Great Friends and Disney Fun

We had a wonderful 4 day weekend.  We went to Disney World with some great friends from NY and had a blast.  Disney is a great way for us to spend family time together, it is a way for us to unwind, to have lots of fun, have some great food and get A LOT of exercise.

It was so nice seeing our friends and spending time with them and their kiddos.  Fun was definitely had by all.

I will miss them but look forward to our annual meeting in Disney World.

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.

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!!!!!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?"

HAPPY VALENTINE'S DAY

I hated Valentine's Day when I was a teenager.  I never had a boyfriend, and was often reminded by family members that I would never have a boyfriend unless I lost weight first, but that's a whole other blog post.  Anyway I remember being in High School and someone making me believe that a boy actually liked me, ME? REALLY? I remember her giving me chocolate and a flower from this said "boy," and telling me that he was going to ask me out, blah, blah, blah.  Anyway I was always very leary of people and was always waiting for the other shoe to drop because I had been hurt many times before.  Anyway, I started to actually believe it, she was very convincing I must say, she even got other people in on it.  On Valentine's Day of Freshman year I found out it was a big ol lie, I was crushed, crushed because someone who was supposed to be my friend lied to me and hurt because of course he didn't like me, boys didn't like girls like me.
When I was 21 I met my husband and he started doing the most wonderful things for me on Valentine's Day.  He always makes me feel so loved.  So I guess as a young girl I didn't know how nice Valentine's Day could be when you share it with someone you love. As a mom I also love sharing Valentine's Day with my kid, giving them valentines and extra hugs and kisses.

Why Do I Blog?

Someone asked me the other day why do I blog, don't I find it tedious, why would I want to let people know that my child has Down Syndrome, aren't I embarrassed?  When I had my daughter the first thing I did was go to the computer to try and learn as much as I could about Down Syndrome, I wanted to know everything. To my surprise I found out that 90% of Down Syndrome babies are aborted, 90% that was astounding to me.  Then I looked to find people who were raising kids with Down Syndrome and I saw how happy they were, how lovely their kids were.  I knew how much happieness and joy my daughter gave me and continues to give me each and everyday and I thought if people could see that maybe they would think twice about aborting such a special, wonderful child.  So when people ask me such questions, I usually don't answer them but this one I felt the need to answer, I am not nor will I ever be embarressed by my child, she is pure love and joy and I hope by reading my blog you can see that.
I also blog for other reasons, I love to write, it is my me time, when I can just sit down and write whatever I want for a few minutes of the day.  I use it as somewhat of an outlet, I enjoy helping people, giving advice, sharing information, talents, recipes, etc.  So I hope that you all enjoy reading it as much as I enjoy writing it.

Soups On Saturday- Recipe for a Happy Marriage

Recipe For A Happy Marriage Poem
4 cups of Love
2 cups of Loyalty
Dash of Faith
3 cups of Kindness
4 cups of Understanding
1 cup of Friendship
5 spoonfuls of Hope
1 barrel of Laughter
Pinch of Forgiveness (no substitutions)
Dash of Thoughtfulness (not optional)
Take love and loyalty and mix thoroughly with faith.
Blend in kindness and understanding, add friendship and hope.
Sprinkle abundantly with laughter. Garnish with forgiveness and thoughtfulness.
Bake with sunshine.
Serve daily with generous helpings.

Someone gave me this poem for my bridal shower back in 2002.  At the time I thought it was nice, now that I look at it today, it is very true and everyone that is married should live by it.  My husband and I have had our ups and downs, we have gotten through a lot in our marriage, most of which we thought we never could. Getting through the birth of our daughter and her surgery was probably one of hardest things we have ever experienced in our lives.  With lots of hope, faith and love we got through it together.  So give your hubby or wife an extra hug or kiss or both today, let them know you care.  Happy Saturday everyone.

Life is a Special Occasion

"Life is a special occasion", don't you just love that.  I was watching TV yesterday and the Hallmark commercial was on and this is Hallmark's motto, and I think I will use it in my own life. Since our little girl entered our lives I think my attitude about life has changed.   I always felt like I wasn't living my life, I always felt like I was waiting and waiting and waiting to enjoy my life.  I always tell my husband that I never felt present, like I was always saying ......"when we do ____________, then we can enjoy our lives."  What if __________ never happens?  Then I will have wasted all of that time waiting for something to happen that was never going to happen in the firstplace.

I need to stop living my life in focus of the big picture, yes I would love more than anything to do certain things in my life but right now I have to put my attention toward my children.  I know that certain people look down on me because I gave up my career to raise my children, but for me it was the best decision I have ever made, all the moments I would have missed, all the things I wouldn't have seen or heard, I cherish each and every moment I have with them. So treat life like a special occasion, make the most of each moment, I know how hard it can be when you have people judging you for your decisions, when you are hard on yourself.  I am doing my best to treat each and every day of this crazy life as a special occasion, and really making a big deal of those real special occasions.

Wednesday

Wednesday is probably my least favorite day of the week, when I was a child I always spelt it wrong, it's considered hump day which never sounds very nice.  I guess it's smack in the middle of the week, kind of borning, kind of ordinary, not the humdrum of Monday or the Thank God it's Friday, not the laid backness of Saturday and Sunday but just plain ol' Wednesday.  I am Wednesday, plain, pretty boring, pretty predictable, I have friends who are definitely Fridays, you are thankful when they come around to kind of spice your life up a bit. So here I am on Weight Loss Wednesday, how fitting.  I am down almost 11 pounds but just losing my ooomph, I am still trying to get back into a regular exercise routine but I have been so tired lately, that by the time hubby comes home I just want to lay back relax and go to bed.  I have to start shaking things up a bit or I am going to lose my steam.  I happy that the scale is going down, but I just want to start feeling stronger, I want to be strong and fit.  So after I nurse myself back to health, battling this headcold, it is back to Zumba and Walking, also want to start lifting weights.

My son is a Thursday in my life, he likes to get silly and crazy at times but likes to stay close enough to the seriousness of Wednesday. I have decided that my daughter is definitely a Friday, she came into our Wednesday kind of world and has shaken us up a bit, she is the spice of my life most definitely. So here's to letting Friday into your life and changing things up a bit.

Birthday Party Planning- Happy Monday

I am in the midst of planning a 1st birthday and a 7th birthday, 2 birthdays, 1 party and a good time to be had by all.  I wanted to do a big party for my daughter's 1st birthday but my son has been such a great big brother that I want to include him in it as well. So since they both are summer birthdays we will have one big celebration.  We will have so much to be thankful for and so much to celebrate.  It is going to be a circus/carnival theme, so if anyone has any ideas let me know.
I think I have said this before but I love planning kids' parties, people always say I should do it for a living, we'll see.  Let the birthday planning begin.