Grace's First Year...pause music below and then press play

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Grace is ONE!

Hi Everyone,
Today is Grace's first birthday. We wanted to thank all of you for sharing in her life...it has been an amazing journey so far! Your thoughts and prayers have been so comforting. We wanted to share these two things, we have both of them hanging on our fridge. Grace is one amazing little girl, we are so lucky to have her in our lives!



"Why I was Born" Author Unknown...

I was born to learn and love like everyone else. My body is imperfect, but my spirit needs no help. I was born to give to you, with open hand and heart. I'm the strongest soul you know, though I don't look the part.
I was born to teach you hope, faith, and patience, too. I came because no one else can do what I do. So the next time you think of me as broken, damaged, torn, know that I am here to lift you up...
That's why I was born.




WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

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.

Thanks for all your support, love, and prayers,
Amanda, Beau, and Grace

1 year ago...

It was one year ago today, I was in the hospital on bedrest...it had been 2 weeks so far. We got a phone call at 7am from my doctor asking if Beau was with me. She said she wanted to come down and talk to us about the amnio results. We knew right away that something was very wrong. We waited and waited, and while were were waiting we were looking through pregnancy books trying to figure out what it could be. Nothing could have prepared us for what she was about to tell us about our baby girl. She came in after a long time, with the genetics counselor and my nurse (who was amazing). They started talking and it seemed like forever before they said what was wrong......."Your baby has something very wrong, she is mentally retarded..." That was it I don't remember hearing much else. The worst possible thing was just said...the "R" word. Then I remember, "she may not walk, talk, or ever feed herself. She has Emanuel Syndrome. We have never heard of this before, it is very rare." She handed us some sheets she printed of the internet...yes they didn't have any handouts from the hospital nothing...just from the internet.

They told me I could go home until Grace was born. They didn't need me to stay at the hospital, they wanted me to be with my family at home. The C-Section that was planned that same week was canceled. Both my doctors felt it was important to let my body go into labor naturally, so Grace and I both had the best chance, even though she was breech. Really I wanted to keep the C-Section...lets just get her out, I needed to hold her to see if she would be ok, no more waiting around!

Our families came to the hospital and we packed our things up and left. I couldn't believe this was happening to me. At this point we really didn't even know if Grace would be born alive, or would live long after birth. To be honest, after all we were told we didn't know if we wanted her to be ok after she was born, we didn't want her to have to suffer and have a hard life. So many emotions went through our head. We tried to look information up on the internet, but it was all to much, to horrible to imagine our baby not being healthy. It was like loosing a baby, a baby who was supposed to be healthy and would grow up talking and walking...all of the things kids are supposed to do. We had some difficult decisions to make.

We had a meeting with the doctors at the hospital where Grace would be born. We had to make sure everyone knew what was going on and what we wanted during my labor and after Grace was born. We asked not to have me monitored during labor, we didn't want to know if Grace didn't have a heartbeat, that would be way to hard to handle during that time. We also asked that she not be resuscitated or a breathing tube be placed if she was not breathing on her own. I felt like a horrible mother saying these things, it was a very difficult decision for Beau and I to make.

I was so worried about giving birth because Grace was breech, coming out butt first. But she was small and both of my doctors thought it would be best for me, and an easier recovery with all that I was going through. Two weeks later, Grace decided to maker her entrance. It was an exciting but scary time in the delivery room. I was pretty quiet, worried about the birth and what would happen after with Grace.

All went well, Grace was born, I had no complications and it was great! She was so pale and not responding right away. They cleaned her up and she opened her eyes so big. She needed to be taken to the NICU, but was breathing on her own.

There were many tests done and yes there were things that were wrong, but I had my little girl...and that is all that mattered.

It was all very hard, a nightmare, something I would never wish upon anyone. But the truth is, I would do it all again. In a second. I would go through all of the hurt and pain to have my Grace. She is truly amazing!

Why Can't Life Just be Easy...

Not sure what is going on with me these past few days, I just find myself so sad. As Grace gets closer to her first birthday I can't help but look back at the last year and think of where we were a year ago. I was going through an up and down pregnancy, getting bad news weekly it seemed. Then to find out Grace would not be born healthy...it was a nightmare. But that was only the beginning...we spent months at her bedside wondering if she would be strong enough to pull through all of the crap she had to go through. Finally at two months old, she came home, and what should have been a wonderful day was not, because I was so scared...how would we do all of this...take care of her all by ourselves. Feeding tubes, more than 8 different meds...and if that wasn't enough stress, Grace had terrible colic. She cried day and night non stop, it was not a fun beginning. But the hardest thing is not any of the medical things...it's what comes with the idea of turning one. Walking, talking, sippy cups...and Grace is far from this. Yes, I know that she may never do some of the things that other kids can do, but that just doesn't make it any easier. Things are still not easy today, but are much better, 100 times better. Grace is smiling and "talking" now more than she is crying. She is working so hard on holding her head up. You just can't help but stare at her in amazement and smile. We enjoy all that she can do and love her so much. So sorry I went on and on, but I feel better now. Sometimes I just with life could be easier...not for me, but for my sweet Grace.

10 Months Old Already!

Grace is now 10 months old, we just can't believe how fast time has gone. She is getting so big and has done so many new things in the last month. She is now about 18pounds, getting so heavy. Everyone comments on her rolls. We love them! Grace's 9th month has definitely been the best yet. She has started eating baby food by mouth. Even though she doesn't take much, she does a great job with it. She loves sweet potatoes the best! Grace lifted her head for the first time during tummy time. She likes tummy time a lot more too. We hope it won't be long until she has more head control. Grace has been working very hard on keeping her head up. She has become a much better sleeper, only waking once on a good night. She has also become a fan of the rocking chair, and we don't have to bounce her so often on the exercise ball (Thank God!) No teeth yet, but it won't be long now. We can see one on the top and one on the bottom. This teething thing has not been fun for Grace or mom and dad. Her reflux seems worse because she is drooling more, which really sucks. I feel so bad for her when she is throwing up...she hates it! She definitely recognizes her mom and dad. She will watch us when we walk by and smile when we do something funny. This has been one of the most exciting things. It is so nice to see her smiling so much more. We are so excited and proud of all the progress Grace is making. We look forward to celebrating many more new things that Grace will be able to do...

Grace, you are such a fighter. You work so hard and have come so far. We love you baby girl!
Mommy and Daddy

A fun 4th

We had a fun 4th of July weekend. We went to Grace's first parade...she only lasted about 5 minutes and then fell asleep. We went over to our neighbors for a cookout. We also went up to Lake George camping at my parents trailer. Grace had her first dip in the lake and enjoyed it for a little while.

Grace's Morning Talk...So Happy

Grace was having a lot of fun this morning...(Pause the music below to watch)



Grace's morning talk...