he is here.



because our children don't do things in any sort of easy fashion....

 

Asher Toviah arrived on December 27th at almost 7 p.m.  six hours from home.  via emergency c-section.  he weight 3 lbs and 13 oz and was 17-1/2 inches long.  he had some severe IUGR.  he was born at 36 and 1/2 weeks.  i'll write the whole story out at some point, but for now, he's in the NICU working on growing.  i'm recovering from a C-section.  we are six hours from home, and thankful for family who is caring for big and little. 

if you could do anything....

there's an age old question that comes around on occasion.  'if you could do anything in the world, and money wouldn't matter, what would you do?'  I used to think long and hard about this question, often feeling like a failure for not doing the great things that I would really like to be doing.
a few weeks ago, this question came across my path again.  suddenly, the guilt and feeling of failure was gone.  it was clear, if I could do anything, and money didn't matter, I would still be doing this. 
even on hard days, long days, and days where i'm vastly aware of being in a hard phase of parenting, I would still do this.  on days where I go to bed and wonder if anything I've done that day was right, or kind, or remotely resembled even mediocre parenting, this would still be what I choose.
it's not because it's glamorous.  I don't make any money for what I do.  I won't even throw out the (cheesy) line about getting paid in hugs and kisses.
it's only because this is where I know i'm supposed to be.  my great talents go completely unrecognized and unappreciated by those they are being poured out on the most.  the world may completely discount the value in reading 'dooby, dooby, moo' over and over again.  but, still, if I could be doing anything in the world, and money didn't matter, this is what I would choose.

hospital stays and littles.

shilo spent half of the first year of her life in and out of the hospital, and has had other short stays off and on since then.  our longest stay was three months straight.  i had lots of things i had to work through as a result.  Jason and i have talked through our emotions a million times.  as new layers come up, even now, i know i can go to him and talk it out.  i've also seen a professional counselor to work through some of the issues.
when you're three, the words to describe how you feel are limited.  no matter how much we talked with big during all of this, and how much freedom we give her to share her thoughts and fears, even now, almost three years later, her ability to completely and adequately share her emotions regarding all of this, are limited.  even seeing a counselor who is amazing, she still isn't able to put all of her fears into words.  they come out, just in other more subtle, and generally annoying ways.
so the last few weeks with big have been atrocious at times.  she goes from yelling and telling me no to being unwilling to do anything other than stand or sit right up against me, and tell me she loves me over and over again.  and then, doing the same thing with Jason.

turns out, that the idea of her mama going to the hospital, and her little brother being born in the hospital might just be causing her a bit of anxiety.  it took us a little bit to figure it out.  but, it makes sense.  her reference for hospital stays is half of her family being an hour and a half away, her parents stress levels being through the roof, and spending lots of time at other people's houses.
today, i sat down and had a conversation with her about what she thought was going to happen.  it's a tough road to navigate because while i can give her run down of what usually happens when someone has a baby, i cannot tell her that everything will be okay.  i cannot tell her we will be home in a couple of days.  i can't make any guarantees to her.  so i can just give her the basics of what to expect.
i have a call in to the hospital to see if we can walk through with her to show her where we will be, and what it's usually like.  but, to be honest, this is super hard.  there are no children books on how to help your kid navigate a 'routine hospital visit' when she has some ptsd from hospital stays.
at this point, i'll spend the next eight weeks telling her over and over what it will likely be like when i go into labor.  i'll reassure her about who will be taking care of her and little.  and, even then, she will continue to tell me things throughout the day like, 'i don't want tiny to be in the hospital' and 'i hope tiny doesn't have seizures.'  all i can say is, 'me too.'

choices.

parenting is hard.  knowing what is best is hard.  push backs from the world around, the experts, the blogs, the strangers who comment, they are hard.  we do our best to choose what works for our children.  we parent Abigail and Shilo differently.  they are two different beings. 
these past few weeks I have been confronted by outsiders with the questions.  the why homeschool for Abigail?  a professional telling us we are 'limiting' Shilo by choosing not to push speech therapy and oral communication on her.  I stood my ground. 
and then I went through my days watching my girls.  wondering.  did we make the right choices?  are we doing anything well for these two little that we are trying to parent, and raise, and love to pieces?  are we being selfish in our choices?  are we limiting them?
and like the amazing little beings they are, our girls show us, and remind us why we have chosen the what we have, and why it is right.  for now.  getting to send Abigail out into the snow this morning, before we started school work, all bundled up, and full of light and laughter reminded me how great it is that she still gets to spend so much time playing.  we can get all of our school work done, and she can have lots of time to run, and play and be six.  and that is a beautiful thing for her.  and for me. 

almost ready to play.

and shilo.  and language.  and limits.  oh, if they could only see what we see.  a little girl who crawls over and asks for music, and then does her best to fingerspell, 'lecrae.'   three.  my three year old is trying to spell.  and then she tells me, amidst wiping banana in her hair that the banana she is eating, is a fruit.  and indeed, it is.  and i'm blown away that a little girl who can't speak many words, can communicate things to me that I did not know she even had in her little brain.  as if those reminders weren't big enough, weren't sure enough for us to know that we made a choice that took the limitations of speech away, and left her with language, we find her signing, in her sleep.  yes, people who use sign language as their first language do indeed talk in their sleep, with their hands.  and, it had never occurred to me.  but, the beauty and greatness of it left Jason and I laughing and full of joy.
parenting is full of choices.  there are some absolutes.  there are things that are never okay, and things that always are.  and most of us are limping our way along trying to figure out if we are doing, or saying anything right.  we're full of guilt, pain, and shame from the days we have been less than stellar in the parenting department.  we put the pictures out there for the whole world of the things we are doing well.  and, we watch those around us trying to measure up as better or worse. 
when my parenting and my decisions are called into question I quickly become defensive and snarky.  you see, most of the things i'm doing with, for, about, my children, those were things we decided with deep love for the ones who we were deciding about.  questioning those things feels a lot like questioning whether my love for them is.  and it is.  so i'll do my best to assume that your choices come from a deep well of love, the exact same place mine do. 

a few belly pics.



I have had multiple people ask for belly pictures.  However, I won't post them on facebook because I know for people who have struggled with infertility, miscarriage, or infant loss, pregnancy pictures can be really painful.  So instead, I'm going to post a few here, and people can look if they want, and they aren't in their face as soon as they open their facebook page.   Also, I wanted to take a few pictures tonight because it's snowing here, and I love the snow.  

 

 

 

 

 

7 weeks.

18 weeks. on vacation in st, maarten.

29 weeks.  where's your baby brother?

30 weeks.  preparing him for what is to come.

31 weeks.

31 weeks. 



things that are and aren't appropriate.

yesterday, shilo and I got a rare time out of the house with just the two of us.  it was to get her g-tube changed so not a fun experience for her.  however, whenever it's just her and it, the staring numbers drop substantially.  apparently, not having two children, of two different races, makes me stand out less.
i'm a very obvious pregnant at this point (almost 30 weeks).  no more questionable bump.  all of my weight gain is in the front, and most in my belly (some is slightly north of it).  this helps set the stage for the question that I am still trying to 'shake off.'

we had been put in a room to wait, and a nurse comes in to do the once over on meds etc. for shilo.  she looks up at one point and says,
'oh, your family is expanding.'
'yes.  we have a little guy due at the end of January.'
'how exciting.'
she then looks at shilo, and back at me.
'so, is there anything wrong with this baby?'

1.  she is a nurse in a pediatric doctor's office that specializes in caring for children with special needs.  this alone means she should have had the sensitivity training to know it was not an appropriate question.

2.  she is a nurse, and therefore, I would think she would know that Down syndrome is extremely rarely inherited (there is a form of translocation Ds that is.  not important to understand, but you are welcome to research it more if you care).  (obviously shilo is adopted so this is a mute point, but she seemed unaware of that fact)

3.  IF by some chance there was something going on with this baby, perhaps I don't want to talk about it with a complete stranger.  or at all.

4.  it's really none of your business.  like, at all. 

I still have been unable to shake the question.  I have no idea what I even said in response because I was trying not to cry. 
if you see a pregnant mom, and she has a child with obvious special needs of some sort, you don't have the right to ask if this next baby has anything wrong.  even if you are super curious.  even if you work in the medical field.  it's just not your business. 
things you can say:
congratulations.  you look beautiful.  do you know what you are having?  have you picked out a name? when are you due?  is big sister excited?  
these are all things I don't mind answering.  at all.  (or being told). 

hearing, language, choices.

it seems that I've had about thirty conversations in the last month about shilo's hearing, and our choice to not use hearing aids (for now), as well as using ASL as her first language.  some of the conversation has been because we had another sedated abr, and there was a new audiologist who delivered the results.  some was a result of going to a conference for parents of children who are deaf or hard of hearing.  and, some are because shilo will be three in a few weeks, so she ages out of early intervention and into the school system.

so here's some more information for those who are interested.  first of all, there is a whole community that some know exist, and some don't.  it's the deaf community.  in this community, being deaf or hard of hearing is not seen as something that needs fixed.  the adults in this community are just like the adults in any other community.  some went to college.  most of them have jobs.  they raise their children, go to soccer games, and have hobbies.  they might use apps on their phones to help make doctors appointments or to help with ordering in a restaurant.  but, they are perfectly capable of functioning in the world, just like everyone else.  some of them choose to use hearing aids for themselves or children.  some don't.

most hearing parents who find out that their child is deaf or hard of hearing choose to use hearing aids, have cochlear implants, and to work hard to make certain their child speaks.  the view is often that being deaf or hard or hearing is something that needs fixed.  for people who are hearing, it's hard to imagine functioning in a world where hearing, and speaking are the norm, and not having those things.

our personal view lines up more with the deaf community.  while shilo has some hearing, and we have hearing aids for her, she doesn't like to wear them.  matter of fact, without them on, if their is a loud noise, she puts both of her hands on her head and makes a whiny noise, or sometimes cries.  she is completely overwhelmed by loud noises.  hearing aids just amplify this.  so for her, her hearing aids cause her to feel overwhelmed.  she stops playing or interacting.  most of the professionals we have worked with have pushed us to have her wear them as much as possible so she will get used to them.  we have followed her lead and decided that if they are overwhelming for her, we aren't using them for now.  some day, she might change her mind. 
also, while this isn't always true, because people with Down syndrome are individuals, and there is no one thing that describes everyone with Ds, often times, people with Ds can be hard to understand.  they have low muscle tone, and it's harder for them to move their mouth and tongue in the ways needed.  people who are deaf or hard of hearing also, often times, have trouble with speech because they don't hear certain sounds.  for us, this meant that it was possible that shilo would have extremely hard to understand speech as a result of her Down syndrome and being hard of hearing.  our goal for her was communication.  we wanted her to be able to communicate her wants and needs easily.  so it made sense to us to have ASL be her first language.
at this point, we are not working on speech with her. I don't foresee it being something we do in the future, either.  we still talk to her while we are signing.  she still hears music, and watches signing time that is both signing, speaking, and music.  we are not preventing her from learning oral language.  however, we are also not willing to spend hours of therapy every week trying to make her imitate sounds.  i'd much rather we use that time for motor skills.
so at this point, shilo's communication is almost all through ASL.  (she verbally says, mama, papa, go, and Abigail sometimes.  however, she signs those things more often than saying them).  she actually has a vocabulary on par with that of other three year olds, and uses two and three word sentences.  she uses feeling words, and blows us away all the time by signing something we had no idea she knew.  just like all toddlers, she has some words that are the same, and we have to figure out in context what she is saying. 

we know that everyone makes the choice for their child that they think is best.  I am not saying that people who choose to use hearing aids, implants, and/or oral language are wrong.  but, for whatever reason, every conversation we have about hearing, language, and the choices we have made based on what we are doing for Shilo, I have to defend it.
here's our defense:  we love our daughter.  we are the ones who spend more time with her than anyone else out there.  we know her.  we have tried to do what is best based on what we have observed from her.  it's working for her, and our family.  i'm going to assume that the majority of people I meet are doing the same, whether it has to do with hearing, schooling, or the millions of other things, we, as parents, have to make decisions about.  if you could make the same assumption about us, we would appreciate it.

the weaning of the tube: part 2.

a while back, I shared that we were doing a somewhat aggressive tube wean to attempt to get shilo to eat food by mouth.
the wean began on june 15th.  in the beginning we did weekly weight checks.  she lost weight.  also, once all daytime calories were gone through the tube, we would attempt to get some extra calories in by pushing a blend through the tube once she was asleep.
on august 9th, we got the official clearance from the dietician to stop the night time calories.  in a little under two months, shilo went from every sustainable calorie being through a tube, to everything she eats being by mouth.  (she still has not figured out how to drink so the tube is still in use for all liquids and meds).
I can't even share how well this went.  there are families who spend months, and even years attempting to get their kids to eat enough to not use the tube.  our only magic potion was working hard to follow shilo's lead-which meant, 'don't try to feed me.  i'll do it myself.'  we still have to cut everything up, and give her one bite at a time, but none of this seems like that big of a deal.  six months ago, shilo didn't know how to swallow.  at all.  and now, we have to buy her, her own meal when we go out to eat.
there are days where it feels like life has always been like this.  but, most days, I am in absolute awe of the fact that my child is eating by mouth.  she has no true texture aversions.  she doesn't like cold, and we are working hard on getting her to eat fruit.  so no ice cream (unless you warm it a bit in the microwave first.  weirdo.), and we are continually offering her different fruits over and over again with the knowledge that lots of children have to try things multiple times before the decide they like it.  we're making progress as we started out with no fruits, and she will now eat all types of melon, banana, and grapes, and is willing to humor me with a few bites of plum, kiwi, and strawberries before she refuses them.
she has favorites, like most toddlers.  (pasta of any sort, as you will see in the photo below). and there are meals where I have to remind myself not to get upset or panic that she didn't eat much, because all toddlers do this.  she puts food in her hair, and gets it all over herself.  her weight is more than it was before we started, and she's grown 1/2 an inch.  she tells us when she's hungry.  if she sees someone else eating, she asks for some (or attempts to grab it out of their hand or off of their plate).
I really hope this gives others some hope that their child will likely eat some day.  it may not go as easily or as quickly as it did for shilo, but it's possible!!

skills, suckers, and being defined.

this is our youngest daughter, shilo.  she is two, almost three.  she has one of the best smiles in the world.  she has trisomy 21, otherwise known as Down syndrome.
she can crawl (fast), pull up, and walk (run) in her gait trainer, and loves music and dancing.

a lot of the world sees her and can't see anything besides those almond shaped eyes that lets them know that she has Down syndrome.  there are lots of stereotypes that come with that:  always happy, doesn't understand what's going on around her, easy going, compliant, and the list goes on.
shilo's personality is pretty easy going.  she is an overall happy kid.  but anyone who spends much time with her will quickly realize something, shilo is NOT Down syndrome.  she is a two year old. 

here is a list of things that shilo did today that are pretty typical for her:
-threw food on the floor at breakfast
-wiped yogurt and banana in her hair
-got every toy she could reach, out
-attempted to take her dress off as i put it on her
-threw her shoes while i was putting her socks on, then took her socks off while i was getting her shoes again
-turned around and stood up in her car seat while i tried to buckle her in
-walked to the nursery door and signed, 'play' over and over until it was time to go to nursery
-when i picked her up, the mom who was working nursery told me that she was the unsuspecting food thief: she crawled around stealing everyone else's cheerios
-attempted to get into, and take things from a stranger's purse
-threw food on the floor during lunch
-tried taking a chip out of an adults hand while they were talking to me
-grabbed a friend's boob while she was talking to  me
-refused her snack because she wanted French fries
-dumped trash all over
-ripped her bib off and threw it

i'm assuming there are some other moms of two year olds who can relate to this.  and, i'm betting, that they don't all have kids with an extra chromosome.  it turns out that her Down syndrome doesn't define her.  her personality isn't shaped by that chromosome.  she is an individual, who is capable of obeying, and disobeying.  being happy, or sad.  and if you think she doesn't understand you, she will figure it out quickly.  that sweet smile up there with a sideways head tilt is the go to move whenever she does something she knows she shouldn't.  she has skills, and she will play you for the sucker you are, if you underestimate her.

discovering grief.

a little over six years ago I became a mother for the first time.  I watched an amazing woman give birth to my oldest daughter.  I fell in love.  instant and deep. 
almost three years ago I became a mother for the second time.  I don't even know what all emotions I felt because it was a whirlwind that when remembered, seems a little like a fuzzy version of hell.  surgery, home, hospital stay, home, hospital stay, surgery, home, surgery again, home, seizures, hospital stay, home.  you get the point.  and to be honest, home wasn't any easier than the hospital most of the time.  lots of puking.  exhaustion form getting up every three hours to give meds and do feeds through a tube.  it was hard.
as we prepare for the arrival of number three, I have been overwhelmed with a rush of emotions I didn't know were lurking below the surface.  I have grieved the fact that I never got to see an ultrasound picture of shilo (I have some of both Abigail and our little guy due in January).  I grieve not being there when she was born, or the first few days of her life.  her family missed her first few days of life.
and then, I feel like her whole first year was missed.  not because I wasn't there, but because it was spent in survival mode.  we were caregivers.  we didn't give bottles, and warm baths, and snuggles.  we didn't comfort tears, or help our daughter learn to sleep at night time.  we gave meds, and sat in waiting rooms, and wondered if our lives would ever be the same.  we never got to experience shilo as a 'baby.'  I have very few memories from her first year of life, likely because I tried so hard to forget.

and now, we prepare for another little.  a boy.  and I'm not even sure what having a baby looks like anymore.  i'm petrified of germs, and am considering not letting anyone near him for the whole first year (this might be a little bit of an exaggeration).  I have no idea what it's like to have a kid without a genetic disorder, and doctor appointments, and so I just prepare for another diagnoses.
perhaps this all sounds a little crazy.  I can't say that between the last six years of our lives, and pregnancy hormones, that I might not be just a little over the edge when it comes to my thinking being rational or sane.
at the same time, I've learned that when confronted with grief, it's often best to put on your boots, and wade into it.  splash around a little.  get a feel for what all is around, and make your way to the other side.  you can likely find a bridge, or a boat, or even a path around.  and, you are welcome to try that.  but, you'll find yourself right back there, at the edge, staring into the deep dark pain of it all, and wondering how you ended up back in that same spot.
so i'm some where in the mucky waters of pain, trying to figure out how to look forward to our upcoming life changes without fear.  I am hoping that as the day of his arrival draws nearer, the other side will come into view, and we will get to meet this child with nothing but exuberant joy.
for now, if you see me, and say something about how excited I must be, don't be alarmed if my response seems less than.  I am thankful for this child.  his life.  what he will add to our family.  it's just that this whole experience is being filtered through past.

...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.

here's the story.

to catch all of you up to speed who are not on my facebook, you should watch this video and this video.  i'll wait until you get back to fill you in on the rest of the details.  if you choose not to watch them, you'll still likely be able to follow the story, but they're pretty great.



all right so here's the story.  Jason and I are just a few days away from our tenth wedding anniversary.  for the first yearish of marriage we tried a few different things to prevent pregnancy, but none of them worked well, and eventually decided to just be done with it. 
we have done nothing to prevent pregnancy for nine years.  we never sought any sort of diagnoses or help because we had wanted to adopt, and were perfectly content with this being the way our family was formed.
for quite some time I had been having some weird symptoms (heart palpitations, dizziness, along with other things).  I had gone to the doctor, and everything had tested okay thus far.  I had an appointment scheduled with the neurologist at the end of June, and was hoping for more information then.
towards the end of May, I had a dream that I took a pregnancy test, and it was positive.  I've taken numerous test over the years, more than I can count, but have never been pregnant.  I couldn't shake the dream so a couple days later, I found one we had in the bathroom, and took it.  i'm not even sure if I can begin to describe the shock that washed over me when it came back positive.
at this point, I was about 4-1/2 weeks pregnant.  I had no symptoms.  I hadn't even missed a cycle.  so I called my doctor's office because I had no idea what you do after a positive pregnancy test.
they did blood work, and then an ultrasound, thinking I might have been further along than what I thought.  I was not.
they did another ultrasound at eight weeks, and we decided then that as long as there was a heartbeat, we would tell Abigail, and then everyone else.  so the video of Abigail finding out is above, as well as us sharing it with our church.  we told our families and a few close friends early on.
once the pregnancy symptoms kicked in, my other symptoms went away.  so while we may not ever be able to confirm this completely, my guess is that something in my changed hormonally, and that is the reason we got pregnant after so long of not getting pregnant.

so, at this point we are nine weeks, and due January 26th.  i'm sick, exhausted, and having lots of back and sciatic nerve pain.  and while we are thrilled, this is definitely a trying season as we are in the middle of a tube wean for shilo, my husband is running the business he works for while his boss is out of the country, and working a lot, and i'm not 100%.  so it's a hard season right now, and i'm trying to balance joy, and overwhelmed.  but mostly, we look forward to the arrival of our third little in the future.

the weaning of the tube.

as you may have noticed, I am few and far between in my writing right now.  it's for good reason.  one I will share in more detail sometime in the future.  I have a few posts started for an adoption series I plan to do.  but, to be honest, afternoon napping is winning most days over blogging.  judge all you want to, this mama is tired.

anyway, wanted to update you all on just one of the fun things we are embarking on right now.  about six weeks ago, shilo took off in the eating department.  before this, she as great at putting things in her mouth, but they mostly got chewed and spit back out.  something started to click though, and more and more food was getting chewed and swallowed.  we were ecstatic.  we had been working towards doing a tube wean, and have officially started it.
a tube wean is when you stop feeding your child by g-tube in hopes of getting them to eat by mouth.  some people do it much differently than we are, but we are offering shilo foods throughout the day, and meals at meal time.  she feeds herself (she will not tolerate someone trying to feed her), and chooses what goes in her mouth.  here's the lay out of our wean, and how it's going so far.

day 1: 1/2 breakfast, rest of the day normal.
day2:  no breakfast, rest of the day normal.
day 3: no breakfast, 1/2 lunch, rest of the day normal.
day 4: no breakfast or lunch, normal dinner.
day 5:  no breakfast or lunch, 1/2 dinner.
day 6: no meals during the day via tube.

with this wean, we still have to give meds in the morning and at noon through the tube.  we are doing some water with this to help prevent dehydration, but not the normal amount, in hopes of helping her learn to drink by mouth as well.  to be quite honest though, I think we will be using the tube for fluids for a while after this, because she's just not good at swallowing drinks yet.  she also will continue to get whole milk after she's asleep at night, and once all food is gone, it's possible we will do some other things (blends or something of the sort) to help get some calories in her.  the goal is for her to not know we are using her tube though-which is why it would be when she is asleep.

we are on day five.  she's not eating tons.  she is eating.  and thus far we haven't seen any major changes in her demeanor.  today, for example, she ate about 1/2 cup of dry cereal at breakfast, a few puffs at the library (along with an eraser, two stickers, and part of a pine cone.  we count that as food in this situation), about 1/3 of a peanut butter sandwich, and some broccoli (a lot of this still gets chewed and spit back out, but some is starting to be swallowed).  she's had some water through her tube, and attempted drinks by mouth at each meal.  I remind myself that she is likely eating similar to what most toddlers do, and i'm not used to it because we can get a great balance in by tube. 

in all honesty, this sucks.  I hate not knowing if she's full enough at the end of a meal.  I hate feeling like i'm depriving my kid, even if it is under the supervision of a dietician and doctor.  but, in the end, I really hope, and pray, and believe, that this is the only way we will ever get her to take in nutrition by mouth. 

so to balance out the heavy, here's this hard thing we're doing right now, you should go watch this video of shilo doing awesome things!!!

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. 

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.'

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.

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.