My post is so late. It was hubs day off so we were running from one thing to the other. I got my tooth finished this morning, and gone is my pirate look, hurray!
The kids had a hard time falling asleep because their SO excited for Halloween tomorrow. It's almost as good as Christmas. It will be crazy insane busy I'm sure. Tomorrow I will probably just post pictures of our Halloween costumes. I do feel bad for those on the East Coast. We're tucked over here just living a normal life thinking about Halloween and their lives are all disrupted. It makes me feel guilty. The only thing that has really effected us so far is the stock market being closed, and that just means more time with the hubs because he wasn't distracted by it. It breaks my heart to see the footage of the destruction.
Leighton and I (and Hubs) are going on an adventure soon. We haven't been on one like this in a year so this will be fun, hopefully.
Leights on the last one...
Were heading for some warm weather. Nothing to exciting like the Bahamas though....Just Scottsdale, AZ. I haven't been there since Junior High so I don't remember it well. Maybe we'll come back with a tan or something. Also in my news...I got released from my Church calling. It was sad because I knew Sunday was my last day and I was sick, bleh! I will miss teaching those kids, and having my Sundays filled with their little singing voices. But the last year and a half has been pretty stressful so I'm looking forward to maybe chilling for a while (that's is if I don't get another calling...crossing fingers) lets put it out there.... a dream calling..how about activity days with Janalee :)?? To bad the bishop doesn't read my blog. Leighton will be sad too because she loves singing time at church. The bad thing is you could always get called to something worse and the Ladies in the presidency with me were very kind when I had to take so much time off with Leighton and they pulled my weight. I will miss working with them.
So this Post isn't very much Down syndrome, but I guess the point of that is...We don't always think, stress, remember it. That's right I'm spinning it in my favor.
Well I'm back, kind of, sort of. I can't believe Down syndrome awareness month is almost over. Just 2 more post. It really hasn't been that bad for me because I just LOVE my little Leighton and I could gush about her all day. She's totally got my heart. I'm so thankful I have a little girl who makes me aware of Down syndrome, because it makes me aware of so much more. I'm proud she's my little baby, and I never want to be without her.
I hope she grows up knowing having Down syndrome is a badge of honor. She will probably be overly confident because she gets so much attention from her family, our friends, and even strangers. I'm so thankful for the friends, and opportunities that have come from having a baby girl who happens to have Down syndrome.
It's my turn to have the stomach flu I guess. So my post of the day is the stomach flu sucks. Its even worse on a Sunday because your supposed to do sharing time, and then when you feel like eating it isn't anything you have at home. It sucks because your husband tries to help, but your house ends up a wreck and the wrong things get done, not the important pressing ones and your the one ready to pass out (dehydration, no food because you can't just eat whatever's handy that makes your stomach sick all over just thinking about it) cleaning botles because the babies out, and making sure the busting garbage cans are taken out, and the one dragging a 40lb bag of dog food into the pantry. So fun when Moms sick. -JS
Today has been crazy, and I haven't had anytime to blog. Brother had a football tournament, I had a lesson to work on for church, we had to get a few little things for sisters Halloween costume and now were at the movie.
*go see hotel transylvania, so fun!
When my therapist visited this month she told me I'm one of her few families she comes to consistently. She's always trying to track some of the other mothers down, and asked me what maybe it could be. I have been thinking about it and I remember how I felt some of the first year. I didn't love it. It's not fun to be reminded that your child is behind (you have to start getting some tough skin). Plus there is the fact if you may have been slacking that month and you feel guilty. It's like showing up without your homework done, and maybe even worse because you should have been doing better. Come on, you think..this is your child and you love them, and doing therapy is so good for them. I have learned that I just have to take my feelings out of it. I'm trying my best here, and sometimes I get busy with life. I have 2 other kids, a consistent mountain of laundry, specialist to see. Hey we even had Open Heart Surgery. So OK I didn't practice the stairs daily, or sign "more" very often at meal times. It's not like they are going to fire me, or give me an F. I remind myself I'm probably not the first slacker mom they've seen. I realized if I just admit to them that signing is very unnatural to me they will just try to help me come up with idea's when I can practice it better. I will admit it, I hated therapy at first, but now I don't mind it. I appreciate the therapist Leighton has because they seem to really care if she learns and grows. They push her, and she may not always love it, but she's getting there. My new favorite is Group Therapy. (I didn't love that at first either, but kept forcing myself to go anyway) It's so fun to get to take Leighton to play with other kids. Meet other Mom's that are in my same boat. This week they came dressed up. Leighton would not let me get a good picture. She'll wear it again though so we'll try for a better one.
Just like most of you we woke up to Snow today. So just kidding in thinking it was fall, it decided to just turn into winter instead. It's so cold outside, maybe because we haven't gotten used to the feeling yet, but we are all hanging inside today.
It's a miracle we can stay in this evening. Only because it's Thursday night. I love Thursday night's because dance lessons, swimming lessons and football games are all done for the week. We only have one day of school left and then we're into the weekend. It feels so nice.
Lil' miss obsessed with stairs..
I don't really get into Politics, but I did see the backlash all over my Facebook page about Ann Coulter and her use of the R word. If you want to see someone who happens to have Down syndrome answer how he feels about it watch this YOU TUBE video. I love how he says having Down syndrome is wearing a badge of honor because they go through so many struggles and still manage to enjoy life, it's so very true. I don't watch this Ann Coulter, and I would have been willing to give her the benefit of the doubt. Lots of good people let that word slip out of their mouths with out realizing who they hurt by the use. Her response to the backlash wasn't very intelligent though.
It has been a super busy Sunday for us. Now were at Grandma's for dinner,
and playing with cousins.
I'm so thankful for my Mom for all the work she does for her family. I know not everyone has a good mother, and I realize I'm so very lucky. She really loves her Grandchildren and makes her house somewhere they love to visit. My Son calls her at night to tell her all about his life. She always comes to Disneyland with us, and always helps with my kids when we have to take Leighton to her doctors appointments (even if I make her wake up at 5:00 a.m.). She took care of Brother and Sister for us when Leighton had surgery, and it was such a relief to know they were taken care of and I didn't have to worry at all about them. We love you Grandma S!
Today was Special Needs story time. Leighton met a friend there. I think they just might grow up and be BFF's. Leighton just hugged her over and over, and her buddy didn't seem to mind. Well she didn't cry anyway. This is the only picture (hubs took it) I have because I forgot my phone, and camera today. It was just so cute.
Something I struggled with after Leighton's birth was the lack of control I felt. I hate to feel out of control. I hate anything with wheels under my feet (skateboards, roller skates, even ice) because I feel out of control.
The lack of control started even before her birth and continued the second the hospital took her from my arms. The NICU gained control of my child. Ya they let me sign papers for procedures, but my other children couldn't visit, they wouldn't even let me open the blinds for them. I could only have 4 other people on a list to see her. I wasn't allowed to hold her other then feeding her, and I only had 30 minutes because the doctor said she had to be under the UV lights. We had to fight the pediatrician to get her home.
Then came her heart. I prayed and fasted, and tried everything I could to will that hole to close in her heart. I had no control in fixing a hole in a heart, nothing I could do would help it. It was up to God to grant me a miracle, and I didn't really like that. I had to leave her life in the hands of people I didn't even know. They stopped her heart twice! I learned I have no real choice if my child will live or die, it's up to God. I had the worst fear that surgery recovery would go like the NICU (it didn't). I had a nightmare the night before she was released that I was fighting with the nurses to let her go home. They surprised me and didn't make me. God did give her the miracle of a amazingly quick recovery, and I did use everything in me to take care of her the whole time, and mostly the nurses let me. I spent 30 minutes slowly giving her the medication every time because the CICU nurses (at night when I wasn't there) would force it down her throat until she barfed (They ruined all oral meds for her). I mostly never left her side.
Anyway the point of this is that I learned that I want to control my whole world, but I have no control. Only God does. I can't control my children, I can't control my whole world. I can't control others. I can make it as safe as possible, but God can throw me a curve ball in there at anytime.
So what have I learned I can control? I only can control how I react in any situation. I can choose how my attitude and actions will be when I get thrown those curve balls. So my goal is to make my reactions something I will be proud of, and not regret later. I've heard this all before, and I guess I really never believed I couldn't control the world around me. Not saying I really like that I can't, but now I KNOW it.
Today we basically spent the whole day at the dentist. My kids both needed fillings, and I got this pretty baby worked on today....
Ya my filling fell out and I never went and had it fixed until I had to have a root canal. I think this happened last year. With heart surgery and summer I'm just getting it finished (low priority). My dentist says you should make an appointment in two weeks, but I'll see you in four months, and chuckles. It will be nice to get my real crown put on since I just love looking like pirate.
Arrrgghh it was the best day ever, not!
Sometimes I feel like now that I'm a "special needs" mom that I can't always be real. I heard a mom's story (In a book I read I think?) she told about her perception before having her child on being a mom of a child with special needs. She talked about seeing a Mom pushing her Down syndrome daughter in the shopping cart and she looked so tired, and unhappy and she just assumed it was caused from that Down syndrome child. I related to it because I feel like people are sometimes watching me like that. Now don't say people aren't, because you don't, but this actually happens. There are judgmental people out there.
I don't usually worry about what people think of me. I do worry now though if I ever seem tired or sad, will people I don't know just assume it's from Leighton? I don't want that because that's so unfair to her. Usually it's my other kids (honestly my very busy son) that is wearing me out, and if I'm crying it's because I have PMS and I'm overly sensitive not because Leighton is so very hard.
She has actually been my easiest happy child, but ya she's still a child. She still climbs up the stairs when my back is turned, she pops things she shouldn't in her mouth, she pulls her sisters hair, and bit me one time after I made her do swimming lessons.
I think we feel like we can't always show were sad or unhappy or people will be like....Yep being a mom to a special needs kids is horrible. It always has to be happiness or perfection because we always have to fight societies stereotypes that are placed on our kids.
So if you see a mom out there flustered pushing her Ds baby in a shopping cart don't make the assumption it's caused from that baby. Actually that baby might be the child who can smile when her Moms sad or mad at something else and turn her day back around. That's just what Leighton does for me. I am actually a lot happier now I have her, probably because she helps me let my frustration go a lot faster (I am a grudge holder). I can be fuming at my son for say... getting caught throwing toilet paper wads on the bathroom ceiling at school (ya true story, I have that kid :), and walk into the other room were Leighton is, she'll smile, and the anger is gone. Her smile just melts me.
Another Mom on facebook shared this story and I loved it. Since most of you probably aren't friends with her I thought I would re-share it here. It made me cry, in a good way. I'm so happy his wife fought him about aborting their Down syndrome fetus and He chose not to run away and step up and be a dad. Anyway watch this little clip that ESPN did.
I have been writing my post days ahead, so I can keep up with posting everyday. Of course I've run out of them on the busiest day this week. Leights has not been feeling that great, so she doesn't let me put her down. Plus hubs brother has been in town so we have been visiting hubs family today.
So for today it's only a picture.
Leights watched this whole Barbie movie when we had girls night last week.
With Leighton we notice any new development. I get questions from her therapist monthly.... is she doing this or that yet? Leighton has a cousin who was born the same day. Their BFF's and we see them a lot, so I notice how far behind the "normal" she is. Right now I'm OK with it. I'm proud of Leighton. The doctors made me feel I shouldn't expect much, and My life was going to very likely be miserable. Well guess what? It isn't. It's the same with actually more friends now. I don't live in the fantasy land where I think most kids come healthy, actually there are so many out there just fighting to be here. I think that the people with all healthy kids are actually abnormal. We meet with a group of parents and kids weekly. The kids are all behind, and they all have different reasons for it. I observe and talk with the Mom's and guess what? They're all Happy. Ya they might tear up about the fact their child has had 3 open heart surgeries, but their lives aren't at all miserable. We get to notice all the tiny developments, and the joy over it is huge. So here's what's new this week.
Leighton has decided she wants to learn how to dress herself.
Oh and if you try to help her you will get a
ehhh....very stubborn this one is.
The other day it was her trying to put tights on her legs, and a shirt on her head. I took this picture of her trying to get a dress on. I find it pretty smart of her to know what goes over her legs,
and what goes over her head.
and then last night. She decided she would eat like a big girl.
She didn't even throw the plate, and that's big.
She throws everything food, spoons, and sippy cups.
She usually yells for the dog when she does it,
even at the restaurant. (DOG, DOG throw pizza crust on floor)
We all clapped for her, every successful bite, and she would clap too. We had the spaghetti flying!
I think it's so good for women to have hobbies. My husband has lots... football, golfing, skiing, the stock market (I bet there's more too). I don't scrapbook, or make cards, but one thing I like to do is paint (and repaint) furniture (basically anything wood is fun).
Stripping old paint isn't actually fun, but making something look great again is worth it. My favorite is painting new fresh wood.
Stacked in my garage is a huge project. My new unfinished bedroom set. When I ordered it (July) Leighton wasn't so busy (she's really into stuff this last few months). I finally finished the dresser. It only took me a month (or more), I used to finish stuff in a couple of days.
(This is not its real location, we need uncle dah to come help hubs take it up the stairs).
It feels so good to accomplish something.
So my thought for the day is to make sure you take some time to do the things you love. I think it's easy for us Mom's to ditch our hobbies.
Like for me I don't like taking tons of time away from my kids, and this kind of thing works for me because I can work on it when they're out playing. Even if it does take me like 5 weeks to paint one dresser! So find something that works for you, if you haven't already.
I have a really close family. My best friend's growing up were my cousins. We lived on the same street as one set of cousins, and they were sandwiched between us, and my Grandparents. My cousin (a year older then me) taught me how to drive. She was in High School, and I was still in Junior High, and she would come pick me up from school. We would sluff together, and she would let me drive (can you imagine if we got caught?). I seriously had the BEST childhood. My family is still close. I hangout with my brothers a lot. Our kids play. Hubs and I consider them our "couple friends". I still see my cousins a lot too.
One thing I don't have though is a sister. I've only observed that kind of relationship, I don't have that bond with anyone. My girls seem to have a great one. Sister tells Leighton she will do ANYTHING for her. They adore each other.
One of my favorite things that Leighton loves to do is her sisters hair...
she brushes it and fluffs it with her hands.
I'm so glad she has amazing sister.
She has such a loving family, immediate and extended too.
A few weeks ago (I know, I just barely loaded the photos) we went on a tour of BYU's stadium. Hubs work is sponsoring the college this year. He couldn't get anyone to go, so guess who had to do it? It actually ended up being fun.
We got to see almost everything (but the locker room).
(No bathrooms for women on the press box floor, a little sexist no?)
I don't know how I ended up in so many pictures?
Sigh fun times!
(it's mostly always Leighty because she's with me all day, and she's cute)