Day 31 HALLOWEEN

WOW! this month went by so fast. Before we know it will be Thanksgiving and then Christmas. INSANE! The month of Down Syndrome Awareness is over today. What do I want to share with you?

Being a parent of a baby with Down Syndrome seemed so overwhelming to me and my husband. First is was what are we doing? Do we know what to do? Can we do this? It is hard enough knowing you might screw up a "typical" human. But to screw up a child that doesn't know you have screwed them up....

Being a parent of a child with Down Syndrome seemed so overwhelming again. This time its: Am I doing what is right for her or society? Am I making sure she has everything she needs to be successful in life?

Being a parent of a young adult with Dawn Syndrome is also overwhelming. I have just started this part of my life. I biggest question is: Should I make sure she has friends outside of family? Should I get her a social life? On and On...

I have some many more concerns than I ever had with my oldest child and so far with my youngest child...

If you are a parent of a special needs child please don't overwhelm yourself because it will all be good for your family and that is all that counts...

Day 26

Bailey is so smart....She comes up with so many things I would have never thought of.

Here is one example. The story is about her hat.......She had cut up her pj pants, which made me not so happy, it was raining outside and she HATES rain. She saw the cut up leg piece. She said "aw ha." (this is when the light bulb came up in her head) Then she proceeded to make a hat out of it. She is so creative and so AWESOME!

Lots of missed Days now Day 25

It is awesome to be 20ish and still be able to be playful and happy. She makes just about everything fun. She is awesome to hang out most days. LOL She has a love for life like no other... She loves the small things and the big things....She enjoys life to its fullest....

Day 21

I have decided to share a picture of each of my children. They are special to me and I wanted to show you what I see in them.

Day 20

Bailey has taught me so much. I think the biggest thing I have learned is patience. You can not be in a hurry with Bailey. If you try to rush her she gets very angry and hard to get along with. When Bailey has something she "needs" to do, it is so much easier to just wait and let her do it. Things will go alot smoother and so much nicer....As you can see in the picture above....Some people say I am to nice and she is walking all over me. However, when I have to mean I am and then I pay for it the rest of the day.....

Day 19th

I have decided to share my thoughts with yall....

Having Bailey at first was confusing, no one I knew had a child with DS. What am I going to do with her? We didn't have myspace, fb or cafe mom. All I got from the Dr. was a book on DS. Not to say that was not helpful but it doesn't prepare you for the near death stuff we have gone through....The school and learning stuff we had gone through...Just the different life stuff that we have to overcome daily....I have to say that I believe there is no book in the world that would or could prepare you for the life you will have with a special needs child...All of the accomplishments she has made and will make are so rewarding to her and us....The first time she rolled over, sat up, crawled and walked for the first time....Some of them even made me cry....Not to say my other kids accomplishments were not exciting, just a different excitement...Sometimes a long awaited excitement for the special need child......

I never had the thought why me...My thought was why her, why not me? I would have been more than happy to have taken the DS for her...Then, at 5 days old she almost died on us and I started asking God to please let her stay and I would take the best care of her I knew how....I pray that he is proud of the job we have done.....We have been doing our best everyday of her life....

I would not have it any other way!

Day 18 DSA Month

Before I gave birth to Bailey or even before I even thought about having kids. If I had had a crystal ball and could look into the future, would I or should I use it? Would I still have picked the life I have or would I have done something to change it? I don't have the answer to this question but I do know this, I would not have been able to pick a better life for myself. Or even a better family for myself. I love my family with my entire self!

Thank You God for everything!

Day 17

WOW! What do I say? I love Bailey and she loves me, most days....LOL She is not only special to me because of the "designer genes", she is special because she is mine...

Day 15 and 16 of DSA month

I want yall to know my daughter can do anything she wants to or puts her mind to...She is awesome...

Day 13 and 14

I am so falling behind. I will try to get better about posting daily. Anyway, here is a poem I received when Bailey was in Hartford hospital, not sure when though.

Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Day 11 and 12 of Down Syndrome Awareness Month

This weekend we spent the weekend in Killeen with Dustin and his Army family. We had a blast! They welcomed us with open arms. It was such a special time for all of us.

I have decided to share a Bailey story with yall. Bailey has a 2 hour bathroom routine in the morning and in the evening. I had told her to go change into her bed time clothes without taking a shower and brush her teeth. Bailey doesn't like her routine being messed with. Anyway, long story short, she was taking forever. So I went up to check on her and she was taking a bath. Next time I know to tell her NOT to get wet.

Day 9 and 10

Sorry about the delay, my Uncle Stewart's memorial service was yesterday and I was there all day. We had several people standing up and saying what their fondest memories were of him. His very first friend from 1st grade was there. That was way awesome to me. There was awesome stories told. Playing football at Thanksgiving and Christmas was told by several people. So this game was for him yesterday.

Here is a poem written for him as well.

Poem I wrote for my uncle stewart: Forever is a long time

To continue loving you.
But family is forever,
So that is what I'll do.
I find it hard to talk to you
Since you went away.
So instead of just calling,
I will kneel down and pray.
I'll pray that you are better now.
And that there's facebook in the stars!
And that you are happy,
Wherever you are.
We'll miss you here on earth.
So until next time my friend.
We'll be blowing kisses into heaven,
Until we see you again.
-ashli n Rosenberg

Day 8 of DSA month

Having a smile even when you are having a rough day. Even when you think a smile is not even in forecast for the day. A smile can make bad things go away and good things come to you.

Day 7

Doing this is making the month move slowly. At least with it moving slow I have time to think of something new to say. Todays is a good one too. Appreciate the small things, even if no one else noticed it/them. Even when someone else didn't think it worth noticing either. Thank God for even the smallest of things.

Day 6 of DS Awareness

I have been racking my brain on what to share today. I wanted to share something very profound but it is just not coming to me. Today, she has been very sassy so it has been hard to say anything nice. Just kidding. I guess what I would like to share with yall today is this: She teaches me patience and grace.

Day 5 of DS Awareness

I have been thinking all day about what I could say about Ms. Bailey and something she has taught me. This is what I have come up with. She taught me not to under estimate a persons ability by the way they look. The reverse is also true. Don't over estimate a person by the way they look.

Day 4

Bailey has taught me the very important lesson of......It is okay to be yourself......Life would be so boring if we were all alike....

Day 3 of DS Awareness Month

Bailey has taught me that we can all live in harmony and peace, when we learn to love each other as the individuals that we are. When we learn to share with others the love we have for others. It saddens me to see all the hate man kind has for each other. What a waste of energy that is!

Day 2

Bailey has taught me and continues to teach me that family is very special and very important, even when they are driving you crazy. Remember to stop and give them a hug and tell them how much you love them.

Day 1 of the DS Awareness Month

My daughter has Trisomny 21 down syndrome. Which means she has 3 of her 21st chromosome. I can officially say she has designer genes! All my children are special to me and I love them each differently.

The one thing I want yall to know about her is that she loves life....