Stereotypes

Stereotypes we have broken in 8 months--------

Babies with Down syndrome.....

aren't loveable or cute-

yeah right-----super loveable and super cute

are weak...

she's strong!

can't breastfeed...

she only nurses

can't learn...

waving

so big

-reaching to be held, drinking from a straw cup..etc. she's doing a lot of things a lot sooner then my typical baby ever did! Who know any baby could learn so early! Work, work, work! Learn,learn,learn!

are sickly...

Healthy as can be!

late teething

first tooth at 7 months

are small for their age...

I have to laugh at this one!

are happy all the time...

I wish!

many more and more to come....

Such is life

Does it ever end? To all you experienced Momma's out there...when can you start talking about DS problems to your regular friends and not have them get "weird"? Does it ever go away? I thought things have been going along fine...so I started to tell a story and BAM...weirdness. Instant change of conversation. It is like I can't utter the words "Down syndrome". Sigh. Even the oldest of friends. The best of friends. The closest of siblings and NO ONE gets it. I feel closer then ever to people I don't know as well. I can't tell you where they work, what their birthdays are but I can tell you about their child, their name, their age, their medical status, their doctors. And isn't that what matters the most to us when it all boils down to it? Our children? Our health? A few weeks ago I went to the Pujols Foundation New mothers lunch. Looking around the room and seeing 40 other women who "get it" was AHHHHHHMAZING! They have been there, done that, felt that, thought that and everything else that comes along with this journey..  Some have had it easier or harder then others, regarding OHS, seizures, severity,acceptance but we are all in this together. We support each other.We are family. Our kids are alike. Our kids will grow up together. This is our own little world. Right after Alyssa was born I remember telling my husband that I didn't want all this special needs life. I didn't want to meet other families, I didn't want to be an advocate. I didn't want my life to be special needs. And while my life is far from only special needs, it is a great, big and IMPORTANT part of it. I have embraced it. I have embraced this as my new life and I know that some days I need these people more then others. Some days when other friends just don't get it, I NEED them to understand. And some days when I'm special needs maxed out and I just need to talk about 10 years ago when everything wasn't so complicated, I need my seniors. A balancing act. Such is life. Such is life.

Signs

This past summer when I was pregnant with Alyssa we took Aubrie to the drive in. I remember us going inside the little building with the concession stand. We waited in the winding, long line forever. We kept passing a man with Down syndrome. He kept staring at us. I thought it was sweet at first but then he just kept staring and it started to make me a little uncomfortable. He would watch Aubrie and smile and he would stare at my stomach. These encounters always made me feel uncomfortable when I was pregnant (....obviously so...) but at one point we paused in line right next to each other and I looked at him and smiled. His face changed. He got a really intense look on his face and just stared so deep into my eyes that I had to finally break the eye contact and look away. It shook me up a little and I have never forgot that day, that moment. It is one of the first things I thought about after Alyssa was born. I believe there is something out there, the world connecting in strange ways. I believe in signs and the afterlife and strong spirits. I believe my Alyssa has something extra special in her soul, along with with every other person with an extra chromosome. The wonders of the world. Different, but more alike then different. I will never forget that man.




And for what it is worth I saw people with Down syndrome ALL THE TIME when I was pregnant and have not saw a soul since Alyssa has been born. Bryan and I look for them now and have never...ironic?




The day I found out I was pregnant I came across a blog about a woman who had the same thing happen to her. An unexpected birth. I read it my whole pregnancy. I fell in love with her daughter and how absolutely beautiful she is. It prepared me. Life can be beautiful and different. Life can be happy and different.




My sister Kellie and I always talk about our "psychic" connection. It's pretty strange. Well, the morning I was in labor my Dad called Kellie to tell her I was in the hospital. She was at work and told my Dad to call her when Alyssa was born. At around 8:40am she was driving and said she all of a sudden got an intense feeling on her heart and she got hot and she goes, "Katie and Bryan's baby has Down syndrome." (Alyssa was born at 8:17am and we believe at 8:40 was probably the time that Bryan told the rest of our family the news or when my OB confirmed my suspicions) She then shook the feeling off and told herself that was ridiculous. Twenty minutes later she was with a client and her phone rang, she didn't answer it in the middle of therapy but called my Dad back when she left and he told her the news....




So yes, I do believe in signs.




I came across this quote and just fell in love with it.

"Don't let the what-if's rob you of the joy of the what-is!" I love that.




A lot of the time we get an "I'm sorry..." from people when they find out that our daughter has an extra chormosome. (Doesn't that sound ridiculous, I'm sorry your child has an extra choromosome!) That bugs us. Don't feel sorry for us. We don't need your pity. Yes, there are struggles and yes there are bad days. But don't think we sit around feeling sorry for ourselves every day. We don't. We ARE happy. We have two, beautiful daughters who fill our hearts with so much joy. If only everyone could know what this is like. If only everyone could learn so much in so little time. It's a profound experience. Profound it is.




---------------------------

pro·found   /prəˈfaʊnd/ Show Spelled







[pruh-found] Show IPA




adjective, -er, -est, noun




–adjective




1. penetrating or entering deeply into subjects of thought or knowledge; having deep insight or understanding: a profound thinker.




2. originating in or penetrating to the depths of one's being; profound grief.




3. being or going far beneath what is superficial, external, or obvious: profound insight.




4. of deep meaning; of great and broadly inclusive significance: a profound book.




5. pervasive or intense; thorough; complete: a profound silence.




6. extending, situated, or originating far down, or far beneath the surface: the profound depths of the ocean.




7. low: a profound bow.




8. deep.

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Lovin' Life

Night time and Day Time

Night time- It's a cozy,cuddly time for us. Since the beginning night has never been the hard time. I know a lot of people say night is when they cry themselves to sleep and night is when they stay awake wondering. Night was never like that for me. Night time has always been the time where I am most comfortable. Most at peace with this card life has dealt me. Night time is when I cozy up with my babes and snuggle close and kiss and hug and tell them it will all be OK. Night time is just our time. No one else is interfering. It's just me, my hubs and my babes. Night time is when I realize that, when it all boils down to it, none of this crap matters. What matters is I have two beautiful daughters who I love more then anything. It doesn't matter what my neighbor or friend or family or stranger might think of us, of her. It doesn't matter that some people can be real jerks. None of it matters. What matters is right then. That night. Where we can just be.

 

Then there is day time. Most days it's all fine and dandy. Others it's a struggle making it through the day. It's hard to turn on the TV and see shows about these wondrous births. It's hard to hear others talk about what their typical baby is doing. Sure I had all that, I had all that typical crap with Aubs, so maybe it shouldn't bother me. But it does. No one wants this. No one wants their child to be delayed. Sure I know some moms say "I wouldn't take away the DS" ..well I'm calling your bluff because I know deep down NO mother wants their child to have a tougher time. Even if the challenges are few and far and very simple, you still don't want your child to have them.

Day time is a time where people get a chance to prove themselves and sadly most people in our life have failed us. Maybe we should not have had such high expectations for people but I'm the kind of person who usually looks at the bright side of things. We have three different kids of people. Those who act like our baby is totally typical and nothing major has happened in our lives. Those who say really stupid, rude things. Then there are those who are great and who are supportive. It's  a  shame that people are afraid to talk to us. It's a shame that people don't acknowledge my daughters existence. It's a shame loving family/friends can't find it in themselves to ask how we are doing. It's like they can't handle the raw emotion of it. They are so afraid I might cry and they will feel awkward. Well guess what? You feeling awkward for 20 minutes of your life is NOTHING compared to the reality of what my life will be forever. Can you get past your selfishness for two seconds and realize that? People show their true colors in hard times.....But I will try and just focus on my beautiful babes. I love them and they will never fail me.

change..now

read this now

Designer Genes..fit

Designer genes fit...and they fit perfectly! It seems as if these first few weeks I was so busy wanting those dang ordinary Target genes to fit that I didn't realize I had DESIGNER genes that fit oh so perfectly with my family. They are beautiful, they are EXTRA special, they are magical genes. Not everyone gets to cuddle someone with a little something extra every night...but I do. Not everyone gets to have someone with a little something extra call them Momma...but I will. I have two, beautiful, unique and special daughters. I am BLESSED. I didn't feel so blessed, no, no I did not. I felt robbed. I felt robbed of my perfect, normal life with my perfect, normal girls. But I NEVER had two, "perfect, normal" girls. I always had that little something extra so why waste time mourning something I never had? I have two, perfectly special, normal daughters. Isn't that extra special? Don't get me wrong, I don't look forward to the challenges my daughter will face. I wish I could take them away and it would be easier for her but really she won't know any different and we will work our hardest to make these challenges easier for her. She will do everything everyone else does but in her own time.  So what if she doesn't crawl until she's one? So what if she doesn't walk until she's two? Don't we as parents want our little ones to stay little forever? Don't we get sad when they take those first steps? Don't we immediately want another baby when our baby isn't such a baby anymore? I get a little longer...a little longer with my baby being a baby and you know what? I've realized that's just fine with me. Oh no, it's not always going to be sunshine and roses. I know that. It's also not always going to be tears and what if's and why me's. I won't allow it to be. The other night, Aubrie went to sleep early with Daddy and I finally got some undivided me time with my little something special and I just held her and looked into those beautiful, almond shaped eyes and cried because she is SO beautiful. She is SO sweet. She is SO mine. I went to bed and snuggled up against my first born and her Daddy and instead of putting that little baby in the bassinet that is inches away from my bed, I did what I said I would never do with #2, I cuddled that baby beside me in bed and put my face next to hers so I could smell her sweet newborn smell and breathe in her sweet milky breathe and all was right in the world. I had the three people I love more then anything snuggled up in our warm, comfy bed, in our teeny, tiny bedroom, in our teeny, tiny house and I felt like I won the lottery.and I did. 1 in 1200 chances of having this little lovebug and I hit the jackpot. I think I'm gonna love life in designer genes. I think I really am.

A numbers game

"Down syndrome abortion reaches around the 92% mark of all Down syndrome confirmed pregnancies."
What an astonishing number. 92% of confirmed DS pregnancies end in abortion. Disgusting.

The DS population dropped 40% by the year 2000.
There are currently only 350,000 people in the US with DS.
Only 5,000 babies with DS are born in the US every year.
These numbers just amaze me.

How about these numbers...

87% of DS pregnancies are discovered by SCREENING tests (the quad screen and ultrasound, like I had)
At age 25 a mother has a 1 in 1200 chance of having a baby with DS
Due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age

Baby Doe

Now that Down syndrome is a huge part of my life, I have been researching like crazy. In one of my books I read a VERY disturbing story about "Baby Doe".  This just disgusts me.
http://www.cincinnatirighttolife.org/site.cfm/Life-Issues/Infanticide/Baby-Doe.cfm

It is so disturbing how some people think. I know I will encounter these people and these type of hideous opinions now and I have to admit, I am NOT looking forward to it!