Easter Seals Fashion Show

First off these are not the best photo’s.  I should have changed the camera’s setting and I didn’t, so blurry is what you’ll see in a second.  As I mentioned a while ago, Ryan was asked to be in the Easter Seals Fashion Show fundraiser.  The event was on Saturday, and she did great.  The whole morning I was so anxious, I was in a fog, half participating in conversations and half worrying that Ryan would run off of the runway, plop down, or end up being carried the whole way.  She did great!  She did plop down a time or two, but for the most part she ran in a straight enough line right down the runway.  Micah chased her the whole way, never looking away from his Bug.  She was so darn fast that the announcer barely had a chance to read Ryan’s bio.

VIDEO BELOW!!

Easter Seals Fashion Show 2014 Ryan Margaret Finale Runway1 Runway2 Runway4 runway5

We were so honored to have so many supporters at the show for Ryan.  We filled a whole table, and when a few of our friends could not make it, they donated funds to Easter Seals anyway.  So, so, so kind, Thank You, we love you.

At times like these I think of something a fellow special needs Mom told me.  Her daughter is now in eighth grade, and has opinions about her outfits, hair-style, and activities.  She is a wonderfully willful preteen and totally typical in that.  Her Mom has told me that she wished she had dressed her little girl up more when she was tiny, that she had taken more formal photo’s, and participated in more events like the fashion show, because now she is sad that her daughter has lost interest in dressing girly and that those days may be gone forever.

So we’re all in.  I don’t know when Ryan won’t want to do it anymore, but I know that the day comes for a lot of parents whether typical or special.  So until then we are wearing tutu’s and blissfully going down runways as often as we can.

PT in the Pool

My gal loves her pool PT.  To get over this need for the stroller in school, I am diligently walking Ryan in and out of places.  I am holding her arm by the armpit and my other hand is on her back so I don’t pull her arm out of it’s socket, when she inevitably plops herself down to the ground to be free, or to perhaps feel or even lick the ground (pool tiles must have tasted good today).  This kid.  Anyway I am walking her more and more and she is improving.

When we got to the pool today for PT, I knew that if I let her walk I’d have a hard time keeping her away from the water.  We did however have a little bit of time so I kicked off my Toms (the shoes of stay at home Mom’s everywhere) and I let Ryan play in the shallow end of the walk in pool.  She was so happy and so chatty.  She isn’t afraid of the water at all, and I had pants on so I couldn’t let her fully experience it but, the moment was so blissful.  She was smiley and so verbal.  I wish that we could afford to go to the pool all of the time. I wish that I was more comfortable in a swimsuit.  I haven’t had a soda in four days, so here’s hoping for next summer.

I am going to get on it and sign Ryan up for some lessons, once a week PT in the pool isn’t exposure for this girl.  Three birds great extra PT, great Speech output, and she likes it.  Cognitively she may not learn much, but the fun will be in trying, and in buying her more swimwear!!!

Dot Days

A stroller has been procured.  I have moved on to acceptance on the stroller in school front.  My Mom helped tons by getting the stroller for Ryan and talking me off of the ledge.  Thanks Mommy, I still need you I guess.

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I just have to tell you how kind people are.  Before my Mom bought Ryan the stroller I posted on this garage sale site that I was in search of a stroller.  I was expecting to pay for it, I just wanted to search in a specific way for an umbrella stroller with a chest/arm strap.  Well, the folks in our “new” town were so kind.  Three strangers offered me their strollers for free.  Can you believe that, such kindness.  I didn’t even play the epilepsy or brain surgery card, I swear.

My Mom surprised us with the stroller, so of course I refused the offers and thanked them profusely.  Seriously how kind were they though, we really are a very lucky family and so blessed in so many ways.

So I’m going to keep working on paying the karma God’s back.  I like having a positive account, you just never know.

It was Dot day at school on Monday.  Of course a fashion challenge that I decided we could meet in spades.  When I looked for a dotted outfit for Ryan, I realized that just by shopping her closet I could make it dot week, so I did!  I was kind of hoping that there would be a contest or a parade or something and that my Pickle would win, but there wasn’t it was just Dot Day.

Here is Ryan on Monday (her dottiest outfit) and here she is today!  Have a great weekend, I think we might check out a story time at the library and some other “typical” kid activities!

dot day

Dot Dress, Dot Leggings, Dot Shoes, Dot on her hair bow, DOT, DOT, DOT

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Dot’s on headband and leggings

Fashion Show, Fashion Show, Fashion Show at lunch

I am very, very invested in Ryan’s outfits.  As you know or have discerned I am overly interested in Ryan’s wardrobe.  I feel very judged for this sometimes, and I’d like to explain myself.

On the surface it might seem like I am being ridiculous for filling her closet and drawers, for ironing her clothes, for coordinating her socks with her headband, for even trying to get her to wear a headband or a hair bow.  You may suspect that I spend too much money, and wouldn’t our money go farther for her therapies and co-pays if I just stopped caring so very much about her appearance.  You may think that I’m frivolous and a snob, that my priorities are out of whack.  That I am not a proper modern feminist and that I am teaching Ryan that the only thing about her that matters is what she looks like.

You are wrong.  First I have always cared about clothes.  I babysat my life away from seventh grade until I could get a job (in a clothing store), and I assure you that every penny went to new clothes for me.  It’s what I’m in to, it’s what I’ve always been in to, it’s just me.  And I love a bargain more than most people, you will never see me more happy than when I get Ryan stuff at a consignment store or a garage sale.  I also give all of Ryan’s old clothes away.  I could sell them and I would make a decent buck, but I would rather pay it forward and share her adorable outfits with her younger friends or we donate them.

Today it kind of hit me, as I was explaining myself and defending her outfits to her new PT (who was not giving me a hard time, I just feel like I have to explain myself about everything)

It was when I was talking to the PT today at school drop off today, she sought me out to ask me to bring a stroller in to school for Ryan.

At school they are struggling with her endurance and walking to and from the motor room and the gym.  Ryan can walk, but Ryan struggles with directions, endurance, distraction, and licking or touching everything along the way, so sometimes a stroller is a necessity.  I hope that she overcomes this need and I hope that I am not strolling her around in an adult size special needs stroller for the rest of her life.  But I may be, and that is our reality.

So when you see Ryan and she is adorably turned out, please know that I am barely holding on and trying to have my little girl, look a little bit like the dream of a little girl I had for so many years.  My little girl has never said Mommy, Momma, or Ma and meant me.  She does not come up to me and kiss me or hug me, she does not reach for uppy, and want me to hold her.  These are things that I long for, that most of you may take for granted and for me they may never happen.  But the outfits, yeah, I can make that happen.

Ryan being so cognitively delayed, in this instance is in my favor.  She will wear whatever I put her in.  She does not have a preference, she does not have an opinion.  She is like a three month old.  I put her arms in and out of her sleeves.  I put her legs in and out of her pants.  I have to stand her up, support her and pull up the pants, so yep sometimes they are really ruffley, because they make me happy, and they certainly don’t hurt her.

I am trying to bring a little bit of joy in to my heart, because sometimes I need it.  I do it for me, not for you, not to make you feel like a lazy Mom.  I do it for the thirty some years I’ve dreamed of having a little girl.  I love my girl so much, but our reality is sometimes hard for me.  Seeing your amazing children acknowledge you, run up to you after school, cling to you before school and say bye, bye is hard on me.  I can’t get Ryan to hand me anything, say a word, follow a direction, and now she can’t walk to the freaking gym at school without a stroller, her legs work, but her brain struggles.  So you bet your ass that she is as well dressed if not better dressed than typical children.

Fashion show, Fashion show, Fashion show at lunch

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Easter Seals, Lilypalooza 2014

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2013 Valentine’s Day card trial

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Marriott’s Waiohai Beach Club, Kauai, Hawaii December 2012

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Ted Baker Dress from JC Penny, with her MiMi Spring 2014

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Lady Bird Johnson Wildflower Center, Austin, TX Spring 2013

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Minnie Mouse Dot Dress from Grandpa Dennis, Spring 2014

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Round Rock, TX 4th of July, 2013

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2nd Birthday Party

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Eureka, MO, August 2014

 

Ummmm

I want to talk, but I don’t know what to say.  We are chugging along.  Ryan is doing well in school.  She hates wearing the AFO’s and tries to take them off all of the time.  She has learned how to do Velcro, so it’s exciting and annoying all in one.  Her cough is back, but it isn’t a cold.  It’s her esophagus not emptying properly in to her stomach (again).  So we are getting some tests and possibly some dilations done soon.  Depending on what they find, we may or may not be facing her sixth major surgery and thirtysomething sedation.  Hip, Hip, Hooray.

Hopefully the dilations will do the job for a long, long time.  She is almost or should I say only 24 pounds now, so you see we really need to get this in control.  We still use the feeding tube, but her reflux is so bad if we push it, and she wraps the overnight feed cords around her head or chews on them when she sleeps, that it isn’t an option.  I don’t think most kids who need feeding tubes are as active as Ryan is, or I think that most GI’s who come up with these ideas do not have a Toddler who has a feeding tube.  Either way we are still doing gravity feeds a few times a day, and we are doing our best.

I have made some new friends.  I’m in love with the two youngest kids (of the five) who live next door to us, and we hang out a few times a week now.  The third grade girl and I are working on finishing up the play kitchen renovations and the first grade boy is just working on being awesome.  Ryan loves having them come over to play.  She may not play directly with them, but she is smiley, and more verbal and it’s just awesome to see.  I’m in love with the interaction.  Sometimes I need to feel like I am a good Mom, because I’m fun and kids like playing the silly games that I make up, and laugh at my silly jokes.  So as I said I have made some new friends.

Ryan was asked to be in the charity Fashion Show for her old therapy center.  It’s a pretty awesome thing.  I will definitely post photo’s when I have them.  Yes, the outfit and accessories are adorable, and I have obsessed about them.

Micah and I are headed out to CO for our anniversary (almost five years).  Only a quick weekend, but I am beyond excited.  I really want to one day live in CO, and this trip will be just the two of us.  I am also really excited because there is a world renowned sensory processing children’s therapy center, and I am hoping that we can get an appointment to check it out, and maybe steal some ideas for the sensory gym I dream of building for Ryan one day.

We have decided not to move back to our house.  It has come down to the school district and their special needs programs.  Where we are living now is a better district, and is more robustly funded for special needs children.  So the best thing for Ryan is again the answer.  It’s the right decision, but Micah and I did not come to it easily.  We’ve spent so much time and money to make our hundred year old bungalow an amazing house, and we were almost to the point of the “fun stuff”.  Like a kitchen remodel and a finished basement.  The asbestos is gone, the foundation is now solid, the flood control is intact, now all of the windows that didn’t open have been replaced, and the list goes on and on.  Que Sera, Sera right.  We are selling the house first, and then we will look for a house here.  We are thinking of a ranch, with a basement.  Fingers crossed that we find one, in the super awesome quadrant of town that we dream of one day living in.

At least it will be a whole new house for me to decorate!!!

wall of cabinets, see they don't match

check out this kitchen, none of the cabinets or counter tops match

Not connected to the wall

Oh and they aren’t even attached to the walls!

School

Ryan is doing well in school.  She is struggling with the new schedule though.  She has to go to bed an hour earlier, which is tough for us to accomplish.  Once Micah gets home from work it’s already time for Ryan to go to bed.  So we are all struggling with the transition, trying to get Ryan and Micah their quality Daddy/Daughter fun time every night, and all of her med’s, swing therapy, book and a bath.  So I’m switching it up.

To make the mornings easier I’ve prepared her outfits for the week.  Obsessive much????

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To make nighttime easier, I’m going to start giving her a bath when we get home from school, and we’ve rotated her feeding tube schedule so that she eats her meals by mouth in school and then we tube her before school and after school.  Her bathroom schedule is also off.  Ryan has always been very private about her “moments”, and normally took care of business mid-morning.  Now she doesn’t seem to want to do it at school, so I’m trying to give her some privacy after school and yet not enough privacy that she falls asleep, and then throws off our whole new routine.  She likes to have these events in her crib, so you see the issue there.

All in all not a lot of real issues.  I have tried to meet all of her school mates parents at pick up and drop off.  I know that these are my best shot at new friends, who would get Ryan and get me.  I have had coffee with one of the Mom’s already, I brought a soda of course!  I signed up for the PTA and I volunteered to do the Halloween and Holiday party for Ryan’s classroom.

I have also had a panic attack about the transition and accepting our new reality.  I’m not really ready to go in to it too much right now, but I am doing fine now and I am going to start going to Yoga a few times a week to help get back (ha,ha) in shape and to relax.  I’ve also gone to the Chiropractor three times already and my right arm is no longer tingling!!

 

The First Day of the rest of her life

Today is Ryan’s first day of Pre-School.

1st Day of Pre-School 3

Yes I’m being a bit dramatic, but this is a rough one.  Most Pre-School programs are a few days a week, a few hours at a time.  Ryan is enrolled in a Special-Ed pre-school program, so it’s five days a week, six hours a day.  She will get PT/OT/Speech and Music Therapy in school.  We will continue to take her to PT in the pool, Sensory OT, and two Aug. Comm. Speech sessions a week.

So Ryan’s in school thirty hours a week, and what the hell am I going to do with myself?  I decided to look for a job.  I’ve always worked, other than these last few years, I’ve been working since I was fifteen years old.  I normally had two jobs at a time.  One serious job, and then serving for extra (travel/decorating) money.  Now we’d like to get better insurance for Ryan.  I found out that Starbucks offers great insurance if you work an average of twenty hours a week.  So I applied online, and luckily they called me for an interview.

1st Day of Pre-School 2

The interview was to be today.  Last night Ryan woke up at two am, puking.  This morning before school, Ryan spit up a few times again.  I cancelled the interview.  I might be ready to go back to work, but my life isn’t ready for me to go back to work yet.  Micah often travels for work, and I would have to be the one to always leave work and get Ryan or stay home with her if she is sick, needs to go to the Doctor etc…  I don’t want to accept a job, that I don’t know I can give my all too, but I do want to get the Pickle better insurance.  Obama Care in 2015 here we come.

I also wanted to work so that I could justify not cleaning the house, making dinner or keeping up on the laundry.  My built-in, valid excuse is now in school full-time.

Darn

First Day of Pre-School

Three Year Photo Shoot

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I feel that these images capture Ryan so beautifully.  To me they show what is gorgeous about Epilepsy, brain surgery recovery, numerous developmental delays, and wearing leg braces.

Ryan rarely, (if ever) looks at the camera, much less smiles on command.  To me, the images make it seem like she is modeling, that she was told to look wistful, shy, and beautifully awkward.  I wanted some of her in her AFO’s.  I wanted to embrace our life as it is right now, and display to the world how beautiful a three year old disabled girl is.  I got it in spades, and yes I am gushing.

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I didn’t intend to have the photo shoot hide or highlight her disabilities.  I just wanted some great pictures of my kid.  I picked a bunch of outfits and wanted her to look as adorable as possible in front of all of these great backdrops.  The Photographer and I tried everything under the sun to get Ryan to look at the camera, but she just doesn’t.  We jumped up and down, swung her for awhile, bribed her with fruit snacks, sang songs and acted like fools to try to get the kid to smile, but she wouldn’t and you know what, I’m happy that she stayed on her course.  I’m happy that as always, Ryan is authentically herself.  She is not ashamed, she doesn’t hide in public or spend one second caring what anyone thinks about her.  I do.  I am the one who needs to get with it.  I am the one who can be stifled by her braces, her lack of eye contact and understanding.  I’m moving on.  I’ve got bigger fish to fry.  She is starting school next week.  She is a big girl and it’s time for me to be one too.

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All photos by LuLu Photography, of Chicago, IL

 

CA or Bust = Bust

imageToday we were supposed to go to California. A long awaited trip for Ryan Margaret to see/meet Micah’s Mom and her side of the family, and to stay with Micah’s other Aunt and meet her friends.

We were also going to take Ryan to Disneyland for the first time! The CA cousin contingent and Ryan were going to tear up those Tea Cups!!!!!!!

I had Ryan’s toddler version of a maxi dress and straw hat ready for our trip to the OC! Vicki Gunvalson watch 2014 will not yet commence for us it seems.

Sunday I started to feel like crud and yesterday Ryan got the bug. I noticed that she wasn’t herself, I went on seizure watch paranoia high alert. Then this morning when she woke up with a fever and a green stuffed runny nose, the decision was made.

Fever’s and flights are a bad idea. Seizures can be brought on by fevers.  And every time that we take a trip and Ryan is a little under the weather, she ends up hospitalized.

Not hospitalized because she is so sick (generally).  Hospitalized because she has so many issues and most emergency room Interns get spooked and admit her to “be safe”.  We postponed the trip and we are staying home and visiting our Doctor’s.  As much as I support St. Jude’s I don’t want Ryan to visit. Even if it means we miss out on an opportunity to meet Jennifer Aniston or Marlo Thomas.

Like the responsible parents we try to be, Micah took Ryan to her Pediatrician and we called her OH Neurologist.  I passed out on the couch. The advise is to keep watching her fever and keep her well hydrated.  Everytime the kid looks at me too long or rolls her eyes I panic that it’s a seizure, so the advise for me is to take a chill pill.

Couch snuggles are back though, and those make me happy!

 

Registration

I am obsessed OBSESSED with Gone Girl.  I am years late to the party I know, but I can not stop listening to this book.  I started on my drive two and fro Ohio last weekend, and now I am finding reasons to drive around.  I have also been listening to it in the house while I do chores, take a bath (you can’t hear an I-phone from the shower, hello), or work on Ryan’s school registration forms.

These registration forms are hurting my hand and my heart.  Our little girl is becoming a big girl.  She is going to be going off to school five days a week, in just two weeks.  Our very sanitized version of Gone Girl.

How am I going to make it through the days without my Lovie.  I used to miss her when she was just in the carseat sleeping behind me as I drove around.  Now I’m going to have to drop her off and pick her up, separated for hours and hours every day.

This is what Micah has to deal with all of the time, I should cut him more slack.  How is it that I want time to myself, yet I’ll be so lonely without my Bestie around all day.  A quandary that all parents find themselves in, but it doesn’t make it easier.

How did you get through it? I know that this is what is undoubtedly best for Ryan, but I will be in tears in the parking lot?

Maybe I’ll stay, parked in the car listening to Gone Girl again, and again, and again, until I’m ready to go?

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