Ryan is going to give you a house tour!

I took a little video of Ryan a few days ago at the house.  Let’s pretend that she is giving you a house tour and not just running while I narrate and simultaneously wipe some snacks off of her chin.

enjoy ( though you are missing the dining room (old living room) and foyer)

House Tour Hillcrest

YOU HAVE TO CLICK ON THE LINK ABOVE, labeled House Tour Hillcrest, I hope it works, you know I’m a luddite.

Playroom Pictures from my phone!

image Here is the basement playroom before and after. I ordered all of these big interlocking playmats off of Amazon. I had to get them in a rainbow of colors because I really wanted the chemical free kind (little miss Ryan is still too oral and I am still a worry wart).  Due to the rainbow dictate I wanted everything else calm. Her toys (too numerous to count) are colorful on their own, so white walls it was.  Painting plastic wood “like” paneling white is a beast. Don’t look too closely because after four coats I gave up.

My sister helped, Micah helped and my friend Terri helped too,  still it was an exhausting job and needed to be put to bed.  The floors came next, sheet linoleum so dusty and stained I wanted to rip it out and replace it. Then I looked at our bank balance and washed it numerous times on my hands and knees only to put the mats down too early and have to wash it all over again. Oh well, I am listening to a bodice ripper of a book series and that sure is keeping my mind off of the manual labor very well.

Then the move, the numerous boxes upon boxes of “Ryan toys”.  my Mom Helped so much and we had the swing I-bolts hung in the houses I beam.  Our contractor hung the I-bolts and he is so kind he didn’t charge us.  He knew all about Ryan and our story but seeing the playroom and the care we were taking to have it be just so for our sweet girl, then having the chance to finally meet Ryan and talk to Micah about her moved him I guess  because when I asked him how much it all was going to cost he got emotional and told me that it was no charge.  Such a kindnes, these swings are so integral to her therapy and regulation that it was no small gift to is at all.  I will praise him and recommend him to all.

Now to the toys.   I have been dreaming about setting up this room for Ryan for over two years.  I have been combing every Goodwill, thrift shop and garage sale I could find to fill it, as well as taken every hand-me-down purchased too many things off of Zulily and Amazon.  I have a problem and I can’t seem to articulate it well.  I have convinced myself that if I provide Ryan with everything then maybe it will work.  Maybe my efforts will be what was needed to kick start her speach and cognition. Maybe i can do something to help her, maybe I can finally get it right. Hopefully I pray for that maybe.

My Mom helped me a ton, she is a taskmaster and we weeded out the baby toys, organized the rest, moved everything around and then organized it all.  It took days, but it is basically done.  Micah and I are considering container options from IKEA (a pic of one is included) and I am going to hang some things up and paint the door with chalkboard paint and then call it.

Ryan loves it sits at her table or goes right to the platform swing.  She has been running the whole house and laying on all of the floors to get used to everything.  I will get her in some pictures soon I promise.  Without the Nikes my feet already feel better, a new pair of shoes and orthotics next

image image image image image

ache

my body is falling apart and killing me.  Just being on my feet so much is about all I can handle.  I got some new tennis shoes in December, and I don’t know if I bought the crappiest NIKE’s of all time or if it’s just me, but my legs are a fire almost every day and I have this nasty feeling in my right foot as soon as I put any weight on it.  Oh and I had a birthday, so I’m officially old & falling apart.

But I am also moving tomorrow.  I will post a bunch of pictures, I will show you the lovely wallpaper that I hung with a friend from work, and the overly indulgent play room that we are putting together for Ryan.  I can also show you the half painted trim upstairs, the powder room with a freshly painted yet un-lacquered vanity and the new black hinges on the honey wood doors with the old antique gold knobs.  I can tell you all about the wonderful people who have been helping us with Ryan and all of the lovely new things that Ryan is dong these days.

I will tell you when my feet stop aching long enough for me to get off of my butt, grab my phone and post the pictures.

Stairway progress, prime, dry, tape, repeat

From the title you might have an inkling that the stairway is not going that well.  The carpet was installed yesterday, and I’d been so busy focusing on the staining of the railing and the newel post on the first floor and re-staining the rail and the top of the newel posts on the second floor that I didn’t get to the finish layer of the white paint for the risers.  My Mom and I worked tirelessly the day before the carpet was getting installed to get all of the trim painted and/or at least primed.  I was satisfied with our work, I know that my Mom wasn’t.  Grandma M is much more of a perfectionist than I am, and I already had weeks of thanklessly painting trim and seemingly getting no where under my belt, so at dinnertime we called it a day.  A solid eight hours we’ll never get back, however thankfully we could kvetch about all things BRAVO!!  Side note, for my birthday (next week) my amazing husband is taking me to see Mr. Andy Cohen and Anderson Cooper in person at the Chicago Theatre!!!!!  Sometimes I wish I were a young gay man, just so I could date Andy Cohen, is that weird?  why, yes Carrie it is.

Ok the stairs.  The carpet folks are coming at 8:30 Thursday morning, pushed off from Monday morning in order to get more trim done.  Anyway that time line leaves me not a second to get anything done the morning of, so all I was able  to do was remove all of the stain blocking tape from the primed risers and rails.

BRAKES SCREECHING……

The tape starting pulling off the primer, not just a little bit, chunks and there is no way that I can prime them again and have them be completely dry before the carpeting commenced.  If I did it and it wasn’t dry, then it would create a huge mess and at least the paint would be fuzzy and sticky with carpet fibers.  I almost cried, seriously.  So yet again I had to swallow my screams and just let things move forward, even it means that my stairs will end up looking shotty.  Shotty because I am going to have to do all of the fixes and finish work post carpet.  So maybe I could have gotten away with getting the finish paint a little close to the carpet because the white primer was totally underneath it and my painting sins could be forgiven, because it would be good enough.  But nope, that isn’t going to happen now.

Feast your eyes

IMG_3486 stairs in process 6Stairs in process 4

And BTW I HATE the carpet.  It is too dark.  I wanted cream, I wanted cream, I wanted cream and I went with light brown to hide the stains and I know that it was the smart choice, I know that I have a kid who still pukes a lot and I know that we may want more kids, and that this darker color will hide a multitude of sins, but damnit I wanted cream so I’m going to whine about it for a little bit.  Sorry I’m being a baby.

The stairway – progress

Here is the progress that is being made on the stairways.  As you know we had to re-do the upstairs bannister/railing.  I already mentioned how I primed and stained that area.  I still have to fill the nail holes, sand them down and apply my third round of stain and then to the poly layer and two finish coats of paint on the stringers and the base.

Downstairs we can’t afford to re-do everything so I am painting and staining what was already there.

Before

stairs two stairs

This is a real pain in the tuckus.  First off pulling out all of the carpeting staples is really hard.  Really hard on your psoriatic arthritic hands and knees.  Next up, the prep work.  I want it to be done right, but I don’t know how to do it right.  So I read a bunch of blogs and then I just bought wood filler, a sanding block and got to work.  I applied the wood filler, sanded it and wiped it down.  Then I sanded all of the wood, primed the stringers and the rises white and waited.  Next I pulled out the tape so that I could preserve the hard work when I used gel stain for the railing, the newel post, and the stair runs.

All of this for only the right end side of a few stairs, because the carpeting is going on the rest.  I tried to get it all done before the wood floors went in, but I couldn’t.  Ryan’s Spring Break and a little bit of a three day plumbing problem in our rental house stalled things for a bit.  But last night I got back to it.

Here are some of the progress photos and you can sneak peek some of the new floors too.

Stairs in process 2 Stairs in process 3 Stairs in process

 

Happy? Easter

Happy Easter to everyone, though today I haven’t been that happy.  The morning began with me (like you) frantically trying to get Ryan, Micah and myself ready for church.  Micah was singing in the church band for the first time and I really wanted to see it.  Our church has a great playroom, but I can’t just leave Ryan there, so I brought silent toys that interest her, snacks, and her stroller.  We let her run for the first fifteen minutes we were there while Micah was warming up and getting ready and then at the start of the service we heard a few songs (by now she is in the stroller, BTW) and then she just started getting antsy and having a mini-melt down.  I didn’t want to ruin it for Micah, I knew he would be distracted if she was fussing in front of him, so with a smirk of apology to him I took her to the playroom.

I was already a bit on edge, getting the gal to wear tights and shoes is really hard, and that was a big part of her Easter Ensemble, we live in the chilly Midwest damnit.  So at first it was just me and the Pickle in the playroom.  She ran here, she ran there, she licked everywhere.  I chased, I shut doors, I put toys in the “to be washed” bin.

Then a few typical little girls came in to the room.  They came without a parent and they started to play.  A big sister, her little sister, and their cousin.  The little’s were both three, and what you don’t understand unless you have lost a child or are a special needs Mom, a typical child who is the same age and gender as your special needs child is your Kryptonite.

http://en.wikipedia.org/wiki/Kryptonite

These two little girls were talking, playing hide-and-go-seek and making up games that made sense.  Sure the big sister was bossing them around, but they understood her and were generally keeping up, though their hiding places were very obvious.  Why, why can’t Ryan be like that.  Why can’t Ryan tell people about her trip to some place in St. Louis and show off the plush toy she got in her Easter basket that morning, which she’d already named Pepper or Pep for short.  Why can’t that be my girl??  I’m a good person, I’ve generally followed all of the rules and done everything the “right way”, why can’t I have that little girl? See kryptonite, I don’t feel this way most of the time, but every now and then it smacks me in the face and it sends me down a bad path for a little bit.

These girls so happily playing had no regard for Ryan whatsoever.  She wasn’t cute and little to them, she wasn’t sweet and silly, she was invisible.  No Mommy was telling them to talk to Ryan and on their own they didn’t want to so they didn’t.

I didn’t step in because I wanted to see how things would play out and I don’t think that it is appropriate for me to make other little girls engage with my Ryan.  These little girls broke my heart again, not because they were so awesomely typical, but because they were shunning my Pickle and she didn’t even notice.  She was invisible and I was crying in a playroom and that also went unnoticed.

So the second church was over, Micah came to get us and we left.  At home I put my pajama’s back on and sat on the couch for a bit before we had to go to my Sister’s house.  Ryan took a nap, Micah and I vacuumed the living room and packed a few toys up to move to the new house.  I made a side dish, Micah finished off his deviled eggs, I got re-dressed then we woke Ryan up and went to my Sister’s house for “Easter”.  An half hour late.

Things settled down once there, I got some shoeless and tightless pictures of Ryan outside my Sister’s house and then a miracle happened.  Six kids between 6th grade and a Freshman in college focused all of their attention on Ryan and entertained her for hours.  It was so nice, I wish that I could bottle all of them up and have them all rotate in and out of our house on a daily basis, as my anti-kryptonite.

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Two Year Photo Book done

2015 Easter Bunny Pre-K Puffer 2014 - 2015Well Ryan is almost four and I just finished her two year photo book.  I got $30.00 in coupons at the mall when I took the Pickle to see the Easter Bunny today, and luckily Shutterfly was also having their own 40% off photo books sale, so tis finally done!  An hour in the line worked out all right on our end, thanks to a quick stroller nap and some dehydrated blueberry pieces.

The Easter Bunny was a success, even though Ryan didn’t smile, smirk or wink.  She stared straight ahead as if she was having her mugshot taken.  She was such a good girl, she just does not jump when you say jump.  I don’t think that I shared Ryan’s other professional mugshot school picture yet with Y’all.  Enjoy and Happy Easter.

We are going to an Easter Egg Hunt on Saturday, Micah is singing for the first time with our church’s band on Sunday and then dinner with the family at my Sister’s house.  Finger’s crossed she keeps her headband on, because it is so super adorable!  I will share the pictures.

 

 

 

Hide and Go Seek with our Fireplace

As we have mentioned we “got rid” of our fireplace at the new place.  Here are the before and after photo’s.  The new wood floors are getting put in next week and I still have to paint the sliding glass door surround.  If I had a wish and I didn’t have to involve Ryan in that wish, my wish would be that I could just wiggle my nose and have all of the trim painted in the house magically.  These days I’d prefer that to a flat stomach, that is how bad I want this damn honey oak trim painted already.

Behr Hazelnut Cream paint, white trim and a light fixture that a tall person could walk under from Menards, (our third effort)

Behr Hazelnut Cream paint, white trim and a light fixture that a tall person could walk under from Menards, (our third effort)

drywall complete

drywall complete

drywall with a little cutout for the electrical outlet that we had installed

drywall with a little cutout for the electrical outlet that we had installed

Framing in front of the fireplace

Framing in front of the fireplace

Fireplace sans hearth

Fireplace sans hearth

Elaine's family room

Elaine’s family room

Weekend

We had a fine enough weekend, Ryan wise.  Micah, my sister, and I painted at the house.  My nieces watched the head banger, and I left instructions for them to basically give in to everything she wanted and hopefully not have to endure any fits.  Maybe that isn’t the kind of parenting that wins medals, but I didn’t feel that I needed to burden a sixteen year old and a fourteen year old with a cognitively delayed 3.5 year old’s behavior issues.  So they swung her, took her for a walk and let her run around like a maniac and she ate a lot of snacks and macaroni and cheese.  Yeah for nieces!!!

We worked a lot on painting the walls and ceiling in Ryan’s basement playroom.  A sister who is willing to put a Home Depot bag on her head, ruin her shoes and spray paint a drop ceiling with you is a sister who truly loves you.

Of course, Ryan’s playroom is going to be the first room that is ready to go in our house.  Isn’t that what y’all expect from Micah and me anyway ;).  So hopefully I will finish painting it this week in little nightly snipets and I can start moving some things over.  The house we live in now is going to be on the market soon, so this will also help a lot with our de-cluttering mission.  We rent from Micah’s Mom and she is going to list it and we want to help Grandma D., sell this house a little faster.  Her/Our house is overrun with Ryan things, it’s only fitting that we share the love with the new house.

Here are some more pictures.  The before of Ryan’s playroom in the basement and the mid-way point of the hall light fixtures and new super tall railing and newell posts upstairs.

IMG_3513 IMG_3515light fixture 2 light fixture

I cried to a stranger again today

Today I finally cracked.  the house, Ryan, the budget overages, a sinus infection so I cried to the painter at the house.  He is a stranger, but not really.  He is the father of seven and a good friend of a fellow special needs family.  This man helps my friend get her wheelchair bound son upstairs to bed a few times a week.  My friend can not carry her twelve year old non-verbal, physically and cognitively delayed son up the stairs anymore and her husband travels for work.  This kind man (and handyman) goes to her house, brings Jacob upstairs for her and then goes back in the morning and brings him downstairs for her.  This is the kindness that he offers her, today he brought me a Kleenex and listened.  Just what I needed.

I had a rough morning with Ryan.  She is starting to freak out whenever you lay her down to change her diaper or tube feed her.  She is wigging out and banging her head against the ground while trying to wriggle away and getting poop or ripping out her g-tube and the food goes everywhere.

She is pissed because she isn’t in control, she is pissed because she doesn’t want to be man handled and mostly she is frustrated because she can’t tell me how she feels.  Sometimes it’s just too much.  It is too much to have her physically develop fine but mentally not develop much.  She will run in to traffic, she will run away from me in public and she would go home with a stranger.  She is fast, and pissed if you try to hold her hand, reign her in, or carry her.  She acts out by hitting me, pulling my hair and banging her head on the floor or against the wall.

IMG_3577 IMG_3580

I’m scared when she bangs her head, I am scared that she is going to damage her precious brain, I am scared she is going to knock something that is keeping her seizure free out of balance and I am scared to raise a brat with perpetual diaper rash who only eats fruit snacks because I give in too much so she won’t bang her head.  I’m scared that this is my forever.

I keep thinking of my friend and her Jacob, I know that she wishes that Jacob could run, I know that she dreams of him sitting in her lap on his own, and that makes me feel horrible for complaining but here I am.  I’m afraid that I am going to lose my patience, I’m afraid that I am going to give up trying, I’m afraid that Ryan will end up hating me and stop climbing in to my lap for a snuggle.  I’m embarrassed to tell you that sometimes I envy my friend, she always knows where Jacob is and she knows that he can’t get in to the chemicals under the sink, turn the stove on then try to scale it, or run away from her and in to traffic.

Next week is Spring Break and I’m afraid.  I bought new water based wipes, diaper rash cream and pull-ups to hopefully make the changes more pleasant.  I have figured out a way to tube feed her while she is in her egg chair twisting and watching Sophia the First, and I’m going to let her stay in her jammies all day so I don’t have to battler her to wear socks, much less shoes.  Fingers crossed this new plan works, because if not she and I are going to spend a lot of time in “time out” for both of our sakes.

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