the little things...

{10-2}

 One of my favorite things about Lolly is the fact she just enjoys all of life.  Little things make her day. Like  swinging is basically a roller coaster, and going out to dinner as a family is basically as good as a Birthday Party. Who wouldn't enjoy seeing life that way?  When we went out Saturday she was in between her Dad and Me and she just kept looking back and forth saying Dad and Mom and clapping saying Yah! She kept pulling our heads down and giving us a group hug. It made the whole dinner so fun. It was like sitting between us made her whole day. It makes us look at the little things in life with a new excitement and I'm so glad she has shown us that kind of perspective about our day to day. 

-JS

31 for 21

{10-1}

October is Down Syndrome Awareness Month. I didn't know this before I had Leighton. Can you believe it is my 3rd time doing the 31 for 21 challenge? I feel like my thoughts and experience over these 2.5 years has grown, and even changed some, but I know I have so much more to learn from other parents that are further along on this journey and even newer parents too.  I realize it's hard for other parents, friends, co-workers, and families sometimes to ask questions or approach us "special needs parents" because they don't know what words to use, or how we always feel about the things our child is going through. I have learned every single Mom with a Down syndrome child goes about the experience different. Comments people make sometimes rub some wrong and others might not be bothered. How they feel about studies going on to cure, diagnose, and improve T-21 kids varies greatly. I would never choose to speak for all parents with Down syndrome children because I wouldn't always want another special needs parent's opinions or reaction to be assumed as mine. I also always try to approach the comments, and questions with some Empathy. I don't always know the right words or actions to do in sensitive situations either so I always try to go in the situations with forgiveness before offense. I'm not saying it will always be easy, but that is my goal through this experience. I also decided the first time I really got to hold my Leighton that I would love her with my whole heart. 

That was honestly up on the list as the hardest week of my life. The first days dealing with the reality that this was my knew reality, all the unknowns that were being thrown at me about her health. 

Then the hardest was leaving my baby at the hospital, as I was forced to go home. Seeing all the blankets, burp rags, and clothes I had prepared for her healthy happy arrival that just wasn't. 

The weirdest part was anytime I was in that NICU room with her any sadness or fear was gone. Her presense made it all better. I was instantly happy again from the second I walked back in that door and it was one of the best blessings. Something I haven't told very many people (because its cheesy) about those first days is as I was driving back and forth from the hospital that One Republic, Good Life song was really popular and it played one late night. I don't know why but I was really listening to the words and it was like someone was giving me the best advice (life advice from a random band?? thats why I haven't admitted it much, but it was REALLY good advice) for this new unplanned course of a life and I realized that despite what the doctors said this song's chorus could be right. Those words "This has gotta be a good life, It really could be a good life" really pierced my sole and I chose right then and there I was going to be Happy, I was going to do my best to make this life good, and Leighton's life a really good life. I was going to make the best of this unplanned course that was chosen for me, because that is really the only control I have in this life. I can choose how I react to this situation and any other hard one too. I can choose to be happy, I can help others going through this experience with me, I can take something I thought was a negative and make it the biggest positive of my life. So if I post a little to many pictures of this preciouse little girl or brag about her too much I'm really sorry. I just really have given her my whole heart and she has become the best thing in my life because of all of this. So I guess I might have foggy glasses when it comes to the greatness I think that she is. 

my Lolly girl a little smaller

My goal for my post is to show what life is like raising a child with Down syndrome for me. I hope you see I think this life with our little Lolly in it has been and continues to be pretty sweet.  

-JS

the Farm...

We visited the farm today.  The buildings have been there for a long time (I'm going to ask Hubs Dad just how long next time) .  Here's some of my pictures I took before we had to rush home. 

-JS

well hello again!

It's been a while......Isn't that how my blog always starts out this year? 

Summer went so quickly.

I feel like I blinked and we were back to school already. 

Back to School Pic..

The most major thing we did was move. We are loving our new home.  

I do NOT have all our boxes unpacked.  I feel like I still don't know where I want things (pictures, decorations, plates, pans....ect.) So most of my walls are bare.  Not to mention we have to beg Hubs/Dad to make a hole in the wall.  

We still need to buy some furniture, shutters, oh and grass. Anyway we have a lot to do, and maybe someday it will all get done.

We didn't take any major vacations over the summer. We ended up on mini trips for brother and sisters baseball and dancing teams. 

Sister at Dance Attack..

brother played in around 65-70 baseball games this year.  

Vail (Dad's work trip).

Leighton... aka Lolly, Leigh Leigh, Lotsie...

She is doing awesome.

 Walks, runs, attempts summersault, turns in circles, climbs!!

She sings, says words, plays a lot, tries to swim on her own....

Pretty much she's WILD and she keeps me on my toes. She also gives the best kisses and snuggles. She lights up our world, ALWAYS.
and that was the summer..
--JS

Summer time..

Our summer hasn't been a lazy one yet. We've been running from thing to thing.  Our house is moving along and it's almost done. We will do our final walk next week.

Some progress this month...

We took a weekend trip to Idaho Falls for a baseball tournament last week. It was a little cold and windy, but the little towns we visited were so cute. It ended up being a fun little trip for our family.

Leighton has been doing awesome. She has been walking as her main form on transportation for a few months now. It's the cutest thing. She lost her physical therapist in April because of it, which is exciting and sad all at the same time.  She's getting big to fast.

One of my favorite things Leighton likes to do is pick out her own clothes. She shakes her head no and yes when I hold up her different outfits and its almost always a dress that she chooses to wear. Then after I get her dressed she goes over to a mirror and checks herself out.  I think she likes how dresses move, and she always swishes them around during her check out process.

We also went to the Walk with Angels a few weeks ago. It was so fun this year and they brought a special guest.  Leighton got to meet Rachel Coleman (from signing time and nick jr) and she was so nice. She held Leighton forever and signed with her. She also put on a concert which all the kids loved.

Now I'm hoping for some lazy days so we can finally hit the pool!

-JS

Tag Up...

I have been needing to catch up on my posts for a while so here's my quick one.

Leighton had her 2nd Birthday. It was just days before Puerto Rico so it was a small affair this year. We just went to dinner and had cakes and cowgirl Jesse hats and scarfs thanks to her Aunt. Of course we celebrated with her BFF/ Cousin (they were born just hours apart, on same day in the same hospital).  

These two have been so busy with their "things" 

and that means I have been busy shuffling them around. Good thing I have awesome parents and friends/family who help me.  

Our house has gone quick. Here's my week to week this month

It's even further along today. 

And that's my quick catch up. 

-JS

why it's important.

I have been posting a little on Facebook about this years Walk With Angels.  I also wanted to write why I believe this is an important foundation. One that I really support.  When we had Leighton it was hard. The only people who spoke to us about it had no first hand knowledge of what it was like to actually raise a child with Down syndrome. They didn't know anything beyond what medical issues to look for, and to basically tell us we were going to be spending a lot of time at specialist. Honestly they made us feel our lives as we knew them were over and this child was going to strap us down for life, and good luck with that!  Two days after Leighton's birth we had a hospital visit from Untited Angels. Two Moms who had Down syndrome children came and talked to us. They answered our questions and told us about their experience when they found out. They cried with us because they knew our fears, but gave us such hope, they showed us that our life would still be happy.  The best part is it hasn't stopped there. We have training classes on special needs trust, mainstreaming our children, development toys, behavioral issues (to name a few). There is always someone willing to help with advice like using  GI tubes, or GJ tubes (things  you would never need to know about unless you lived it first hand)  Doctors and dentist that work well with our children.  The group isn't limited to just Down syndrome, it is inclusive to all families with a child who has special needs, Autisim to undiagnosed genetic conditions, because the founders realized that a lot of the medical concerns, and learning and motor delays are the same through all types of disorders.  We have play groups and activities where parents can come and feel like their children belong, parents can meet other parents dealing with the same thing (open heart surgery, brain injuries, seizures) the siblings can meet other siblings who know what it's like to have a brother or sister that needs a lot of extra care.  This is the only fundraiser of the year. This walk funds the classes and activities so they will be free of charge to families that spend a bulk of their income on medical bills. The truth is these babies and children are loved. Their families want the best life for their little ones and this army of special needs parents helps give eachother the tools to fight for the best lives possible for them.   I love this foundation because it services a real need in our community.  Our little Leighton may not seem scary, but some of her secondary diagnosis that have accompanied her Down syndrome diagnosis have been really hard to watch her go through and I'm glad I have a support group of moms that KNOW from experience how I feel, can give me advice on what I should and shouldn't do, which doctors to use, and what to expect.

I'm so thankful that we were put in contact with this foundation. Hopefully you can see why it's so important to our family.  If you want to help support our team and this great cause you can visit our page Chrome Cousins any little bit will help reach our family goal.

-JS