It's been a busy month and I finally feel like it just might be slowing down. The first half of the month Sister has had a lot of dance things going on. She had two performances. I just love watching her dance, she's pretty dang cute. Sister also has her birthday coming and Hubs and I had our anniversary (12 years). Add the Christmas parties in there, school things, plus Leights therapy and this month has been jam packed. The first day of December we made candy cane cupcakes. They were a huge mess, but pretty fun to decorate.
We finally got our Christmas tree up last week. We started a tradition with our ornaments on our honeymoon. We went to New York City, and it was 2 weeks before Christmas. So obviously we needed some ornaments, and we were pretty poor. We bought a few ornaments there as souvenirs. We got one in a little store by Rockefeller center next to the tree.
It was pretty fun, and it started a tradition that whenever we go on vacation we pick out an ornament or two for our tree. So obviously we have a lot from Disneyland, but it really is fun to unpack them and remember the trips we took. For example I have 2 from San Diego when Leights did the photo shoot with Kelle Hampton. It's so fun to remember where and why we got them all. We have new ones this year from Scottsdale, San Fransisco, Boston, and Disneyland (we would have New Orleans too, but hubs broke that on the plane home). Anyway it's been a fun thing for our family to do. Yes our tree is a tacky looking thing, but we love it. Hopefully the month can slow down now.
Can I just tell you this little girl is super into baby signing time. It is really good because she is learning to sign, but we are NOT allowed to watch anything else in the car. We ask her Leights can we change the movie and she shakes her head NO! When I get really sick of hearing them OVER AND OVER I just look in my rear view mirror at her smile and I put up with it. It's been worth it because she's learning them.
Isn't December the busiest month for everyone? Everyday I add one more thing to my calendar. It's already jammed full. I love all the traditions that we have. I love how excited my kids get for Christmas morning. I remember that excited feeling, and you just CAN'T fall asleep. Although I don't always love how early they wake up because I'm tired the rest of the day (especially if we stay up to put some of their gifts together). I remind myself that they are going to grow up so fast, and when they're teenagers I will probably be dragging them out of bed on Christmas morning. It's really easy for me to focus on the crowds, the overbooked days, the stress. I like to remind myself of the fun and wonder my kids feel. Doing that makes me excited for this crazy busy month instead of dreading it.
Last night we went to the festival of trees. It's a humbling thing if you look at all the dedications, and the stories behind the trees. I'm grateful for this moment when my family is all healthy, safe, and happy. The year didn't start out that way, with Leights. We had surgery looming, and I was so afraid she wouldn't survive it. I feel like we are a blessed little family right now.
On the way home I read this article and it made me think about so many things. My thoughts and feelings are so much like this writer. The night of Leightons birth Hubs and I worried about Leights never growing up, and always having to depend on us her whole life. That wasn't something very appealing at the time. Now I do therapy to help her grow up, and be independent the whole time feeling like she is growing up way to fast, and wanting it to slow down. I think people might not get that I actually find having Leights around to take care of always as something very appealing. How lucky am I that I will always have a child depend on me? I wont ever have to let all my children go. I know it's healthy for the other two to fly from the nest, but with Leights it's expected I take care of her forever. I will most likely get to experience being a grandma, and mother in a more mature way while still being the kind of Mom I am now to Leights. When we had Leighton our outlook on the future shifted dramatically and what we thought our "Golden Years" would be like wasn't going to look the same. Once you get over the selfish thoughts you realize all the positives in what you have been blessed with, and your future will be even better then you planned it should be.
Having my special needs child has changed my outlook on being a Mom. With a child like Leights you realize that your children aren't really an extension of yourself. They aren't who should live out your dreams, do the things you never got to do, and that kind of pressure shouldn't be placed on them. Who cares if you don't raise a future president or heart surgeon. You still love them to pieces. Your children are independent people who should get the chance to live out their own dreams. They will turn out as the people they want and should be, not who and what you think they should be. It may be heartbreaking but they have there own paths to walk. They have their own weaknesses to overcome, and strengths to find and magnify. I still think we need to teach and help them, but we can't force them to be who they aren't. She says something like this in her article too, and I'm like YES, that's how I feel now too.
We have to live in the moment, and especially enjoy it when we are being blessed with health and calm. I sometimes have a hard time when it's like this. An amazing vacation coming, healthy kids, a great husband, and maybe a new house...is it the calm before the storm? I hope not! I remind myself I have to refocus my thoughts and live and enjoy these moments. I wish I didn't have to remind myself, but oh well, I'm pretty sure I'm not the only one.
I can't believe it's already Thanksgiving. Where has the year gone? I have my kids Christmas presents bought, which is a huge relief. We are doing one big present for the big kids this year. Leights is getting a wagon for her big one, and a bonus of a baby.
I guess I'll just say it, because I have been getting a lot of questions about it. Are we moving? The answer is probably. As of this moment we are most likely building a house about 2 blocks away. I hate to say this is a final decision as we haven't signed any final contracts, but that's what we really would like to do. We LOVE our neighborhood, but Leights crib, dresser, toys, diaper changer, and everything else has been in our room for over a year now, and it's time we get a little something bigger. We have actually been looking for a new house for 2.5 years now, but really haven't wanted to move from our awesome neighbors/ friends. It's been hard because the neighborhood feels like it's home, but our house doesn't. I really wish we could just drop a new one right on top of this one.
I guess back to the Thanksgiving preparations. It's my first time being assigned stuffing. Which hello there are a million different recipes out there. I bought stove top for backup (horrible, but that's my favorite kind). Hope you all have a great Thanksgiving!
When Hubs was at his meetings in Scottsdale everyone came in and told him congrats on his dealership winning the corporate presidents club award (called something like that) He didn't even know about the competition, he's just awesome like that anyway. With that you usually win an awesome vacation. Usually the owner goes, because Hello, He owns the company and all or Hubs passes the smaller ones on to his other managers or salesmen. He likes to be fair and He's actually got one coming up where they drew names and his name got drawn so he's going to San Francisco in a few weeks to watch a 49ers game. Back to the point his boss called him last week and said we get to take the BIG one he just won this year.
So there is 3 awesome vacations and first choices goes to whoever places highest. So vacation one, the best, The tournament of champions. Which is an all expense paid trip to Hawaii to see the PGA tour, stay in Maui in a super nice resort, spa treatments, and free golfing included, as well as meals. Trip two was the super bowl in New Orleans (hubs would like super bowl, but went to New Orleans this year already), trip three was see the GRAMMYs in LA. We were happy with whatever because they are all awesome once in a lifetime chances. Well he got his E-mail yesterday that said..
Your outstanding performance and extra effort
has earned you a trip to the Tournament of Champions at the
spectacular Ritz-Carlton, Kapalua in Kapalua, Maui!
Thank you for delivering the results necessary to earn this exceptional reward!
(google says this is our hotel)
So excited, it looks like Leights and I will be heading to Hawaii with Daddy!
So I'm putting it out here, because we have never been to Hawaii(well technically hubs had a long layover there and got to see some of it for a few hourson his way to Guam), we need to know any suggestions or tips you have. From my tiny research I really need to get to Oahu for at least a day because I guess the LDS Temple, The Cultrual Center, and Pearl Harbor are all there. -JS
Hubs work flew us to Scottsdale, Arizona and paid for us to stay in a resort with the likes of people like Ray Lewis (some NFL dude rehabbing an injury who hubs was excited to see). It was a super fun trip but the Hotel wasn't what dreams are made of (rude staff, and dirty floors).
We went on a hummer tour and seriously almost died rolling off a cliff. Leighton and another babe were on it with us, and I would say a top 10 worst Mommy moment.
Sunset on ride...
The hummer tour ended at a ranch which was awesome since Kevin Bacon taught me and hubs how to throw an ax.
Not the Real Kevin Bacon
That ranch was a highlight of the trip.
Also a highlight.... I won the first prize in the "wife scavanger hunt" and got a 60 minute Swedish Massage from the fancy resort spa, and that was heavenly.
My absolute favorite was the day of shopping we did.
We shopped our way to old town from Fashion Square.
Which is my new favorite mall ever. It had EVERYTHING!!
It had my very favorite stores ever.
I always shop at them online because
they aren't here. I swear going there was like watching a NFL game for my husband. Loved it!
(I know funny pictures.. I don't usually take pics like this, but I had to text the dress to hubs for a second opinion, and had to instagram Madewell's storefront, and this was so fun for me so Tah-duh my weird pics for you).
It feels like in that month I've developed the habit of posting everyday. Yesterday I was like...I need to post, just kidding I don't. Which is kind of nice because I hate writing. I thought I would post my favorite instagrams though because I do love pictures.
and now were off to see Wreck it Ralph, and hopefully eat at the Pie!
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.