Monday, November 17, 2014

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. 

Sunday, November 16, 2014

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. 


Friday, November 7, 2014

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). 

Thursday, October 23, 2014

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.

Wednesday, October 22, 2014

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!!

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.