Update...

Some friends on one of the homeschooling forums I'm part of asked about me/us the other day and I realized (GUILT) that I've neglected this blog once again. 

"How are we doing?"  Hmmmm.....loaded question and depending on the day you ask (or hour) you'll get a 'Fabulous!' or 'ACK!' response.  That's just how we're swingin' these days. 

I'm copying my response here as I really should be homeschooling some kiddos or thinking about what to make for supper instead of re-writing the whole thing.  So - here you go.  If you have any great ideas about what to make for supper, let me know....

There are some really great days and then there are some other ones. :/ Life, it is. I have honestly had to put some blinders on (like an ostrich sticking it's head in the sand???) as to what our life looks like now.

99% of the time, we are enjoying the heck out of Charlotte and all her baby-ness and then...the wind gets knocked out of the sails when I realize that only NOW, at 7 1/2 months, is she finding her toes. Or she doesn't do something that the younger set is already mastering. Or she makes a face and suddenly I see more Down Syndrome than I see Charlotte. @*&&^%!  That makes me sad and entirely annoyed with myself...but honestly, some of that happens when my son, who is almost 15 and 'typical', does something completely inane and I look at his taller-than-me-growing-up-'I-know-mom' ness and I think, "Holy Cow - he acted like than when he was 2!!! STILL????? REALLY???". Parenting in general has it's great moments and then those other ones....

Charlotte's heart health and vascular issues are doing very well. She's growing like crazy (40-50th percentile on a REGULAR growth chart, neener neener). Blows rasberries instead of screaming. Sucks her thumb like there is no tomorrow. Eats great. Loves solid foods. Has a hard time (PUN!) pooping. Entertains her siblings all the while being stimulated continually by THEIR antics. Sleeps through the night. Rolls over, albeit only from back to tummy and to the right.

She does have some hearing loss which will require a sedated ABR (audiotory brain stem response) which should be coming up in the near future and may need some vision help. Therapy is hit and miss. She tolerates more than they expected but is doing some wonky things which leave me in a mode of panic at random moments that I'm not being proactive enough in her 'workouts'.

We need to get more connected with families in the area who have children with or themselves have Down Syndrome. It will help with some of the 'scary future' kind of junk. Or not.  Stink. I feel like a wimp though in that I only have energy for the nitty gritty of livin' and homeschooling (HA! Basically we're doing Character Training, Math and Science - and those last two mostly because I outsource those suckers) right now but that's the truth of it.

I feel as though this season of life is going to give me ADD if that's possible, which is why I post more on FB than I do here. I can hide be in the bathroom and post from my phone on there....

And for now...that's all she wrote, folks. 

Shift Work

We're shifting.  Again.  Rooms that is.  One of my sweet friends thinks I have a disease.  It's called 'Rearrange-itis'.  I move furniture for a hobby.  It helps with cleaning, decluttering, and is cheaper than therapy so I'm good with it.  I feel very much like 'if you give a mouse a cookie...' only in our case it's 'if you think how to make this space work....' then suddenly, everyone is sleeping in a new place that night. 

We have a daylight basement that serves as a great place to keep school (although, really, we school everywhere....)  It's nice to have a place for all the books, desks, and a big plus we discovered on the ONE warm day we had - it's quite a bit cooler than the upstairs so we have a great excuse to school and hang out down there during warm afternoons.  Yesterday the girls and I were trying to think through how to have a cozy reading space here and suddenly, we were swapping rooms. When we first moved in we had lumped some play stuff into this room and honestly, it was quite jumbly, two halves making a strange and awkward whole. 

The girls are now sharing a bedroom again and THRILLED about it.  The upstairs room has the play things (kitchen, dress-up) and is set up for Charlotte's needs and someday, her crib.  We have yet to get that reading nook set up...but we're close.  Today's home ec project and a little weight lifting for Riley will include making that space ready. 

Pictures may follow...

Homes have a flow and feel.  We're working on ours still.  Honestly, our house is bigger than I ever wanted again but so many other things were perfect (or had the potential to be a great fit) that we bought it.  We're also back into the 'life changes more quickly than it used to' stage with our Charlotte.  We're on our third change out of clothing sizes for her and also adjusting some things from the brand new baby status to the happy infant stage.  I didn't remember it being this consuming before.  I know it is, and it's AWESOME, but I'm having to hone a few skills that got rusty. 

The bigger kids are oohing and aaahhhing over the change out of itty bitty babyness and as I help them change over their needs for growing bodies and changing seasons along with adjusting school for growing minds...they understand a bit more when I say, "See...this is why mama gets excited and wistful at the same time as change happens." 

Context is a beautiful thing. 

Sadness

Yesterday was a hard day.  A friend, who I know through a homeschooling forum I'm part of, held her 6 year old daughter as she died.  This is the time when I *hate* having friends that live so stinkin' far away.  She's in Maine, for goodness' sake. 

I've never met her in real life but through sharing stories, homeschooling moments, and great coffee options available, I got to know her and her family.

On October 4th I got to know her a whole lot better.  Charlotte's birthday.  The day where certain parts of our lives and personalities cracked into a different path, much like when a rock hits your windshield.  You see, her daughter was born with Down Syndrome and also a congenital heart defect that put her into open heart surgery countdown from moment one.  I have the most beautiful emails, FB messages, and such from her in those early days that will be even more treasured now.  E told me life would still be beautiful.  She told me I would love Charlotte.  E told me it would be hard, but we would make it. She helped explain some things that were scarier than moving to a foreign country. E was an encouragement in ways that no one else was able to be. 

She IS an encouragement in ways no one else can be, even still.  

Her daughter developed a type of Luekemia 2 years ago and it has been a fight from the get-go.  Recently, it came back.  Yesterday she went home to Jesus.  I can't even begin to imagine that crack in the path that E, her husband, and her sons now face.  Pray for them, please. 

I have been sent a few emails and messages from mutal friends checking in with me to see how I'm doing.  You see, with Down Syndrome, there can be an increased possibility of developing Luekemia and those sweet sisters are concerned about triggers.  It surprised me to read that the first time, but not in a panic, 'what if' sense, but in a 'gee wiz, I didn't know that' kind of way. 

If Charlotte's arrival and days are teaching me anything, it's that we only have today.  I do have a more fragile sense of life, but that may have more to do with getter older than any one thing in particular.  I imagine that this lesson is one that has been gradually growing...possibly through the most basic of lessons of just living LIFE and in a more blatent way, living in a different country and realizing that having running water every time I turn on the faucet isn't necessarily a given.  This isn't an overnight, 'now, I've got it' skill.  God is gracious and gentle that way, even when He has to show me for the bijillionth time.

Tomorrow isn't available to us, no matter how much we think it is.  Yesterday is over.  I will not borrow mental trouble or worries for tomorrow.  I need to be in TODAY.  Personally, I choose not to live in 'what if' all the while realizing that my heart will occasionally go there, especially on bittersweet dates.  This is not a bad thing.  Today, we are praying like crazy for E and her family.  Today, we are wiping tears because our earthly minds and hearts can't fully understand the 'why'.  Today, we are rejoicing over M's healed and heavenly body.  Today, we are thanking God for our today.

Pray for and hug your people, folks.  Today you have them....

Something to Write About.

I've just kind of been in a 'blah' spot as far as whining writing about things.  My energy goes from 100 to ZERO flat in a scary fast way. 

Today, though, the sun is shining.  Charlotte is happy.  Riley is working outside.  Janelle and Natalie are doing school a la play in the garage, also known as the one room schoolhouse they have set up, using old school books my gramma had from the early 1900s.  It's awesome, even if everyone is pretending. 

Soooo....

Here's a place you NEED to check out.  It's safe - don't worry.  Gillian Marchenko.  There are several reasons you should like her, but right now, the gift card 'carrot' can motivate you.  Know that this woman and her story have been a HUGE blessing to me as we've been dumped (not really, but those zero days sure feel like it) in to the pool of Trisomy 21.  I. Can't. Wait. Much. Longer. To. Read. Her. Book. so you better go and help her get published. 

I'll try and do better posting in the coming weeks. 

What to Do....

with this space. 

As we actually start making this place home and fixing up what we were cramming when we were throwing our things in here 7 months ago (right-before-Alan-left-on-a-two-week-trip-to-China-and 4-weeks-before-Charlotte-was-born-and-life-went-all-great-and-scary-at-the-same-time), we're making plans.  SOME plans are simple fixes and we can do without a large outflow of cash, like rip out a counter.  Or a deck.  SOME other plans are going to be a while in the making due to finances and other pesky little details.  I AM glad (really, I am....even though I've had to live with those BLUE counters...) we didn't do the kitchen before we moved in because we've changed our ideas a few times since.  Okay - so we've changed ALL of our ideas.  We'll be working with the same 'footprint' but taking out portion of a wall...and eliminating an entry to the garage and putting our fridge there...and making 'windows' in other parts of the wall.

ANYWAY....back to THE SPACE.



I can't figure it out.  It's not really part of the kitchen because it's at the other end of the 'dining area' so it doesn't seem quite right for a pantry.  It won't really be near our entry spaces so a 'landing zone' doesn't make sense there either.  I feel like I want to incorporate it though somehow into the kitchen/eating area other than just empty space.  Mostly because it won't stay empty.  It becomes a dumping zone.  (gggggrrrrrr......)

This pic I took standing at the back of our hall looking through the pass way...THE SPACE is just forward two steps and to the right.  The door to the downstairs is two steps forward and to my left.

( I was jjjuuuussstttt on the other side of that door you can see through the curved opening for the above pic. )
 

 The problem though is that this isn't a very large space and there's a LOT of traffic that happens through here.  We're hoping that by eliminating that entry from the other end of the kitchen that will help some but still - you have to pass through here to get to the upstairs bedrooms and bath and to get to the downstairs.  Oh, and to the sunroom from the kitchen or living room.  ACK.

Danggit - maybe it does need to stay empty. 

If you have any ideas...I'd love to hear them.

Whimsy...or Just Weird?

Here's is my laundry room deco piece from THIS post.  I DID finish a project.  *Only a month after I started, but whatever.*

The background is an old table cloth of my grandmother's that was all frayed and stained in some spots.  Enter scissors, staple gun, and a caffeinated me.  I LOVE signs but am cheap, so I just used my printer and the stamping paper from waaaaayyyyyy back when I actually did crafts and voila, a sign.  I did beg Alan to actually hang it though because with my luck, I would've hit drywall and these puppies are a wee bit on the heavy side.  Real wood is you know.


I LOVE it, although there is a part of me that can't quite decide if it's whimsical, in a uber creative, edgy awesome way, or just weird.

Hear No Evil, See No Evil.....

Hearing and Seeing.

Those are two areas we are working through as routine testing for Charlotte.  Sometimes children with Down Syndrome can have struggles in these areas so these tests are to rule out issues before they cause a domino effect of other delays.

So far we've seen an audiologist for hearing screenings and next month she will go in to visit a pediatric ophthalmologist.

Her hearing tests were good in the hospital right after birth but as she grows, they are re-testing.  She did great in one ear but it took several tries to get the left to pass.  She will be re-checked for that side later this month.  Frankly, it will be something we watch out for on a regular basis as these tests only rule out profound hearing loss.  We're thankful that she's doing well in that regard.

Sight - this one is a bit more concerning.  Charlotte has a fairly low tolerance for over-stimulation.    In our house, that means you have to tune out sometimes.  Early on, this was handled by going to sleep.  Now, she has some other tricks she's playing.  Worship music at church is an opportunity for a stiff body and that pouty lip followed by real tears so, we hang out in the hall.  The other biggie:  disengage visually.  "I'm looking at you....but not really."  She tracks sometimes and honestly, we are seeing improvements but it's not quite up to par so off we go to make sure there's not an underlying issue. 

I've worn thick glasses since the third grade, (then on to contacts) so she may have just come by this naturally, but I'm grateful there's proactive appointments happening.

At least WE can see how cute she is.