Saturday, August 27, 2011

Differences.

So far having Leighton isn't very different then having my other two "normal" kids.  The only differences are she already has stuff.  Most Newborns don't have groups they have already joined, and social events. Leighton does.  She has her United Angels things we go to. She has her physical therapist, and Michelle who comes to visit her. She's who I talk to with what LC needs help with and she sets it up.  We have a few more Doctors appointments like her cardiologist, and I run her to after hours more often to check her ears.  I have to be a little more cautious when shes sick.   Also I enjoy all the small things she's does more.  Like she rolled from her tummy to her back by herself 3 times in a row yesterday, and she moves all around to the different hanging toys she wants to play with now. I'm like oh my gosh and I clap for her because she is being so "normal", and she smiles so big cause she knows she's a little "rock star" (that's what Michelle calls her because she does so well).  
She even got to try some rice cereal today, and I was worried the first few bites because her tongue thrust,

but then I remembered my other two did just the same and by the end she was opening her mouth and doing it so much better.  
 She sits and chats to her toys, and animals.  She likes to hear her voice, and she's been studying her hands and trying to make them work better.  She's just so cute.  I'm totally in love with this Leighty Bug.

-JS

Wednesday, August 24, 2011

Pity!

  Leighton’s 4 months! Wow that’s gone fast.  I think every day, it’s so good your growing so well, but also STOP!  She’s the best baby, and it’s flying bye.  My husband and I ran into someone we knew yesterday that made me think about this post.  He told us he had a job for a company that makes items that help developmentally delayed children. So my husband said cool our new little baby has DS, so she might need some of that stuff.  I could tell from his face he just didn’t know how to react, and he didn’t say anything.  When we first had LC I had to consistently remind myself to be patient with people.  They didn’t know what to say or how to react, and also I tried to remember what I would have said before I knew what it was like.  Now I would say aren’t we so lucky?  These little DS babies are the BEST!!  Sorry to admit it but sometimes I feel sorry for people that don’t get to have one.   Her doctors tell me they want to steal her all the time, and I’m like No way she’s all mine, and when her siblings hear this they get overly protective.  During the first weeks I had her I would keep her car seat cover over her because I couldn’t deal with the ways some people reacted when we had her.  I felt like I needed to protect her and me from the pity. When people would act sorry for me I would take it personally like they thought something was grotesquely wrong with my child, and it hurt.  Over the weeks I realized more often then not people couldn’t even tell, and they thought she was pretty perfect too and comment about how pretty she was.  Now when I am out and I can tell someone sees she has it, I will notice that look of pity (poor baby, or poor Mom look), and I just smile at them and think if you only knew.  I just look at them like I’m proud of her, she is so cute huh?  My husband and I have learned not to really talk about it because it makes others feel awkward.  We aren’t embarrassed of it.  We are obsessed with her. She’s our little ball cuteness, but we know not everyone knows what to say and we’re getting used to it.  It was a big shock when we had her, but we have picked ourselves back up and every day is better then the one before.  Life goes on, and we’re even happier then before LC was born.  It’s funny cause before I have my babies and when I’m lying there with my big belly trying to imagine life with this new child I can’t do it.  Now that I have my new little girl I can’t imagine life without her, I don’t even try because it hurts to bad.


-JS

Thursday, August 18, 2011

I just LOVE babies...

Don't you just love.....
When your baby does something cute and you just have to get a picture?
(This baby doll and her are bff's, it was like she set her baby up so she could watch t.v. with her).
Sleeping Babies?

Baby legs?

Baby Feet?


When you look through your film and they pulled a funny face.

Thumb Suckers?
She has grown so fast.  She has quickly gone from an infant to a baby.  My Son is 9 and going into 4th grade, so I KNOW how fast the years go.  A Mom/Grandma once told me babies can be hard but you know how fast it goes.  Raising a child is long days, but short years.  I remember this all the time with Leighton and I'm trying to enjoy every minute with my kids.
-JS

Tuesday, August 16, 2011

Vacation.

Our Family just had a weekend away.  We had so much fun and Leighton was a perfect angle, like always.  Both the kids adore her.  It was nice to get away.  Here's some pictures.
Talkin' with her daddy.
Hangin' with her brother.
Playin' Toys
Sleepin' in her swing 
(love how her headband fell)
Love this Sweetie!
-JS

Friday, August 12, 2011

A good Parent.

This is really how my film went. 
(Kicking my shoe off, and I did it, yah I did it! Ha I'm so happy!)
(Hmmm do you think Mom will notice? Ha ha I'm so sneaky)
 (LOL cause Mom found out put it back on and tickled me)  
Some of My family and I went and saw the Help a few nights ago.  I loved it, which is amazing since I usually don’t like great books turned into movies.  Anyway go see it ladies.  For some reason I came away from that movie thinking …Why do we become parents? What drives us to become Moms?  The main character’s Mom really wants her to be married, but the daughter isn’t really worried about that. She wants to be a writer.  Then of course the story is about how black women who aren’t even allowed to use the same bathrooms are left completely in charge of the children.  The white ladies really don’t want anything to do with their kids.  I’m not saying this was always the case, but it made me think of those questions, and it made me think I want to be a good parent.   
Having Leighton has changed my perspective as a parent.  There’s no expectations placed on her by me.  Yes we have goals I want her to hit. I’m helping her build the strength to accomplish the normal things like holding her head, sitting, and rolling over. I mean things like Marriage isn’t the only path for happiness, or going to college, or a high paying job.  When I first had her it was so frustrating having people tell me what she was going to be.  She is going to have a serious heart problem!  What? Then I’m thinking…The neonatologist just said he watched the EKG, and he didn’t see any major problems!  So why are you telling me before its been sent to Primary’s that SHE IS GOING TO HAVE THIS just because 50% do, when the results came I thought Huh, she proved you wrong jerk!  I heard She’s going to be deaf, going to be on oxygen at least a year, isn’t going to be able to eat, going to be diabetic.  I have learned I had to take these things as a possible but not a probable.  I wanted to scream DON’T TELL ME WHAT SHE’S GOING TO BE!!  Now maybe people think I’m in denial or need to be prepared, but I don’t want her life to be narrowed to what a person with DS should do and be.  She might get some of these but don’t tell me SHE IS. She can be what makes her happy, I don’t want people telling her what she can and can’t do with her life when she is 4 days old, 3 months old, or 10 years old.  Having her has made me realize that about my other kids as well.  I don’t want to be a parent that has my children to fulfill my needs.  I want my children to be happy.  I want them to find something their passionate about and work at it.  I believe as a parent I need to support my kids in this.  Yes they need to be in school because they need to be able to function, but getting a masters in accounting like their Dad isn’t the only way to make a happy life.  There isn’t only one right way to do things.  Leighton doesn’t have to become a Mom like me or do the things I always wished I had done.  The only thing I want her to do is try her hardest at the things she wants to accomplish; I want her to become her best person.  I want to remember that with the other two as well.  I don’t want them to choose things because I’m pushing them into it or their Dad either.  
 I do find Joy in raising my children, but it’s the feelings I get when I kiss their sleeping heads before I go to sleep.  Knowing they had fun that day, and learned something new.  It wasn’t that big of deal if My Son put laundry detergent in the dishwasher, now it’s cleaned up it was kind of funny, and I did learn it does bust out the sides like the TV shows. Oops, I better stop laughing before he wakes up and thinks he should do it again. It’s the feeling of pride I have when they do something they have been scared of or stand up for things that are right.  I don’t need perfect behaving children, perfectly dressed, showing everyone I’m the perfect Mom.  I need a happy family.  A boy that comes home from baseball practice and says he had the best time in his life and wishing it never had to end.  That messy sweaty boy is one of the best things that have happened to me, and he’s enjoying life, living a real life. 
 It’s my daughter putting on my big high heels and telling me when her foot grows I can give them to her, she wont mind.  Then posing in the mirror like a super model. She makes me laugh and that brought me real happiness.  
 It’s Leighton smiling so huge in her sleep when I move her from her swing to her bed. She knows I’m holding her even in her sleep and my heart fills with love.  I’m so thankful that Leighton has brought these things to my eyes.  My neighbors, friends, and acquaintances positive perception of me will never bring me happiness.  I can choose to be happy and choose the things I like because I like them not to impress anyone else. I can choose the things that are best for my family not because it’s what’s best for other families.  Just like I want my kids to do too.  OK CB I guess I should let you have those skinny jeans you want so bad, even if I think are lame, Sorry Paul!
-JS 

Monday, August 8, 2011

New Pics

I loaded this weeks pictures from my camera on to the computer.  
Here's some of my favorites.
LC being an angel at 6 flags.
 She's working on rolling over now.
Giving kisses to her new doll.  (she coos at and kisses her baby all day).
-JS

Thursday, August 4, 2011

A life worth fighting for.


The reason I started this blog was because of a statistic.  I was at a genetics appointment yesterday and he told me only 50 percent of Down syndrome babies are diagnosed before birth. So it made me think about what I read before how 92 percent of Down syndrome babies who are diagnosed in utero are terminated.  That means 8 percent of parents decide to keep their babies.  People may think it was easy for me because I didn’t really know.  I didn’t have to think about it and make the choice.  Regardless of what I’ve been taught from my religion I still have pondered abortion, and wanted to get my own opinion and not just think- they say it’s a sin, so it’s a sin.  I wanted my own opinions and this is mine, but it doesn’t have to be yours. I have thought about these questions -When do you believe life begins, and how far in a pregnancy do you think it's taking a life? To answer that question I’ve looked up the definition of death before. 

Death: 1: a permanent cessation of vital functions: end of life.

Did you know that a fetus heartbeat begins 18 days after conception, when the mother is roughly 4 days late for her menstrual period, and by 21 days it is pumping through a closed circulatory system.  I personally believe if you have a heartbeat then you are alive.  A heartbeat is a basic vital function.  You can debate that’s not the only vital function, but ones enough for me. I’ve never chose to do amniocentesis because it would happen after the heart beats.  If there is a beating heart, then it isn’t my place to decide if something should live or die.  I would never have aborted her for that reason. 
Recently I read an article that there is a new test developed for an easier, less evasive, and lower risk way to diagnose a fetus with DS then with amniocentesis.  That Insurance companies will gladly pay for this testing. They will encourage parents to take this test, and also pay for the termination of these pregnancies.  That the government, and insurance companies are in favor of termination because the huge chunk of cash that they will save from not having to care for these kids.   What happens when 100 percent of DS babies are diagnosed before birth? People are worried that DS people wont exist anymore, not because it doesn’t happen, but because they are terminated.  Most doctors probably haven’t even interacted with a DS person before and they will be the ones to advise these parents to terminate.
Is a DS life a life worth living? Before LC I have known only one person long ago that had DS and I didn’t know her well. I knew nothing about it really.  I didn’t know the bad, or the good things.  Now I have LC I know!  She touches peoples life's and she teaches people something.  She is worth the extra money, and time she requires.  She has a right to live and she has a right to a wonderful life.  She feels joy, love, pain and hurt. She is the same as any baby.  Who are we to decide which babies deserve to be born.  Does she not belong because she may take longer to master a skill?  Everyone masters skills at a different speed anyway, and in that is a lesson of patience. I’ve been told that DS kids have really high self-esteem.  Maybe we “normal” people can learn a thing or two from these “special” people, and that’s why their here on earth.  My husband and I have asked ourselves how do we teach our children Self Worth, or are you just born with it?    Like why are some extremely beautiful people never confident in their beauty and they get plastic surgery, and some don’t?  Were they just born more confident?  The thing we came up with had to do with setting goals, and accomplishing them.  Think about how you feel when you finally Master something hard.  You feel wonderful,  and your confidence grows.  What about the things that come easily to you?  A lot of time we take them for granted.  DS kids don’t have anything come easy to them thanks to their low muscle tone.  This last week LC has mastered holding her head, she’s had to work at this, it didn’t just happen.  I can’t recall when the other two did it, but I have been showing all my family and friends- Look at LC she can hold her head now.  I clap for her and she smiles so big.  I show her how good she’s doing in the mirror and she smile even more. I can tell she’s proud. That’s how I think you get self worth.  Self worth is not arrogance it’s respect of oneself.   I can tell my children a million times there wonderful, smart, and beautiful. That can help, but they also need to find those things out for themselves.  They need to work hard at their goals and feel the great feelings that come from accomplishing hard things.  It’s makes them strong. We need more kindness, and less selfishness.   I’ve been told that DS kids are always kind but not always treated kindly.  She is not as strong and she has to wait for her muscle to build until she can master her skills.  She does these things slowly, but they come.
(LC and her sister)
She teaches us how to be patient and kind by example.  We need more of that this day and age, and those kind of people are worth fighting for. 
-JS

Tuesday, August 2, 2011

Welcome to this world Baby Girl!

When I first saw Leighton Claire she was completely purple. She looked a lot like the color of Violet Beauregarde.  I couldn't see her face, but I didn't think the other two where that color.  The Doctor kept saying cry baby cry, finally a tiny whimper. We know now that LC doesn't cry that much.  She was born a little blueberry with eyes wide open. When I saw her across the room I knew,  and when I finally held her I thought....I already love you, and this is the way my life will be, I will be a Mom of a DS baby girl, and I told my husband "I Know", and then he could admitted it to himself too. I guess someone needed to acknowledge what she had and those words said it all.  She started to choke a little bit, and I had the nurse take her to check her out.  We told our families and that was hard.  I have a new found love for texting and that's how we announced it to our friends.  Believe me it's hard for people to receive that news.  Most people aren't in this "chromosomal world" and they don't know much about it.  I know I didn't know anything about it.  We don't have any Down Syndrome relatives in our families.   Every Mom of a Down Syndrome child has her own story and this is mine.  Our Social Worker told us there is no right or wrong way to go through this.  Even my husband and I have a different story. Some Mom's feel detached from their babies, and feel forced to take care of them.  Some like me can except them right away, but all stories seem to end the same way.  Their all completely in love with their child.  I knew DS kids talked different, and that it can effect them mentally, but I didn't know that they can come with a lot of medical problems.  LC had an ECG, IV's, Oxygen, a blood transfusion through her umbilical cord all within the first few hours of life.  She turned into a little pin cushion and that's hard for any Mother to take.  
 I'm glad these days are over.
We have hit the lottery with this baby.  She is only 3 months, but she has been really healthy.  Not all DS babies are as healthy as she has been, but normal chromosome count children aren't always either.  It's like that saying... the only guaranty's in life are there is no guaranty's. I don't blame God for LC's lot in life, I thank him for her. I'm only 31 and the odds of having a DS baby weren't in my favor, and I feel blessed to have her.  She has opened our eyes to a bigger picture.  We have joined a group of other parents who have children with different Chromosomal issues, and it's like we have a select membership to a special club.  I get to meet new strong Men and Women there.  Women that face the struggles head on, and they inspire me. Having LC has forced us to meet new friends, and take notice of the smaller things. She has made me grateful for the mothers that have walked this road ahead of me. They fought or are fighting for our babies rightful place in society.  I want this blog to focus on the positive. I want people to see the Joy LC brings into our lives.  I mostly want people to notice that life with a DS child is really more the same then it is different. Truthfully now we have LC life is so much better.
-JS