Monday, December 31, 2012

2012 Don't Let the Door Hit Ya Where the Good Lord Split Ya

2012
Thanks for the memories, the heart ache, the happy times, the wonderful times. 

I learned a lot this year.

January- I turned 35 and my girl went off all of her heart medications, I remember never being so excited.

February- Loving spending time with the kids, it was a time of staying indoors a lot, and we celebrated Valentine's Day


March- Our 10th Wedding Anniversary
April- Our little girl was learning and doing so much.

May/June- We made new friends at the down syndrome association

July- My little boy turned 7

August- My little girl turned 1
September- Hubby turned 38 and little guy started 2nd grade

October- Our First Buddy Walk
November- We spent Thanksgiving at home and I cooked my first turkey
December-  Had a wonderful Christmas together and had lots of Elf on the Shelf fun









Friday, December 28, 2012

MOVE OVER MARTHA

I want to really get organized in 2013, like serious Martha Stewart everything has a place kind of organization. You know the kind of house you walk into and everything has a bin or a basket and every basket and bin has it's own place.  Ahhhhh dream a little dream!!!!
So I began my venture yesterday and got my 16 month old's toys in the living room all organized, love it just have to come up with a better lableling system because she tries to wrip them off.


How do you organize, I would love to hear about your projects?

Saturday, December 15, 2012

Such A Horrible Day

My son walked in the door after school today, threw his schoolbag on the floor, everyday I ask him to please pick up his bag and stop leaving it on the floor.  Today was different, today I hugged him and kissed him and told him how much I love and appreciate him.  There are so many families who will never get to do that again, never get to hug or kiss their children, never help them with their homework, never experience them learning to read, never hear their laughter, never touch their sweet little faces again.  My heart aches for those parents, those people who lost someone yesterday in the Newtown Ct, School Masacre.  My heart aches for those poor little ones who were so excited to be at school, so excited for the holidays to come, so happy in their safe place, to have that all torn away from them.  For the children who survived they too are forever changed, their innocence lost.  I am so sad, so upset as a mother, as a former teacher as a human being.  My heart aches for those poor parents, I pray that they will get through this most horrific time, I pray that they will find peace, I pray that they will live their lives in honor of their children.
I guess we all will learn something from this, I have learned not to sweat the small stuff anymore, love your kids, love them, hug them, let them know what you love about them, spend time with them, enjoy them, because you just never know, you just never know.  God Bless you Newtown, CT!!!!!!

Monday, December 3, 2012

MAKE TIME FOR ME????

So I have begun this dialogue in my head upteen million times, you know how it goes.  I am going to change, I am going to be healthy, I am going to exercise 75 times a day and I am going to have the body I want once and for all, dang it.  Nothing is going to get in my way, nothing except for this thing called life.
Sleep, glorious sleep I seem to be lacking in that area lately, between my snoring husband and my teething daughter, hours of sweet precious sleep are few and far between, so the thought of waking up at 4 am to exercise is not exactly my idea of fun, but I do know that I have to do something, I have to make time to concentrate on my health. 
Somehow, as a mom I get so consumed with everyday life, so stuck in a rut.  I will usually give myself excuse after excuse of why I can't start now, it's the whole I'll get back on track on Monday routine, until I have tried and retried a whole 52 Monday's and if I had only started on Monday 1 where would I be today?
I know I am not alone, lots of people feel the same way. I tend to get overwhelmed with the thought of making time for myself, doing things for myself, it all sounds wonderful, looks great on paper, but when it comes to doing it the guilt sets in, I should be doing something for someone else plays over like a broken record in my head.  How do you get rid of that, it doesn't just go away, it can't, not for a mom, can it?    My daughter needs so much, attention, therapy, how do I take time away from her to concentrate on me, it seems so selfish.  The little time I get to spend with my son, because of school is usually spent doing homework, making dinner, and cleaning.  I do try to spend one day every week with just him, why can't I do that for myself.



I grew up with a mom who worked 7 days a week, who never did anything for herself. So I guess I learned from her that once you have kids you are no longer a priority, no longer important.  I have to work on this mindset because I do realize that it is not healthy, but it is going to be hard erasing these thought and feelings.  What do you think? Do you feel the way I do?  Do you feel the opposite? Let me know!!!!!

Wednesday, October 24, 2012

October 26, 2012- One Year Later

One year ago they wheeled you away on a bed that was way to big for you. I kissed your forehead and promised you, promised myself that I would see you later.  I watched you look back at us, I watched you look back as if to say, where are you going? Why aren't you coming with me?  I didn't want to let you go, I didn't want to let them take you.  I wanted to grab you and run out of that hospital, but I knew I couldn't, you needed to be there, they needed to save you.  A week earlier your health started to fail, you were "failing to thrive" as the doctors put it, the surgery needed to be done as soon as possible.  We were going to the cardiologist sometimes twice a week and to the pediatrician at least once a week, we pretty much lived in doctor's offices.   The holes in your heart wouldn't repair on their own, so they needed to cut your tiny little chest, they needed to put you on a heart and lung machine, they needed to patch the holes in your heart. 
That day was the longest day of  our lives, I can vividly remember every moment of that day as if it was just yesterday.  I remember handing you over to the doctors, I remember screaming inside, but I didn't want you to see me upset so I smiled at you, kissed your forehead and broke down as I saw the doors shut with you on the other side.  There was nothing I could do now, what if you were scared, what if you were crying, what if you needed me, there was nothing that I could do.  You were laying in that cold operating room with all of those machines, you were probably cold, you were probably frightened and I couldn't be there to hold you, I couldn't be there to tell you that it was going to be okay, I couldn't be there to wipe away your tears.  Minutes felt like hours and hours felt like days, not knowing was agony, 8 hours of surgery, 8 hours you were gone from me, 8 hours I couldn't help you, I couldn't save you. 
The doctor's came out dressed in their scrubs, all I heard in the next few minutes was "She is doing good, the surgery went well, and you can see her in a few minutes."  I didn't hear anything else, the explaination of the surgery is a blurr.  I remember thanking God that they saved you, thanking the heavens and anyone else who was listening that you were going to be okay. 
When we walked into your room, I was going to turn around and walk out because I thought we were in the wrong room, it was only when the nurse called you by your name that I realized it was you.  You were so swollen and orange from the iodine, you had so many tubes and wires coming out of you, I couldn't see my baby anymore.  Oh how I just wanted to scoop you up into my arms and love you and snuggle you but I couldn't, it would be too long before I was able to do that. 
The next 8 days would be long and exhausting both emotionally and physically. Daddy and I never left your side. You were doing so well, until they gave you your first dose of morphine.  Your little pink body and face started to turn blue right before my eyes, and you were gasping to take a breath, I heard you inhale then exhale then I didn't hear anything else, you had stopped breathing.  I have never been so scared in my life, Grandma and Grandpa had arrived just as this was happening, I think they aged 25 years before my eyes.  They had to insert the breathing tube again.  They saved you again, they got you breathing again.  The beeps and sirens of all the machines in your room, I will never forget those sounds for as long as I live. They would beep when your heart rate would drop and doctors would come in to check and make sure you were okay. 
I am grateful to all of your doctors and nurses for the wonderful treatment they gave you, they saved your life, they saved our lives, I can never repay them for such a wonderful gift. As the days went on the tubes and wires were removed one by one.  Each and every day you got stronger and stronger. I will never forget the day they nurse told me I could hold you again, they had to tuck all your wires in and hand you to me.  It was so wonderful to hold your warm body against mine again. I was scared you wouldn't know me, I was scared you would hate me for leaving you that morning with strange men and women dressed in scrubs.  But you knew me, and you didn't hate me, you fell asleep in my arms that night, and I have never felt so content and happy in all of my life.
By the 8th day the doctors said you were ready to go home, your little body had endured so much, I was afraid to take you home.  It was such a wonderful feeling walking through those hospital doors knowing we were on the other side, we were going home.



I cried the a lot that week, I cried more tears than I thought was possible.  When we got home it was hard, I was afraid, afraid I would hurt you, afraid you were too fragile.  But each and every day got easier and easier and we got through it all.  You were a new baby, you had become the baby I believe you were born to be, you had strength, energy, you yelled, you cried.  Before the sugery you couldn't cry your body was too weak, so we had never heard you cry, not once.
You began physical therapy and speech therapy in November.  Each and every day you have been proving to everyone just how truly wonderful and strong you are.  You are eating better, you are sitting all by yourself, you are doing the things that some doctors said you may not do.  It is going to take you longer than most babies and you may have to work a lot harder than other babies but that is okay with me.  You take your time, you do things when you are good and ready.  I am so glad that the surgery is behind us, and your cardiologist appointments have become yearly visits instead of monthly visits.  We are thankful that we were able to get through it all even though at the time we had no idea how we would.  We are thankful for our true miracle, our gift from God.

Tuesday, October 23, 2012

Fortune Cookie Soap

Just joined fourtune cookie soap http://www.fortunecookiesoap.com/ soapbox subscription.  You get a box every 3 months filled with some of their products.   I have heard such good things about this company and can't wait to get my first box.  I will do a review of the products when I get them and try them.

Thursday, October 18, 2012

Worries, Halloween, Holidays Oh My

The future looks bright, the future looks exciting, the future scares the crap out of me.  I started to worry again yesterday, which I guess one does when they are a mom.  I am already worrying about my daughter, already worrying about how people will treat her, already worried people will not accept her, worried they will make fun of her, worried they will mistreat her because she is "different" according to their standards.  We are looking to move to a place that has a fabulous special ed program before she is of school age, we thought we were in a great place, but according to her therapists the school district is going to start making things extremely difficult and they are leaning back toward self contained classrooms.  I do not want her in self contained, I want her to be in regular ed, I am a teacher prior to being a mommy and I can see the perfect setting for her in my head and somehow I know in my heart that it is probably not a reality.  So we are looking at different states now deciding what we will eventually do, if you know of any information about your state please let me know.
On a lighter note, Halloween is coming and I couldn't be more excited, my daughter is going to be Minnie Mouse and my son is going to be Boba Fett (some Star Wars guy)  I didn't get to do a lot of things I wanted to do this fall, so I decided I am instead going to get a headstart on Christmas, crafts, gifts, stockings, it is going to be fabulous.  What things have you been up to this fall? What are you looking forward to this holiday season.  Leave me a comment. 

Thursday, October 11, 2012

Our First Buddy Walk

I was so happy to attend our first Buddy Walk this past weekend. We had a very nice time, it's like you get an invitation to be a part of this group that you never wanted but are so happy that you did. All the people are wonderful and we had such a blast walking for such beautiful special people.











Tuesday, August 7, 2012

Happy First Birthday



One year later, I cannot even believe it.  I look back on it now and I think my heart and my mind knew it, they knew that we would all be okay, that I would be okay that I was going to be the best mommy that my little girl could have ever asked for. She knew it, from the moment they placed her in my arms, from the moment our eyes met she knew we'd be okay.  She knew it would be hard, that we would all go through a lot, but this was the very place that she wanted to be, that she needed to be.  She has become part of us, part of our little family, part of the only things and people we need in this world.
People will never understand, people will never get it, until they live it and I am so happy that you chose me and I am so happy that I get to live this life with you, my precious angel.  I have learned so much since the day they brought you to me in that hospital bed.  I have learned that it's all going to be okay, I have learned that we can get through anything we put our minds to, we can do it together as a family.  I have learned that I can be the best mother I can be with you and your brother by my side.  I have become so much more this year, I have become a better person, a better wife, a better friend, a better woman because of the wonder and the joy you have brought into my life.  You came into our lives at a moment in time, a moment in time that I felt pure pain and devistation, a moment in time I wish I could do over, if I only knew then what I know right now. If I only knew how much I was going to need you, if I only knew what joy you were going to bring to my life, if I only knew that everything was going to be okay, I wouldn't have cried so much, I wouldn't have put myself through all the what if's.
I do know this, once that moment was over, I knew you were mine, I knew that I was never going to let you go, I was going to hold you in my arms, I was going to be there for you and we would get through it all together.  You have taught me so much in this one short year, things I would not have otherwise learned had you not come into my life. Real lessons, about life, about love, about trust.  My sweet baby girl, you are turning 1 years old today, and there is so much to be thankful for.  I thank God everyday for giving you to me, for allowing me to be your mommy, and I will be there for you no matter what, today and everyday.  I love you my sweet smiley girl, Happy First Birthday.








Thursday, May 3, 2012

PRODUCTS I WANT TO TRY OR LOVE

I was watching The View the other day and these are what they called the must use products for the
 summer.  I am curious.  I may have to try them all.




This is the only product I have tried so far, L'Oreal Magic Lumi and  I must say I LOVE IT, LOVE IT, LOVE IT, when your skin is lacking in luster, this is the stuff to use, a little bit goes a long way and it magically transforms your face from blah to glowing.  I will let you know if I try the rest of the products and what I think of them.

Wednesday, May 2, 2012

Baby Girl and Big Kid Update

Everytime I look at her I cannot believe how far she has come, from a fragile little thing to a strong, happy baby.  She is trying so hard to crawl, she can get up on her hands and knees but doesn't quite know what to do next.  She is getting a tooth on the bottom, so exciting things are happening and we couldn't be more thrilled.
My son is doing just terrific, he is doing so great in school we couldn't be more proud of him.  He received an award for Tolerance last week and did super on his report card.  So that is just a little update, I am going to try to get back into regular blogging in the next week or so, things have just been very busy lately, but I am going to make an effort to work on the blog every night.  So have a wonderful Wednesday everyone!!!!

Saturday, April 28, 2012

SUMMER BUCKET LIST FOR ME AND THE KIDDOS

This is a Summer Bucket List of things I plan to do with my family and myself this summer 2012, I hope.

1.       Go to the beach

2.       Go bowling

3.       Go to Disney World

4.       Go to the zoo

5.       Make lemonade

6.       Blow bubbles

7.       Finger paint

8.       Water fight

9.       Swim

10.   Make popsicles

11.   Treasure hunt

12.   Birthday parties

13.   Water park

14.   Cookout

15.   Hike

16.   Go to a museum

17.   Go to NYC

18.   Visit a farm

19.   Sidewalk chalk

20.   Make Disney Tshirts

21.   Bean bag toss

22.   Picnic

23.   Parades

24.   Fireworks

25.   Game Night

26.   Write a book

27.   Arts and Crafts

28.   Stormville Fleamarket

29.   Mini golf

30.   Have a 4th of July Party

31.   Make our own Flat Stanley and take him with us all summer

32.   Invite friends over for playdates

33.   Bake cookies for friends

34.   Make a dream board

35.   Go to a new playground

36.   Find a support group for Down Syndrome

37.   Tye Dye Shirts

38.   Read some great books

39.   Manicure & Pedicure

40.   Get a tattoo (maybe I can get the rub on variety- I think I am a little scared to do the real thing) in admiration of my daughter and my son

41.   Ride as many roller coasters as we can

42.   Go to a carnival

43.   Go to a drive inn

44.   Have a pizza party

45.   Have an ice cream party

46.   Get stronger

47.   Succeed at my diet

48.   Do something special with my husband

49.   Get a team together and donations for the Buddy Walk in the Fall

50.   Have a family picture taken

51.   Bake a pie

52.   Go somewhere new

53.   Take a nap

54.   Take D bike riding on rail trail

55.   Have a girl’s night

56. Maybe attend the Down Syndrome Conference if we can make some extra
 money and if the pediatrician says it's okay.

57. Have a yard sale
This a pretty good start I think, I hope I get to do it all!!!!!

Friday, April 27, 2012

I won't do it and you can't make me

I know that my little girl will do things in her own time, she will do all the other things that other babies do when she is good and ready to do them.  I know how far she has come, to barely being able to hold her head up at 5 months old to holding it up just fine now.  I guess I see other babies online that are younger than her that are sitting, crawling, standing, walking even and I start to feel sad for her.  I am not sure why, I mean I know she is just fine and she is not sad about it, I know that when she is ready she will do it.
She has become very stubborn,she will talk and babble while the physical therapist is here, she is really vocal.  But the minute the speech therapist walks over the threshhold, mums the word.  I kid you not, not a sound, not a rasberry, NOTHING.  The therapist tries anything and everything to get her to make some noise, and she's like "Nope, not today lady."  How does she know?  It's like she knows exactly what she wants her to do and she will not do it.  "I will talk when I want to talk lady and I don't want to talk right now, so there"  The minute the speech therapist leaves it's like the flood gates open, and she has so much to say, she really can't contain herself.  It really is too funny, boy am I in for it when she is a toddler, a teenager.

Tuesday, April 24, 2012

SUMMER LOVIN'

As a child summer couldn't get here quick enough, the time between Easter and Summer vacation felt like an eternity.  I remember that was the time I would get to spend time with my parents,  they both worked so it was hard for them during the work week.  But vacation was the best, we usually spent 4th of July in Hershey Park and another week in July in Disneyworld.  It was awsome and I have some of my most fondest memories of those times.
This is actually the first summer in a long time that I am so excited for, I feel like a kid on Christmas or one in the back seat saying "Are we there yet, how much longer?"  I need this summer,I need to go on vacation, I need to be with my little family, I need to escape the reality of therapies and medical bills for just a little while, I need to feel the warm sun on my face, the sweet smell of the ocean, I need to feel the hustle and bustle of amusement parks, I need it now, more than ever.  There is something about summer vacation that instantly brings you back to the time when your were a child, the anticipation, the excitement, I am feeling all of those feelings now and I have not felt them in a long time.  I decided I am going to make somewhat of a summer bucket list, things I would love to do all summer with the kids and my husband and for myself and I hope that I will at least get to do some of them.
Both my kids are summer babies so it will be lots of celebrations, lots of games and parties, and decorations, just lots of fun. 
I know all the responsibilities of therapies and medical bills will still be here but it will be nice to escape into the sunshine and all the glories of summer even if just for a little while. So sunshine and carefree days I am ready for ya, bring it on.

Monday, April 23, 2012

My First Born

My son was born in 2005, I had just finished teaching 5th grade that June, I had just earned my Master's degree and I was having my first baby. It was a wonderful pregnancy once I finished the first trimester, I have never felt better.  His name was supposed to be Joshua or Andrew, but as they wheeled me into the operating room, a song by Elton John was playing, and the rest as they say was history.
I was new at this motherhood thing and there were other people in my life that weren't making this new transition any easier.  I could handle a classrooom full of 20 fifth graders no problem, but this little tiny baby, nothing I did ever seemed to be right.  He cried a lot and nothing I did made it any better.
In those begining mommy years, it was hard for me, hard to give up the career that I had chosen, that I had loved so dear, that had become a part of me.  I had spent the last 4 years working and going to grad school, I left the house at 6 am and didn't get home until 10 pm sometimes.  I missed it, I missed the time I had to myself, somehow I was slowly losing myself and becoming something I didn't know how to be.
As he became a toddler, and became mobile he became a lot happier, we were on a journey together, trying to figure eachother out and I think we definitely succeeded.  Since the moment he was born he has been cute, clever, curious and my little buddy.  He taught me so much that first year of his life, he taught me how to be the best mom I can be, he taught me to be myself, he taught me to laugh and to have fun. 
I have grown into this mommy role quite nicely and I wouldn't trade it for the world, not one second, jobs, careers they come and go but my kids will only be this little just once, I had them and it is my job to raise them, so to those people that are constantly asking me when I am going back to work, or do I think I will ever go back to teaching, the answers are I am not sure and probably not,  I need to be with my kids.  To those moms that have to work and be a mommy, I admire you and honestly don't know how you do it.  I think that we all have guilt and people tend to make us feel guilty, stay at home moms feel guilty because they are not making money and working moms feel guilty that they are not there with their kids. You can't win.  Honestly I am fine about my decision to stay home and so is my husband and that is all that really matters. I love my children and I cherish all the time I am able to spend with them and I thank my husband for how hard he works to enable me to do so.

Thursday, April 19, 2012

Little Man

I can see him growing inch by inch right before my eyes.  His little voice is even changing, where did the time go, seriously where the hell did it go? He was a baby in my arms like 5 minutes ago, I can still smell him, feel his warm baby breath on my cheek. Now that little baby will be 7 in a few short months. 7 when did I become the mother of a 7 year old. 
He is more like 6 going on 30, he is my little professor as I like to call him.  So matter of fact, such a rule stickler, he is, it's so cute.  It will be 7:30 in the morning and and he has to leave for school at 7:35 and he will say, "Mom please tell me I am not going to be late for school."  He is stubborn, very stubborn, has to get the last word in always, can't imagine where he gets that from.
He is gentle, kind and caring when he wants to be, one day when we were sitting in the living room and he says, "Mom I want you to know something, when I get bigger I am going to take care of Leah, she can live in my house and I will always protect her."  I think I cried like a baby that day, he is wise beyond his years.  He knows that his sister has Down Syndrome and that she had heart surgery but you never really know to what extent they really understand, I think he gets it more than I thought he did, I don't give him enough credit sometimes.
He loves video games, not just playing them but creating levels and all of that.  I told him maybe he should go to school for that when he gets older and he in a very matter of fact way told me "Seriously mom?  I am going to be an inventor. I am going to invent a robot that will take care of Leah if I am away on business" That kid cracks me up.

He is my little man and I admire everything about him, his ability to be silly at a moment's notice, his serious nature, his ability to focus, his zest for things.  I call him Buddy, because he is my little Buddy.

Tuesday, April 17, 2012

Family is Important

We had a very busy weekend.  Got to visit with our cousins that we have not seen in a while, it was so nice to spend time together and to watch the kids play the day away, they all get along wonderfully.  My daughter got to spend time with her Godmother, and got to be outside all day. My son got to spend the day with his favorite friend and cousin.

April 14 would have been my Grandmother's 83rd birthday, she has been gone for a year now and I honestly believed that her passing might bring everyone closer together. I believe that family is so important, it is a shame that so many of my family members don't seem to want anything to do with anyone.  They have let years and years go by pretending that they do not need one another, it is something that I wish I could fix but I do not have the power to do so.  It just makes me so sad that my children have so many extended family members many of whom they have never even met.
I know that my cousin and I are going to make an effort to get together more, to get our children together more, because in the end, family is all you really have in this life.

Friday, April 13, 2012

To Blog or Not to Blog that is the question

Sorry for the lack of blogging lately, just haven't had it in me. When I sit down to write I guess I have to feel it, I have to want to write, and I have to feel like what I am putting on this blog is worth everyone's time and effort and I guess lately I feel like people are probably not interested anymore, I am sure there are people that are sick of seeing my blog post show up on Facebook and have even been told so and I quote "Nobody Cares, get over yourself."  So I guess that was pretty tough to swallow, and is probably why I haven't written in a while. I actually thought about stopping the whole thing,
Anyway I enjoy writing and if you don't like my blog or reading the updates than you don't have to read it, it is totally your opinion and you are entitled to it.  So I will resume regular blogging in a couple of days and to the people sending me nasty messages, I am sorry that you think I need to get over myself, but I am just doing something that I enjoy.

Monday, April 9, 2012

BABY'S FIRST EASTER

Yesterday was my little girls first big outing and her first Easter.  With Spring comes, new life, new awakenings, new moments to treasure. We had our first vist to someone's house since August, it was a wonderful feeling and a little nerve wracking at the same time. I can't wait to have many more outings and the chance to make wonderful memories with my little family.


We hope everyone had a wonderful Easter !!!!!

Wednesday, April 4, 2012

Stop Being Fearful

 As my daughter continues to thrive and do things I never expected her to do, as she continues to amaze me each and every day it makes me think about my own self and expectations for myself.  If she can get through all that she has and then some, surely I can accomplish my own goals that I have set for myself.  I have already accomplished a lot in my life but now I seem to come up with too many reasons of why I can't do this or shouldn't do that. There is always money which is a legitimate reason of why I cannot accomplish things.  I would love to start my own party business, where I would make all the decorations, invites, paper products, etc, but one needs money to start such a business, so my head fills with all of these wonderful ideas of what I would create, what I would sell, how successful I would be but then the negative thoughts flood my mind (the you would have to make a lot of things to take pictures of and the things require supplies, which requires money and so on and so forth,) it is a neverending snowball effect. I want to learn photography, to play the guitar. to do all sorts of things but my thoughts get in my way, paralyzing me from moving forward.  To me all of these things are wants, not needs and are therefore frivolous.
I have fears, fears that linger in my heart and my soul, fear of things going wrong, fear of the rug being pulled out from under me as it has so many times before, the fear of the unknown.  I hope and pray that these fears subside in me, but after being hurt and having horrible things happen, I fear that it will always be that way, the fear has made a permanent dwelling in my being, it lingers there and feeds off my feelings of dismay.  I often wonder what it feels like to be carefree, to not have a worry in the world. I guess my first step is to stop being fearful, but how to do that is the question.

Thursday, March 29, 2012

Don't Feel Sorry For Me

We got our first look today, it was probably the second or third time that I have taken her out since she has been "allowed". I had to go to the doctor so I took my little princess with me.  There in the waiting room with a "normal" baby, probably about 2 weeks old, and screaming her head off, the mother kept glaring at me and then at Leah, giving me the phony, I pity you smile.   She gave me the look, you know the look, the "Oh I am so sorry that you didn't have a normal baby like mine look," the "oh you poor poor thing look," the pity look.  I have been waiting for the first time this would happen, expecting it to hurt like hell, to make me burst into tears, but ya know what it didn't do any of that.  It really pissed me off actually.
I don't need your pity, I don't need you to feel sorry for me or my baby.  She is going to do things just like any other baby just in her own time.  She has been through more in her short little life, than any "normal" baby will experience in a lifetime.  She is brave, she is strong, she is determined, she will do whatever she puts her mind to, so no do not pity me, do not pity my family, do not pity my baby, she will surprise this world, she will prove everyone who tells her she can't wrong.  And to people who give those looks to mothers like me, keep your pity for someone who needs it, because I do not need it, there is nothing in my life to feel sorry about, my life is better because she is a part of it, I wish for everyone to experience that kind of love just once in their lives, and then you will understand, then you will never look at me like that again.

Tuesday, March 27, 2012

Money Makes the World go Round

We played the Mega Millions tonight, maybe we will hit the jackpot, wouldn't that be nice.  Over 300 million dollars, I don't even know what I would do with it all, I probably would give 25% or more of it to St. Jude and Maria Ferreri Hospital, pay off our medical debt. I would donate a large chunk to the Down Syndrome Association.  I would pay off my parents' house for them, help other family, I would help those who have been there for us and helped us, I would buy a house, travel a lot and my kids would be set for life.  I would love to go to a homeless shelter and just hand out thousands of dollars, I would love to help everyone. I would take all kinds of lessons, music, art, photography, anything and everything. I would be home with my kids and stop feeling so guilty that I am not earning a paycheck. On a more selfish level I would hire my own personal trainer and chef to help me lose this weight once and for all.  It would be nice to know that we will be able to spend lots of time together as a family and not have to worry. Dream a little dream.

What would you do with $300,000,000?

Friday, March 23, 2012

Springy Spring

So it is Spring and we are allowed to leave the house, FINALLY.  It has been a very long almost 8 months of being stuck in the house.  So now that she is free to go out, I am afraid to expose her to the world, afraid of the stares from strangers who are ignorant, afraid of the germs out there, afraid of the unknown.  I know that I can't protect her from everything but I am her mother aren't at least supposed to try.
So I will take her out and face my fears head on, there will always be germs and there will always be ignorant people, so I guess we will take the good with the bad and live our lives to the fullest.
Happy Spring Everyone!!!!!

Wednesday, March 21, 2012

Happy World Down Syndrome Day

Although she doesn't know it yet today is a very special day for my baby girl and for so many babies, children and adults like her.  It is a day to celebrate the 3rd copy of the 21st chromosome, 3-21 is World Down Syndrome Day. It is almost 8 months later since I brought that precious little blessing into the World, she is such a blessing and a joy that the whole world wants to celebrate her and others just like her.
8 months ago I never would imagine that today I would ever be celebrating a day such as this and I am embarressed to say that I never knew it existed.  So I feel like it is my life's chore to make people aware, to make them see just how special and wonderful my daughter is and how special all people are with Down Syndrome.  As my baby girl gets bigger we, will do something special on this day each year but for now I will just love her, and give her extra hugs and kisses for truly making my world a better place.

Tuesday, March 20, 2012

I'm A Guest Blogger

I am a guest blogger for Down Syndrome Day on a blog called Bookaholics, go check it out.
http://bookaholicsbkcl.blogspot.com/2012/03/not-what-i-expected.html

Thank you to Mist @ Bookaholics!!!!

Monday, March 19, 2012

Stop Being Judgemental

Down Syndrome Day is March 21, 2012.  I can't imagine my life without my little girl in it and I feel that my life with her is better than it was without her.    I think I had a hard time when I first brought her home because it was the constant questioning from people, "Didn't you know before you had her?"  No I didn't and if I had it didn't matter in the least I was keeping my baby no matter what, I was giving her the chacne at life that she deserved.  I think what I want people to know is that no matter what diagnosis your baby has, he or she is still a child, he or she is still a life and they deserve everything that life has to offer.
I know that people will never ever understand until they have walked a mile in my shoes, you will never know the love I have for my children, you will never know what it is like to have a special need child unless you are living it.  So my advice for this Down Syndrom Day, would be please do not judge me, my baby or my family.  If you don't understand please get informed, there is plenty of information available and I would be happy to put you in the right direction.  So I guess what I mean is, do not question or judge until you have all the facts and until you have experienced a day in my life.

Friday, March 16, 2012

10 Years Together

It all started in an internet chat room on AOL 14 years ago.  Then we started chatting on the phone every night for hours.  Then we decided that we should meet face to face. I was attending college in NYC so I planned for us to meet at the Disney Store on 5th Avenue, it was as public as you could get, you can never be too careful in these situations.  I stood there waiting for him and slipped inside the store wanting to chicken out, I thought to myself, "this guy is never going to like me, I should just leave now."  But I changed my mind and thank goodness I did. We met when I was 21 and have been together ever since. We were engaged in December of 2000.We were married in March 2002 and went to Disney World on our Honeymoon.  We made it to our 10 year anniversary, we have had our many ups and downs, we have overcome some of the hardest obstacles in our 10  years together but we have managed to pull through together. I am so glad that he found me that day on the internet and that we decided to meet.   We have created wonderful memories together and have had a beautiful family.  I don't know where the road of life is going to take us in the years ahead but I do know that no matter what life throws at us we are going to get through it all, together.  I know that no matter what, I have a partner and a best friend who will always be by my side as we continue this crazy life together. He is the best father I could have ever chosen for my children and a wonderful husband.  I appreciate everything that he does for me and our kids.  Happy 10th Anniversary to my best friend for life.

Wednesday, March 14, 2012

If I Knew Then What I Know Now


If you could go back to right before you had your baby with Down Syndrome what would you tell yourself?"  It got me thinking about the question what would I tell myself if I knew then what I know now. I would say that something is about to happen to you, to your family, something that you are not prepared for but it is going to be okay, it is going to be fine. A wonderful little girl is about to enter your life and she is going to make it a brighter more loving place to be.  I would tell myself I know you are scared, I know you blame yourself and it is okay to feel these things but know deep down that God chose you to be this little girl's mommy for a reason, he knows you are strong and loving and will be there for her no matter what. She needs you, she needs your love, she needs your help, she needs you to just love her, love her for who she is not for who she was supposed to be or may never become. I would say she is not what you expected, she is so much more.  She is going to teach you things about life that you took for granted or never understood before.  She is going to teach you how to appreciate life and how to love. I would tell myself that because of this little girl you are going to be a better person, more giving, more caring, more loving.  You are going to be all that you can be all because of her. She is going to be s joy to your family. She is going to make your family stronger.
Don't be scared she is going to get through the heart surgery and amaze everyone.
She is going to amaze you with how much she can do.  She will do so much more than the experts tell you she will do. I would tell myself that I am stronger than I know and that she is stronger than I can ever imagine and we will all be alright. I would tell myself that you will love this baby girl more than you can possibly imagine.  She will teach you to love better to hug harder and kiss longer.  She is going to change your whole world as you know it and make it even better.  You will appreciate how precious life is.  The road ahead might be scary because there is so much more that is unknown but don't worry about what you don't know, just love her and she will love you back.  Enjoy life in this very moment, enjoy each one as they come and cherish them.

Tuesday, March 13, 2012

PT and After School Activities

So my little guy is trying his hardest to find an extra-curricular activity that he will enjoy.  Yesterday we tested out karate, in the car he said to me, mom I am not sure that karate is for me, I didn't really have too much fun.  So onto the next thing, in search of swimming lessons that do not break the bang because as he put it, "I think swimming is my thing mom." Okay if you say so,  he was so cute in karate and he did really well for his first try, do I make him do it anyway or just keep trying to find something that fits him.  Hmmm.  Little Miss is doing really well at her PT, getting stronger everyday.

Monday, March 12, 2012

ZZZZZZZZZZ

So we have been lacking in the sleep department lately.  Little Miss has decided that sleep is not an option at 2 am- 6am and really does not feel the need to nap during the day, I think that she believes that she is truly going to miss something super important or monumental. So I have tried the cry it out method, I have tried lying in the room with her, either way she will not nap, I take that back she napped the one day I just let her cry it out but I feel terrible letting her cry but I know that at 7 months old she already knows this.  Why do you ask? Well when I walk into the room as she is "crying" and I use quotes because there are no tears and suddenly she has a big ol goofy grin on her face, so I do see an academy award in her near future, because she totally has her mommy wrapped around her little finger and she knows it.  So what have you done to get your babies to nap or sleep through the night, this tired mama can use some advice.

Friday, March 9, 2012

Mish mash

My husband's mom made him something they called Friday night Mish Mash when he was a kid or something like that, anyway it was a meal with a little of this and a little of that in it.  That is what this post is, a mish mash of all sorts of things .Sorry about the lack of posts lately, I have been so tired.  Little Miss has decided that sleeping through the night is no longer an option, so we have been up at around 3:30am every morning.  I guess it could be worse, she could be getting up several times a night.
My weight loss is at a stand still, I gave up the gym because I was only getting there once a week if I was lucky the past couple of weeks, so now it is all about the DVD's at home.  I ordered a new workout system called Turbo Fire, it looks really hard, but I think I can do it if I stick to it and at least I can then do it anytime I want during the day if Little Miss is cooperative or at night when hubby gets home.
I have moved my craft room from the basement to Little Miss' room, she is still sleeping in our room so I decided to use the space in her room, for now. I was never able to get down there to work on Scrapbooking and my new project baptism decorations, so now I can work in a nice space with more light and heat, always a bonus.  I will have to post a picture this weekend of my fabulous crafty space.
Hmm what else do I have to share,  I realized today that I need all new makeup, I probably have been using the same stuff since I was pregnant with Little Miss, I think I am going to go back to using Bare Escentuals it makes my skin look great.  So I will be saving my pennies to get myself some.  I think I will do a post about all of my favorite things, so look for that in the coming days.  So TGIF, hope everyone has a fabulous weekend!!!!! Please spread the word about my blog for me, get others to follow, thanks.

Wednesday, March 7, 2012

7 MONTHS



7 months old today, and I will say it again, I cannot believe I am sitting here now, remarking on this wonderful day and how truly far we have come.  Sitting in her hospital room watching a machine breathe for her seems like a distant memory yet as if it happened yesterday.  If my being today could talk to me 5 months ago, I would tell myself not to worry, not to fret, not to shed any tears but happy tears, because you are going to be alright, you are all going to be just fine.  There is light and happiness at the end of this gloomy tunnel waiting for you, just be brave, be strong and it will all work out in the end.
A friend told me while I was in the hospital with my little girl "You are going to look back on this months from now and wonder how the hell you got through it all."  Well friend today is one of those days, how did I get through it all, how did she get throught it all, how did our family and friends get through it all?"  Strength, strength I never knew I had, bravery I never knew was inside of me.  As I look at her today rolling over on her belly, so alert, so strong I can't even beleive she is the same baby.  She went from the baby who slept 22 hours a day, to the baby that refuses to take a nap, she went from a baby who hardly ate an ounce of food to eating and drinking all the time and getting excited about it.  She was the baby that never cried and now boy does she let you know, when she's happy, hungry or just wants to have a chat.
So to all those moms and dads that are going through what my family and I have gone through, be strong, there is hope, there is light at the end of the tunnel, you just have to work really hard to get to the end of it, and on the other side waits a beautiful life with a beautiful baby who really just wants to be loved and cherished.

Sunday, March 4, 2012

Noises, and Sounds and Math Oh My

Ma Ma Ma, Ba Ba Ba, Da Da Da.  These are the sounds that we are trying to get our little girl to start saying.   She does a whole lot of yelling lately and sometimes seems to utter those sounds, but I cannot be quite sure.  As they tell me that we should be hearing more of those sounds from her I start to worry because we are not really hearing them often or at all for that matter.  I keep telling myself that she will do it eventually, she will make those sounds when she is good and ready, but it is still hard waiting and hoping that she will do all the things that she is supposed to.  I do know this the day I hear her call Mommy or Daddy will be the most wonderful day and I can't wait for it.In other news I have discovered that my son is quite the math whiz, he keeps bringing home fabulous grades and I couldn't be more proud of him.

Friday, March 2, 2012

Appointments A Plenty

Physical Therapists, Speech Therapists, Specialists, oh my.  Never did I dream of any of this when I was pregnant with my little girl.  Although all the appointments and doctors can be so overwhelming I am glad that I had her during a time when there is so much available to her and so many people willing to help her. She attracts people wherever we go, she has such a bubbly little personality that people just flock to her.  I admire that about my little girl, at only six months old she has the ability to light up an entire room.  I love her so much.  I hope everyone has a fabulous weekend. Don't forget Down Syndrome Day is coming soon, do something special for someone you know who has Down Syndrome or has been affected by Down Syndrome in some way.

Wednesday, February 29, 2012

My Place In This World


When you are in the midst of having a baby you are submerged in it, surrounded by it, you eat breathe and sleep all things baby.  You dream about the little girl inside you and you think about all of the things you are going to do with her, all the pretty clothes you will dress her in.  When you awake from that dream into what you believe is your life's biggest nightmare at the time, "Your daughter has Down Syndrome and will need open heart surgery."  This was certainly not the dream, not the hopes, not the wishes that were had and made upon shooting stars in the night sky.  This was happening to someone else, certainly not me, how could it, I am young, I did everything I was supposed to do, I did everything right.  How did this happen to my little girl, how did this happen to me? Then someone sent me something, a beautiful poem.  I read it and at the time didn't really think much of it, just thought it was some other way that people were trying to make me feel better, people who didn't understand.

The Special Mother
by Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of disabled children. Did you ever wonder how mothers of disabled children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a disabled child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

I read this again today and I cried harder than I have cried in months, I understand it now, I understand my purpose in this world, to be the best mom that I can be to both of my wonderful kids.

Tuesday, February 28, 2012

I THINK I CAN, I KNOW I CAN


It is hard to believe where we have been and what we have accomplished in the past few months.  My little cookie will be 7 months old next week.  In her 7 short months of life she has overcome more hardships and obstacles than most people do in a lifetime and she has done it all with no complaints and a gummy grin on her little face.  This morning I realized during her weekly physical therapy sessions just how far she has truly come and I could have just burst in to happy tears.  She is doing all of the things I questioned that first night in the hospital after giving birth to her, would she do the things baby's did?  The answer is a triumphant YES.  She is doing things that other baby's do and then some, only she is doing them at her own pace, the pace she sees fit for the moment, maybe she will stay at this slow and steady pace, maybe she will speed things up, we may never know, for it is all up to her.  As for now I am at peace and so proud of my baby girl and the progress she is making, can't wait to see what she will do next.

Monday, February 27, 2012

At Her Own Pace


Babies with Down Syndrome are often signifigantly delayed when it comes to meeting all of those baby milestones.  It is hard as a mom to see other babies around my daughter's age and not say "oh she/he's crawling, talking, standing etc." 
Little Miss will be 7 months old and has just mastered the art of holding her head up while on her belly and rolling over from back to tummy and tummy to back.  She is doing really well for a baby with down syndrome according to the Physical Therapist, but it is still really hard.  I sit and think when will she crawl, when will she stand, when she will walk.  I know that she is doing the best that she can for a little baby who has been through all that she has been through.  She will do all the things that other babies do, just in her own time.  A friend sent me this creed that put it all in perspective for me.

Down Syndrome Creed


My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace


I think this pretty much says it all.

Friday, February 24, 2012

Able Not Disabled

People with Down Syndrome have their own unique talents and abilities just like everybody else.


I worry a lot lately, I worry about her, I worry about me, I worry about my little family, all the what if's go streaming through my head while I lay awake at night. I am a worrier, it's just what I do.  But I look to other people's success stories and triumphs to get me through the tough times.  I hope that my blog does that for at least 1 person.  Hope everyone had a wonderful day.

Thursday, February 23, 2012

More Alike than Different

Children with Down Syndrome are often fully included in social and educational settings and often go onto graduate High School and attend post secondary education programs. Celebrate these achivements on March 21, National Down Syndrome Day.

When I first had my daughter I worried and still worry about so many things, will she be accepted, will other kids be friends with her, will she talk, will she walk, will she learn, will she know things, will she fit in, what kind of person will she be, what kind of relationship will I have with her, will she want to do things that other little girls like to do with their moms.  It helps me so much to see all the stories about kids with Down Syndrome who go on to live wonderful, fullfilling lives.  Won't you help me spread awareness about Down Syndrome, follow and share my blog.
Visit http://ndss.org/ to learn more about Down Syndrome.

Wednesday, February 22, 2012

RAISING AWARENESS




World Down Syndrome Day takes place March 21st every year. The date 3/21 represents the 3 copies of chromosome 21, which is unique to people with Down syndrome.

I thought I would use the next month leading up to March 21, 2012 to talk about Down Syndrome and give you all a look inside what this disorder is and the impact it has had on my life and the lives of so many others.
So read my blog and spread the word about Down Syndrome.

* Did you know that 1 in every 691 babies are born with Down Syndrome and 80% of these babies are born to mothers who are under the age of 35.

When I had my daughter I was under the assumption that only women who had babies past 40 had babies with Down Syndrome, I never knew it was even a possiblitly for me. But she certainly proved me wrong and has enlightened me and taught me so much so far.

Help me raise awareness about Down Syndrome and celebrate my daughter and people with Down Syndrome this March 21.

Monday, February 20, 2012

Busy Weekend


So I spent the day out with my son yesterday and met with a friend I have not seen in a while, it was great fun and very much needed. We are also in full baptism planning mode, invitations are made by yours truly and addressed and ready to send.  Dress is purchased, decorations purchased (some, most I am making myself)  I can't wait for everyone to be able to meet my little princess. Hope everyone had a fabulous weekend, mine was busy just like I like them to be.

Thursday, February 16, 2012

Dolce Far Niente

"Dolce far niente" - the sweetness of doing nothing. Eat Pray Love

I like to repeat this to myself, it sounds so much sweeter, so much more intense in Italian than it does in English.  Say it to yourself, go ahead, you know you want to.  Now wait for it, don't you just feel relaxed, don't you feel like you should go eat an italian pastry, sip a cappucino while overlooking  Il Po.   Sometimes I like to indulge in this idea of nothingness, this tale of oblivion.  I long for this sweetness, I can smell it's sugary enticement, I can feel it's syrupy goodness embracing me, I can hear it's melodius call, "Dolce far niente." Can you hear it? 
This kind of idelness does not exist in a field of flowers, in a deep blue sea, or in a forest full of redwoods, it exists within you, and me.   It is taking pleasure in a moment, the present moment, wherever it may be.
What does doing nothing mean?  Do you just lay on the couch, sit in a chair, listen to music, relax???  Although the thought of doing absoulutely nothing for just moments at a time sounds so inviting, I wouldn't know how to do it.  I don't know how to do nothing, I don't know how to relax.  I am always doing something, thinking about something, I cannot just empty my brain and just rest.  So I would love to get in touch with this part of myself, learn to clear my mind, learn to enjoy my own prescence, learn to just be and have that be enough.  I am learning that to do nothing can mean just being with myself in my own prescence, drinking a cup of coffee, tuning out the world for just a few minutes, just a moment each day to listen to what your heart is telling you.
How do you relax, how do you like to experience "Dolce far niente?"