Monday, July 6, 2009

Happy belated 1/2 b-day E!

My big girl officially turned 3 1/2 on July 4th and I can't even stand it. To celebrate, we went to fireworks. Can you imagine they did fireworks just for her half birthday? Oh wait, it is the birthday of the USA, so I guess that is a good enough reason too. LOL
Anyway, both girls were up until 11 and were incredible troopers. It was their first real fireworks display and they both LOVED it. And I loved that they loved it.
So, Happy Half Birthday E! You amaze me every day with your imagination, creativity, sassitude, and kindness. You are an amazing little, ok sorry, big girl and Mommy loves you whole big bunches, forever and ever!!!



Thursday, July 2, 2009

Bittersweet day

Today is one of those days full of emotions where I just have to get it all down on paper (or into cyberspace at least).

O will be turning 2 in 25 days and I can't even believe it. how did the time go by so quickly? And she progressed at a slower rate than E did, but it still flew by. Unreal!

Anyway, onto the real topic of the post, why today is so bittersweet. O goes to a phenomenal daycare and they have certain guidelines for kids to progress from one room to another and even within groups in the rooms. O is currently in the Pre-toddler room for kids from 1-2 years. they typically move kids between rooms according to age, since skill set is usually right there with the age. Some of their requirements to move to the Toddler room (2-3 years) are...
  • walk up and down stairs holding one hand
  • walk all the time, no crawling
  • be able to self-serve and self-feed with utensils
  • drink from a take & toss type cup (no valve to spout)
  • eat at a regular table, in a regular chair
  • follow direction

Sounds easy, right? Well, when we heard this list about 6 weeks ago, we *knew* there was NO WAY O would be ready in time to move up with her peers. It hit like a ton of bricks that this will be her first "delay" with keeping up with her peers and that was a really hard pill to swallow. So, I went into "pitty me" mode for a day or so and then realized that sitting around moping wasn't going to get her anywhere. So, I started to harass the therapists and explain to them what our goals were for the next 6 weeks. They agreed that they were very aggressive goals, but helped us push her anyway. We worked on the stairs a lot, went and bought a table and chair set to help her get used to that, insisted that she use her utensils for dinner, only give her take & toss cups, etc.

And now, here I sit, reflecting on the last 6 weeks and realizing that my kid is a ROCK STAR!! She is doing all of that (in her own way of course) and more! Stairs are still a bit wobbly, but she is doing it! She totally "gets it", she is just having trouble with the fact that she is a mini-short-stack and the steps come up to her knees! Imagine climbing up and down steps as high as your knee...yeah she kicks arse! the leaps and bounds we have watched her progress in the last 6 weeks and I couldn't be more proud. But, I am also feeling very guilty for not believing in her as much as I should have. I struggle with getting my hopes up and being upset when she doesnt do what I think she should. So, I am at the other extreme where I completley underestimate her and that isn't good either.

So, yes, today is bittersweet because my baby girl is moving up to the next room at daycare right on schedule (a few weeks early even) but that means she really isnt a baby anymore. =(

BUT...
I COULDN'T BE MORE PROUD TO BE HER MOMMY RIGHT NOW!!!!! She has taught me so many things about life and how we should live it, I just need to listen more often!!!

Wednesday, March 11, 2009

SPREAD THE WORD TO END THE WORD 3.31.09

Please join me in this wonderful event...

Here is the link to where you can find out more information. I also pasted a lot of the info below.
http://www.specialolympics.org/stw_resources.aspx

More information…
WHAT
Spread the Word to End the Word is a National Awareness Day to raise the consciousness of societyabout the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word.
The campaign will build up to 3.31.09, a day where young people across the country will rally their schools and communities to pledge their support at www.r-word.org.
WHEN
On 3.31.09, young people will Spread the Word throughout their communities and schools encourage people to take a pledge to stop saying the R-word on www.r-word.org. Activities will occur throughout the month of March.
WHO
The effort is spearheaded by college students, Soeren Palumbo (Notre Dame 2011) and Tim Shriver (Yale 2011), and led by young people and Special Olympics athletes across the country.
Celebrity activist John C. McGinley of the hit show "Scrubs" is a spokesperson for the campaign.
WHY
Respectful and inclusive language is essential to the movement for the dignity and humanity of people with intellectual disabilities. However, much of society does not recognize the hurtful, dehumanizing and exclusive effects of the word "retard(ed)."
It is time to address the minority slur "retard" and raise the consciousness of society to its hurtful effects.
HOW
Visit www.r-word.org to learn how you can Spread the Word to End the Word.

EVENT AND ACTIVATION IDEAS
This National Campaign will rely on grass-roots activities for the most impact. Here are ideas on how you can participate locally in Spread the Word to End the Word.
1. Hold a local pledge event at school or in your community. Set up a laptop to encourage people to sign the www.r-word.org pledge page on the spot. Invite local Special Olympics athlete Global
Messengers to speak at an assembly.
2. Work with local sports teams to participate in a halftime event to promote Spread the Word to
End the Word.
3. Spread the word
• Use sample leaflets and talking points
• Hang posters
• Stickers
• Send e-mails
• Text / call your family and friends
• Use your social network such as: "Facebook", "MySpace", "Linked In"
• Send an Evite to friends to take the pledge and Spread the Word
4. Print and distribute leaflets throughout your community.
5. Notify the press. Call local radio shows and write letters to the editor of your local newspaper
using the samples provided in this kit.
6. Post a comment to an online social message board sharing your thoughts about the R-word and its abuse in our society.
7. Create a video speaking out against the use of the R-word to post on YouTube. Share the link
with your friends and family.
8. Post your event’s time and location in the community events section of your hometown
newspaper or in your school newspaper or Web site..

KEY MESSAGES AND TALKING POINTS
It is time we SPREAD THE WORD TO END THE WORD and this March 31 is a national day of
awareness for America to stop and think about their use of the R-word. That R-word is not "recession," but something more hurtful and painful – "retard." Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual disabilities, their families and friends.
This word is just as cruel and offensive as any other slur. Visit www.r-word.org to make your pledge today.
• Young people around the country are taking a stand and raising awareness of the dehumanizing
and hurtful effects of the words "retard" or "retarded" and are helping encourage Americans to
think before they speak.
• On March 31, visit www.r-word.org and make your pledge to not use the R-word. Our goal is to
get 100,000 pledges.
• We ask that you help us "Change the conversation" to help eliminate the demeaning use of the Rword from today’s popular youth vernacular and replace it with "respect." We are asking for your help in creating a more accepting world for people with intellectual disabilities and all those
people that may appear different, but have unique gifts and talents to share with the world.
• We’re asking every person - young and old - to help eliminate the demeaning use of the R-word (retard) –a common taunt used to make fun of others. Often unwittingly, the word is used to denote behavior that is clumsy, hapless, and even hopeless. But whether intentional or not, the word conjures up a painful stereotype of people with intellectual disabilities. It hurts. Even if you don’t mean it that way.
• People with intellectual disabilities are capable and enjoy sharing life experiences – listening to
music, playing video games, watching the latest movies, and yes, having fun – as well as working
together toward athletic excellence as they do at Special Olympics. They can attend school, work, drive cars, get married, participate in decisions that affect them, and contribute to society in many ways.
• Special Olympics’ recently completed Multi-National Public Opinion Study of Attitudes toward
People with Intellectual Disabilities, conducted by Gallup, but unfortunately the study reveals that throughout the world, a large percentage of people still believe that people with intellectual
disabilities should be segregated in schools and in the workplace. This is intolerable. We need
massive attitude change now to attack and reverse the stigma that is destructive to the lives of
people with intellectual disabilities and a barrier to growth.
• As a democracy our country values equality and fairness for all citizens. If we reduce this right by using inappropriate words toward any population, it negatively impacts all of us.

Friday, March 6, 2009

And she's off!!!

So O is really getting the hang of this walking stuff! It is TOO adorable!!! My grandmother gave us this little wooden chair that is just the perfect size for O. She crawls over, climbs up in, sits down, and then stands up and takes off. It is the cutest thing ever! Last night after bath we were playing and she was on a roll. Walking without orthotics or shoes on even! She is such the little superstar!!!


And some just for fun action shots...








Wednesday, February 18, 2009

Does it ever go away?

The green eyed monster that is. Two coworkers just had perfectly "typical" babies and it makes me so angry, frustrated, jealous, upset, guilty, etc. I get so angry that yet another set of parents gets to have that instant joy and hope that comes with having a typical baby and they don't have to deal with any of the daily struggles I do. It makes me angry and very jealous that I can't just enjoy my child like they do. I have to constantly worry about how to fit in therapy and teaching moments into every second of O's life and sometimes I really resent that. I resent that I can't just play with her with no ulterior motives. I hate that I have to constantly evaluate where she is, how she is doing, and if I am doing enough as her parent. I have to struggle with wanting to do what is best for her vs. allowing her to have a typical childhood. I have to fight and lie my way into getting her the therapies she deserves. I have to keep in the back of my mind all of the possibilities of medical issues that could happen with her. All of these things I resent from time to time, especially when I see someone else experiencing what I want. Maybe that makes me a horrible person, a horrible mom, etc. but that is just how I feel at this moment. Sad, frustrated, angry, and jealous...very jealous. Do these feelings ever go away? Will I ever stop wishing to have someone I know go through what I go through so I have someone to share these things with? Will I ever stop resenting people that "get to have" typical kids that don't appreciate what they have? Will I ever stop looking at every detail of a new baby picture hoping and searching for a sign of DS? I really hope so, cuz this sucks. I really do want to be happy for people and I try my best, but I am just struggling these days.

I do try my best to put it into perspective and realize all of the things that I get that they will miss out on. But, with O struggling to keep up and the delays getting bigger and bigger, I am having a hard time staying positive and keeping things in perspective. I know it could be worse, but I also know it could be "better". Maybe it is just the timing of O's recent evaluations and the need for more therapy at home that I just dont "want" to do right now that is making things worse. Who knows, I just don't like being in this place. I want to be happy with where O is, independent of other kids, when will I get there? When will all of these feelings stop flooding in when someone has a baby?

Ok, pity party/vent over! :)

I guess today is just one of those days

Friday, January 30, 2009

Thought of the day...

"God doesn't give you the people you want, He gives you the people youNEED - To help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be."

Before, O, I never would have believed this. Now I know it is the truth.

Wednesday, January 28, 2009

testing

just checking to see if this mobile blogging thing works. if it does I may actually start blogging more! =) I also attached an adorable pic of the girls to see if that works too! here goes nothing!!

Snow day! Snow day! How about Suck day instead?

So, at what point in our lives did snow days become sucky days? My best estimate is when it no longer became fun and became more work.
When I graduated college and started working in the real world? Work doesnt stop for snow like school does. But I dont think that was the point for me where it started to suck, it was just annoying then.
When I had kids? Nope, don't think that was it either. I would just drop them at daycare and head into work. No problem, just annoying.
When I moved the kids to the fancy, new daycare? ABSOLUTELY!! This is our first official "snow day" where we have nothing to do with our kids. The new daycare has delays and closings for the weather and it SUCKS!!! So, we have decided to split up the day, I work at work in the morning and M goes in this afternoon. I tried to get my work done from home but my laptop is acting screwy and wont connect to what I need it to. So I am stuck here at work rushing to get stuff done so I can be home in time for M to head off to work. This is crap. Don't these daycare people know that the rest of the world has to work? Very annoying and extremely inconvenient. I need every spare vacation day possible with my sicko little kids and this taking off for snow, well it just SUCKS!!!

Monday, January 26, 2009

Emotions

To say I have had a lot of emotions lately is an extreme understatement. My baby girl is a year and a half old today and I can't quite put into words what that time has been like for me. The first few months were a blur of trying to deal with the blindsiding shock of her diagnosis, which in hindsight I didn't handle all that well. But, it was a process I had to go through. I look back through my posts from back then and am in awe of how raw those emotions were. I would be lying if I said they aren't still there, but just further from the surface.
Someone posted on Downsyn (a great support group for parents of kids with Ds) today a question that I cant get out of my mind. "If you could, would you remove the extra chromosome?" I honestly don't know how to answer that. On one hand I love my child more than life itself and wouldn't change a hair on her head. BUT, I also love her so much that I never want her to struggle for anything in her life. I don't want her to have to deal with the horrible people in this world that won't look at her for the amazing child she is, all they will see is the disability. And I know in my heart that it is their loss, I just hope my angel sees it that way too. I don't want her to have to fight and work so hard for every little accomplishment. I don't want her to have anything holding her back from all that she wants out of life. I hope and pray with all my heart that she will always be happy, whatever form that takes. That is all I want for both my girls.
So, enough of that deep shizat. Onto the fabulous news...O took her first real steps over the weekend! Yes, you read that right, steps!!! Two steps between Auntie B and me on Saturday and just kept on doing it. The lunging afterwards was a bit comical too. Today she had her OT apt and walked 20+ feet holding one hand, that is just amazing!! Then she took 4 steps between her teacher and therapist! This kid is unstopable! Soon enough she will be off and running right along her big sis. I can't even begin to explain to anyone who hasn't been there, the overwhelming joy and pride you feel when you know your child has worked so hard for something. It is truly amazing. As of today though, she no longer "qualifies" as being within typical child range (10-18 months) for walking. But, compared to the average age for walking for a child with Ds, 2.5 - 3 years, she is kicking some serious arse! But, I wouldn't expect anything less from my fiesty little one! O also had her apt with her speech teacher today who said her receptive language is right on with where a typical child should be. We do need to work a bit on her expressive though. Although 12 words and 8 signs is pretty darn good if you ask me!!!
And all of this comes on the tail end of my little fireball turning 3! How did that happen? How do I have a 3 year old and a 1.5 year old? And the craziest part is that the urge for the next one is kicking in! Imagine that! Maybe I should seek professional help! LOL I love being a mom more than anything I have ever done in my life, it is amazing and my kids are amazing. As much as they BOTH bring some challenges our way, I wouldn't trade them for the world. Ok, ok, somedays I have considered it! But then they look at me and smile and I melt into a big puddle of mush.
Can you blame me?






















And of course a pic of all of the loves of my life...

Thursday, January 22, 2009

scratch that last post...

Today is not a day that I am going to have any kind of perspective. I am so far beyond fed up with dealing with sick kids. I would like to go one friggin week without having one of my kids home sick or at the Dr. Honestly, is that really too much to ask? E was home sick Mon & Tues with a bizarre fever and I just got a call from daycare that O has had lose poops and will get sent home with 1 more. that means no daycare for her tomorrow. I could honestly bawl for about an hour. I am just so freaking sick of this non-stop germ infested house!!!
Ok, vent over. I am just not having a good day and I had to crack just a little! ;)

Wednesday, January 21, 2009

Perspective

I am begining to realize in my old age, of 30, that the key to life is keeping things in perspective.

Like the days I think I am a horrible mother...I realize that there are kids that are much worse off than mine. Like poor little Caylee Anthony who's mom is a monster. Like those moms who live in the city and only have babies for the welfare checks who spend the money on $100 cell phones while their kids sit at home and starve or freeze.

The days I think I have it so bad because I have to deal with Ds with O and urinary reflux with E...I remember the parents with a 2 year old who is fighting Leukemia, the parents whose 2 month old little girl is fighting for her life while the Drs can't fix what is wrong, the mom who lost her baby at 8 months gestation who had to bury him, the parents I know who had to bury 2 children, and on and on.

The days I hate my job, certain coworkers, and the environment I work in...I remember those people who are hard workers who have lost their jobs and are despirately trying to find another one in this horrible economy.

The days I get so frustrated with the heating bills, mortgage payments, and daycare costs...I remember that there are people without homes, who can't afford to heat their homes, and those who can't afford a wonderful daycare like we have.

The days I get so frustrated with living so far away from my family (not that 2 hours is so far, but it feels like it)...I realize that there are people who's familys are gone or they aren't close with them.

I do try my best to not let things get to me, because thanks to O, I have realized that I need to count my blessings and realize that I have it good compared to a lot of other people.