Leightons Mother...

It's been a while but lets see if I can put into words the thoughts that have been floating around in my head. 

I've been thinking about how it feels being Leighton's mother.  A mother of a child born with special needs. Being a mother of a child that has the label….child with a genetic DEFECT.

Being a wife and mother was all I ever wanted to be. When I was eighteen I stuck my life goals up on my wall by my bed and it was a total of three things. A temple, a family, and a four wheeler ;).  It's not like I wanted it to happen really quickly, but it was my future plan.  I wanted to have a family.  College was hard for me because I never could find a focus on what I wanted to major in, so I took classes that interested me.  Really important classes. Classes like dance conditioning.  I didn't want to change the world, or be famous and have any attention on me. I just didn't have any grand future plans. I wanted and still want a life of peace, calm, and simpleness.  I'm just not a world changer. I went to college, tried out and made the dance team (which by the way was how I met the hubs, thanks to dance friends), and I worked for my Mom.

So when I'm 20 along came my dream boy.

I was reading in my college journal a few months ago and I had written a list of what my perfect dream guy would be like. I had just broken up with a guy who had asked me to marry him a few times and I just knew he wasn't what I wanted in a husband, so I had written what I did want. It wasn't anything about looks. It was all about personality and I was laughing because it was like real life Mary Poppins. Someone somewhere had made hubs right off that list of 30-ish important traits he would have and magically he had shown up 3 months later.  I didn't realize this had actually happened until I just read it. I'm going to be honest some of them are kind of annoying now, but I just have to appreciate it because I literally asked for it! Also cheesy but I had drawn a cartoony picture of him (I always doodled in my journals) and he had that exact hair cut, and had worn the same kind of plaid shirt on our first date.

Six months later temple is checked off.

Then a few years later we have our cute little Bubba, and I quit working for my mom, and quit waisting money on school. I get to stay home with him  He's such a boy. Dirty, crazy, wild, and prone to give me heart attacks every second of my life! He's also a my best buddy. He's super outgoing and talkative, just like his daddy.  He loves to make new friends and make people happy.  He hates football (much to his dads sadness), but he loves baseball just like my Brothers, Father, and Grandpa. He gets in trouble a bit, but he tries to be a good boy. He's had stitches a few times and broken his nose, but he tries to save me from extra worry about him. He's great to text me where he is going at all times because he doesn't like me to worry.  

Then came sissy and she is so girly girly, and such a good student. She is smart and her school teachers always love her. We don't worry to much about her because she's always trying her hardest to learn and improve, and she doesn't really ever get into trouble. She beats to her own drum in her fashion choices and cracks us up with her wit about life.  She loves to dance. She especially loves ballet (thanks to seeing New york city ballet on sesame street when she's was two).

Of course they aren't perfect, but the hubs and I think they're pretty perfect. We, like most every other parent, think were so lucky to get these amazing littles as ours.  Of course they have embarrassed us…Like the time Bubba had the massive fit at Target when he was 6, and the time sissy refused to give her church teacher a high five, or the many times she refuses to say hi to people, but they don't really embarrass us. We love them and are mostly always happy to claim them as ours.

And then comes Leighton.

I waited a while to have number three because I felt we weren't going to have it so easy this time around.  I knew that people who have perfectly healthy kids every time are extremely fortunate. That just doesn't happen for everyone, and deep down I knew it wasn't going to happen to me. I was going to be thrown a loop for number three I just didn't know why.

(first holds after her open heart surgery 12 months)

I thought some kind of health problem like asthma like my brother or maybe diabetes. I thought it would be something hard but more like that. So when I feel like I have the courage we go for number three, and my 20 week ultrasound ends up being a lot longer then the other two. They look really close at her brain, hands, mouth, heart, feet, umbilical cord.  They say her kidneys have extra fluid, but it isn't really concerning because nothing else is off.  The hubs is fine with that answer and goes on without a second thought, but I worry, and I feel she has something. I keep getting a feeling she has Down syndrome, I see kids with Down syndrome everywhere. I never noticed them before, and then I notice them everywhere. I think a lot about it, and hope it isn't true. I pray it isn't true. When I'm ready to push I tell hubs to tell me if she looks "different" he laughs and tells me I'm crazy and in the quickest easiest delivery ever comes our little Leighton. She's is purple and the doctor says come on cry baby cry, Finally she does and the nurse takes her over to the incubator before I see her face. They clean her up, put her hat on, and wrap her in a blanket and hand her to her Daddy and then he brings her to me and my world stops, and I say "I know" and he kind of starts crying, and in my stupidity I think well this is my new reality, there is no more hoping it isn't true. I'm just going to take her home and protect her from this mean world, I will do my best.  Little did I know babies who have Down syndrome don't usually just get to come home with you.  She didn't ever leave the NICU again until she was ready to come home in a week.

 Later alone in my room I think to myself I'm going to be the Mom who everyone feels sorry for when they see me with her. Their going to think I'm glad thats not me, and can you imagine??? I'm the odd women out with the special needs kid. What the crap I'm barely 31, now I'm going to have to hangout with 60 year olds because only older women have kids with Down syndrome.  I'm so embarrassed, what kind of failure am I.  I can't even have normal babies. I'm the worst mom ever. What ever did I do so wrong to have this happen to me.  I try to express to hubs how I'm feeling. I obviously love her, but being a mom is my life's work. I never wanted to do anything else. He has a master degree, a career he keeps progressing in, an increasing income, as proof of his success,  proof that he's doing a good job at his job.

 When your a stay at home mom you want to do a good job too, but you have nothing really to show for it and so you want these kids to have the potential to turn into adults you can be proud of. I get that doesn't always happen because they have there own choices to make and life to live, but you don't want to mess up at the get go, and I really felt embarrassed to have screwed it up.  You want to give them everything in your power to succeed in life and something I had done had ruined it for her.  How could I have ruined it for her in the only area I actually felt I had a little control. When she was in the womb! These thoughts are why I proudly post her pictures, and why I write my personal thoughts about it for people to read.  Because I was so wrong about it all, and I just didn't know any different. 

The next morning after a lot of tears, scary words from doctors, and a nerve racking procedure she had done in the middle of the night, I finally got to hold her again. A calm came over me and I felt such happiness in her presence. I promised to her I would love her with everything I had. I don't even know if I truly did that with my other children, because I knew they would find love and acceptence from people other then me in their life. With Leighton I didn't know if she would find it, and so she would get from me, all the love I could give her. She would get all of my heart. The sense of failure, and embarrassment didn't instantly go away. It was a roller coaster, but whenever I was in the NICU with Leighton everything was right in the world.

In the first week I made a choice to make this a positive and happy blessing.  I decided to never again feel sorry for myself about this wonderful thing that has happened to me.

I hope by my example my  children can be proud and not embarrassed for having a sibling with Down syndrome and for now its proven to be true.

I know I still get looks of pity, I see it, but it really doesn't bother me.  I know people look at me and they are glad its not them, and thats ok because now I'm glad it's me and not them too.  I will keep doing what makes us happy as a family helping my kids achieve what's important to them.  I have learned so much about what success, happiness, and contentment really is for me.  It has changed from what I pictured as a 18 year old, 25, year old, even 31 year old. The best part of being a mom is learning to broaden your view, social circle, and even ideals because of what your children teach you. Having Leighton brings me back to what's truly important for me as a mom when I let myself slip a bit.  I don't know if anyone but the hubs can really understand what it feels like to be the parent of this amazing girl. We daily have conversations about how lucky we are, and how much we love her all the time. We say we can't and don't want to imagine life without her. We are so grateful we get this experience to have her with us in our life.  I still love being a mom, its still all my dreams come true, and it's even better then I thought it would be. All my children bring me happiness in their different ways and I'm so glad I have these, completely different from each other, little people to love and get to know. I love to get to witness new people open up to Leighton. I get to see a reflection of our joy cross their face for a that small moment in time.

It's just a small hint they get of the huge imprint of joy she has made on her families lives.

-JS

Florida

Last weekend we left on a Business Trip (meetings for Daddy) to

Palm Beach, Florida. 

 {Tigertail Beach, Marco Island, Naples}

I have always wanted to visit some of Florida's Beaches on the Gulf.  So I begged the hubs to take our Sunday and drive across Florida.  We traveled through the scenic swamps and made our way to Sanibel Island, and Marco Island.

Sanibel….These colors!!

I didn't get the best variety of pictures because 

sand + water + plus camera + short on time isn't the best combination when photoging this monkey.

Marco Island was so fun!

Deep in conversation...

She is telling me she wants to paint her toes pink like mine

the next day we stopped and bought polish and painted her toes.

All ready to go out for dinner.

Stumbled upon a beautiful Church in Palm Beach.

(Betheseda by the Sea)

It was everything Florida should be amazing/ relaxing days in the sunshine.

Oh and we all came home sick with bad colds… 

The End-

JS

Trip Instagrams!

San Francisco...

We just got back from another business trip with Leighton's dad. We are very lucky because the Hubs bosses often include the wives when they travel and we get to accompany him on a lot of business trips.  Leighton has gotten to travel so much and experience so many places in her 3 years of life. 

This last trip took us to San Francisco.

It was a fun adventure and we had a little glimpse of city living. 

We were a rare commodity (ladies with strollers) and I would have to say the locals were very helpful when we took the cable cars. We also got to experience tiny living in the smallest hotel room we have ever seen. We were very cramped and found fun ways to fit a stroller, carseat, 3 large suitcases, and crib into a room that barely fit the bed and desk in.  Daddy bumped his knee or shine into the bed at least twice a day. The plus side of the tiny room, was first, we wanted to spend as little time as possible there.  Second Leighton couldn't really do any damage because it took her two minutes to explore the place so she enjoyed Disney channel on the bed with the TV so close it was almost right in her face.  Leighton was the luckiest girl because she was able to ride the Ferry two of the days. She really really loves being on boats. 

First we went on a tour of Alcatraz.

The next day we took a Ferry to Sausalito and  It was a "Charming" Town, but we didn't have much time there because we wanted to get back to visit our Northern Cali family, and the Ferry went less often on the weekends.

Then that night we got to go to a party on the field at AT & T ball park.  It was a really fun experience. We put Leighton down on the field and she dragged her daddy right over the the Farris Wheel.  They had carnival games, food tents, a big stage. If you wanted to you got to go hit ball in their batting cages and a coach would help with your swing. Leighton can now say she rode a Ferris wheel in the outfield. Its was a really fun experience.

It was a great trip, but its also nice to be back with the other munchkins. 

-JS

Education Plan...

Its been awhile since I've written anything but life updates, but I've been thinking about things lately.  So here's one of them.  Leighton's "typical" pre-school didn't work out. I hear so much to treat her like my other children that I just assumed that the pre-school I put my other kids in was the way to go, but it wasn't. What I didn't count on when pushing for treating my child like her typical peers is that there are some things we will need to adapt and If you don't have a willing teacher, it's not going to work. The hard thing is you will see teachers adapt for the bully, the mommy clinger, the stingy toy hoarder. You see your child is actually very intelligent and she isn't pitching fits when she gets left. She doesn't beat up or bully the other kids, but she's kicked out because whats difficult to handle with her isn't considered "typical"behavior.  That mixed with the tag of Special Needs, and your easy to remove from a situation.  So for now we are happy she has her special needs preschool. The teachers are so excited to see her when she goes. She hugs her teacher so tight when she gets dropped off and she blows her and the aides kisses when she leaves and I think…..Hey she's going to school just like kids her age, and maybe this is the best place for her. She's happy, and they are willing to adapt to what she needs so she's included and learning.  She doesn't have to feel different there because she fits in. She has therapist, and aides that help her to progress.  I hear so much positive to push for mainstreaming our kids in school that it was kind of hard on me when it didn't work out. I'm sad that all the positive opportunities for the other kids and Leighton to learn from each other aren't happening, but we can address it again next year. Maybe with another teacher who is willing to adapt teaching methods, and include her.  I have to admit the situation has made me a little gun shy.  I haven't taken Leighton to her new church class (Sunbeams) yet. My first excuse is the sicknesses going around this year are bad, but there is this other reason too. What if the teacher isn't really willing for her to be there? How is it going to feel to get kicked out of church class or know the teacher is disappointed when she shows up. With preschool I could see a look cross her teachers face when we came that she wasn't excited for Leighton to show up.  I chalked it up to my own fears until Her brother came to drop her off with me and he said it to me...I don't think she's happy Leighton's here mom. I tried a dance class with her too, and the teacher seemed excited to have her, but what if a few months in it's the same thing?  It's really hard for me even though she doesn't get it.  My point of writing this is, from here on out,  I'm going to try to find things that are the right things for Leighton. So I won't feel guilty if mainstreaming doesn't work for my child, because it works for someone else's.  Typical or adaptive, I want positive experiences for Leighton. This is what I've learned from schooling with Leighton so far. I'm going for a personalized education plan. 

-JS

and also some Christmas Instagrams

San Diego & Halloween

We had another "Dad Trip" come up this months and this time we went to San Diego.

I didn't get a lot of pictures but here are a few things we did.

Cornado Island

 USS Midway

They had a private dinner for us and it was so fun to see the museum with no crowds. 

 

Halloween

We also took a mini trip and stayed the weekend in Salt Lake and visited downtown and 

Temple Square

and some October instagrams...

-JS

my summer catch up.

I haven't blogged forever and all of summer and some trips happened. 

So here's a quick picture catch up.

Summer Instagrams

Here's a few pictures from the last two work trips. We decided to leave Leighton home to see how she would do.  She did awesome, but we missed her, and plan to take her on the next few. 

We don't take many pictures when its just the hubs and I.

Park City

(nice hair, We took a total of 3 pictures and my hair looks like this in everyone)

The hotel we stayed at was AMAZING (the Montage…stay there if you get the chance)

This fall we also took a trip to Austin, TX

I've heard about the rain in Texas and it didn't disappoint (for the 5 minutes it rained). Either did the heat. It was pretty miserable, and the Texans were acting like it was cool…98+ humidity try sweating buckets hot. 

some trip Instagrams

School started and Leighton has been going every morning to two different schools. I really really miss her, but I'm having fun dressing her up. Also she seems to be learning a lot.

brother started junior high, and so you know it's way harder to let them go 

then preschool or kindergarten..

also Baseball and Dance are back in full swing.

being perfect (as always) at the games...

-JS