Thursday, February 28, 2013

winter blues.

to be honest, most day, i'm just making it.  that's all.  i have hit that wall hard, of winter blues.  and that, accompanied with being stuck at home (aside from doctors appointments, grocery shopping alone, and the occasional girls night) has made me feel like all i need to do for the next month is. get. through.
my big is a very high energy girl.  shut her in somewhere for nearly six months, and it will appear that polly pocket has been vomited everywhere in your home.  the days will also be filled with multiple breakdowns over just about every event of the day.  i begin watching the minutes until nap time, and praying for the grace to be a patient mama because i know she is just as done with all of this as i am.
my little seems not to care about ever having to leave the house again.  she's perfectly content in our little world and routine.  however, please, whatever you do, make certain that mama is always in sight.  papa's okay.  he can hang out for a minute, but what i really want is my mama.  and what mama really wants most days when papa arrives home, is to hand off both children and hide for five minutes.
there are moments of redemption.  i'm making lunch, and ask big to play with her sister in her room (because she just woke up from her morning nap, and i only have to finish cutting up this fruit) and i come up to find them both laying in her bed.  big says, 'arghhhhh matey,' and tells me that they were pretending little's bed was a pirate ship.  and my heart swells with pride at the fact that my big plays with her sister, and is less than aware of anything that might be considered a delay.
my little is making progress on sitting alone.  she has even showed both of her therapist now how she can do it for a few minutes at a time.  and being home all the time, instead of on the go, means i spend tons of time on the floor with her, practicing sitting.
this is not an easy season in our lives right now though.  and i'm never quite sure how to be honest about that.  i love my daughters, and that i get to stay home.  i'm so thankful that we haven't had any major illnesses this year, and that we are all together instead of living apart.  but days feel all the same.  i do the same things over and over again.  and my children require a lot of attention still.  maybe this is just the ply of being the parent of two young children.  maybe some of the special needs stuff factors in.
when i get out of the house, and go to story time, and play dates, and grocery shopping, all those things help me feel like our lives our pretty normal.  i don't know if they are or not, but those are all things it seems that everyone does.  but when i'm stuck at home, i feel isolated, and even more alone in the parts that are hard. i remember growing up, hearing people talk about the 'shut-ins' and praying for them in church.  i never really understood.
i get it now.  i get how hard it is to be a 'shut-in.'  to feel all alone, and unable to participate in the things that you really love, like being part of a body of believers, spending time with friends (and my children having peer interaction), and even getting to experience everyday life with your children-like grocery shopping.  i get how not ever leaving the house as a complete family-only one adult out at a time-can start to feel very hard.
i know there is an end in sight, a day when we will get to return to our activities, and enjoy life again.  the time period will be a faint memory, and the winter blues will turn to a celebration of new life in the spring.

Monday, February 25, 2013

choosing to remember.

a year ago, i was awake.  all night.  holding and swaying, singing and praying.  exhausted and frightened i held a little.  all night. last night i turned on the same playlist that i listened to then.  beautiful peaceful music played.  holding and swaying.  singing and praying.  exhausted and thankful i held a little.  she molded into the crook of my elbow because that's where she belongs.  her little eyes fluttered.  her body relaxed, her breathing became rhythmic.  





a year ago today, multiple doctors and nurses rushed in a hospital room.  they resuscitated a tiny little girl, breathing for her with an ambu, and pumping her chest with their hands to keep her heart going, and blood flowing through her little body.  they put a tube down her throat to breathe for her.  and it stayed there for a long time.  her mama sat and tried to think of words to tell a three year old about her sister dying.  there were tears.  there were doctors who seemed so heartless.  there was the constant rushing in of nurses and respiratory therapist to use the ambu again.  there was non-stop beeping.  there were lines and cords, plugs and wires.
and somewhere, although it didn't feel like it at the time, there was some small whisper of hope.  of future, life, and laughter.  of smiles some day, and milestones to meet.  of a sister who loves fiercely, a papa who swoons, and a mama who can't get enough.


the ambu was always close by, and got used quite often.

it is amazing the difference a year can make in the life of a little.  we are thankful beyond words that we have a sweet little who is still here with us.  smiling.  loving her sister.  and smitten with her mama and papa.




more sitting practice.



wearing the pirate hat her sister made her (i have no idea why it's a pirate hat).
playing with her sister.


'every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.'  james 1:17

shilo.  gift from God. one year later.

Friday, February 22, 2013

the going ons.


it's not that there's nothing going on in our lives.  it's just that, i don't have the mental capacity to write beautiful, or eloquent words right now.  so instead, i'll just show you some things we've been up to lately.



our new might not seem like the best parenting way to force shilo to sit.

shilo, sharing with the little girl, also being forced to sit in a box, how ridiculous her parents are.

tears over being forced to sit.

apparently abigail likes to plank while making funny faces,.
reading together.  we finished farmer boy (book 2 in the little house series)...
...and abigail couldn't wait to start little house on the prairie. 






                                          video

                                            abigail has been reading to her little sister, and signing a lot.

and there you have it.  tomorrow (the 23rd) is our official 'year ago we were admitted to the hospital.  i'm doing better than i was last week, but i also have a little who has had a fever for five days.  i'm trying to remember she's bigger, and stronger, and her heart isn't broken anymore.  but, it's hard to remain rationale when you have seen the ugly side.

Friday, February 15, 2013

february.

i stand in the kitchen watching the large snowflakes fall from the sky, and i think of the line from a nichole nordeman song, 'wrapped in blankets white, all creation, shivers underneath.'  i can hear my big giggling in the other room, and my little loudly proclaiming, 'dadadadada!'   and, even those happy noises make me feel guilty.  i don't even try to stop the tears.  they are around for a little while.
when i woke up i could feel the lies creeping in immediately.  the grew bigger and bigger, threatening to swallow me.  and i know over the next couple of weeks that i'm going to be fighting hard with myself to let go of all that i want to hold onto tightly, believing that if i just hold on tight enough, it really will change the past.  i can somehow go back and undo that one decision that left us living separately for months, and nearly took my little's life.
i text jason and ask him to pray for me.  and, as always he reminds me of all that is good about me.  but, the good doesn't erase that one moment in time.


and i know as that 'one year ago today' draws closer that the memories will keep flooding me.  and they will do their best to remind me of where i have failed as a parent.  i'm not sure how to undo those thoughts, and i most certainly can't undo the past.  i will, however, remind those thoughts that they are not welcome to take away my here and now because that's all i am able to do, is the here and now. and so we live.  we love.  and, we take lots of pictures, just in case our here and now ever becomes an ugly hospital room again. or something worse.







Wednesday, February 13, 2013

mad skillz.

don't worry, i'm aware that the title just relays my utter uncoolness.  none the less, i thought i would share a few of our girls newer skills.
we'll start with abigail.  let's see who can guess what abigail has recently learned to do all by herself!

i'm pretty super proud of myself. .. 

...because i can button.

yeah, we know it's crooked.  and we didn't fix it before bed.  we just don't care so much about perfect at our house.  but man are we proud of her.  i didn't work with her on it.  she was putting the pajamas on one night and said, 'watch me mama,'  and she did it.  just like that.  she also learned the word perseverance when i told her how proud i was of her for persevering when she was having trouble getting one of the buttons.  we only have zippers and tying left, and then it will feel like we most definitely have a kindergartner.

shilo's still working on her sitting skills mostly.  but she also has one other thing she has started doing regularly that went by completely unnoticed when abigail did it.  but for shilo, it's a big deal.  it means we are moving in the direction of some day being able to move around on our own.  the picture isn't her best form, but she has started sleeping like this most of the time.

sleeping with my knees under me.

you see, this means that shilo can get her knees underneath of her by herself (they really are usually all the way under her with her little butt up in the air).  lots of babies do this.  but for us, it means that shilo has down a step that she needs for creeping and crawling.  it's funny the things we took for granted with abigail that all of a sudden seem like a huge milestone!
video
oh, and this video is just to let you know, that her feelings about sitting aren't much different than they were a week ago, although she is getting better and better at it.  her p.t. may have laughed at her monday when she cried at her, turned to make sure she was watching, and then went back to crying, because she had to sit.  she has apparently been taking drama lessons from someone around three years older than her.  and she's learning from the best.

there you have it.  our girls are pretty rocking awesome.  we love getting to celebrate each and everything they do!

Monday, February 11, 2013

making it big.

so on facebook today, my girls got their big break.  well, in all honesty, it may not be as big as i'm making it out to be, but i'm pretty excited about it.  you should go check out the page for down syndrome indiana.

for both of our girls we really want to bring awareness and acceptance to their disorders.  we were super excited to get to be part of the 'get to know you' campaign for down syndrome indiana.  anyway, go check it out.  it's pretty sweet.

Thursday, February 7, 2013

looking for a new doctor?

abigail has expressed the desire to be a doctor when she grows up.  she definately understand more than most four year olds about medical stuff.



listening to her back

and front

holding her hand

is something wrong doctor?  you look intense.

checking reflexes.

taking her temperature.

looking in her ear.

checking her mouth and teeth (yeah she's also a dentist).


checking her blood pressure.

checking her eyes.

and the other one.

giving a shot (notice shilo's amazing ab muscles that she refuses to use for sitting?)

Tuesday, February 5, 2013

will.

it's sort of a common thing to hear people talk about their children having strong wills.  with our big, we fought battles, but she does not have a strong will.  she easily ate what i told her to if she wanted the dessert after.  if she wasn't supposed to play in something, or touch something, she didn't.
she isn't always obedient.  she's sassy, dramatic, and full of life.  but when push comes to shove, she's more than willing to back down and do what's being asked of her (albeit it with a bad attitude some days).
little.  she's already giving us a run for our money.  she does not. want. to. sit.  if you would like to hold her in a sitting position that's fine, maybe put her in the bumbo?!  but on her own, no thank you, i'll lay on the floor, thank you very much.  it's not that she isn't capable.  i've seen her do it.  her therapist have affirmed that she has the physical capabilities.  but she would prefer not to.
what she doesn't know is that she isn't capable of out-willing her mama.  she will sit.  on her own.  and we will do it all day long, with me making certain she isn't throwing herself back, until she decides it's her preferred position.  
sitting on my own.



and i'm done.

the two white things on either side of her head are her socks.  so she's still technically in the sitting position, just with her head on the floor between her legs.  she's not sleeping, or pouting.  she's actually yelling, 'duhduhduhduhduh' to express her displeasure with my attempts at getting her to sit.
oh, but you know where she does prefer sitting up?  not on a nice solid floor that gives ample support. nope.
sitting, with mama's hands close by.
that's right.  she likes sitting alone in the bathtub.  slippery, sliding back and forth, mama certain that she is going to get a face full of water, sitting.
oh, such a big will, in such a small girl.  i get the feeling we are in for it this time around.

Sunday, February 3, 2013

rock star.

so while i try not to talk on the internet much about my children's elimination habits, that is going to be what this post is about (sort of).  if you are uncomfortable with the topic, feel free to sit this one out.  there are no hard feelings.  and just to make certain you are aware, i will NOT be (nor will i ever) posting pictures of my children's eliminations, nor of them in the process of eliminating.  fair enough.  here we go.

children with low muscle tone are more likely to be constipated.  low muscle tone happens throughout the body, including, take a guess, the g.i. tract.  therefore things moving through are slowed down.  when this happens more water is pulled out in the intestines, and causes stools to become larger, harder, and hard to pass.
lots of kids with low tone take some form of a stool softener.  miralax is the drug of choice for most of shilo's doctors.  but i fought long and hard against her taking anything.  there are a variety of reasons, and i won't go into all of them.  however, this fight also meant that i worked hard at doing natural things to make certain everything stayed regular.
most of what i do is through food.  high fiber (flax seed), coconut or olive oil, fish oil (although this is also for brain development), probiotic, and lots of p fruits in her blends that i make.  on top of that i do something a little less 'normal' and a little more on the 'out there' realm of thing.
if you have ever read anything about potty training, you may be familiar with the elimination communication method of training.  the basics of it are, that in early infancy you watch for small signs or cues that your child needs to use the potty, and you take them.  some people make a noise with it so that they can take them and when they make the noise they go.  there's lots of variances.
the other half of my explanation for what i'm about to tell you is that all over the world, people often squat to go to the bathroom.  studies have shown that people who squat to have bowel movements are less likely to be constipated, don't have the hemorrhoid issues experienced here, and have over all less bowel issues.  squatty potties have become a sort of rage here in the u.s. as a result.  you can buy tons of different things to make this your reality, a stool to put around your toilet, a different toilet, and so on.
so here's more of my crazy, out here on the web, for all to read.  on top of making certain shilo's diet is one that helps things along, we also hold her in the squatty potty position about fifteen minutes after each meal.  we have been doing this since november, i think.  as a result, she no longer poops in her diapers.  at all.  two to three times a day she goes on the toilet.  she also regularly pees when we take her.  we show her the sign when we take her as well, just so she knows what we are doing.  i don't know that it will or won't mean that she'll be potty trained any earlier than other kiddos with Down syndrome.  i do know that we will keep doing it if it prevents us from having to use any other medicines, and double bonus, change a poopy diaper.

so this big long explanation leads into this one excited thing i wanted to share.  today, during lunch, shilo was babbling in a sort of animated angry voice at me.  and then she did a sign.  and again.  and i signed back to her 'you need to go potty?'  and she got very excited.  i took her, and she pooped.  my not quite fifteen month old, with low muscle tone, and cognitive delays, told me she needed to poop today.  i'm constantly blown away by things that she does.  i think my little might just be showing me, like her big sister did, that she'll do what she wants, and not what doctors and books say about her.  i'm raising rock stars here.