Welcome To Holland

I know most of us Mom's and Dad's of children with Down syndrome have read this already:) I'm posting it for my family and friends .



WELCOME TO HOLLAND
byEmily 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.

First Time I Held Ruby

This is a pic. of the first time I got to hold Ruby.She had already been in the NICU several days. I was trying not to cry, I was so happy to hold her in my arms! She was such a tiny thing!

Children are a gift

JaybirdNWA said...
I am sorry to hear that you feel responsible for your daughter having Ds. If you read enough of the blogs and forums on here, you will realize that children with Ds come to parents of all ages. I realize that this feeling is something that all parents of Ds experience at different times in the process, my wife and I included. But hopefully we all get to the point where we realize that this child is a gift from God for a purpose and she/he deserves the best that we can give as parents. I hope you and your family had a great Christmas.


Ruby's Mom says.....

I was just sharing my experience and how I felt while I was in the hospital.I actually knew some about DS before I had Ruby ,what causes it and the risks for different age women,how children with DS can have heart problems.A girl I grew up with had a son with DS when she was 20 yrs old.
I share my feelings here for myself, it is a kind of therapy for me, but I also share them so other Moms of babies with DS don't feel alone in some of the feelings they may have. Moms tend to blame themselves when things go wrong with their children,we think what could I have done differently,is it my fault? I have had these feelings when I have had a miscarriage and when my first daughter was born premature.

Ps 127:3
Lo, children are an heritage of the LORD: and the fruit of the womb is his reward.

I believe all of my children are a gift from God.My second son's name means, gift of God.
My Ruby is very special to me.I love her with all of my being. As soon as I found out she had DS I started praying for God to help me to be the best parent I can be for Ruby,for Him to help me know how to care for her.

A picture of me

This is a picture of me the morning I was being induced for Ruby's birth.I stayed up late the night before getting ready, putting finishing touches on the receiving blankets I had made for my new baby.
This is a picture of me before my whole world changed and God started teaching me lots of new lessons.
I was looking at this picture last night and thought,you have no idea everything is about to change,after a difficult and scary delivery the nurse is going to tell you,"They think your baby has Down Syndrome."You have no idea how upsetting it will be not to get to hold your baby,to see her gasping for breath,for them to hold her next to you to see her and then take her quickly away so they can give her oxygen and check her heart and maybe send her to a children's hospital close by if her heart is not o.k. To finally find out her heart is o.k. and she wont be moved to another hospital.To wait even longer before you can go to the NICU to see her and when you do see her she is tiny and has lots of wires coming from all over her body.To be told she will probably have to go on a respirator during the night(she never had to,thank goodness).
To feel guilty that your old and gave this to your baby.To have a Dr. point at you and say this Down Syndrome came from you.To just want to rewind everything and make it all different.

This is a picture of me before everything changed.

Ruby's Rattle

Yesterday we were at my brother-in-law's house for a family get together for Christmas.Ruby was sitting in her Aunt's lap and she was holding one of Ruby's rattles for her when Ruby reached out for it grabbed it ,shook it, and put it to her mouth to taste it!!!!!!!! We were all excited,telling her what a good job! OMG, I was so happy!

Ruby went to sleep!

Last night my husband and I and our 5 oldest kids were playing Apples to Apples,so I put Ruby in her baby bed to watch her mobile.Well,she just cooed and blew raspberries and was quite happy for a long while.Then she started her grumbling sounds,you know not really crying just griping,I decided to just let her be because she wasn't screaming or upset.By the time we finished our game she was sound asleep!The first time she has gone to sleep at night without me holding her!Also the first time she has slept in her crib and not in her cradle by my bed!

Michael Buble'

Ruby likes Michael Buble', when she is fussy I play some of his slow songs and she calms right down and goes to sleep! I found one of his video's and added it to the bottom of this blog.I had never seen it before.I think it is just beautiful, at the end it shows how much we all need each others support.

Thank you to our military!

I just want to say a big thank you! To our people in the military who can't be with their loved ones at Christmas and all through the year.My family and I appreciate your sacrifices for ours and other's safety.Thank you to all the men and women who have died all through our history so that we can live and have the freedoms that we have.

Our Christmas

We had a great Christmas despite some of us not feeling well because of a cold.

Here are some pics of our day:

My mother holding Ruby,

Ruby and her Daddy,

Ruby and Papa,

my oldest son and his wife,

my oldest and youngest son in oldest son's cowboy hats,

my boys in their camo they got for Christmas,

my youngest boy and Curious Goerge,and one

of kids and presents.

I hope all of you had a great Christmas,too!

Sickness at Christmas

This is my 7 yr.old daughter and she got up this morning running a fever of 101,runny nose ,and sore throat . SIGH!
It seems like every year at the holidays we get sick.
Maybe Ruby wont get it.

Down Syndrome

I had 10 children before I had Ruby and one of my biggest fears, especially after I turned 35 ,was having a child with Down Syndrome.During my pregnancy with Ruby I felt that she had Down Syndrome.On several occasions when I went to my O.B. he would mention that the baby's heart rate was a little slow(but it was nothing to worry about) and her heart beat sounded different to me,I noticed it didn't sound like galloping horses like the other kids had.My O.B. would mention how small my tummy looked compared to my other pregnancy's.(Ruby was much smaller than my other children except for her oldest sister who was born one month premature).
One evening my husband and I were watching a documentary on PBS about a man with DS ( it was called "Lessons from John") and I kept feeling like my baby had DS .
We also had an incident a few weeks before Ruby was due where my oldest daughter made fun of a man that worked at the grocery store, because his pants were too short and I got upset with her and told her that this man had a mental disability.She felt horrible and I told her to never make fun of anyone.I felt then that something was wrong with my baby but didn't mention it to anyone.
When the nurse in the delivery room told me they thought Ruby had DS, I told her I wasn't totally surprised because I had been thinking my baby had that.
I didn't dwell on it the whole pregnancy I just had certain moments that I thought it.

Christmas Pics.

Kisses

Ruby loves to give her big sister kisses :)

My Supportive Family

I have a wonderful supportive family,they have all made this journey easier for me.Yes, of course when we called from the hospital and told each one of the diagnosis there were reactions of sadness but as they came to visit at the hospital they were so supportive and happy about Ruby(who couldn't be she's so cute!!!! :)) .

My sister-in-law and her husband got on the internet when they found out and found a support group for me in my area,what a blessing! The support group sent me a package containing a book about babies with DS and a folder stuffed full of info ,it was wrapped like a present with a beautiful big bow and I received it in the mail one day, right before I got home from visiting Ruby in the NICU and my children had it sitting on my bed for me, it was such a welcome surprise.

My mother was wonderful when she visited ,she didn't fall apart like I was worried she was going to and she just couldn't get over how prescious Ruby is( I named Ruby after my Mother's favorite Aunt) , thank you Mom for not asking me to change Ruby's name,I have heard of that happening where when the family found out the baby had DS they were asked not to give the family members name to the child .

Thank you to my Father-in-law ( Ruby's Papa) and his wife Sandi (Grandma)for driving so far to come and see Ruby in the NICU, it meant so much to me for ya'll to come.

My pastor is not my family but sometimes I feel he is because I have known him for so long and he has always come to see me when I've had a baby.It was comforting when he showed up and prayed with us and gave words of encouragement.He was shocked when he found out our baby had DS and he didn't hide his surprise from us, which made him even more real to me.

The people in our little church have been wonderful and can't wait to see Ruby each Sunday.

My husband's Mother (Granny) has been great, she helped us and stayed with my kids when we had to stay overnight at the hospital with Ruby.She comes to see Ruby often because she lives close by.

I'm glad I have so many wonderful people in my life.

Ruby and her Papa

Coming Out of the Fog

It seems like since I've had my baby with DS I have lost my patience to listen to trivial things or even watch t.v. Maybe it was just hormones or maybe the shock of finding out my baby has special needs.I'm starting to get over it now.I can listen more patiently on the phone when people call and just want to talk.For awhile I didn't want to answer the phone when friends called because I felt like I was in a different world from them.They don't have the worries that I do.Yes,Ruby is doing good but there are so many things that could happen to her health.Just the fact that she is more prone to get leukemia terrifies me.I try not to think about all the things that could happen,I can't do anything about them anyway.I just have to go day to day and be thankful for her health right now. I'm finally able after almost 5 months to talk on the phone and not be thinking in my head, "Could you just shut up !" if it wasn't something truly important.That wasn't like me at all to think that way. I think I may be coming out of the fog now.

Fabulous!

Lisa at Finnian's Journey gave me this award.I was so surprised!
Now I have to pick 5 others to send it to:

I pick Kari . Tristan is adorable and I enjoy all the pics. Kari posts.

I also enjoy reading Deborah's blog
her story is also in the book "Gifts" and that book helped me so much when Ruby was in NICU . Deborah is fabulous!

Michelle at DownBlogger is also fabulous! I first found her on YouTube I watched a video of her oh,so, cute daughter Ciarra talking and it gave me great hope for Ruby.Thank you Michelle!

Sarah at Class of 2008 always leaves such sweet comments and I like her blog especially right now with all of the wonderful Christmas pics. from her past!I look forward to getting to know Sarah better.

Erin at Adelynn's Journey Her little girl is precious and Erin has a lot of the same thoughts that I do and I like reading her blog.

I have to list 5 Fab. things:
My Lord and Savior
My husband is Fab.!
Little Ruby's wonderful body smile:)
My children.
The Down Syndrome blogging community.

I'm new at this.I hope I did it right:)

Ruby's Family

Here we are Ruby's family.

Reaching Ruby

Ruby can lift her arm up over her body! This was one of the things the PT said she should be doing when Ruby was evaluated at 3 months old.I have been hanging toys over her trying to encourage her.In the pic. she is reaching for the baby monitor,she loves the green light on it, on the windowsill above her.I was thrilled!

Babies Reading

I ordered "Your Baby Can Read" for Ruby.It arrived yesterday and I'm excited to see if it works,of course it will be awhile before I can tell but here is a video of a baby with DS that it seems to have worked with http://www.youtube.com/watch?v=c8hJaxrOsIQ


My other small children like it.I'm hoping my 3 yr.old will be reading soon!

Prayer Shawl

A lady at my mother and father-law's church made this beautiful prayer shawl for Ruby while Ruby was in the hospital NICU.I cried when I received it because it was so touching to know that a lady I don't even know was praying for my baby each time she picked it up to work on it.

Are we special?

When Ruby was born my husband said he had always heard that God only gives special children to special families but he was surprised because he didn't think we were that special.His brother made the same, God only gives special children to special families, comment when my husband called him from the hospital after Ruby's birth. Well, I got to thinking about it and a couple of weeks later I told my husband that statement is not true because if it were true then why are 90 percent of children with DS aborted? Why are they put up for adoption? I think that the child with DS is always special and they are sent here to teach US , if we will let them, but we are not special the child is.

Ruby's Birth

Lisa asked me if Ruby had to have surgery when she was born ,so I'm going to tell a little about Ruby's birth. Ruby didn't have to have any surgery but she did have to have blood products due to the fact that her umbilical cord ruptured(my o.b. said this was very rare,there was also no amniotic fluid left and I had no leakage of fluid before her birth) as soon as she was born so she lost some blood,she also had low blood platelets because of this.She was having trouble breathing so she had to have oxygen for about a week.They kept lines going into her belly button so they wouldn't have to stick her so much and for antibiotics.She had to stay in the NICU for two weeks. She has no heart problems,she did have a small hole that all babies have that closed up slower for her but at her heart check up last month the cardiologist said everything was good.Her heart rate was very low during delivery and they were getting ready to do a c-section when she decided to come on down:)
My O.B. scheduled her delivery just three days before she was due just because I tend to have large babies,if he hadn't delivered her early he said she could have died from a ruptured umbilical cord he has had babies that have died from that but it is rare.So she is such a blessing!

Sign Language

I always want Ruby to be able to communicate with me as she gets older and when I read that children with DS sometimes have hearing issues I started thinking about teaching her sign language. I had already heard about Baby Signing Time before I had Ruby, so I looked into these dvd's some more on the internet and decided to buy the first 2 in the series.I will be buying more because I'm sooooo impressed with the results in my 3,5,7, and 9 year old children and Ruby seems to enjoy them,too.I couldn't believe how many signs my 3 yr old boy is signing in only a month of watching these. They also have dvd's for older children called Signing Time.Here's the website in case your interested http://www.signingtime.com/

Comments

I don't know why my comments are not working,sorry.I'm trying to figure it out.I have it enabled.Hmmmmm

Thank you,to Finnian's journey for welcoming me!

We put up our Christmas tree last night,it was so much fun!The kids have such a good time putting on the ornaments.My 5 year old daughter ran to get her 15 year old brother out of his room so he could come help put up ornaments and she told him,"Come on get in the Christmas spirit!" and then proceeded to say about the ornament she was holding in her hand,"How do you put this stupid thing on anyway!" We all laughed soooo hard!

We sang Christmas songs when we were done decorating.It's fun having a large family.

I'm feeling better about things today.Ruby is such a sweet baby,she is always so happy.I look forward to her big smile every morning when she gets up,she just smiles with her whole body.She never wakes up crying in the morning she starts out the day cooing and smiling at her bumper pads :)


When Ruby was born and the nurse told me we think she has Down Syndrome I started praying right then for God to help me with this special baby,for Him to help me know what to do and how to take care of her, I know he will and is.

Here's a givaway at http://thepoppiesblog.blogspot.com/

Renee at
http://www.myspecialks.com/ is giving away a Christmas apron so go to her blog and comment.
The winner will be chosen via random.org on Sunday, December 14th. It's a beautiful apron!

My baby has Down Syndrome

My baby girl born July 22,2008, has Trisomy 21, a.k.a. Down Syndrome. I love her very much she is so sweet.I didn't know she had Down Syndrome until she was born because I refused the amnio, it wouldn't have changed anything had I known anyway.
Some days I'm perfectly fine with her having Down Syndrome and some days when I'm alone I just sit and cry.I have to be careful about crying because I don't want her siblings to think I'm sad about having Ruby.I'm glad I have Ruby but I wish I could change things for her.I didn't realize how many people hate others with special needs,they think they are a burden on society.I wish Ruby could be like her brothers and sisters,I know we will learn a lot from her but I don't want her to have to be different,I don't want careless people to make fun of her, or to think I should have killed her before she was born!