Sunday, September 28, 2014

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.

Wednesday, September 24, 2014

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.

Tuesday, September 9, 2014

...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.

Wednesday, July 16, 2014

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.

Wednesday, July 9, 2014

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.

Tuesday, June 24, 2014

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.

Thursday, June 19, 2014

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!!!