Sunday, April 29, 2012

Sissy's

I've wonder before if I have spaced my kids to far apart.  I worry they might not be friends when their bigger.  Then I just think about my brothers and I.  My youngest brother and my older (not oldest) are six years apart, and all of us hang out.  We are each others "couple" friends.  Leighton and Brother are best buds,  She calls him buhba. I know they love each other a lot.

 It's Sister and Leighton that I worried the most about. I don't have a sister.  When we hung out as a family the boys always played sports, and I was left out.  If you know me then you know I am NOT going to do something I have zero interest in just to fit in.  So I would sit on the sidelines and feel a little lonely, and wished I had a sister.

I was so happy for big sis when Leighton's gender check said she was a girl (Poor brother was in tears, but he couldn't love her any more now if she was a boy).  When Leighton was diagnosed with Ds I felt bad for big sis.  She would be like me.  She would be missing that sister bond thing just like me.

Well I was wrong.  These two are so cute together.  They play with each other all the time, and Leighton LOVES getting all of sisters attention.  They have this game where they hide under a blanket, and the hug each other while I say....Where did Leighton and Sister go?


Then I pull the blanket off and they laugh and laugh.  When sister holds it up Leighton kicks her legs and puts her hands up to pull it over them. She has the biggest smile.  I am shown over and over that it will be fine. Our family is SO perfect.  Just the way it should be and we are super lucky.

I wouldn't change it if I could.

 Although brother is asking for us to adopt a 9 year old boy that loves baseball just like him, so he ALWAYS can play catch.  Maybe that would be more perfect for him.

For me though, it's just right. When I had Leighton one thing I thought was...I will have this buddy for life, she will be like my sister, and we will travel together (and I was SO excited). I don't know now if big sis will share with me.
 (Getting Leighton Kisses)
 -JS

Friday, April 27, 2012

watcha waiting 4?

I know you all have been waiting for these pictures. 
Remember the colored skinny jeans I was waiting for Leighton to grow into?  
Well she wore them today!
 She looked AHH-Door-able!
She wore them for this special event.
We're proud of Uncle Dah.
-JS

Thursday, April 26, 2012

mommy guilt and things.

We've been spending A LOT of time at the ball field.  I always stay at practice because Leighton loves to be outside.  She gets so happy when she knows she going to be playing outside. 

(these photos are a collaboration between my little bro and me. 
I can't claim them for myself, but I got her to make the smiles).

She giggles so much lately.  It's the best to see her happy smile.  

She still loves her some Blue's Clue's.

Blue, and Steve are always getting kisses.  Lucky's!!!  I think she likes it because Steve and Joe talk to her. Oh and there's a dog, and Leighton loves Dogs.  

She had her 1 year check up, and her doctor is so pleased....well except the fact she is "over weight"  Umm isn't she a baby, and one going into surgery? So why am I supposed to be worrying about that right now?  I want her plump for surgery, it's kind of my goal here!  Especially since you just had informed me they will probably want her in your office for weight check post op! 

She had her first speech therapy appointment, and she actually babbled for her.  It was like she knew she was supposed to show her what she could do. When they come she always bangs her toys together and looks and them like "see me bang toys, good eh?"  she doesn't bang toys much anymore, unless she is playing her xylophone.  It's like she wants them to know she's doing what they want her to do, and they're free to be on there way now.

I don't know how "pleased" her therapist are.  They say she's a rockstar, but when they leave I always have extreme mommy guilt.  Like I'm failing to do what she needs.  I just hate to think about therapy all the time, and now I feel like I always have to be like OHHHH, TAH TAH because mama dada bahbah aren't enough and every time she wants something we need to be signing "you want" and am I saying it "authoritive" enough? Then there's physical therapy, and she's doing all her exercises pretty great just waiting on her to decide to do them on her own, oh and maybe I'm not pushing her enough?  Then am I putting her spoon in her mouth the correct way or am I encouraging her tongue to thrust?  I thought it was awesome she was clapping, and could drink from a straw right on time, she also points and imitates some things (clapping and fake laughing) but it feels like it isn't ever enough.  There's always a new goal, and to be honest therapy kind of sucks because it makes you feel like your a failure as a mother. It's really like 3 hours of why you suck as her parent. Am I the only one who comes away from it feeling like this sometimes?
We'll keep trudging through though because it's important.  I really am thankful for therapy too, and I promise to change my attitude.  It's not that big of a deal really. Just a little venting on the week.  
-JS


Monday, April 23, 2012

Finally a HaPpy BiRtHdAy!

 I admit it! I was obsessed with Leighton's Birthday this year.  I thought about it, and stressed about it for months.  It had to be bigger then any other first birthday I've done. I knew she didn't need a lot of people, not in that way, but I wanted it a big deal.  I was contributing my obsession to her pending surgery.  I thought that must be why I was so adamant that I put a lot of effort into this party.  Then last week I finally came to the realization that it came from her birth.  
Her birth wasn't celebrated in the normal way.  I got a lot of presents for her and a lot of congratulations. But I also received a lot of sympathy cards, phone calls, and comments.  I know some of them were for her being in the NICU and sick, but also, there were some that were more of the...Sorry for your stroke of bad luck. Undertones of I'm glad it's you and not me (can you imagine).  By the way I'm not trying to hurt anyone's feelings, but this was our reality.  
 I've been reading Bloom by Kelle Hampton, and her sister said it best (at least in my mind). She said society conditions us to think having a baby with "special needs" is unlucky.   I cried over it (Ds) not very long.  My trauma was more over how society would react to her, and me. I never pictured my self as that type of Mom, and I had to adjust my outlook on the mother I was and was going to be.  I was over it, that Ds thing.  I was worried about her health and some of the worst news was when my nurse informed me she wouldn't leave the NICU until she was discharged (around a week)  she would NOT be coming to my room, EVER.  I loved her, and she was so cute. I just wanted my baby girl with me, and coming home with out her was the worst moment of my life. 
 (we teased she was enjoying the tanning bed a little too much, 
because she had to stay under the light 5 days).

 I think I must feel guilty for the tears that were shed at her birth. They were unnecessary, but how was I to know?  How is anyone to know when society tells you that your new child is a defect, and most of the population would have aborted the fetus if they knew. 

I don't think I can truly convince anyone of this fact, unless their in this same ride as me.  I don't know if people will fully ever believe it, unless their this kind of a Mom too. This Ds thing is insignificant, Leighton is perfection.  I get the "I bet she will be high functioning, she looks like it's a mild case, you can't even really tell, and she exceptionally cute, that were lucky of that"  a lot.  My husband and I talk about all the Ds kids we meet, and see, and really aren't they all cute, and amazing?  Yes we certainly think so. Society perceives these kids a certain way, and I'm sure I can't change societies views.  I just want to be happy with our little bug, and give her a good life.  She has an amazing family, and extended family that love her.  

 (her adoring brother)

(her silly sis)

 (the big family)

One of my favorite examples of this is My little brother. He never shed a tear over Leighton's diagnoses.  He held her for us when she was first being admitted to NICU, and they were stabilizing her oxygen. I was to numb (epidural, and after birth stuff) to go with her, and her Daddy was in shock from the news.  He celebrated her life, and was excited for her, from the moment He got the phone call.  

My Mom and little brother call me everyday to bring her over. 
 (the two teaching Leighton how to lick the frosting off the candle)

They want to hold her and make her smile.  They miss how happy she makes them feel.  If my Mom has a bad day she calls me to bring Leighton over to make her feel better.  She just does, make your day bright, that is! 

 (her favorite present of the night)
This really has been the best year.  There has been a lot of ups, and downs with her medically (heart surgery mostly), but she is our little sunshine, and that song is truly about her.  Were so happy to have her, she makes our family whole.  It's the best.  
Every year I will celebrate it in a happy way. She is amazing, and I'm so happy to have her. 
-JS


Saturday, April 21, 2012

a pinwheel party

Here is the party's decorations photos. 
1st birthday, a Pinwheel Party.

The Birthday Babies.
(Tycee, and Leighton)
Born the same day, In the same hospital.
 The Pinwheel Party.
Tycee's cake arrives. Isn't it cute with the buttons?
 This was Leighton's cake.
 My cousin (Lorie) helped me with it. I love it, and I did NOT want to cut it.

 The dipped Baby food jars.
Stuffed with flowers from my yard.

We had to have striped straws in Jars, because that's the thing.
I didn't get as may pictures as I wanted.   
There were pinwheels all through the yard, and my sister-in-law made poms to hang for me. 

Leighton loved it, and I will do a whole birthday post on her. 

It was so ...busy, fun, crazy, messy, exciting. 

Even if the beautiful pink cloudy cotton candy I had made (for 2 hours, what a mess, sugar everywhere) turned into a ugly sugar mass before I could put it out. Did you know cotton candy melts??? Why didn't I take a before and after...I was not thinking! 

It was worth all the time and effort to celebrate Leighton's first year of life.
-JS

Friday, April 20, 2012

Tuesday, April 17, 2012

inspiration.

I know dipping jars in paint is big right now, but I didn't think of doing baby food jars. Until I saw this blog, and I knew they would be perfect for the center piece at Leighton's 1st birthday.  Yes it's down to the wire, and I've been working like mad making pinwheels and such.  Here's the center piece.
the process. 
this whole project was free, and that was an added bonus. I used furniture paint I had, and scrap paper, and twine from other projects.  I am going to use the flowers blooming in my yard right now to fill them.  I can't believe it's been a year, look how big she's getting.
I just think she so cute!
-JS

Friday, April 13, 2012

spring break..

We didn't leave town during spring break, but we're still having fun.  I love weeks were we have nothing really to do. There has been no appointments and we can just do whatever. Even if it's just stay home, and lay in bed until 10.  
(pictures are taken with the iPhone, it just doesn't take as good of pics as my real camera).
Sissy's hanging out playing iPad...
Daddy and I can NOT wait for summer. I'm seriously loving not having homework, and be to school every morning.  
We have been watching brother and Daddy practice baseball.  Daddy is Brothers coach for little league. Leights gets so excited when she get's to ride in her stroller, 
 and we have found out baby girl LOVES to slide down the slide (on my lap, not ready to send her down solo yet).  We also went to the Pie (our favorite pizza joint) for dinner this week. Leighton was all about her pizza crust.
Daddy's boss invited Leighton and Me up to eat at the roof after his meeting this week.  I can't tell you how much she loved this chocolate moose thing, with a nutty crust (my grandma used to make it for us all the time, I need the recipe).  She even licked the little spill off the table cloth and gave daddy and I the hugest smile.  She has really taken off with eating lately.  She is finally finding Joy in the new tastes.  We also heard the tabernacle choir practice, and she enjoyed that until Mom pocked her in the eye (by accident).  Everyone was commenting on how well behaved she is all night and then I go an ruin the streak of this perfect child and she was so cute she tried so hard not to cry.
My new stress is Crawling.  I know she will do it on her own time, and I'm not worried about when.  I have just been reading how good it is for body and mind that she does it correctly so we practice everyday.  She has her PT exercises down. He doesn't come enough and too far in between so I invent my own to add, these are just things I did normally with my other children.  I help her do the stairs, stand up and pull things out of drawers, help her crawl.
She loves to stand up to our sliding glass window, and bang on it.  She gets so excited pulling out my slips and tights out of the drawer, and she smiles so big going up the stairs (even though I do most the work).  Life has been nice with nothing much to do.
-JS

Saturday, April 7, 2012

acceptance.

LC first Ice Cream Cone (look how tight she is holding that baby)

I read Kelle Hampton's blog.  I like it because she chooses to consistently look for the good in life, and now to my point....

A few post's ago she talked about how her husband had asked if Nella would be smart.  Her answer was I think she's brilliant, but they are known to have "a child like mentality" and her husbands response was to say that was so cool.  She then received some "nicely" worded e-mails about how that was wrong to say, and that their is even some Ds Men and Women going to college.   And I thought, Why did you need to do that? What purpose does it serve to take away her moment where she realized her Husband would embrace the fact their child might want to dress up for Halloween every year until she's 40,  maybe Believe in Santa Clause, and the Easter Bunny well belong her peers.  In that exchange He let her know He doesn't care if Nella goes to college He will love her anyway.  They took that beautiful moment and made her aware of how politically incorrect it was to them for her to say that.  They made her feel bad. I want to know why?  Some Moms I know have talked about the unfairness that can go on it the Special Needs communities ( a topic for another time). So she needs to hid from the world that some don't go to college.  Is she only allowed to recognize the rare few who make it to college.  Why can't we just be OK with the exchange between her husband and her?   It made me realize I don't want to be an advocate for Leighton like that.  I don't want to be the one out there that needs to change everyone's vocabulary, I don't need to announce that she is more then her Trisomy 21.  Leighton will do that herself as people get to know her, and that will be more effective then any words I can say will.  They will learn to look past the extra skin fold on her eyes, they will look past that tiny tip of her tongue, that pokes out.  They will see her smile, and notice the Bluest eyes.   I've been thinking about how sometimes when we are so forceful as parents that we are actually pushing people away.  If I chew someone out when they use the 'R' word in front of me then I might make them avoid all Ds kids in the future.  Believe me I notice every time it's said in My Presence, but I know that my Family is working on it, and it still slips. It was a word we used growing up, and was never associated with Leighty bugs peers in our minds, but now it burns My ears, it's like a siren
 LC and Her Grandma my Mom (I LOVE this pic!)
I wonder if maybe we could take a more excepting approach ourselves. What would happen if we did? I know sometimes being parents to these cuties we really will have to put our feet down and fight. I'm talking about those innocent mistakes. Most people are hesitant to approach our children because they are so afraid they will say and do the wrong thing, and offend us.  Maybe if we can let the terminology brush by us a little then they can become comfortable in the situation. They will learn through us what's the correct things to say, and the correct things to do as they spend more time with us.   I guess as Leighton grows up, and they say Does Leighton Have Down syndrome, I want to be like YES, Yes she does. Isn't she amazing, beautiful, and perfect?  I want them to feel wounded because they defined her by that first, but acknowledge it and then be friendly so they also want to see what's amazing, beautiful, and perfect about her.  I don't want to shove the person away that has the courage to step out of their comfort zone.  Maybe they don't say words just like they ought, but maybe Leighton wont say words just as she ought as well.  I think the acceptance can go both ways.  Kelle was doing her best. I know she's more public then most, and her heart is truly in the right place.  I guess being a new Mom I don't want to be scolded either.  I learn along the way what is correct and not. Hey, I even have learned you do it Ds, instead of DS because syndrome is not capitalized! Ha I didn't know that before I had this baby, and no one yelled at me.  I'm learning.  I know hearing the R word, and other things that I think are wrong will continue to hurt and it will certainly get harder, and worse. As I'm learning I want to give people the benefit of the doubt, and I want to remember that acceptance can go both ways.
LC first Easter Hunt at Great Grandmas.
-JS

Monday, April 2, 2012

it stinks of spring!

I'm excited it's Spring. I thought I would bring some blossoms in my house.  At first it smelled "a hint of Spring", but Big Sis informed me that now "it STINKS of Spring!" 
And she is correct.  Now that my house is sooo...(nice word).... fragrant, I admit might have gotten a little too excited about Spring.
You can see why I wanted them in the house though, right?

Spring also makes me want to start new projects and making Leights blanket inspired me to pull out the hubs, and mine.  It's been in "storage" for two years now.  It just needs the boarders and it's time to get this baby done.  I've been waiting for a new bed to lay this creation on, and I have a feeling the new bed might be close.  So this baby is getting finished, and posting about it here gives me some accountability right?
 Of course our little Spring Chicken was hatched in April.  I'm Still planning what to do for this little munchkins birthday.  The other kids started to count down yesterday (19 days..18 days), and even sang Happy Birthday Month to you. We might be a little excited about birthdays around this house. I can't believe she is going to be a year.

Dear Time,
Please slow down.
Thank You,
JST