get an answer. the distance returned.  the trust diminished.  I can happily spit out the things people want to hear so they aren't uncomfortable, 'we are just so thankful that he's here and okay.'
and, it's true.  I am thankful.  but, i'm also angry.  and sad. and frustrated.  and I want more than anything to know God.  to feel Him.  to think He might be hearing me when I ask for things.  but, not just hearing me.  responding to me.  wanting to give me good things.  no more hard please.  I need a big long break from hard.
the past few weeks have been wrought with ugly parenting things with my big.  I never see them coming, and I have no idea if we are doing anything right when these things hit.  so tonight, I climbed up the ladder to her bed, and laid next to her.  I sang to her.  she sang to me.  she talked about things that seem so small from my adult world.  they're significant to her.  so I listened. 
then, she rolled over, sucked her thumb, and rubbed her lambie between her fingers.  I rubbed her back and silently thought.  or prayed.  or maybe those two things are one in the same.  I thought about how angry I am about hospital stays.  how I just keep cycling through the same things over and over.  and, maybe, she's angry about hospital stays too.  but, she's six.  and she doesn't know exactly how to say that.  so it looks different than it does for me.
I thought about how I can go to God over and over again, with my ugly thoughts, and my frustrations with Him, and how He doesn't ever seem to lose his temper.  He just lets me be angry.  and I pictured him rubbing my back as I fall asleep at the end of a day where I have spent the whole day stomping my feet and yelling at Him.  how He always seems to be there when I look back at things, right in the middle of it all, sustaining me.  and I told Him that I was trying.  trying to figure out who He was.  and that I would continue to seek, pursue, and run after Him, even on the days where i'm not sure how I feel about Him.  and I told Him that was really hard for me because I was afraid that He might abandon me.  get angry and decide i'm not worth the effort. or that He already had.
I eventually kissed big on the head and told her she was my favorite six year old in the whole world wide.  and I thanked her for singing to me.  the song she sang, was a kids song, by an artist named Justin Roberts.  lots of his stuff is really silly.  but, for some reason, she picked a song from one of his c.d.'s that is taken from old testament stories.  specifically, this song was taken from job. as if her lips were singing a soothing balm to a broken heart.

'where were you, when I laid the earth's foundation?
where were you, when I set the stars in space?
and they all sang together.
they all sang together up in space.
allelu, allelu, alleleuia.'

(if you want to hear the whole song, this is not him singing it, but it has the words with it)

someday, all things will be made right.  maybe, i'll even get to see the bigger plan that played into the last three years being hard.  but, for now, this doesn't wrap up neatly.  things are hard.  and, I don't want to act like it's all okay.  I struggle.  if you struggle too, that's okay.  if you're tired of hearing pat answers, and warding off those who blame you so that they can continue to believe that really hard things are from a lack of faith, come join me in.  it's hard here.  but, there are lots of really good days.  and laughter abounds because I use sarcasm to get through the hard ones.

post-partum body.

i didn't shower for the first few days. multiple nurses came in to check my incision and told me i could take the dressing off.  two days in a row the doctor came in and told me the same thing, and that i was free to shower.  but, i couldn't.  i was too scared.  not of pain.  i just didn't want to see it.  the place my son had been removed from my body.  it was new.  it was foreign, and it had not been a part of me the last time i had seen myself naked.
on the morning i was ready, i slowly peeled the dressing off, and stood in front of the mirror, staring.  there were still steri-strips so it wasn't a great view of what was underneath, but i got the gist of it.  i don't know what i had been afraid of.  it was just a line, cut just above my pubic bone, and well below my underwear line.  it was healing nicely. 

it has sort of become a routine now.  after i shower, i stand in front of the mirror for a while.  i stare at the reflection of my body.  it's a new reflection, not one i've ever known.  i don't feel shame.  i just want to get to know this new me a little better. 
my breast are the largest they've ever been, and covered in stretch marks.  they rapidly went from an a cup to a d cup during pregnancy, and the little lines that have formed on them show that growth.  i'm still amazed by the fact that they alone are able to nourish my son.
my stomach has decreased greatly in size, but is still soft, and much rounder than it was before a life formed inside of it.  the softness of it seems fitting for holding a tiny one against me to nurse, and snuggling up with him as he drifts off with a  belly full and milk on the corner of his mouth.
and just like the first time, i stare at my scar.  there are no more steri-strips.  just a pinkish line that runs across my lower abdomen.  i run my fingers over it again and again. there are still nerves that haven't regained feeling in it yet.  it makes touching it an odd feeling.  i move my hands away and stare.  i feel like society would have me feel ashamed of this scar.  i was unable to give birth the way most women do.  but, there is no shame.  this scar, this pink line that continues to heal, saved my son's life.  i love it, and feel some sorrow that it will always be hidden beneath clothes. 
i stare at my face and my legs.  they were very swollen by the time tiny came.  i gained around twenty pounds in the last three weeks of my pregnancy.  i had gained around twenty five in my first thirty three weeks.  looking at them now it's hard to believe or imagine where they were less than five weeks ago.
i'm still amazed at my body.  i'm amazed at how it grew life, and continues to sustain it.  i'm amazed at how very much went wrong, how very sick i was, and how quickly it has recovered.  i'm falling in love with my new self.  whenever someone says, 'you look great' i agree.  because i feel great.  it's unlikely that i will ever look like i did before pregnancy.  i'm okay with that.  i also will continue to sing the praises of other women and their incredible bodies. 

...as long as the baby is healthy.

anyone who has ever been pregnant has had this conversation:
'do you know what you are having?'
'not yet?'
'do you want a boy or a girl?'
'it doesn't matter to me.'
'as long as it's healthy....'

the last line actually makes me cringe.  now, of course I don't want there to be something that causes my child to be unhealthy.  but, when I hear 'as long as it's healthy' it feels a little bit like I would accept either gender, but not if they had any sort of disorder, or birth defect, or whatever any of the other millions of things are that can go wrong in pregnancy.
in our house, we will be thankful that we have the opportunity to parent another child.  if it's a boy, well hooray for a whole new adventure.  if it's a girl, *sigh of relief* I already feel equipped to navigate this boat (plus I have lots of clothes).  if the baby is anything less than 100% healthy, we will be just as thankful for his or her life.
I know that when people say this, they mean well.  they are not being rude.  I'm not angry at them.  but, honestly, it still makes me feel like my other two girls are seen as less desirable.  too many of my friends have buried their children.  some of them gave birth to children who were born sleeping.  some of them only got to spend minutes or hours with their children.   and, if you ask them, most of them would tell you that they wouldn't have been upset about dealing with a disorder.  they just want their child.  not a boy.  not a girl.  not a healthy baby.  just their child.
as we near the time period when we would be able to find out what gender our baby will be, we do it knowing full well that we have not been given any sort of guarantees about this child, and the health of it.  neither of our daughter's genetic disorders were 'caused' by anything more than a sperm or egg that had a chromosome on it that was a little wonky. it was nothing that either of their parents did.  and, as a result, we have just as much of a chance of wonky chromosomes as their parents did. 
so, what do we want?  we want to get to parent this child.  but, we make no big plans about who he or she will be.  we will wait, and rejoice in the child we end up with.  boy.  girl.  typical.  just as weird as the rest of us.  we will love our third child.

and then there were three.

mostly, I've felt like I just can't do it.  i'm already tired.  i'm already stretched.  how could I ever add another kid to this mix?  will I ever sleep?  will my other kids end up getting the short end of the stick for a while?  I just can't imagine adding more to what already feels like chaos.

and, then, I look up and the sunlight and shadows take turns dancing across her beads and face.  she concentrates on getting the next Lincoln log in just the right spot.  she adds chairs and beds, a fireplace, and a table.  she shares the details of the little world she has made. it seems impossible that she hasn't always been this age.  she was once a very little, little.  i soak up the moment and look forward to sharing these things with another child.

all the while, little is snuggled under a blanket, in the crook of my right elbow, sleeping.  she just couldn't make it until nap time, and i have not the heart to wake her.  i sit quietly feeling each breath she takes in and lets back out. i think of how much closer she is to walking, and how she will no longer feel like a baby to me when that happens.  i brush the hairs out of her face, and become thankful that soon, i'll have another little to sleep in my arms.

and, i remember how with each child, God has given me a verse.  and, they have fit perfectly into what His plans are for our lives, for our children's lives, and for our family.  so i try hard to focus on the verses He gave me for this little instead of the exhaustion and sickness i am experiencing.  i remember that while i will likely deal with the same struggles with tiny, of learning boundaries, and respect, and kindness, that it won't be in the first day, or week, or even month of life.  i'll have time to settle into the role of mother of three.
and, so to celebrate, and look forward to the joy that looms ahead, i buy a onesie.  a teeny tiny one that seems like it could never fit a real live person.  and i lay it out, and look at it, reminding me of days to come filled with toothless smiles, first times for all sorts of new things, and a sleeping baby on my chest.

clearing a few things up.

as I suspected, I have already heard quite a few cringe worthy things about being pregnant, and how it relates to our two other girls being adopted.  i'm barely showing folks.  I can't help but fear for what lies ahead, and what my two amazing girls are going to hear.  so i'm going to start by clearing the air a little bit, here.

first, and foremost, the sentence:  if you had only waited.....
you may follow that sentiment with, I wouldn't have my two daughters.  no regrets.  nothing but thankfulness for the children we have.  and had we known we were going to get pregnant ten years later, we still would have adopted first.  there's not a whole lot I can think of that would be sadder than not having my two daughters.

 

 

 

second, I didn't get it easier the first two times.  yes, carrying a child is much different than adoption.  and my first trimester has been fairly miserable in all honesty.  but so was the three year wait for Abigail.  and so was being stuck in another state with my daughter waiting on the powers that be to send paperwork from point a to point b so I could cross state lines.  so yes, pregnancy is hard. and I know there are some harder things to come.  but, adoption has it's pains as well. 



and last, my pregnancy is NOT a reward.  it's not what I get for adopting 'those kids.'  the gift I got for adopting these two, is getting to be their mother, and them getting to be my daughters.  make no mistake that the child growing inside of me is NOT more of a blessing than the first two who listened to someone else's heart beat for the first nine months.  my love for this child is NOT  more than my two daughters. 

God has given me three babies.  three children.  three gifts.  none of them are a reward for what I have done, lest I would never have been a mother.  they are, all three, my children.  in the end, it turns out that the person who's uterus the child grew in has no affect for the love I feel for them.

fix you.

these words have been going through my head today after a conversation i had this morning.  they are from the song 'fix you' by coldplay:

   'when you try your best but you don't succeed.

    when you get what you want but not what you need...
    ...and the tears come streaming down your face.
    when you lose something you can't replace...
    ...and i will try to fix you.'

those are the specific words from the song that apply to this situation.

so here's the scene-with my thought process interjected. i STILL suck at knowing what to say in these situations and to these questions.  mostly because lots of them actually sting so much that no matter how many times i've heard it, it catches me off guard.

sitting with another mom who i see somewhat regularly at a play time event i go to locally.  she is asking some questions about shilo, and her feeding tube.  somehow formula comes up which leads to a discussion on the fact that both of my girls were adopted.  i will admit that i'm always surprised when people are surprised by this.  anyway here's the brief of how it went.

'how old were they when you got them.'
'i was in the room when abigail was born, and we met shilo when she was four days.'
'you were in the room when abigail was born?  didn't her mom want her?'
i come close to tears every time someone asks this question.  'want her?'  of course she wanted her.  she wanted her, and she wanted what she believed to be best for her at that time.  so she asked jason and i to parent her.  my actual response.
'yes, she wanted her.  and she knew she couldn't take care of her like she wanted to.  so she placed her with us.'
'do you still see her.'
'yes.'
'and that's fine?  i mean it works.'
'yes.'
'and shilo was four days when you met her.'
'yes.  we found out about her after she was born. her mom had planned to place before that, but one family backed out, and she went into labor early.'
'did you know she was going to have Down syndrome.'
'yes. we intentionally set out to adopt a child with Down syndrome.'
(five minutes of how awesome that is, and how very hard that must be-countered with my go to of how not awesome it is, and how not hard it is).

'so do you want to have kids of your own?'
'well, these are my own.  but my husband and i don't care if we get pregnant or not.'
'you still could.  you are young.'
'i'm 31 and we've been married for nine years.  it seems unlikely at this point.

this is the point where things go from awkward to the feeling that others see me, and our family as something to be fixed. the next few minutes are spent telling me how i'm still young,and i could still have kids of my own.  then the stories start in on other people she knew who were married 800 years and then they got pregnant, and so on and so forth.  it's this entourage of how everything is going to be okay, we will be fixed when we just have 'a child of our own.'
it's the idea that we tried, and we didn't succeed.  we got what we wanted (children) but not what we needed (biological children).  we obviously spend our days crying and greiving because we haven't gotten pregnant, and we feel like we've lost this amazing universal experience that can't be replaced-even with the second rate choice of adoption.  so of course, along comes the world with all of their ideas, suggestions, and so on, on ways we might be able to become 'real parents' someday.

we're not broken.  we aren't sad that our family of four came to be because of adoption.  they aren't a second choice parenting option.  i wish i had the ability in these situations to say what i really mean.  but, i'm often working hard to keep my emotions in check, and don't get out that we are more than content with where we are.  maybe, just maybe, we aren't missing out on the awesome experience of being biological parents.  maybe you are missing out on the incredible experience of getting to adopt.  i mean, our girls' stories are way better than birth stories, in my opinion. or, perhaps, families are formed in lots of different ways, and we can just celebrate that instead of viewing our way as the only logical way anyone would ever want to have children.

at very least, please, stop trying to fix us.  we're pretty happy with what we have.

    

infertile. life-giver.

'women hang their superhero capes on the hook of life-giver. sometimes it's hard not to feel broken.'  -fpfg

every now and then i'm in a crowd.  at a girls night.  stumble into a conversations.  and i sit quietly.  or i back out, trying to go unnoticed.  i don't want to hear about it.  i don't want to talk about it.  there's a word that goes with my body that i don't ever use.  other people may say it.  but i don't feel it.  and so i don't use it as my description.
infertile.
i have friends who say they are infertile.  the struggle (or struggled) with infertility.  i wrestled for a minute.  but i don't struggle with it.  i love the children we have been given. i am okay with the fact that all of my children will grow in the womb of another woman.  and so i don't use the word infertile to describe us.
but, God help me, when i hear those warrior stories of childbirth, it does something to my heart.  it whispers something in my ear.
'you are less than.  you can't bring forth life. you are broken.  you are not a complete woman.'
and i read this post a while back. it's the only post about infertility that has ever brought me to tears.  most of the time i relate to nothing.  numbers.  hormones.  shots.  i did none of that.  i have no desire to go through the pain of it. emotional. or physical.
but feeling like God had a different plan for my life.  absolutely.  i can relate to that to the very depth of my soul.  my heart rejoices in this.
as i sit silently in those conversations.  listening.  feeling awkward.  i realize i don't have a war story.  i didn't fight and use my body to bring my children into this world.  instead, i filled out paperwork.  and sat through interviews.  i had my house looked at to make certain it was an acceptable environment.  i made a profile in hopes that some woman who was pregnant might read it and find me worthy of parenting her child.

and i think back to sitting in mcdonald's with my big's tummy mommy.  laughing.  her amazed at my ability to put away a big mac.  me amazed, at her ability to selflessly ask me to be her 'baby mama.' i think of her smile.  her heart.  and her large round abdomen.  i remember the birth, the hospital stay, and the goodbye.  i definitely remember the goodbye.
i have the vivid picture of sitting in a mexican restaurant with little's tummy mommy.  her mom by her side.  how nervous she was.  how much she wanted us to understand why she was making this choice.  and how her eyes stayed wet with tears the whole time we were there.

so forgive me if i seem uninterested in your birth story.  don't be hurt by it.  i'm trying to live in a place where i remember what big and little's mommy's saw in me. these women saw something that so many others can't.  they don't see me as broken.  they don't see me as infertile.  they see me as a life-giver. to the children they gave life to.

things that are needed.

i have waited quite some time to share this first story.  i could not, for so many reasons, put these words out there for the world to read. i have fear that someone will read them and use them as fuel in a fire i'm not interested in being part of. please do not use my words for that.  and do not respond with hatred or malice for the one who originally said them.  the way we change others is love.  but they need to be shared so you can understand something bigger.  so read the story, but please don't comment on that one small part of what i'm trying to share here.

jason, shilo, and i sat in an emergency room.  shilo was sick.  there were lots of things going on around us.  a doctor walked in.  the attending doctor, not the residents or fellows who had been caring for her.  she asked a few questions about health and history.  i answered.  and then this, 'did you know, before she was born, that she was going to have down syndrome?'  i could feel my heart beating faster and louder at the question.  i knew that lots of people had been asked this question.  and i knew that if followed with a yes, there was often an inquiry of why one didn't abort.  i spoke confidently.  'she is adopted.  we intentionally set out to adopt a child with down syndrome.'  deep breaths.  deep breaths.  'oh!  how noble of you to adopt a child that is such a, such a....i'm trying to think of the right word.  such a burden.'  i didn't respond. i couldn't respond.  she walked out a few seconds later.  jason tried to convince me that she was attempting a compliment.  i tried hard not to find her and tell her that i didn't want her to take care of my daughter if she saw her as a burden.

you need my daughter with down syndrome.  you need people with special needs, disabilities, cognitive delays, and physical limitations. they are not a burden.
i could tell you about how people with special needs often end up with siblings in a service field.  i could share this story with you to show how they develop compassion in others.  i could tell you how our daughter with down syndrome, in ways we never could have predicted, has knit our family together closer with each breath she takes.  but this is not why we need these people.
we need people who are different than us, who have limitations, and who are often seen as a burden to society, to realize what it means to be human.  first corinthians 1:27b says, 'God chose the weak things of the world to shame the strong.'
when we take out those who's abilities don't hit the standards everyone else does, we become the people of babel.  let's build a tower so that nothing bad can ever happen again.  we can keep out the things of the world we don't want to happen.  no tragedies here.  no drunk man crying on my sidewalk because he witnessed his dad get hit by a car.  no little girl lying in her bed right now who could have a tumor looming and we don't even know it.  we have conquered the world and have rid it of all things deemed 'uncomfortable' to look at, hear about, or think about.  yes, our world is perfect and we can move on to greater things.  we, as a people, are perfect.
but, ridding our world of the weak things will prove only to do what those who are weak already do: it will shine a great light on our own weaknesses.  it will remind us that walking, talking, breathing, and living may not always be easy, and it may not always be possible.  it will take away the miracles that are found in everything.
 it is a miracle when two people come together at just the right time, and somehow,that 25% chance of becoming pregnant, takes place.  nine months later, a child is born.  46 chromosomes all intact and accounted for. no more, no less.  all genetic material is present, all organs work correctly.  they roll over, sit up, crawl, and then walk.  they learn new things every day, and grow up and start the cycle over again.  truly miraculous.
it's also a miracle that jason and i can come together at just the right time, and our bodies cannot procreate like they were designed to. it is a miracle that my oldest daughter has more than one disorder in her body, and still is able to live each day doing things typical four year olds do.  it is a miracle that my little had five heart defects, and each one played off of another in a way that if that other hadn't been present she would have died within minutes of birth.

i know our world works hard on finding cures, fixing things, and medicating away uncomfortable.  some of that is right.  some of it is needed.  but we also need those uncomfortable things.  we need to be reminded that some things are unfixable, and some incurable.  somethings that might seem like a burden, will bring about great insight into a world that is only common and ordinary without them.  and sometimes, those things we see as burdens are born with the most beautiful, almond shaped eyes, and the kinkiest curliest hair, that one has ever seen.  and sometimes you fall hard and fast in love with them, even if it means your life might have days of hard and ugly.  and sometimes, when you look back at things that seemed hard and ugly at the time, you might even be thankful for things, like the miracle of not getting pregnant.

Heartsick.

Before you read any further in this post please go read this blog entry.  It's beautiful isn't it.  I read it tonight, and it seemed like a good jumping point for some thoughts I wanted to share.

What seems like forever ago, we were waiting on a baby.  God had told us that He was bringing us a little girl and her name should be Abigail.  During that time period, I watched a neighbor girl have her fourth, fifth, and sixth kid (she has eight now).  I also watched her not doing much parenting, and leaving it all to her oldest, who was around nine at the time her sixth was born.  I became slightly indignant and made certain to let God know how unfair it was that someone who didn't want kids kept having them, and someone who did couldn't.
On a warm day my husband, our dog Maggie, and I were our for a walk.  Some friends were outside.  They told us that they were pregnant, with their second.  During this time in my life the announcement of someone being pregnant always left a little sting.  However, this particular pregnancy was unexpected, and they seemed a little more exasperated than excited (they did eventually become excited, and they definitely love this child).  I was both heartbroken, and pissed.
I came home that day and went to my bedroom.  I sobbed as I told God just how unfair He was being.  I let Him know just exactly how I felt about people who didn't want to be pregnant having multiple children and on and on.  I carried on with my little fit for a while before I just layed there and cried.  God allowed me to cry and whine for a while (much longer than I allow it from my daughter).
And then,tenderly and firmly, God let me know a couple of things.  He first let me know that He could make it so that I could get pregnant.  That wasn't too hard for Him, and was something He would be more than willing to do.  He also clearly let me know that IF I got pregnant, it would not be the child He had promised us, and it wouldn't hold the same promises as our Abigail.
I won't say that the wait wasn't painful from there.  This was revealed to me at the very beginning of our process so we still waited over two years from that point before we heard about Abigail.  However, there was something about knowing that God really did have a plan that instantly took the bitterness away.

Like the blog I posted above talks about, it's really easy for me to look in the rear-view mirror and see how smooth that all was.  A long wait ended in a beautiful relationship with Abigail's tummy mommy, and one truly amazing little girl.  Our lives have been so full and rich, not only just being parents, but learning so much from God, as the result of getting to be Abigail's parents.  The trip felt scary, and I white knuckled it for sure, but here we are.
And like any crazy person along for this ride, we have decided to travel that same scary road again.  Most people would think that the second time around wouldn't seem quite so bad.  You know where most of the bumps are, and you know what the end result is.  I, at least, have been trying to tell myself that.
In reality though, I am just trying to keep from feeling the pain again.  Silly, I know.  So last night as we watched a show together, and a couple finds out they are chosen to adopt a baby, I felt it.  That ache that sat in my chest while we waited for Abigail.  That feeling of longing for my child, and knowing that all I can do is buckle up, and hold on.  I have been fighting it for a while, but couldn't control it any longer last night.
The truth is, despite that I have been on a very similar road, and despite that I can scoop up the most beautiful results in my arms, and kiss her repeatedly until she says, 'no sank you mama,' I am scared.  I spent three years walking around with that pain.  It just sat there, day in and day out.  Sometimes it got worse, but it never went away.  And honestly, I don't want to feel it again.  I especially don't want to feel it again for three years. 
It's that feeling of being heartsick, the feeling of hope being deferred; the reason that Abigail's middle name is Tohelet.  'Hope (Tohelet) deferred makes the heartsick, but a longing fulfilled is a tree of life.'  Proverbs 13:12
I don't want to live heartsick.  Yes, it's different this time, because I already have my first Tohelet upstairs sleeping right now.  That doesn't make it easier.  So we have buckled ourselves in, my knuckles are white, and I have tears streaming down my face.  But somewhere in me, just like before, I know that one day, I will get to look back, and realize that this road wasn't so scary.  And the company, the smiles, and the conversations I will get to have with the driver, will make the memory of this road even sweeter.  There will be much laughter and celebration when we arrive at our next destination as well.

Longing for our next child,

Sometimes, it's sneaky.

In general I would not use the word infertility in a sentence talking about myself.  While Jason and I have certainly not been able to get pregnant, I have never wrestled through doctor's appointments, endless poking with phone calls about number and levels, treatments of any sort, or the other long list of heartbreaking things I have watched some friends walk through.  We didn't get pregnant.  We adopted.  Most days, that is the entire story.
But every now and then some aspect of being unable to get pregnant sneaks up and smacks me pretty hard.  I don't know if it's because I'm surrounded by the announcement of pregnancies and new arrivals lately, if it's because it's the season that marks another year of not getting pregnant, if it's because I am remembering this time of year a few years ago with a little snuggle bug, or if it's all coincidence. 
Lately though, the last thing I want to hear about is birth.  I don't want to sit in a group of women recalling their stories about how long they were in labor.  I don't want to hear about how amazing it all was, or what it was like when the baby was handed to them.  I most definitely don't want to hear about what it is like to feel the baby moving and kicking inside of them.
I just don't quite mourn this the way most of the people I know do.  I seem to go through stages of mourning some small part of it.  Then I'm fine for a while.  And then there's something else.  I remember being bummed about, not knowing what a child with Jason and I's combination of genetics, would look like.  There was a time period where I was pretty sad that I couldn't give a child all of his or her nourishment through breast feeding.  For whatever reason this time period is the one where I am grieving what it would be like to carry a child and give birth.
I also know that while we were waiting on a baby, I had so many people hint at the fact that I seemed to be dealing with it 'wrong.'  I still wanted to be around children (not that it wasn't ever hard).  For whatever reason when I was having a really rough day I wanted to go walk through the baby section in a store, or go garage saling for baby stuff.  Sometimes I would sit on the floor in the nursery we had set up and finger all the tiny clothes, diapers, and shoes we had ready.
So right now, if you tell me about your pregnancy please don't think anything of it if my eyes get teary.  It's not that I'm not happy for people.  It's not even that I'm jealous; I wouldn't change the way God has made, or is making our family.  It's just that, I'm a little sad that I don't get to experience a life growing inside of me.

Still learning to accept my infertility,

Another little one.

I have always had some sort of heavy draw towards people with special needs. I am not certain that I can even trace back how old I was when it started. I remember playing with the boy in my first grade class that was in a wheelchair. He could whip me at basketball. And as I got older I remembered being drawn to try to befriend the other kids who got made fun of for being in remedial classes, getting extra help, and so on.
I spent seven years from junior high until I graduated volunteering in the special education classrooms during my study hall. I also had a cousin who had Down's syndrome that I adored. She was just a bright, funny, happy, and stubborn girl who loved country music and people.
Nobody was surprised when I chose special education as my major in college. However, I quickly realized that although I enjoyed working with people with special needs, I had no desire to teach.
Since that time I have done respite care for families of children with special needs, had a nephew born with cerebral palsy, and am now walking the road of a child with special needs myself.
And as Jason and I find ourselves discussing kiddo number two, whether to pursue another child with NF, adopt domestically, older child or infant again and so on and so on; I have had one thought alone.
When we found out about Abigail and how old her birth parents were I was prepared for a little girl with Down's syndrome. I was almost shocked when the ultrasound didn't show it. We knew she still might have some other issues, but were a little unprepared for how things have unfolded. Don't get me wrong, had we known about the NF before she was born we would have only gone into the situation with more knowledge about NF. Abigail would still be where she is right now.
Since that time though I have learned a lot of new things about Down's children and have been more and more drawn to adopting a child with it.
We are told in Matthew 25:40, "Whatever you did for one of the least of these brothers and sisters of mine, you did for me." And hearing that in America, 90% of pregnancies where the child is found to have down's syndrome end in abortion, tugged on my heart making me feel like this is one of the least of these. Then I read how in other countries children born with down syndrome are put into orphanages. If they aren't adopted by the age of 5 they are then sent to mental institutions where a large percentage of them die in the first few years from neglect. And those that don't will live their lives hidden from the public. Societies, ours included, are throwing these children away. These children are the least of these.
So with each new thing I read and think about my heart feels like it's being drawn more and more to adopting one of these precious little ones. Jason and I have talked about it quite a bit. Much like I did with Abigail, I feel very much like we are "expecting." Don't get to crazy when you read that. We were expecting Abigail for three years. :) We haven't even so much as begun the home study process. We are at the very beginning where we are praying about the child God has for us.
I often wonder if I could handle two children with special needs. More doctors appointments, more therapies, so on and so on. Every time I think this though, I hear, "My grace is sufficient for you, for my power is made perfect in weakness." I know that to be true. With infertility, waiting on a baby, and hearing a diagnoses for Abigail, God's grace and mercy has grown with our need for it. And I know that if we add another child with special needs that His grace will continue to grow.
And as always our God likes to give us little presents, things that help us to know that we are hearing from Him, even if everyone around us might think we are crazy. So I will end with a little story that made my heart flutter and my eyes well up with tears.

On Thursday we had to stop by one of Abigail's doctors offices in Indianapolis on the way out of town. I ran in to pick up what we needed. As I am stepping on the elevator, a father and his daughter step in as well. His daughter has Down's syndrome. I smiled at them and said hello. The little girl (probably around 5) walked over stood next to me and grabbed my hand. She held it the rest of the ride up and as we walked through the hospital she talked to me. Her dad was slightly embarrassed, but I reassured him that it was fine. When I finally had to let go to part directions I could feel God impressing on my heart that He had planned that moment.

We would love if you would all join us in prayer as we await the amazing story that God will weave for our second child,

The valley of the shadow...

I think everyone knows the verses from Psalms that my title refers to. They are read at funerals. They were even referenced in a nineties rap song. Jason and I both cringe when they are read at funerals. Neither of us want them read at ours. However they are some interesting verses. And in reality they don't only refer to dying, or being on the brink of death. There is a lot in those six verses.

"The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me besides quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23


Despite the reputation for being a funeral passage I actually feel like it describes our lives pretty well. My personal journey with Christ began my senior year of high school, and Jason's his junior year of college. And for many years it felt like we lived in green pastures beside quiet waters. God spent numerous years building us up with great things. It's not that there weren't any bad things in those years. They just didn't really make us question anything we believed in.
And although the wait for a baby was hard, it was not a valley of the shadow of death. I know people who live in that valley; but for us we are just in close proximity.
For the first nine months or so after Abigail's diagnoses, that's where it felt like I lived; in almost constant fear that my baby would be taken from me. And as I move further away from the diagnoses the thing I have been able to look back and see is that God never changed. I did. A whole bunch. I will continue to change. Through the times I wondered what He was doing, and why; He gently comforted me with His rod and His staff. He also prepared a table for me before my enemy; the enemy who enjoys telling me all the things that could happen, and why this might be happening to my baby. As I sit at that table and supp, none of those things from the enemy can even be heard above my heart crying out in praise.
I really do feel anointed in this situation. I feel the grace and mercy of the Lord washing over me, and I see it pouring over my daughter. I watch my little girl and know that my cup runeth over. As I hold her, play with her, sing, dance, laugh, and cry I could not contain another ounce or moment of the greatness the Lord has brought to me. I know that His goodness and love will follow me forever, and some day my husband, daughter, and I will dwell in the house of the Lord forever.
I don't want this to sound cliche. It's not something I'm supposed to say because I'm a Christian. When we first found out about Abigail's NF I felt like someone had rocked my whole world. I imagine that if I could see things the way God did during that time there was a large shadow over me.
The thing about all of it is that I really can look backward, at now, and forward, and see that God didn't change, isn't changing, and will not change. His world was not rocked by my daughter's diagnoses. He knew when He knit her together in her mother's womb that there was a chromosomal mutation. He knew when and where she would get tumors. He knew that Jason and I would be her parents. He knows the number of her days, the time of her last breath, and the way to cure anything she may ever face.
Over the last few weeks as I have begun to try to prepare myself for another MRI and what may come of it, I have been shocked at how peaceful I feel. I have even been able to look at pictures of what might lie ahead for Abigail if she does have a tumor on her leg, and have been fine. It's not that I'm not saddened by the possibility. It's that it doesn't actually change who Abigail is, who I am, or who God is.
Knowing who I am in Christ, who my daughter is, and who Christ is means that even when things look and feel shaky, I will not be moved. My life, my hope, my joy, my peace, my everything comes from a foundation that is solid. Had I not walked into this with that foundation, the months of grieving I encountered would have taken me to the pit of despair and left me there. But as I stand, I can face tomorrow knowing that my God is good. And that is all I need to get me through anything that NF can bring our way.

Enjoying the green pastures and quiet waters,

Emotional Friday

It's been an emotional day. It always takes some processing after appointments to know how exactly I feel, and that was true of today with a bonus added in at the end.
So I'll start with Abigail's swallow study. The study itself went great. Abigail was cooperative and enjoyed the barium powder added to each thing so much that she was licking it off. That's our goofy girl.
The results were that she had deep penetration of liquids in her bronchial tube 20% of the time. In more general English that means that she didn't aspirate during the study but is most likely aspirating some of the time.
We then spent the next hour with the speech therapist going over the swallow study as well as watching her eat other things, and discussing her oral motor skills. It was a bit disheartening. I wasn't that surprised by the swallow study, it was more of the other things that took me off guard a bit.
Her eating technique/skills were assessed at 10-12 months. I did not see that coming at all. So from here we are doing a few different exercises to help her eat better, stuff her mouth less, take bites, and so on. We will also be thickening all of her liquids.
The liquid thing was a bit overwhelming, but also sad. Our daughter is a champion water drinker, and we are supposed to add apple sauce to her water. So really she will be getting a more juice flavored drink than plain water. And tonight I added some rice cereal to her milk. She took one sip, sat up, and said all done as the tears rolled down her cheeks. Oh how I wished I could just give her the "nu" she wanted and make it all better. Instead she went to bed without the milk that she loves so much. I hope it gets easier as we try a few other things that we can add to her milk. She does tend to adapt well to change.
However, it has also added to my head that we keep racking up things that are going to make people not want to babysit because it's too much stuff. She could have an asthma attack, and here is what you would need to do. (With the new possibility of mastocytosis) We now have to let anyone know that it's possible she could go into anaphylaxis at any time for no apparent reason, and then give them a lesson on an epi-pen. So today we added that she can't drink anything you might be having because it has to be thickened with this or this, and here is the amount to add to each thing.
But to top the day off Jason had some blood work done earlier this week. He is having a sleep study done for possible sleep apnea, and they wanted to check on a few other things. We have sort of assumed, due to some symptoms, that Jason had some low hormone levels and that was the reason we couldn't get pregnant. And so we had expected that to come back and to have to decide from there what we wanted to do.
So today when we got the phone call that everything was normal I was excited, but also at a loss. I doubt we will do any more investigation into why we aren't getting pregnant. It was just that for the first time in years, I had a small hope that we could decide if we wanted to try for a biological child or choose to continue to adopt. And that small hope was quickly squelched. So as we have officially passed the five year mark of not getting pregnant, it feels even more final.
As I sit here writing this I truly do just feel like I am being given a little too much all at the same time. I know we have more upcoming appointments and test so I won't be able to spend much time dwelling on the here and now before I have to pick my self up and move forward again.
This post feels depressing so I will end it by bragging again about how smart Abigail is.
Abigail is extremely inquisitive wanting to know what signs are, what a letter or number is and so on. I posted a small blurp before, but she knows all of her shapes and colors, a stop sign, a Do Not Enter sign, a railroad crossing sign, at least the letters A,B,E,H,and M, and can identify at least 3,5,8,10 (the letters and numbers have been what she has pointed out and told so she may know more?) and can count from 1-10. She blows my mind with how quickly she picks up on new things.
We also watched as she walked up four steps without holding on, and has made two, two-word phrase on her own. These feel like huge wins since they are areas that she is behind in!

Feel free to pray for all of the chaos, but please also take time to rejoice with us at how great life is as well!

Ready for tomorrow,

Infertility

I don't talk much about Jason and I's inability to get pregnant. In all honesty it's not something that is on my mind very often. Don't get me wrong, there have been seasons where I have mourned it in some way or another, but as I've shared before, I don't struggle much with our infertility.
However, a few things have started to come into play, reminding me of our closed womb. First is or course the fact that Abigail has become a big girl. She wears undies, sleeps in a big bed, eats with a spoon, and doesn't want to hold my hand. Yes the fact that I don't have a baby anymore has reminded me that we can't start "trying." Mostly because we never stopped.
The other thing that has me thinking about it a little more is that we are getting ready to approach a new number of years we have been trying. We are rapidly approaching the five. And it for some reason feels like the wrap of the gavel by the judge. Like once we pass that number it's final. Now I know that you know someone who got pregnant after five, ten, and however many more years. And that's great. I know that it's not truly finality. But as this is my blog and I'm trying to explain my thoughts, it feels final.
It makes me think back to our dreams when we got married. We wanted a large family. Really. I wanted ten kids. I wanted lots of kids filling our home with laughter, life, and great chaos. I wanted the full quiver God tells us is a blessing in His word. And as the years have passed I have allowed myself to be okay with the idea of maybe having two kids.
Jason and I have talked a little about our next adoption. We have discussed adopting another kiddo with NF, and have gone back to where we were before Abigail with being open to a child with a disability. And only God knows what the future holds.
Anyway, as I was praying about all of this the other night I felt like God told me that my quiver will be full. I may not have ten kiddos like I originally hoped for, but that the needs of my children would bring me the blessing of a full quiver.
*Ahhhh* That sigh of relief. That feeling of refreshment after God so clearly reminds me that His ways are higher than mine, and that His plans are far more perfect than mine. I mean look at the beautiful little girl he brought to us. My plan was much different, but His has turned out more beautiful than anything I could've planned.

Grieving just a little,